JoeJack101
12-24-2004, 01:41 AM
I am an 18 year old male with an extremely rare medical situation that nobody understands or cares to listen to or believe. My body for some reason is extremely sensitive (and I mean EXTREMELY) to drugs and ESPECIALLY herbs (that have any medicinal uses/properties). This conclusion is not based on coincidence or one experience or one set of herbs or drugs. Understand that I am a very intelligent person, and I am very logical. This is not at all a phobia or psychological problem. Most of us don’t realize or care about how many products there are out there that have herbs in them (that are known to have medical properties). The rapidity of an herb being absorbed through even my SKIN is as instant as a tranquilizer hitting a cheetah. I can recall one (possibly two) instances where I was convinced I could easily die due to intentional exposure to an herb (This was during a time where I was convinced I was normal and I didn’t have a sensitivity to herbs/drugs.) This world just doesn’t understand. I need to know what doctor to see, and where to go. Another problem is that my parents don’t have too much money, so aside from what medical insurance covers; I doubt they are willing to spend too much on “experimental” tests, etc…. Somebody please help me, and don’t just reply and say “calm down” or “don’t worry about it” or “see a psychologist/psychiatrist.” If only you knew how many hours of my life have been wasted on this problem. I just want to be NORMAL… Is that too much to ask?
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ILikeRats
12-24-2004, 02:24 AM
I work at a health food store, and sometimes there will be a customer who has a significant reaction to something homeopathic (meaning it contains the active substance in only parts per hundred, per thousand, or per million), and I want to tell the person to talk to a psychiatrist, because I just don't believe someone's body could be that physically sensitive to homeopathy. Herbs, however, are different. I can believe you could be ultra-sensitive to certain herbs. Your post doesn't give enough information, though, such as why you think you have this problem (what sorts of symptoms you've had and the type of exposure that's caused the symptoms, which herbs you've reacted to, etc.), and if you don't mind my asking, why do you think you need to "fix" this? People with peanut allergies, for example, cannot be cured, but they simply learn how to avoid exposure and live a normal life. Please give more information.
JoeJack101
12-24-2004, 12:28 PM
I have reacted severely to herbs in hair products (in other words been extremely sensitive to the effects of them); also I have had specific reactions to herbs like Siberian Ginseng, Panax Ginseng, Tribulus Terrestris, Avena Sativa, Muria Puama, St. Johns Wort, and Ginkgo Biloba. Panax Ginseng made me extremely jumpy and hyper, like I couldn’t make myself shut up and stuff, it gave me rapid heart beat and/or high blood pressure, and I was unable to get any sleep two maybe three days after my exposure to it. I have also had severe chest pains when Minoxidil (Rogaine) had contact with my skin. I have tried a number of drugs to treat acne and continuously had side effects with each one. The worst experience to date has been the MINIMAL exposure (and by that I mean TOUCHING the smallest amount you could possibly imagine) to Muria Puama whose effects only went away when I would “release” but came back very quickly and wouldn’t go away. It was HORRIBLE. Also, it caused behavioral changes. I had to miss school because of it. When you “notice” an effect (like that of my experience with Muria Puama, for example) that will barely go away for a couple seconds here and there, but it stays with you for like hour after hour, you never forget it. The reason I mention that one is because it is one with a more precise reaction. You may wonder why I would let myself be exposed to an herb like that, but I never thought it would do that and I was still believing I wasn’t any different than anyone else. To this date I have not had any severe reactions to prescription drugs although I am not sure you are completely accurate on your theory on the impossibility to be sensitive to homeopathy. Any exposure to any herb is overdose to me. If you really paid attention herbs are in so many products that avoiding exposure is enough to drive someone like me insane. I can’t live my life like this. There is something different about me than everyone else, and I think that there has to be some way to make me normal, to activate whatever enzyme system or whatever or something. It’s my only hope…
Also, I have been trying to figure out if there was any relationship to the method of exposure or the brand or the type of herb, but my sensitivity applies to ALL herbs with any medicinal properties.
Also, I have been trying to figure out if there was any relationship to the method of exposure or the brand or the type of herb, but my sensitivity applies to ALL herbs with any medicinal properties.
Marie55
12-25-2004, 09:14 PM
Sounds like you have a very sensitive "sympathetic nervous system".
I have a very sympathetic nervous system and have problems with many medications. Unable to tolerate "caffeine free" beverages, they have up to 3% caffeine but they do not have to put it on the ingredient list. Up to 3% is too much for me. Barq root beer has so much caffeine in it that only 2 tiny sips will cause a buzz thru my nervous system in a few seconds.
Many things will speed up my heart, cause a fast feeling and other.
My doctor told me in my next life to choose a better sympathetic nervous system, in other words some of us are born with sensitive nervous systems.
Best thing is to avoid things we find to bother us.
I have a very sympathetic nervous system and have problems with many medications. Unable to tolerate "caffeine free" beverages, they have up to 3% caffeine but they do not have to put it on the ingredient list. Up to 3% is too much for me. Barq root beer has so much caffeine in it that only 2 tiny sips will cause a buzz thru my nervous system in a few seconds.
Many things will speed up my heart, cause a fast feeling and other.
My doctor told me in my next life to choose a better sympathetic nervous system, in other words some of us are born with sensitive nervous systems.
Best thing is to avoid things we find to bother us.
JoeJack101
12-26-2004, 07:56 PM
What is interesting to me is that I have never had a real reaction to caffeine. I am somewhat sensitive to it as well, but it is NOTHING compared to most herbal stuff. I can tolerate caffeine and the most it will ever do is keep me awake/focused and if I had a large amount keep me up at night a bit. I used to drink tons of Pepsi all day.
I will still look into the possibility of a sensitive sympathetic nervous system.
Just out of curiosity Marie, Have you had side effects or reactions to anything else in your lifetime so far and can you explain them to me specifically if you don't mind? Or do you have to avoid drugs all-together? Also, do you sweat a little more than most people? (I think the sympathetic nervous system is related to perspiration as well.)
P.S. Thanks for the feedback Marie.
I will still look into the possibility of a sensitive sympathetic nervous system.
Just out of curiosity Marie, Have you had side effects or reactions to anything else in your lifetime so far and can you explain them to me specifically if you don't mind? Or do you have to avoid drugs all-together? Also, do you sweat a little more than most people? (I think the sympathetic nervous system is related to perspiration as well.)
P.S. Thanks for the feedback Marie.
Marie55
12-26-2004, 09:15 PM
Yes, I have had other reactions. For some reason my body has always been sensitive to stimulants of any kind. Body is sensitive to "just living" I do believe.
There is something in generic oral drugs that affects my sympathetic nervous system, thought to be the fillers. Some of the things I have reacted to are:
penecillin, sulfa, codiene, Elavil, Valium, aspirin, latex, cedar, fungus, soft drinks.
Doctor told me I could still drink tea, coffee, soft drinks if I wanted to but it would wear my heart out faster. I did not drink either for over 30 years and now can get away with a caffeine free soft drink once in a while. Caffeine free soft drinks have up to 3% caffeine and does not have to be listed on the label. That is too much caffeine for me as a rule. If I have a soft drink I must wait for a week at least before having another one.
Nervous system gets sassy even when there is no stress, causing butterflies in chest, rising/falling/cutting thru sensation in upper body and want to shake like an old chicken hen in ashes to get away from the feeling. Guess it is called "flight or fight" syndrome for no reason.
Yes, in the past years I did sweat a lot, not as much as some people. I never liked exercising because I did not like to sweat! Being older now I do not have the sweating problem.
My breathing got off track for unknown reasons and I became a "hidden hyperventilator". As a result my body became deficient in carbon dioxide (Co2) causing bloodpressure to spike to stroke territory, unable to take more than 3 steps without stalling out with no message for legs to move again, wait a little and then try to take steps. After 10 years going downhill finally saw a hypertension specialist and he recognised the problem. Hidden hyperventilation causes the body to blow off too much Co2 and this in turn causes vital organs to be deprived of oxygen. For unknown reasons the body hyperventilates and you are not aware you are doing so, adrenalin increases, body panics (sympathetic nervous system), vital organs deprived of oxygen. The red carpusles have oxygen but cannot be released without a balance of Co2. The sympathetic nervous system acts up along with the above. Hard to know whether the cart gets ahead of the horse or visa-versa. Hyperventilation causes the acid/akaline balance of the body to be off balance.
Hidden hyperventilation can cause a multitude of problems, this happens to be how it affected me. You would be wise to be checked for hidden hyperventilation. Will warn you, most doctors are not aware of this condition, they do not know and will blow you off. Had I not found the hypertension specialist I would be 6' under by now. You need oxygen for vital organs or they will begin to deterioate and then fail. I now can keep pace with my husband or out walk him at times. Thanks to the hypertension specialist I am still alive.
There is a blood test for Co2 and it is best to have this done in the late afternoon. During the night your breathing returns to normal and the Co2 level will be o.k., but, being up and about Co2 will be blown off and the lower level will be in latter part of the day. Even if the blood test lands within the normal range you can still have a problem. Sitting and resting allows the body to breathe more normal and the Co2 will increase. Physical activity, just walking will deplete Co2 if you are a hidden hyperventilator.
I do have to be cautious when taking any medication. Always make sure I know what the doctor is prescribing and ask questions as to whether it will affect the sympathetic nervous system or not. I have refused medications before and will again if I need to. I refuse to take an anti-depressant after my experience with Elavil. Valium was given for back muscle spasms but ended up almost costing me my sanity. Surprised I did not throw the baby out with the bath water. I found things in closets, cupboards that did not belong and I was the only one to have put them there. Finally one day when my husband came home I just started bawling my eyes out and asked if I had lost my mind. I stopped the Valium cold turkey (not suppose to but I did and survived). Amazing how clear intersections appeared after that while driving. Surprised I did not have a car accident or something worse.
Anti-depressants are given instead of finding the root cause of the patient's problems. When the root problem is found there is no need for anti-depressants in most cases, at least with me.
There is something in generic oral drugs that affects my sympathetic nervous system, thought to be the fillers. Some of the things I have reacted to are:
penecillin, sulfa, codiene, Elavil, Valium, aspirin, latex, cedar, fungus, soft drinks.
Doctor told me I could still drink tea, coffee, soft drinks if I wanted to but it would wear my heart out faster. I did not drink either for over 30 years and now can get away with a caffeine free soft drink once in a while. Caffeine free soft drinks have up to 3% caffeine and does not have to be listed on the label. That is too much caffeine for me as a rule. If I have a soft drink I must wait for a week at least before having another one.
Nervous system gets sassy even when there is no stress, causing butterflies in chest, rising/falling/cutting thru sensation in upper body and want to shake like an old chicken hen in ashes to get away from the feeling. Guess it is called "flight or fight" syndrome for no reason.
Yes, in the past years I did sweat a lot, not as much as some people. I never liked exercising because I did not like to sweat! Being older now I do not have the sweating problem.
My breathing got off track for unknown reasons and I became a "hidden hyperventilator". As a result my body became deficient in carbon dioxide (Co2) causing bloodpressure to spike to stroke territory, unable to take more than 3 steps without stalling out with no message for legs to move again, wait a little and then try to take steps. After 10 years going downhill finally saw a hypertension specialist and he recognised the problem. Hidden hyperventilation causes the body to blow off too much Co2 and this in turn causes vital organs to be deprived of oxygen. For unknown reasons the body hyperventilates and you are not aware you are doing so, adrenalin increases, body panics (sympathetic nervous system), vital organs deprived of oxygen. The red carpusles have oxygen but cannot be released without a balance of Co2. The sympathetic nervous system acts up along with the above. Hard to know whether the cart gets ahead of the horse or visa-versa. Hyperventilation causes the acid/akaline balance of the body to be off balance.
Hidden hyperventilation can cause a multitude of problems, this happens to be how it affected me. You would be wise to be checked for hidden hyperventilation. Will warn you, most doctors are not aware of this condition, they do not know and will blow you off. Had I not found the hypertension specialist I would be 6' under by now. You need oxygen for vital organs or they will begin to deterioate and then fail. I now can keep pace with my husband or out walk him at times. Thanks to the hypertension specialist I am still alive.
There is a blood test for Co2 and it is best to have this done in the late afternoon. During the night your breathing returns to normal and the Co2 level will be o.k., but, being up and about Co2 will be blown off and the lower level will be in latter part of the day. Even if the blood test lands within the normal range you can still have a problem. Sitting and resting allows the body to breathe more normal and the Co2 will increase. Physical activity, just walking will deplete Co2 if you are a hidden hyperventilator.
I do have to be cautious when taking any medication. Always make sure I know what the doctor is prescribing and ask questions as to whether it will affect the sympathetic nervous system or not. I have refused medications before and will again if I need to. I refuse to take an anti-depressant after my experience with Elavil. Valium was given for back muscle spasms but ended up almost costing me my sanity. Surprised I did not throw the baby out with the bath water. I found things in closets, cupboards that did not belong and I was the only one to have put them there. Finally one day when my husband came home I just started bawling my eyes out and asked if I had lost my mind. I stopped the Valium cold turkey (not suppose to but I did and survived). Amazing how clear intersections appeared after that while driving. Surprised I did not have a car accident or something worse.
Anti-depressants are given instead of finding the root cause of the patient's problems. When the root problem is found there is no need for anti-depressants in most cases, at least with me.
JoeJack101
12-26-2004, 11:31 PM
I have never experienced any reactions to the other items that you listed, but then again the only one I probably was exposed to was penecillin. I do think I am sensitive to "just living." I hate stress, but feel it often. I have trouble relaxing. I never feel fully relaxed, although I don't think I really feel butterflies when I am just sitting around. I do hate it how doctors feel they can make you take medicines, but most people, me included, forget that they can decline to take the risk with it. I have always been horrible at sports, and when I was young, my parents noticed me trying a tad harder than most kids to breathe. I never could figure out why all the other kids were always better than me. I do sweat above average, and I have had a pitstain problem before, especially last year in 11th grade, even with anti-perspirant. Does any of this sound consistant with a sensitive "sympathetic nervous system?"
I feel like I am learning a lot!
I feel like I am learning a lot!
Marie55
12-27-2004, 01:00 PM
Yes, this does sound like it could be a sensitive sympathetic nervous system problem. You see, looking back over the years I most likely had the breathing problem all along and it finally reached peak few years ago.
You would be wise to learn all you can about "hyperventilation" and "hidden hyperventilation". Info is out there now about both. Proper breathing is essential to good health. You should breathe with stomach going in and out and not shoulders going up and down. Men have a tendency to take a deep breath by raising their shoulders. This is a no-no. If I remember right, we should take a long deep inhale and a slow exhale to count of about 4. You may be a "shallow breather", I am. It is essential that I concentrate on taking deep breaths and slow exhales.
The hypertension specialist gave me an unusual prescription, paper lunch sack. Yes, that is true, no meds. In fact he reduced my meds other doctors had me on. I had to rebreathe in paper sack 5 mins every hour and after 3 months was able to reduce down to 4 or 5 times per day. The body can get back on track breathing right over time, usually 3 or more years. I faxed my bloodpressure readings to the doctor every month, he called me personally at night and advised next step. After 3 months he dismissed me and I continue to use the paper sack, not as often as I should. Consequently lately I am running short breathed due to not using sack as often as I should. Stress of holidays took a tole on me and I need to use the sack often until I return to normal breathing. The faster I move about the shorther my breath gets. I have to try and remain cool, calm, etc. in order to help keep breathing as normal as possible. Trying to speed up doing things gets me into trouble, short breathed.
There can be a problem when people get too much carbon dioxide (Co2), which makes it important to get the blood test for Co2 and know where you are.
Sweating a lot is definitely related to the sympathetic nervous system.
You would be wise to learn all you can about "hyperventilation" and "hidden hyperventilation". Info is out there now about both. Proper breathing is essential to good health. You should breathe with stomach going in and out and not shoulders going up and down. Men have a tendency to take a deep breath by raising their shoulders. This is a no-no. If I remember right, we should take a long deep inhale and a slow exhale to count of about 4. You may be a "shallow breather", I am. It is essential that I concentrate on taking deep breaths and slow exhales.
The hypertension specialist gave me an unusual prescription, paper lunch sack. Yes, that is true, no meds. In fact he reduced my meds other doctors had me on. I had to rebreathe in paper sack 5 mins every hour and after 3 months was able to reduce down to 4 or 5 times per day. The body can get back on track breathing right over time, usually 3 or more years. I faxed my bloodpressure readings to the doctor every month, he called me personally at night and advised next step. After 3 months he dismissed me and I continue to use the paper sack, not as often as I should. Consequently lately I am running short breathed due to not using sack as often as I should. Stress of holidays took a tole on me and I need to use the sack often until I return to normal breathing. The faster I move about the shorther my breath gets. I have to try and remain cool, calm, etc. in order to help keep breathing as normal as possible. Trying to speed up doing things gets me into trouble, short breathed.
There can be a problem when people get too much carbon dioxide (Co2), which makes it important to get the blood test for Co2 and know where you are.
Sweating a lot is definitely related to the sympathetic nervous system.
JoeJack101
12-27-2004, 02:14 PM
I did play trumpet from 6th grade through 11th grade. Even when I practiced frequently, I had problems with breathing and airflow. I couldn't supply the proper amount of air for the duration that was needed to be any good. We checked with an Asthma/Allergy doctor who did a breathing test for asthma and it came back normal.
At this point I need to know who to see. I live about 1 hour and 30 minutes outside Houston so maybe there is a doctor (or two) there I need to see. Is there a type of doctor who specializes with the nervous systems of the body who will be familiar with a "sensitive" sympathetic nervous system? Also, what specialist will order the test you think I should have for hidden hyperventilation? I am primarily concerned with checking to see if I do in fact have a sensitive sympathetic nervous system. I am hoping a doctor somewhere can verify or deny this for me. If there was a surgery to treat me for that and I was diagnosed with a sensitive sympathetic nervous system, I would be up for the operation. And speaking of surgery, have you ever had any problems with anesthesia or any drugs used to put patients to sleep or numb them? Seems like that has to do with the sympathetic nervous system as well. Do you have to avoid those? And, what will you do if a doctor someday says you must have surgery on your kidney for instance?
Sincerely,
Derek E.
At this point I need to know who to see. I live about 1 hour and 30 minutes outside Houston so maybe there is a doctor (or two) there I need to see. Is there a type of doctor who specializes with the nervous systems of the body who will be familiar with a "sensitive" sympathetic nervous system? Also, what specialist will order the test you think I should have for hidden hyperventilation? I am primarily concerned with checking to see if I do in fact have a sensitive sympathetic nervous system. I am hoping a doctor somewhere can verify or deny this for me. If there was a surgery to treat me for that and I was diagnosed with a sensitive sympathetic nervous system, I would be up for the operation. And speaking of surgery, have you ever had any problems with anesthesia or any drugs used to put patients to sleep or numb them? Seems like that has to do with the sympathetic nervous system as well. Do you have to avoid those? And, what will you do if a doctor someday says you must have surgery on your kidney for instance?
Sincerely,
Derek E.
Kissa
12-27-2004, 03:53 PM
It is not uncommon for some individuals to have a hyper sensitivity to medications and or their components, particularly when it comes to generic medications. Dispite what the FDA tells you, all medications, including generics are not created equal.
Furthermore, some individuals, like myself, process these chemicals in a somewhat backwards way due to various systemic or genetic reasons. For example, if I take medication that would put the "average" individual asleep, you can be assured I'll be awake, sometimes for days. This is particularly the case with many medications deemed "non narcotic" and allergy medications.
My problem stems primarly from a genetic disorder which is collagen or defunct collagen based. I have family members, who like you, hyper react to medications, herbs, and sometimes even environmental factors. Such is that that I have an aunt who is, at times, struck very ill by the effects of Minears Disease that she can not be treated for it. Instead she is left to suffer.
As of recent my eldery grandmother had to have hip reconstruction surgery while completely awake due to a severe allergy to anethesia.
Your best bet is to seek out a well rounded interal medicine specialist or even a geneticist who is well versed in various rare disorders which can cause such a reaction, particuarly if others in your family suffer the same problem.
Needless to say, you aren't alone in the situation and it's best to simply keep a journal of what works and what doesn't and your reactions and always take that to every Dr. or ER type of visit you may have.
And on one last note regarding herbs as a whole. There is not enough scientific research to back many (not all) of the herbal "remedies" on the market, no proof of long term usage without harm. In fact many of these supplements will cause undue problems when put under anethesia or can even cause uncontrollable bleeding to name a few side effects.
Even fruits such as grapefruits can cause medications to react improperly, in some cases it causes a medications effect to be multipled by a 10 factor while in other it prevents the medication from being absorbed as a whole.
Always read your prescription labels.
Be very careful of what you take and always tell your doctor or surgeon (if you have to have surgery) what you have taken over the last few months including any vitamins and herbs.
Furthermore, some individuals, like myself, process these chemicals in a somewhat backwards way due to various systemic or genetic reasons. For example, if I take medication that would put the "average" individual asleep, you can be assured I'll be awake, sometimes for days. This is particularly the case with many medications deemed "non narcotic" and allergy medications.
My problem stems primarly from a genetic disorder which is collagen or defunct collagen based. I have family members, who like you, hyper react to medications, herbs, and sometimes even environmental factors. Such is that that I have an aunt who is, at times, struck very ill by the effects of Minears Disease that she can not be treated for it. Instead she is left to suffer.
As of recent my eldery grandmother had to have hip reconstruction surgery while completely awake due to a severe allergy to anethesia.
Your best bet is to seek out a well rounded interal medicine specialist or even a geneticist who is well versed in various rare disorders which can cause such a reaction, particuarly if others in your family suffer the same problem.
Needless to say, you aren't alone in the situation and it's best to simply keep a journal of what works and what doesn't and your reactions and always take that to every Dr. or ER type of visit you may have.
And on one last note regarding herbs as a whole. There is not enough scientific research to back many (not all) of the herbal "remedies" on the market, no proof of long term usage without harm. In fact many of these supplements will cause undue problems when put under anethesia or can even cause uncontrollable bleeding to name a few side effects.
Even fruits such as grapefruits can cause medications to react improperly, in some cases it causes a medications effect to be multipled by a 10 factor while in other it prevents the medication from being absorbed as a whole.
Always read your prescription labels.
Be very careful of what you take and always tell your doctor or surgeon (if you have to have surgery) what you have taken over the last few months including any vitamins and herbs.
Marie55
12-27-2004, 05:47 PM
Any doctor can test for hyperventilation, BUT, they need to be able to recognize the symptoms, especially when a person has hidden hyperventilation. Normally when a person hyperventilates it is very obvious they are in trouble. This is not the case of the hidden hypereventilator. A trained doctor will notice how you breathe when he first walks in the door. That is what the hypertension specialist told me, he noticed the problem immediately when his eyes first landed on me. He also had me sit on table and then moved my body back and forth toward knees while I took deep breaths, this produced a light head feeling, hyperventilation although I was not gasping for breath or thrashing around.
I was under the care of 3 internists and 1 cardiologist and neither recognized my problem. I finally asked my dermatologist (professor of dermatology at Southwestern Medical School) where I could go for help and he referred me to Dr. Norman Kaplan at Southwestern Medical School. Dr. Kaplan is a hypertension specialist and was the choice since hyperventilation had spiked my bloodpressure to stroke territory.
There are good medical schools in Houston, check with them and see what kind of doctor you should see. A neurologist deals with the nervous system. It may be best to see an internist at a teaching hospital, preferably a professor. They tend to be interestred in how things work instead of tossing pills and sending you on your way. You would be excellent case study for students to learn more about rare problems. (No, I don't mean for students to practice on).
My current internsist does not have a solution to my sympathetic nervous system, something I was born with and must work around.
Please, please do not consider surgery of the vagus nerve to stop the sweating. One slip of the knife and life will be over for you as you know it now and possibly will be paralyzed for life. Nerves are not forgiving.
To my knowledge there is no surgery for correcting the sympathetic nervous system.
I have had major surgeries and the anethesitic (sp) did not bother me. They have a way of controlling your breathing. I was told when the body is sleeping breathing returns to normal.
Each time I had surgery I gave each doctor copy of my allergies, medications, reactions and at bottom of page:
"BODY NEEDS FINE TUNING or nervous system goes haywire".
It was my husband's duty to make sure everyone recieved a copy.
I was under the care of 3 internists and 1 cardiologist and neither recognized my problem. I finally asked my dermatologist (professor of dermatology at Southwestern Medical School) where I could go for help and he referred me to Dr. Norman Kaplan at Southwestern Medical School. Dr. Kaplan is a hypertension specialist and was the choice since hyperventilation had spiked my bloodpressure to stroke territory.
There are good medical schools in Houston, check with them and see what kind of doctor you should see. A neurologist deals with the nervous system. It may be best to see an internist at a teaching hospital, preferably a professor. They tend to be interestred in how things work instead of tossing pills and sending you on your way. You would be excellent case study for students to learn more about rare problems. (No, I don't mean for students to practice on).
My current internsist does not have a solution to my sympathetic nervous system, something I was born with and must work around.
Please, please do not consider surgery of the vagus nerve to stop the sweating. One slip of the knife and life will be over for you as you know it now and possibly will be paralyzed for life. Nerves are not forgiving.
To my knowledge there is no surgery for correcting the sympathetic nervous system.
I have had major surgeries and the anethesitic (sp) did not bother me. They have a way of controlling your breathing. I was told when the body is sleeping breathing returns to normal.
Each time I had surgery I gave each doctor copy of my allergies, medications, reactions and at bottom of page:
"BODY NEEDS FINE TUNING or nervous system goes haywire".
It was my husband's duty to make sure everyone recieved a copy.
JoeJack101
01-01-2005, 08:06 PM
Does anyone else agree with Marie that I should see a neurologist? I am hoping to continue getting feedback.
By the way, a urine test recently came back saying that I have protein in my urine. The doctor's office had me do a retest and I am waiting on the results of that. Maybe that can somehow serve as an indicator of what problem I have. I have definitely had this problem for 4 or more years if not my whole life. And there aren't any other symptoms other than extreme sensivity to herbs and some drugs (both OTC and prescription). If I don't find an answer I am going to go nuts. I am going to go nuts because of how much of an intelligent and normal person I am and because of how weird this is. This isn't fair, and I shouldn't have to live with this. I don't just believe that "weird" things are happeneing to me upon exposure. It's many times backwards, weird things start happeneing (such as continous facial redness and a hot feeling around the face) and then it is attributed to exposure to some herb or something.
An example, I was having continuous chest pains directly around the heart area. It was directly linked to minimal exposure to minoxidil which had been used in the bathroom I was using. Minoxidil is linked with heart problems and heart changes.
If and when I find out more information, I plan on updating this post so any of you reading about this can be up to date on what is going on.
By the way, a urine test recently came back saying that I have protein in my urine. The doctor's office had me do a retest and I am waiting on the results of that. Maybe that can somehow serve as an indicator of what problem I have. I have definitely had this problem for 4 or more years if not my whole life. And there aren't any other symptoms other than extreme sensivity to herbs and some drugs (both OTC and prescription). If I don't find an answer I am going to go nuts. I am going to go nuts because of how much of an intelligent and normal person I am and because of how weird this is. This isn't fair, and I shouldn't have to live with this. I don't just believe that "weird" things are happeneing to me upon exposure. It's many times backwards, weird things start happeneing (such as continous facial redness and a hot feeling around the face) and then it is attributed to exposure to some herb or something.
An example, I was having continuous chest pains directly around the heart area. It was directly linked to minimal exposure to minoxidil which had been used in the bathroom I was using. Minoxidil is linked with heart problems and heart changes.
If and when I find out more information, I plan on updating this post so any of you reading about this can be up to date on what is going on.
JoeJack101
01-10-2005, 07:22 PM
Well, that urine test I was speaking of came back normal the 2nd time. Also, I heard of a great neurologist in my area, but I just called and they only allow referals only. Meaning, I would have to explain my problem to a general physician or other doctor and be recommended to this doctor. I don't have a general physician in this town, because I am sort of new here. ( I really don't like the one i recently saw for another problem.) This SUCKS. I guess I'll either look for a neurologist in houston (1 hr and 30 mins away) or I will do something here. What the heck will I tell a general physician about my symptoms?
Marie55
01-10-2005, 09:38 PM
Tell a new physician the truth and that this has gone on for so long it is time to get down to what the real cause is and you would appreciate him referring you to this particular neurologist. Tell him you do not want to waste his time since you have already seen other doctors and they did not have a clue. Explain to him that you are new and would appreciate his help. In other words be up front with him in the beginning and let him know you are there to get a referral and hope he will do so for you.
JoeJack101
01-26-2005, 12:14 AM
I went to see an internist and I have never been so frustrated in my entire life. Maybe the fact that I am 18 puts me at a disadvantage, because people have a harder time taking people my age seriously. From the moment that I began to explain my problem, the doctor basically started explaining how it isn't possible. He said what I experience is either related to a phobia or an allergy to specific things. He said it is in my mind, because I must be afraid of medicines (or herbs). He said if I have convinced myself that certain things give me an allergic reaction, then just avoid them. He kept trying to get out of me the specific incidents which have led me to believe that my body over-reacts to all medicines or supplements. No matter what I say or could have said couldn't sound very precise, but if I had a year to sit with him and explain each and every detail of each and every experience I have had over the past 4 years, maybe he would have caught on. The bottom line is that I am overly sensitive to the effects of any substance with medicinal properties (medicines, supplements, herbs, etc.). The only condition I have found online which has "sensitivity to medicines" as a symptom is a thing called Adrenal Fatigue.
{REMOVED}
I seem to have a very large number of the symptoms on the "adrenal" column and virtually none on the other two columns. I mentioned Adrenal Fatigue to this doctor today, and he played it down. I mean I don't necessarily think that I have this or that this is causing my problems, but I know that SOMETHING is causing them. Why is it so hard to find a good doctor???!!!!!!!!!!!!!!
When I got out of the appointment and started going down the elevator and walking out the building, I started crying and basically couldn't stop for the next 45 minutes. It is so frustrating living in a world where nobody takes you seriously or understands what I am experiencing or have experienced. The only person who has a first hand understanding of my problem is my dad. Thank God for him. He understands 100% as do I that it isn't just "in my head."
{REMOVED}
I seem to have a very large number of the symptoms on the "adrenal" column and virtually none on the other two columns. I mentioned Adrenal Fatigue to this doctor today, and he played it down. I mean I don't necessarily think that I have this or that this is causing my problems, but I know that SOMETHING is causing them. Why is it so hard to find a good doctor???!!!!!!!!!!!!!!
When I got out of the appointment and started going down the elevator and walking out the building, I started crying and basically couldn't stop for the next 45 minutes. It is so frustrating living in a world where nobody takes you seriously or understands what I am experiencing or have experienced. The only person who has a first hand understanding of my problem is my dad. Thank God for him. He understands 100% as do I that it isn't just "in my head."
JoeJack101
01-26-2005, 07:55 PM
Here are the symptoms or signs of Adrenal Fatigue as well as whether or not I have the specific signs or not. Seems like i have WAY too many in common. I wonder if it means anything.
Symptoms of Adrenal Fatigue
Type of Symptom/Area -- Sign of Adrenal Fatigue -- If it appies to me
1. Body Type -- Thin, can't gain weight -- YES
2. Face Shape -- Eyes, cheeks sunken when severe -- Big eyes and puffy cheeks
3. Eyebrows -- Tend to be full -- YES
4. Tissue Around Eyes -- Sunken appearance, may have dark circles -- YES
5. Facial Coloring -- Tendency to pallor, especially around mouth. In dark skin, it darkens around mouth, forehead, sides of face -- I don't know
6. Hair quality -- Thin and wispy. May become straw-like or straighter. Dry. Falls out easily. Sparse on forearms or lower legs. -- Thin hair except I have a lot of leg hair, although its rather thin.
7. Nails -- Thin, brittle -- I don't think my nails are thin, but they do break rather easily.
8. Pigment Distribution -- Vitiligo (white spots or patches) in late stage. May tan too easily. In dark skin, darker on forehead, sides of face, around mouth, and chin/jaw. -- I'm not sure, but I don't have Vitiligo.
9. Connective Tissue Quality (ligaments, tendons, skin, hair, and nails) -- Lax ligaments or flexible (e.g. flat feet, double jointed). Joint strains/sprains are common. -- I don't know.
10. Fluids/Secretions -- Dry skin, little secretions. Can't hold on to water. -- I don't know.
11. Light Sensitivity or Night Blindness -- Often Present. -- I have noticed light sensitivity.
12. After Image (e.g. seeing the image of a flash bulb or bright light moving by longer than others) -- Often Present. -- Probably.
13. Typical Pains -- Headaches, migraines, muscles, carpal tunnel -- I have a horrible chronic headache problem that doesn't go away.
14. Tempterature Pattern -- Thermal chameleon (hot when it's warm and cold when it's cool). Poor thermoregulation. Tends to low body tempterature around 97.8 or lower. Fluctuating pattern. -- Yes, probably.
15. Cold Intolerance -- Always or almost always present. -- If it is a little cold, I am freezing.
16. Heat Intolerance -- Possibly present. -- Haven't really noticed this.
17. Cold Hands / Feet -- Always or almost always present. -- YES, I have this for sure.
18. Warm Hands/ Feet (in spite of low body tempterature) -- Generally Absent. -- Absent in me as well; I have cold hands feet usually.
19. Sweating -- May be excessive in early phase. Poor sweating in late phase. -- My hands sweat horribly, but everywhere else sweats slightly above the average person.
20. General Reactivity: Emotional, physiological, etc. -- Hyper-reactive (over) -- Yes, definitely.
21. Immune Function -- Tendency to over-react results in allergies, sensitivities, autoimmune problems -- I do have allergies to grasses, pollens, etc.
22. History of EBV or Mononucleosis -- Always or almost always present. -- I'm not sure at all on this one.
23. Sensitivity to medications, supplements, etc. Needs small doses. -- Often Present -- I have like the most severe case of this one!!
24. Intuitive. Picks up other peoples feelings (e.g. at malls, parties). -- Often Present -- Possibly/Probably.
25. Personality Tendency: Humor -- Possibly Present and/or generally absent -- I have a humorous personality from time to time but not usually.
26. Personality Tendency: Serious -- Often Present and/or Always or Almost present -- I have a very serious personality most of the time.
27. Depression -- Possibly present -- Maybe a little but not much.
28. Anxiety, panic attacks, worry, fear, insecurity, feelings of impending doom (any combination). "I thought I was dying..." -- Always or almost always present -- I DO have lots of anxiety, panic attacts, worry, fear and insecurity, etc.
29. Obsessive Complusive -- Often present -- Yes.
30. Startle Easily -- Often Present -- Yes.
31. Tolerance to Change/Stress -- Poor -- Same with me, my body has virtually no tolerance to change or stress.
32. Sleep patterns -- Tendency to one of more: Insomnia, light-sleeper, waking up at 2-4 AM, unrefreshing sleep. -- My sleep is rather unrefreshing, and I never remember having any dreams.
33. Mental Abilities -- Poor focus, clarity, concentration, short-term memory. 'Brain fog' -- I have very poor focus, lack of clarity of though, lack of concentration, and a short term memory. I do have brain fog, and many people have noticed my inability to concentrate, even when I try my hardest.
34. Energy Pattern -- Complains of fatigue or exhaustion, "wired and tired", can't persevere, low motivation -- That description matches me precisely.
35. Exercise Tolerance -- Causes fatigue. Can't persevere. If severe, body temperature drops after exercise. -- I have never been able to tolerate exercise, and have always been very fatigued afterwards.
36. Edema swelling, non-pitting in lower legs -- Generally absent -- I have never noticed this.
37. Standing still is difficult or causes discomfort. Walking is easier. -- Possibly present. -- Yes, somewhat.
38. Fibromyalgia / Chronic Fatigue -- Often present -- It's hard to say, but probably not.
39. Orthostatic -- Often present. -- I have never noticed this to a considerable degree.
40. Orthostatic Hypotension (light-headed when getting up to stand from laying or sometimes, even sitting) -- Often Present -- Probably yes.
41. Blood Pressure -- Tends to run low, e.g., from 80/50 at the low end to 110/70 at the high end. -- I am quite sure that mine is usually around 110/70.
42. Heart Palpitations ("feels like my heart was about to jump out of my chest"). -- Often present. -- Yes to a certain degree.
43. Mitral Valve Murmur or Prolapse -- Often Present -- I haven't noticed this.
44. Dietary Habits -- Often lean toward being vegetarian or avoids certain foods. -- I avoid sweets all together.
45. Digestion -- Often has difficulty digesting meat, or other proteins. Some foods troublesome -- Yes, I do often have digestion problems.
46. Bowel Function -- Tendency to be irritable, or hyperactive, transit time may be too fast (food exits stomach too fast causing poor enzymatic digestion) -- My bowel function is typically irritable.
47. Malabsorption -- Always or almost always present -- I am completely uncertain as to whether or not I have this after looking it up.
48. Blood sugar. (Hypoglycemia = low blood sugar. Hyperglycemia = elevated blood sugar) -- Tendency to hypoglycemia. May need small meals or "crash" -- I do need sprites and small meals to keep going. I am constantly craving small meals and sprites.
49. Problems with menses and/or fertility (females) -- Often present -- Considering I'm not a female, no.
Symptoms of Adrenal Fatigue
Type of Symptom/Area -- Sign of Adrenal Fatigue -- If it appies to me
1. Body Type -- Thin, can't gain weight -- YES
2. Face Shape -- Eyes, cheeks sunken when severe -- Big eyes and puffy cheeks
3. Eyebrows -- Tend to be full -- YES
4. Tissue Around Eyes -- Sunken appearance, may have dark circles -- YES
5. Facial Coloring -- Tendency to pallor, especially around mouth. In dark skin, it darkens around mouth, forehead, sides of face -- I don't know
6. Hair quality -- Thin and wispy. May become straw-like or straighter. Dry. Falls out easily. Sparse on forearms or lower legs. -- Thin hair except I have a lot of leg hair, although its rather thin.
7. Nails -- Thin, brittle -- I don't think my nails are thin, but they do break rather easily.
8. Pigment Distribution -- Vitiligo (white spots or patches) in late stage. May tan too easily. In dark skin, darker on forehead, sides of face, around mouth, and chin/jaw. -- I'm not sure, but I don't have Vitiligo.
9. Connective Tissue Quality (ligaments, tendons, skin, hair, and nails) -- Lax ligaments or flexible (e.g. flat feet, double jointed). Joint strains/sprains are common. -- I don't know.
10. Fluids/Secretions -- Dry skin, little secretions. Can't hold on to water. -- I don't know.
11. Light Sensitivity or Night Blindness -- Often Present. -- I have noticed light sensitivity.
12. After Image (e.g. seeing the image of a flash bulb or bright light moving by longer than others) -- Often Present. -- Probably.
13. Typical Pains -- Headaches, migraines, muscles, carpal tunnel -- I have a horrible chronic headache problem that doesn't go away.
14. Tempterature Pattern -- Thermal chameleon (hot when it's warm and cold when it's cool). Poor thermoregulation. Tends to low body tempterature around 97.8 or lower. Fluctuating pattern. -- Yes, probably.
15. Cold Intolerance -- Always or almost always present. -- If it is a little cold, I am freezing.
16. Heat Intolerance -- Possibly present. -- Haven't really noticed this.
17. Cold Hands / Feet -- Always or almost always present. -- YES, I have this for sure.
18. Warm Hands/ Feet (in spite of low body tempterature) -- Generally Absent. -- Absent in me as well; I have cold hands feet usually.
19. Sweating -- May be excessive in early phase. Poor sweating in late phase. -- My hands sweat horribly, but everywhere else sweats slightly above the average person.
20. General Reactivity: Emotional, physiological, etc. -- Hyper-reactive (over) -- Yes, definitely.
21. Immune Function -- Tendency to over-react results in allergies, sensitivities, autoimmune problems -- I do have allergies to grasses, pollens, etc.
22. History of EBV or Mononucleosis -- Always or almost always present. -- I'm not sure at all on this one.
23. Sensitivity to medications, supplements, etc. Needs small doses. -- Often Present -- I have like the most severe case of this one!!
24. Intuitive. Picks up other peoples feelings (e.g. at malls, parties). -- Often Present -- Possibly/Probably.
25. Personality Tendency: Humor -- Possibly Present and/or generally absent -- I have a humorous personality from time to time but not usually.
26. Personality Tendency: Serious -- Often Present and/or Always or Almost present -- I have a very serious personality most of the time.
27. Depression -- Possibly present -- Maybe a little but not much.
28. Anxiety, panic attacks, worry, fear, insecurity, feelings of impending doom (any combination). "I thought I was dying..." -- Always or almost always present -- I DO have lots of anxiety, panic attacts, worry, fear and insecurity, etc.
29. Obsessive Complusive -- Often present -- Yes.
30. Startle Easily -- Often Present -- Yes.
31. Tolerance to Change/Stress -- Poor -- Same with me, my body has virtually no tolerance to change or stress.
32. Sleep patterns -- Tendency to one of more: Insomnia, light-sleeper, waking up at 2-4 AM, unrefreshing sleep. -- My sleep is rather unrefreshing, and I never remember having any dreams.
33. Mental Abilities -- Poor focus, clarity, concentration, short-term memory. 'Brain fog' -- I have very poor focus, lack of clarity of though, lack of concentration, and a short term memory. I do have brain fog, and many people have noticed my inability to concentrate, even when I try my hardest.
34. Energy Pattern -- Complains of fatigue or exhaustion, "wired and tired", can't persevere, low motivation -- That description matches me precisely.
35. Exercise Tolerance -- Causes fatigue. Can't persevere. If severe, body temperature drops after exercise. -- I have never been able to tolerate exercise, and have always been very fatigued afterwards.
36. Edema swelling, non-pitting in lower legs -- Generally absent -- I have never noticed this.
37. Standing still is difficult or causes discomfort. Walking is easier. -- Possibly present. -- Yes, somewhat.
38. Fibromyalgia / Chronic Fatigue -- Often present -- It's hard to say, but probably not.
39. Orthostatic -- Often present. -- I have never noticed this to a considerable degree.
40. Orthostatic Hypotension (light-headed when getting up to stand from laying or sometimes, even sitting) -- Often Present -- Probably yes.
41. Blood Pressure -- Tends to run low, e.g., from 80/50 at the low end to 110/70 at the high end. -- I am quite sure that mine is usually around 110/70.
42. Heart Palpitations ("feels like my heart was about to jump out of my chest"). -- Often present. -- Yes to a certain degree.
43. Mitral Valve Murmur or Prolapse -- Often Present -- I haven't noticed this.
44. Dietary Habits -- Often lean toward being vegetarian or avoids certain foods. -- I avoid sweets all together.
45. Digestion -- Often has difficulty digesting meat, or other proteins. Some foods troublesome -- Yes, I do often have digestion problems.
46. Bowel Function -- Tendency to be irritable, or hyperactive, transit time may be too fast (food exits stomach too fast causing poor enzymatic digestion) -- My bowel function is typically irritable.
47. Malabsorption -- Always or almost always present -- I am completely uncertain as to whether or not I have this after looking it up.
48. Blood sugar. (Hypoglycemia = low blood sugar. Hyperglycemia = elevated blood sugar) -- Tendency to hypoglycemia. May need small meals or "crash" -- I do need sprites and small meals to keep going. I am constantly craving small meals and sprites.
49. Problems with menses and/or fertility (females) -- Often present -- Considering I'm not a female, no.
PJ59
01-29-2005, 11:33 PM
Hi JoeJack101,
You are not the only one out there with this rare disorder or whatever it may be.I also have a similar sensitivity to drugs (both OTC & Prescription) but haven't had any experience with herbs so not sure about that. You have my sympathy as I am going thru the same things trying to convince my dr that I have a problem before they accidently kill me! Fortunately for you,it sounds like you are in an area where you have access to drs,I am less fortunate. When did you first notice you had a problem? My problems started after a head injury with which I received a routine td vac about 1.5 yrs ago. I had every symptom imaginable so my dr had no idea where to start & said if it were due to a neurotoxin,it would go away in 3 months. The reactions to drugs started about 2 months from the accident. At first I could tolerate drugs in low doses & then proceeded to the last month of not being able to even tolerate 1 ibuprofen or other "safe" otc products that I previosly never had any problems with. I haven't had any adrenal testing but thyroid normal after several comps. The internist that I was referred to is clueless & thinks I'm crazy as my bloods have been normal. I had been trying to tell them I had a sensitivity problem but couldn't get them to listen until very recently.The only answer I got was to abstain from everything & go see allergist. The last straw was when I had an accident recently & had to get sutured when I had a rxn to the lidocaine. I am also trying to figure out where to go for help. Good luck !
You are not the only one out there with this rare disorder or whatever it may be.I also have a similar sensitivity to drugs (both OTC & Prescription) but haven't had any experience with herbs so not sure about that. You have my sympathy as I am going thru the same things trying to convince my dr that I have a problem before they accidently kill me! Fortunately for you,it sounds like you are in an area where you have access to drs,I am less fortunate. When did you first notice you had a problem? My problems started after a head injury with which I received a routine td vac about 1.5 yrs ago. I had every symptom imaginable so my dr had no idea where to start & said if it were due to a neurotoxin,it would go away in 3 months. The reactions to drugs started about 2 months from the accident. At first I could tolerate drugs in low doses & then proceeded to the last month of not being able to even tolerate 1 ibuprofen or other "safe" otc products that I previosly never had any problems with. I haven't had any adrenal testing but thyroid normal after several comps. The internist that I was referred to is clueless & thinks I'm crazy as my bloods have been normal. I had been trying to tell them I had a sensitivity problem but couldn't get them to listen until very recently.The only answer I got was to abstain from everything & go see allergist. The last straw was when I had an accident recently & had to get sutured when I had a rxn to the lidocaine. I am also trying to figure out where to go for help. Good luck !
JoeJack101
01-30-2005, 01:26 AM
I seem to be having trouble understanding certain elements of your post, but I am very glad you posted in that I maybe have found someone with the exact same problem as me. When you say you received a "routine td vac" what is that? And what type or reaction did you have? I have had vaccines before and haven't noticed any symptoms or side effects. Also, do you mean that you used to not have this problem, and then it has come on and then it has gotten worse? What type of symptoms do you get from Ibuprofen or other OTC products? Is the reaction immediate? Also, I believe I had lidocaine injected into my skin for having a dermatological procedure done and I don't remember any visible reaction. What did lidocaine do to you?
PJ59
01-31-2005, 12:15 AM
Hi,How long have you had Reaction problem? Maybe we might find someone out there with some answers. I was normal until 1.5 years ago when I had head trauma.At that time I received td vac(tetanus-diptheria combo) of which I peviously have had at least 5 doses.The following are brief descriptions of some of the reactions I have had.I think I could write several books on my medical symptoms over the past 1.5 yrs! To sum it up,my reactions start almost immediately ,last way too long,include every side effect listed and everything between the lines,usually are unbelievable to the drs.
TD Vac-severe pain over whole arm extending over shoulder for 3 days,then followed by severe weakness & neurosymptoms which peaked out at 5 weeks.Also my body temp dropped from normal to 96 degrees where it now wants to stay unless I am insulted by a drug.CT Scan Contrast Dye- severe burning thru body for 3 days, Flonase-symptoms resemble cortisone overdose including rapid pulse & increased BP.Allegra-lasts twice as long as it is supposed to & makes me drowsy.Cyclobenzaprine-drops BP,& lasts way too long,messes with my attitude. Very low dose Lexapro equals intolerable mental high,extreme nausea,head numbness,loss of judgement,extreme head pain,impaired speech,plus too many bad others to report.It is now 6 weeks out from the whole 27 mg of Lexapro over a 9 day period of time.Since the Lexapro I now react to Allegra ,Ibuprofen,& lidocaine even more severely resulting in a repeat episode of Lexapro side effects lasting about 1 week per drug partial dose. A word of caution: Do not take any psychotropic drugs (mind altering drugs) unless you can no longer can cope.This is how drs try to get your mind off the problem that they don't know how to deal with.These drugs may cause more damage than help in cases like ours from research & experience. I could write many books on my experiences so best if you ask questions so I don't write too much at a time. I feel for you as sounds like you have not had any fun visiting drs. either. I kind of have a phobia of drs besides white coat syndrome so that doesn't make it very easy either. Just remember YOU are in charge of your care and if something doesn't seem right,get another opinion. Eventually someone will catch on(At least I hope so!).Just be careful & record problems and symptoms as they all tend to run together after awhile.That makes it slightly more believable for the drs if it is in print. So far mine have been overwhelmed & just hope my problems & I will go away.But I have been persistant so think my internist is finally getting onto the same wavelength as me! Please keep me informed!
TD Vac-severe pain over whole arm extending over shoulder for 3 days,then followed by severe weakness & neurosymptoms which peaked out at 5 weeks.Also my body temp dropped from normal to 96 degrees where it now wants to stay unless I am insulted by a drug.CT Scan Contrast Dye- severe burning thru body for 3 days, Flonase-symptoms resemble cortisone overdose including rapid pulse & increased BP.Allegra-lasts twice as long as it is supposed to & makes me drowsy.Cyclobenzaprine-drops BP,& lasts way too long,messes with my attitude. Very low dose Lexapro equals intolerable mental high,extreme nausea,head numbness,loss of judgement,extreme head pain,impaired speech,plus too many bad others to report.It is now 6 weeks out from the whole 27 mg of Lexapro over a 9 day period of time.Since the Lexapro I now react to Allegra ,Ibuprofen,& lidocaine even more severely resulting in a repeat episode of Lexapro side effects lasting about 1 week per drug partial dose. A word of caution: Do not take any psychotropic drugs (mind altering drugs) unless you can no longer can cope.This is how drs try to get your mind off the problem that they don't know how to deal with.These drugs may cause more damage than help in cases like ours from research & experience. I could write many books on my experiences so best if you ask questions so I don't write too much at a time. I feel for you as sounds like you have not had any fun visiting drs. either. I kind of have a phobia of drs besides white coat syndrome so that doesn't make it very easy either. Just remember YOU are in charge of your care and if something doesn't seem right,get another opinion. Eventually someone will catch on(At least I hope so!).Just be careful & record problems and symptoms as they all tend to run together after awhile.That makes it slightly more believable for the drs if it is in print. So far mine have been overwhelmed & just hope my problems & I will go away.But I have been persistant so think my internist is finally getting onto the same wavelength as me! Please keep me informed!
Beth6007
01-31-2005, 11:08 PM
I sweat like crazy latley and I am only 26 years old. My heart pounds in my chest and my feet sometimes. I am taking DHEA (dehydroepiandrosterone, is a natural steroid hormone produced from cholesterol by the adrenal glands.) I am questioning if this is one of my problems. I dont need it because I am young and healthy, but I heard it will give you mor muscle mass than fat, like guys.
JoeJack101
02-03-2005, 07:42 PM
PJ59,
Well as far as i know, I have had this problem forever. I can only account for having this for the past four years for sure. I can't think of an incident that would have caused it for sure. I do know that I was born sooner than nature would have me, because of a decision made by my parents. They had asked the doctor to give my mother medicine that would induce labor. I was born with a slightly noticible defect on the top of my left ear. Maybe a part of my development or lack thereof is responsible for my problem. For example, a nervous system that for some reason responds too much to stimuli (medications). Or, lack of development or activation of my kidneys, liver, or adrenal glands (or another organ or system).
All I know is that my body responds to 5 mg of any medicine as if it has been exposed to 1000 mg. I am talking about not just side effects, but every element of my response to the medication. The side effects and the symptoms of overdose, and the exaggerated effect of the medicine itself. A neglible dose of ALL medications (5 mg) gives me not only an exaggerated effect of its purpose (like a sedative, etc) but many side effects as well as the symptoms of overdose. It is ruining my life as well as driving me insane. It has definitely taken it's tole on me, and my life as a whole has definitely been affected negatively.
Well as far as i know, I have had this problem forever. I can only account for having this for the past four years for sure. I can't think of an incident that would have caused it for sure. I do know that I was born sooner than nature would have me, because of a decision made by my parents. They had asked the doctor to give my mother medicine that would induce labor. I was born with a slightly noticible defect on the top of my left ear. Maybe a part of my development or lack thereof is responsible for my problem. For example, a nervous system that for some reason responds too much to stimuli (medications). Or, lack of development or activation of my kidneys, liver, or adrenal glands (or another organ or system).
All I know is that my body responds to 5 mg of any medicine as if it has been exposed to 1000 mg. I am talking about not just side effects, but every element of my response to the medication. The side effects and the symptoms of overdose, and the exaggerated effect of the medicine itself. A neglible dose of ALL medications (5 mg) gives me not only an exaggerated effect of its purpose (like a sedative, etc) but many side effects as well as the symptoms of overdose. It is ruining my life as well as driving me insane. It has definitely taken it's tole on me, and my life as a whole has definitely been affected negatively.
PJ59
02-04-2005, 12:13 AM
JoeJack101,Please think more positively! Eventually we will find some info on something that will help!!!!Just curious,did you ever remember any reactions to vaccinations such as getting sick or very sore at injection site? What type of area do you live in,or have lived in sometime in your past-near any chemical factories,dump sites or anything like that? If you don't have any relatives with this problem,most likely it is caused by something you have come in contact with somewhere during your life. I have never heard of anyone else born with induced labor having this problem. I am taking this problem on as a major research project & hope to come up with some ideas as I agree that it is totally ridiculous to react to stuff.And if my drs aren't a lot of help,I must find something that will help!!!!! And in my case,when I was used to getting pain relief from ibuprofen and now can only stare at the bottle & hope that someday I can have it again! I totally feel for you!!! I have a lifetime involvement with traditional vet.medicine and animal care so have observed & have given thousands of doses of meds to animals.Thinking back,I have only seen 3 deaths from medication reactions ,but those situations had almost no chance of a positive outcome.And I can only think of 3 cases of anaphylactic reactions to drugs that were easily reversed. I have had more reactions in the past 1.5 years than I have ever seen in animals over a many year time span. Sounds like you have had this reacting problem a lot longer than I have. The positive news that I have to report is that I have been on antibiotic for 2 days with no problem!!! Also I am looking into a brand new blood test that checks DNA for drug reaction profile. Also I am looking into Orthomolecular medicine, but would probably have to travel many states away to a dr in that area. Also Environmental Medicine area may have some answers for us. Any drs specializing in Environmental or Orthomolecular Medicine in your area??Also there is a condition called Multiple Chemical Sensitivity Syndrome that also is worth looking into. Don't give up yet as I am sure there are answers out there somewhere!!!!!! Think positive thoughts as it really could be a lot worse! Please keep in touch!
JoeJack101
02-04-2005, 01:29 AM
I have heard of the DNA Drug Reaction Profile you speak of. I would have to say that I would expect mine to come back normal. You see, the drug metabolism problem that the DNA profile checks for, from my understanding, deals with a patient not being able to break down the drug over a long period of time, not necessarily over-responding to it. The medication builds up over a period of time in poor metabolizers. My reaction is immediate. I am going to have to look into Orthomolecular Medicine and Environmental Medicine, as well as Multiple Chemical Sensitivity Syndrome.
I am reminded of a scene from "A Beautiful Mind" where the main character is asked to describe love and then prove it. If someone was to ask me to prove that my mother and father love me, I would have difficulty explaining how I "just know" that they do. Sure, I could attempt to list all the things they have done for me and said to me, and the dates they have done or said these things, and the frequency. But an intelligent person could still be convinced otherwise if he wanted to be. This is just like my situation. I JUST KNOW that I have this problem with medications (and herbs), even though it seems to be very difficult for me to explain to doctors how I know.
Thanks for the support. I do intend to stay in touch. It means so much to have someone take what I have to say about my problem genuinely rather than attempt to negate every statement I make.
I am reminded of a scene from "A Beautiful Mind" where the main character is asked to describe love and then prove it. If someone was to ask me to prove that my mother and father love me, I would have difficulty explaining how I "just know" that they do. Sure, I could attempt to list all the things they have done for me and said to me, and the dates they have done or said these things, and the frequency. But an intelligent person could still be convinced otherwise if he wanted to be. This is just like my situation. I JUST KNOW that I have this problem with medications (and herbs), even though it seems to be very difficult for me to explain to doctors how I know.
Thanks for the support. I do intend to stay in touch. It means so much to have someone take what I have to say about my problem genuinely rather than attempt to negate every statement I make.
JoeJack101
02-05-2005, 04:51 PM
Dear PJ59,
I am extremely interested in finding out if me and you have the exact same problem. Maybe you can do me a huge favor and do a simple test that will help. Go to a gas station that sells a wide selection of drinks. In the refrigerated drinks display, look for a drink collection all in unique clear glass bottles called SoBe. Most decent gas stations now sell SoBe beverages, although I have seen SoBe drinks in Wal-mart among other places. SoBe is owned by Pepsi although this fact isn't widely known. Most SoBe beverages contain a small amount of medicinal herbs in them. A common medicinal herb contained in their drinks is Panax Ginseng, which is widely known as a natural energy booster. The herbal content is very clearly labeled on the back along with the amount of the herb that the drink contains. Pick out a drink with Panax Ginseng, and if you find "SoBe Nirvana" get that one for sure (It's orange), b/c that is one that I remember my reaction to VERY specifically. I wouldn't get the canned ones like SoBe No Fear nor SoBe Adrenaline Rush. Also, some SoBe drinks only have like vitamins in them, so even I don’t have a reaction to that. Don’t get one of those. Everyone I know has NO response or reaction to these drinks, but I have a definite unique reaction to every one.
If you want to be extremely careful, pour a small amount (basically a sip) into a large glass. Fill that with water so that the negligible amount of the drink (and its herbal contents) are now extremely diluted in the glass of water. Touch it with you finger. Wait 30 seconds. Notice any reaction or feel any different? If not, starting drinking that glass. If you still don't notice anything, put a finger in the actual SoBe beverage itself. If you still don't notice anything drink up the SoBe beverage.
If you notice any reaction what-so-ever, write down notes of each and every detail. I can easily compare all of your details of anything you notice with what I noticed when I have experienced the same level of exposure. I am most familiar with SoBe Nirvana and somewhat familiar with my reaction to SoBe Green Tea.
I feel that this information will be extremely useful to the both of us to compare and contrast. Maybe our case is identical. Maybe it isn't so similar. This is the best and safest way that I can think of to be able to tell.
I know this whole thing sounds EXTREMELY crazy. But, in my opinion, we need a very safe, inexpensive, way to compare our potential reaction to the same (herbal/medicinal) substance and measure the reaction as scientifically and accurately as we possibly can.
You may notice nothing or you may notice something very unique, and I am interested to hear the results of this weird but simple test.
Thank you.
I am extremely interested in finding out if me and you have the exact same problem. Maybe you can do me a huge favor and do a simple test that will help. Go to a gas station that sells a wide selection of drinks. In the refrigerated drinks display, look for a drink collection all in unique clear glass bottles called SoBe. Most decent gas stations now sell SoBe beverages, although I have seen SoBe drinks in Wal-mart among other places. SoBe is owned by Pepsi although this fact isn't widely known. Most SoBe beverages contain a small amount of medicinal herbs in them. A common medicinal herb contained in their drinks is Panax Ginseng, which is widely known as a natural energy booster. The herbal content is very clearly labeled on the back along with the amount of the herb that the drink contains. Pick out a drink with Panax Ginseng, and if you find "SoBe Nirvana" get that one for sure (It's orange), b/c that is one that I remember my reaction to VERY specifically. I wouldn't get the canned ones like SoBe No Fear nor SoBe Adrenaline Rush. Also, some SoBe drinks only have like vitamins in them, so even I don’t have a reaction to that. Don’t get one of those. Everyone I know has NO response or reaction to these drinks, but I have a definite unique reaction to every one.
If you want to be extremely careful, pour a small amount (basically a sip) into a large glass. Fill that with water so that the negligible amount of the drink (and its herbal contents) are now extremely diluted in the glass of water. Touch it with you finger. Wait 30 seconds. Notice any reaction or feel any different? If not, starting drinking that glass. If you still don't notice anything, put a finger in the actual SoBe beverage itself. If you still don't notice anything drink up the SoBe beverage.
If you notice any reaction what-so-ever, write down notes of each and every detail. I can easily compare all of your details of anything you notice with what I noticed when I have experienced the same level of exposure. I am most familiar with SoBe Nirvana and somewhat familiar with my reaction to SoBe Green Tea.
I feel that this information will be extremely useful to the both of us to compare and contrast. Maybe our case is identical. Maybe it isn't so similar. This is the best and safest way that I can think of to be able to tell.
I know this whole thing sounds EXTREMELY crazy. But, in my opinion, we need a very safe, inexpensive, way to compare our potential reaction to the same (herbal/medicinal) substance and measure the reaction as scientifically and accurately as we possibly can.
You may notice nothing or you may notice something very unique, and I am interested to hear the results of this weird but simple test.
Thank you.
PJ59
02-05-2005, 06:05 PM
Dear JoeJack101,No two people can react to something the same way but I am willing to try it after I am done with "elimination testing of the added B vits". I am an hour away from the local SoBe store but have had the one with cranberry-something mix,think it was called Elixir?? with no problems. Do you remember if that one had ginseng? I vaguely remember trying an orange colored one that had carrots in it,can't remember the name other than it didn't impress me. But on my next trip to the great metropolis I shall pick up a bottle of SoBe Nirvana & let you know. Take Care.
JoeJack101
02-05-2005, 06:14 PM
Dear PJ59,
The Elixir's have no herbal content. Maybe the one you tried was Promegranate Cranberry or Cranberry-Grapefruit, again both of which have no herbal contents. There is also a Orange Carrot, which is an elixer and doesn't have any herbal contents.
Yeah, when you make that trip, please be sure to let me know if you have a reaction. (aka. increased or decreased energy, sleepy all the time or insomnia, etc.)
I know we won't react the exact same way, but if you react that is what is significant. Because nobody else notices anything different or a reaction but me, because of my sensitivity to the effects of herbs/medicines.
Thanks.
The Elixir's have no herbal content. Maybe the one you tried was Promegranate Cranberry or Cranberry-Grapefruit, again both of which have no herbal contents. There is also a Orange Carrot, which is an elixer and doesn't have any herbal contents.
Yeah, when you make that trip, please be sure to let me know if you have a reaction. (aka. increased or decreased energy, sleepy all the time or insomnia, etc.)
I know we won't react the exact same way, but if you react that is what is significant. Because nobody else notices anything different or a reaction but me, because of my sensitivity to the effects of herbs/medicines.
Thanks.
Jenteal
02-05-2005, 09:48 PM
For the B vitamins Thye use to make me very nervous. I was edgy and mean after I took them. At one time I was only taking the B-12 then I switched to the B complex. I had to stop and start again with small amounts. I broke the pills in half after about 5 months I am able to take the normal servng amount. I guess my body was just so depleted of B vitamins that it went into shock and reacted that way.
JoeJack101 I am sorry for your torubles. Sadly I have no answers for you. The only remote thing I can think of is my cousin was like you only not so severe. Not 100% sure about the herbs reacting as much. The dr. dignoised her with having ADD. ADD stands for, Attention Deficit Disorder. After many ries with different ADD medicine she was much better at tolerating the things that she once was not able to.
Sorry if that info is of no use to you.
Jenteal
JoeJack101 I am sorry for your torubles. Sadly I have no answers for you. The only remote thing I can think of is my cousin was like you only not so severe. Not 100% sure about the herbs reacting as much. The dr. dignoised her with having ADD. ADD stands for, Attention Deficit Disorder. After many ries with different ADD medicine she was much better at tolerating the things that she once was not able to.
Sorry if that info is of no use to you.
Jenteal
PJ59
02-05-2005, 11:42 PM
Hi Jenteal,Just curious,did you have any type of bodily insult before you had a problem with B Vits such as injury or illness? I had always taken a multivitamin supplement & then added in the B Complex Vits about 1 year ago to try to help build myself back up.Thanks for your input.
Jenteal
02-06-2005, 11:14 AM
Not that I can recall. I tried many times to take them over a course of about 5 years. Each time I had the jitters and my personality was just hateful. I had been really tired for a few months. I take protein shakes, Lysine,chromium picolnate,flaxseed oil. Vit E, fish oil,L-Carnitine,Glucosamine, MSM. I hardly eat any food with iron or B so I fiqured that the B and Iron is what I needed. I did have an accident with a weedeater that really did a number on my leg. I had already conquered the B's and had been taking them for about 7 months.
Sadly they have not cured my fatigue.
Jenteal
Sadly they have not cured my fatigue.
Jenteal
PJ59
02-06-2005, 02:29 PM
Hi JoeJack101, Just thinking-do you have any reaction to black pepper? I do !
JoeJack101
02-13-2005, 06:41 PM
Dear PJ59,
I have had regular pepper that is most commonly used on foods, and I do not detect any reaction. I looked up "Black Pepper" on Yahoo, and one site makes it appear that "Black Pepper," which I assume is different than the regular pepper I use on foods, has many medicinal uses. According to the site, it has in the past been used to treat Chilbains, Colds, Constipation, Digestive Problems, Flatulence, Heartburn, Indigestion, Loss of Appetite, Muscle Aches and Pains, and Sinus Congestion. It is said to have three main properties: Diuretic, Expectorant, and Stimulant. With that said, it seems to have medicinal properties in the same way that any herb I have reacted to does. I would expect to have a severe reaction to this, assuming it is different from normal "Salt & Pepper." Can you describe your reaction to "Black Pepper" and is it the same as regular pepper?
I have had regular pepper that is most commonly used on foods, and I do not detect any reaction. I looked up "Black Pepper" on Yahoo, and one site makes it appear that "Black Pepper," which I assume is different than the regular pepper I use on foods, has many medicinal uses. According to the site, it has in the past been used to treat Chilbains, Colds, Constipation, Digestive Problems, Flatulence, Heartburn, Indigestion, Loss of Appetite, Muscle Aches and Pains, and Sinus Congestion. It is said to have three main properties: Diuretic, Expectorant, and Stimulant. With that said, it seems to have medicinal properties in the same way that any herb I have reacted to does. I would expect to have a severe reaction to this, assuming it is different from normal "Salt & Pepper." Can you describe your reaction to "Black Pepper" and is it the same as regular pepper?
PJ59
02-14-2005, 12:16 AM
Hi JoeJack101,Black Pepper = table pepper.Black pepper makes my tongue swell up & & can't taste anything for hours. I am also sensitive to red pepper but not quite as extreme of a reaction as black pepper.
I can't find any So-Be Nirvana. What is your second choice??
Take Care.
I can't find any So-Be Nirvana. What is your second choice??
Take Care.
JoeJack101
02-14-2005, 12:52 AM
Well, just make sure that the SoBe drink you choose has Panax Ginseng Extract in it. It's easy to tell what herbal extracts are contained in the drink by looking at the bottle. If you see SoBe Drive, get that one (although I think they no longer make that one, i dont know). Otherwise, just make sure the drink has Panax Ginseng.
PS. (If worse comes to worse, and you can't find one with Panax Ginseng, just make sure it has some herbal extracts in it.)
PS. (If worse comes to worse, and you can't find one with Panax Ginseng, just make sure it has some herbal extracts in it.)
PJ59
02-16-2005, 04:49 PM
Hi JoeJack101,I just drank 1/2 bottle SoBe Dragon(ginseng,ginko,& guarana).
I definately got an instant buzz to my head & felt more energetic than I have in a long time. Anything else I should watch for?
I definately got an instant buzz to my head & felt more energetic than I have in a long time. Anything else I should watch for?
JoeJack101
02-16-2005, 05:55 PM
Watch for how you sleep tonight. Whenever I have Panax Ginseng, even the smallest amount, I cannot sleep AT ALL until two or three days later. Let me know how long it takes for your body to return back to normal. For example, if you have trouble sleeping tonight, let me know when you are able to sleep again. Maybe you can see if someone else who drinks the bottle notices the same energy effect or nothing? I doubt they will. And, did you first notice the energy after you had a half bottle, or after a sip? My reaction is instant after a sip. Literally a sip, although I have had half a bottle before. My reaction is within like 5 to 10 seconds or sooner after drinking it. How quick is your reaction?
PJ59
02-16-2005, 11:07 PM
Hi JoeJack101, The buzz was immediate after the first sip. I never really got high like a caffeine overload, just energetic.Also did you ever notice anything unique about your skin and/or tongue after drinking this type of drink? I was feeling courageous today so finished off the bottle & am still okay 6 hours out.Dragon is an excellent flavored beverage! I will let you know about the way it affects my sleep.That probably won't be a fair comparison as insomnia is part of my normal life these days. Take care!
JoeJack101
02-16-2005, 11:54 PM
If you are feeling courageous, you might try other SoBe herbal drinks as well after this "experiment" is over with. The "Buzz" being immediate with one sip in my opinion isn't normal. That is the same thing that happens to me. Doctors tell me that there is no way that the herbs could absorb themselves into my bloodstream and start taking effect that quickly. When my body has minimal contact with Panax Ginseng, huge behavioral changes in me are obvious. I also notice "random happenings" in a "specific area of the body." By the way, Panax Ginseng is known to treat impotence. Good luck with the experiment. I think we are both going to learn alot from this.
PJ59
02-17-2005, 12:43 PM
Hi JoeJack101,OK I will pick up some more SoBe herbal drinks to try at a later date.No ,I did not notice any unusual happenings with my body.My sleep pattern was near normal(insomnia for me) but had definate buzz lasting into today.Right now there are too many variables going on with me so probably couldn't give you a true scientific answer to your questions. I just finished a course of antibiotics(which I tolerated ok) for long term head infection. My internist finally is starting to understand that I have a problem with metabolizing medications !!!! And labelled me as being sensitive to everything.
So there is hope in finally getting the doctors to listen.Unfortunately it takes time,persistance, and finding the right dr. (I had at least 10 office visits + numerous phone calls in 14 months time and had to put up with being labelled as a mental case until I finally got the point across to this internist!)Now I am supposed to be taking muscle relaxant,NSAID,antihistamine, & decongestant for head infection and ribcage spasms. And the dr knows I am sensitive to meds?????? So I tried the SoBe before starting the meds. Today I go back for another cat scan of my head to see if I need more antibiotics. You can bet that I won't be taking 4 meds at once with my history and definately not at normal dosage! Keep me posted as to what is going on with you. Take Care !
So there is hope in finally getting the doctors to listen.Unfortunately it takes time,persistance, and finding the right dr. (I had at least 10 office visits + numerous phone calls in 14 months time and had to put up with being labelled as a mental case until I finally got the point across to this internist!)Now I am supposed to be taking muscle relaxant,NSAID,antihistamine, & decongestant for head infection and ribcage spasms. And the dr knows I am sensitive to meds?????? So I tried the SoBe before starting the meds. Today I go back for another cat scan of my head to see if I need more antibiotics. You can bet that I won't be taking 4 meds at once with my history and definately not at normal dosage! Keep me posted as to what is going on with you. Take Care !
JoeJack101
03-29-2005, 09:48 PM
Hey HealthBoards People, please listen to my situation. I still haven't gotten any useful treatment for my problem, and it is very much needed. PLEASE HELP ME OUT...................... UGH!
To Recap:
My body overreacts to the pharmacological effects of any medicinal substance including herbs and prescription drugs. For now, I would like to refer to it as Pharmacological Sensitivity Syndrome I am currently eighteen years of age, and I have been to many physicians about this problem, only to be sent away having received no relevant information or help. This makes getting a referral to see a specialist very difficult. To clarify the symptoms, I can provide an example. If my body is exposed topically or orally to a medicinal substance (ex. Prescription drug) in extremely small amounts, the signal that the drug gives to the body will be received as strong as a "normal" person who receives a very large amount of the substance. If I am exposed to a typical dose, it is the equivalent of a typical patient receiving an overdose. My case of this is much more extreme than it sounds, and it is also much more of a problem to me than one could imagine. I have had all basic blood tests done regularly only for them to come back generally normal. I have supposedly had basic liver and kidney tests, which came back generally normal as well. I can assure you that the problem is not psychological in nature as it would appear. I am convinced that there has to be some form of treatment for this. Please provide me with information regarding which type of doctor(s) to see and any possible options I may have to treat this or at a minimum understand it better.
To Recap:
My body overreacts to the pharmacological effects of any medicinal substance including herbs and prescription drugs. For now, I would like to refer to it as Pharmacological Sensitivity Syndrome I am currently eighteen years of age, and I have been to many physicians about this problem, only to be sent away having received no relevant information or help. This makes getting a referral to see a specialist very difficult. To clarify the symptoms, I can provide an example. If my body is exposed topically or orally to a medicinal substance (ex. Prescription drug) in extremely small amounts, the signal that the drug gives to the body will be received as strong as a "normal" person who receives a very large amount of the substance. If I am exposed to a typical dose, it is the equivalent of a typical patient receiving an overdose. My case of this is much more extreme than it sounds, and it is also much more of a problem to me than one could imagine. I have had all basic blood tests done regularly only for them to come back generally normal. I have supposedly had basic liver and kidney tests, which came back generally normal as well. I can assure you that the problem is not psychological in nature as it would appear. I am convinced that there has to be some form of treatment for this. Please provide me with information regarding which type of doctor(s) to see and any possible options I may have to treat this or at a minimum understand it better.
PJ59
03-30-2005, 12:16 PM
Hi JoeJack101,
Please list all the types of drs that you have seen so far. Sorry to hear nothing has helped yet. Maybe you will out grow your sensitivities. I guess what helped me the most was abstaining from every foreign substance for as long as possible such as drugs,vitamins,chemicals,possible allergens,etc. Have you ever had any allergy testing or seen an allergist? I abstained for over 2 months from drugs,vitamins,most food additives (dr's orders). Then amazingly I could tolerate some things again. But I am overly cautious as don't want to get into that state again of over reacting to everything. Definately it is a scarey situation to react to everything. Have you ever lived in a different location where you did not have such a sensitivity problem such as different state,different climatic conditions,different home????I know of several individuals that have moved to a different location & have had a completely different set of health problems.I'm not sure if we have the same problem,but think it it somewhat related as to the over-sensititivity of foreign substances.
Take Care !
Please list all the types of drs that you have seen so far. Sorry to hear nothing has helped yet. Maybe you will out grow your sensitivities. I guess what helped me the most was abstaining from every foreign substance for as long as possible such as drugs,vitamins,chemicals,possible allergens,etc. Have you ever had any allergy testing or seen an allergist? I abstained for over 2 months from drugs,vitamins,most food additives (dr's orders). Then amazingly I could tolerate some things again. But I am overly cautious as don't want to get into that state again of over reacting to everything. Definately it is a scarey situation to react to everything. Have you ever lived in a different location where you did not have such a sensitivity problem such as different state,different climatic conditions,different home????I know of several individuals that have moved to a different location & have had a completely different set of health problems.I'm not sure if we have the same problem,but think it it somewhat related as to the over-sensititivity of foreign substances.
Take Care !
JoeJack101
03-30-2005, 10:39 PM
Endocrinologists and Neurologists require doctor-to-doctor referals of which I have been unable to get so far. I have little or no problems with Vitamins and Amino Acids. I also do not think I am sensitive to chemicals. I do have a chronic headache problem that is minor and at the present time, I am unconcerned about the headache, as it is the least of my problems. I used to live in Mississippi and now I live in Texas. I have seen no change in health conditions here, except for the fact that I no longer experience symptoms of allergies (like pollen type allergies that made my nose run constantly). I have been to allergist and talked about my sensitivity to herbs/drugs problem, which was no help.
PJ59
04-25-2005, 01:26 PM
Hi JoeJack101,
Sorry for taking so long to reply to your last post as have been busy with my occupation & doctoring. I think I have found a major contributor,if not the root to my chemical sensitivity problem. (Not with medical help,but think I finally have figured it out on my own.) This class of chemicals may possibly be a factor in your problem also and I think it would be worth your time to think about this also. Quaternary Ammonium Compounds. They are everywhere! Quats are in meds,disinfectants,hand sanitizers,soaps,shampoos,etc...I finally figured this out by medication label comparisons & experimentation. The chemical that I think is causing me to react to meds is benzalkonium chloride -used as a preservative in meds(disinfectant). After many years of exposure to quaternary ammonium compound disinfectants ,I think this has created a cell permeability problem as quats are a rare skin sensitizer,meaning they change the permeability of the cell membranes as to allow stuff to enter abnormally(poisoning the system). Anyone else out there with experience in this area ? I haven't discussed this with my internist yet as is on vacation again....But I have an appt to see a specialist (ENT) for sinus infection this week so I will see what reaction I get for my theory. Please keep me posted.
Take care!
:)
Sorry for taking so long to reply to your last post as have been busy with my occupation & doctoring. I think I have found a major contributor,if not the root to my chemical sensitivity problem. (Not with medical help,but think I finally have figured it out on my own.) This class of chemicals may possibly be a factor in your problem also and I think it would be worth your time to think about this also. Quaternary Ammonium Compounds. They are everywhere! Quats are in meds,disinfectants,hand sanitizers,soaps,shampoos,etc...I finally figured this out by medication label comparisons & experimentation. The chemical that I think is causing me to react to meds is benzalkonium chloride -used as a preservative in meds(disinfectant). After many years of exposure to quaternary ammonium compound disinfectants ,I think this has created a cell permeability problem as quats are a rare skin sensitizer,meaning they change the permeability of the cell membranes as to allow stuff to enter abnormally(poisoning the system). Anyone else out there with experience in this area ? I haven't discussed this with my internist yet as is on vacation again....But I have an appt to see a specialist (ENT) for sinus infection this week so I will see what reaction I get for my theory. Please keep me posted.
Take care!
:)
JoeJack101
05-21-2005, 04:08 PM
I think that Quaternary Ammonium Compounds is WAY off. I don't know what the hell is causing my problem. I am 18, and MY LIFE SUCKS WORSE THAN ANY F***IN PERSON ON THIS ENTIRE PLANET. I AM READY TO DIE B/C OF THIS, AND NOBODY GIVES A RATS A$$. USUALLY, WE ARE LED TO BELIEVE OUR PARENTS, FRIENDS, ETC. ARE THERE FOR US 100% IN TIMES OF NEED, BUT THEY AREN'T, NOT AT ALL. THEY JUST WANT YOU TO THINK THEY ARE. IT'S SELFISHNESS IS WHAT IT IS. DOCTORS JUST WANT MONEY AND A NICE HOUSE AND NICE CAR. SOMEDAY, THEY WILL BE SORRY. GOD ONLY KNOWS HOW BAD MY LIFE IS RIGHT NOW, ESPECIALLY B/C OF THIS. GOD ONLY KNOWS................................... .................................
A_rafferty
05-21-2005, 09:02 PM
JoeJack, Calm down and take a deep breath. Have you even seen a psychologist or psychiatrist for this yet? If it's causing you this much trouble and you want to find out what's wrong go ahead and see one, give it a try. If this problem is not psychological, as you say, at least you can see a therapist of some kind to talk your feelings out about this situation. There are people out there who can help you. Good Luck.
JoeJack101
05-22-2005, 01:10 AM
If people through rocks at you everyday and continued to throw them and hurt you and hit you, then I don't think a mental health professional would do a darn thing for you. You still would feel all that pain. My point is: Physical problems are not helped with psychological help. The only talking I care to do anymore is talk that contributes to the solution or resolution of what exactly is causing my problem and ways to treat or eliminate it.
A_rafferty
05-22-2005, 01:30 AM
Fair enough, but have you seen a psychologist/psychiatrist/therapist yet? If you are really in that much pain and that desperate for ANY kind of help, what harm would seeing one do? Even if it is completely physical, it is obvious you are suffering mentally from this condition, and they can help you deal with those feelings. :)
JoeJack101
05-22-2005, 02:30 AM
Good point. I am convinced that due to my inability to clearly explain exactly what causes my problem or even what it is exactly and my inability to provide solid clearly documented evidence of it, that a mental health professional would "diagnose" me with a "panic disorder" or "anxiety disorder" and try to begin "treatment" and "therapy" for it. This would only drive me into further distress, and I don’t know how I would cope. I am afraid it might also take attention away from the physical source of the problem.
A_rafferty
05-22-2005, 02:52 AM
Well, you don't know what is causing your problem or what it is and that is a lot of stress.. a lot for anyone to handle! I sincerely do not believe you are making it up whatsoever but I do think talking to someone would help. Not all psychologists etc. will just call it anxiety or panic and try and give you meds... they will listen to you and perhaps give you tools to deal with this until you find out what's going on. It really helps to just talk to someone that is unbiased, go for a psychologist, they don't prescribe meds just there to listen and give you some advice on how to cope in the meantime... might as well try it out, it doesn't take up much time. Also, I have a problem very close to what you are describing, but I don't take any pills and just steer clear from things like that. I think that's what you have to do, and a psychologist can help you cope with being/having to live that way. Some things cannot be explained and it's your life you have to figure out a way to cope with it.
PJ59
05-22-2005, 03:03 AM
Hey JoeJack101, Relax !!!!! Look at all the positive aspects of your situation. It really could be a whole lot worse. Sounds like you are still healthy other than you are very sensitive to certain substances. I still think you have some kind of a multiple chemical sensitivity. The trick is to find the trigger component . I stumbled across mine accidently after reading lots & lots of labels & tons of research. The doctors aren't around you (all the time)to help give you the answers that you need so it may be up to you to do a bunch more detective work to try to discover what makes you "tick". The medical person that helped me come to grips with this idea was the local imaging dept. head. I hadn't been to a dr for 18 yrs & then have practically " lived"with them the past 2 years when my life turned upside down :) when I started reacting to everything. Every time the drs tried to help me, I got worse. Finally I decided it was entirely up to me to figure my problem out as I wasn't getting any help even though the drs were trying. The kicker in my situation is just going into a medical facility causes a chain of allergic reactions regardless of what I may come in contact with the following day. (Because I have developed a sensitivity to the disinfectant used on the premise.) I can't believe how much better I am feeling after eliminating quats to a certain degree from my life for such a short time. And I still have lots of research to do as I am no where near the kind of dr that can help me with my problem. I am still not convinced that my internist understands the parameter of my problem so it is up to me,myself,& I to keep me as safe as possible from the triggering factors. And something the drs keep telling me,"Some people are just sensitive." But sounds like you are alot like me, you are tired of your situation & you want answers. Unfortunately the answer is not always easily found. You sound like a very intelligent individual so I am sure if there is an answer out there,you are plenty capable of eventually figuring it out sooner than the medical field as you know yourself better than anybody else!! Please keep your chin up & keep searching for some kind of a common denominator in your life currently or in the past that may be the cause of your sensitivity. Please keep us posted & we all will be there to try to help you out.
Take Care !
Take Care !
rosebuddy
05-24-2005, 09:12 AM
Alot of people with fibromyalgia cannot tolerate chemicals, including some medications. Some people are not diagnosed for years and go from dr to dr and are told basically to that they have anxiety and or depression. (duh) I have worked for drs and know that when they cannot dx because they won't take the time because their malpractice premiums are so high that they have to move on to the next patient.
In my fibromyalgia book it is called chemical sensitivities disorder.
You may have fms but not have all the symptoms. I have it and am on disability, but i don't have sleep problems which is one of the top 3 symptoms of fms.
I hope that you find out what is wrong with you soon and will keep your sh__ together when you see doctors. I know from working them and also from being a patient, that the more upset you are, the less they want to do with you. Prepare for you appointment, but don't go in with a long list. Take a supportive person with you if you can. And most of all explain you symptoms in a matter of fact way without becoming emotional. If the doctor cannot diagnose you, ask for a referral to a doctor who may be able to help you.
Yes, it is very common for people who cannot be dx'ed or treated to become depressed and anxious. It happened to me.
In my fibromyalgia book it is called chemical sensitivities disorder.
You may have fms but not have all the symptoms. I have it and am on disability, but i don't have sleep problems which is one of the top 3 symptoms of fms.
I hope that you find out what is wrong with you soon and will keep your sh__ together when you see doctors. I know from working them and also from being a patient, that the more upset you are, the less they want to do with you. Prepare for you appointment, but don't go in with a long list. Take a supportive person with you if you can. And most of all explain you symptoms in a matter of fact way without becoming emotional. If the doctor cannot diagnose you, ask for a referral to a doctor who may be able to help you.
Yes, it is very common for people who cannot be dx'ed or treated to become depressed and anxious. It happened to me.
rosebuddy
05-24-2005, 09:13 AM
multiple chemical sensitivity disorder
JoeJack101
05-24-2005, 12:25 PM
Well, I think I may have found what is actually related to my problem. I have (in my opinion a large number of the symptoms associated with an adrenal abnormality. I went to see an endocrinologist in Houston yesterday, and he did notice that my blood pressure dropped 16 points when I stood up as opposed to the B.P. taken when i was sitting down. He said that may be an indicator that we need to test the adrenals. I did see a web site that said that patients with adrenal problems often report a sensitivity to medications and herbs. I have to go back there for testing in two days or so. Hopefully, if it IS adrenal problems, and if we can treat it, then my sensitivity will go away. I am just REALLY HOPEFULL right now. This is going to take a lot of prayer on my part.
Kat1966
05-24-2005, 12:42 PM
Hey, I am so glad that you came here. We care.... I am sorry I can't help. But I 've had some health problems and these are the best people to get help from when you need some help...
I have only been here oh 2 weeks and I love this board and the people have been so gracious, kind and patient enough to take the time to help...
I hope some one here can help you.
The Best,
kat1966
I have only been here oh 2 weeks and I love this board and the people have been so gracious, kind and patient enough to take the time to help...
I hope some one here can help you.
The Best,
kat1966
PJ59
05-25-2005, 05:10 PM
Hi JoeJack101,I really hope you find some of the answers to your problem and the best of luck at your appointment. Please keep us posted.
Take Care.
Take Care.
JoeJack101
06-08-2005, 03:27 PM
Turns out the ACTH Stimulation Test indicated that my adrenal glands are responding perfectly fine... UGH!
I have done some searching online and Mitral Valve Prolapse seems like the only likely explanation at this point.
"People with mitral valve prolapse are especially sensitive to all kinds of drugs and medications." ConsciousChoice: Mitral Valve Prolapse
"i have a mild prolapse of my mitral valve...there are some odd symptoms...sensitivity to drugs, if it's stronger than Tylenol my body freaks out, imagine the aftermath of the Demerol a mean nurse gave me" Blogger: janebejane.com
"Most people with MVP have no symptoms...Those who do usually experience one or more of the following:...Extreme sensitivity to medications" Heart1.com
On Mitral Valve Prolapse Syndrome: Research & Support Website a thread on the forum asks, "what other health problems you guys have besides MVPS??" Of the approx 25 replies to the post, at least ELEVEN PEOPLE listed 'sensitivity to meds or drugs' as one of the symptoms they have along with MVP or MVPS.
I'm not going to be able to start college this fall if I don't get a solution to this... Maybe MVP isn't the cause, but I just hope God leads me to an answer soon enough. I am going to see a cardiologist tomorrow in Houston, and I am going to request that he check me for MVP through an Echocardiogram (not to be confused with an electrocardiogram).
Any advice, knowledge, comments are still welcome and appreciated.
Sincerely,
Derek
I have done some searching online and Mitral Valve Prolapse seems like the only likely explanation at this point.
"People with mitral valve prolapse are especially sensitive to all kinds of drugs and medications." ConsciousChoice: Mitral Valve Prolapse
"i have a mild prolapse of my mitral valve...there are some odd symptoms...sensitivity to drugs, if it's stronger than Tylenol my body freaks out, imagine the aftermath of the Demerol a mean nurse gave me" Blogger: janebejane.com
"Most people with MVP have no symptoms...Those who do usually experience one or more of the following:...Extreme sensitivity to medications" Heart1.com
On Mitral Valve Prolapse Syndrome: Research & Support Website a thread on the forum asks, "what other health problems you guys have besides MVPS??" Of the approx 25 replies to the post, at least ELEVEN PEOPLE listed 'sensitivity to meds or drugs' as one of the symptoms they have along with MVP or MVPS.
I'm not going to be able to start college this fall if I don't get a solution to this... Maybe MVP isn't the cause, but I just hope God leads me to an answer soon enough. I am going to see a cardiologist tomorrow in Houston, and I am going to request that he check me for MVP through an Echocardiogram (not to be confused with an electrocardiogram).
Any advice, knowledge, comments are still welcome and appreciated.
Sincerely,
Derek