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Old 05-24-2007, 09:27 AM   #16
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beeatrice HB User
Re: POTS Syndrome

blondy.. I AM happy to hear you dont need ot take meds for pOTS.... itis comforting to know that youcan try to deal with it without meds......

 
Old 05-24-2007, 09:39 AM   #17
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Re: POTS Syndrome

doyle.......you are not crazy....... i do feel like im nuts too sometimes because of the symptoms.... when i stand up myheart goes up to 180!!!!!! i do feel lightheaded or like im on a boat but i also have menieres disease in both ears that affect my equilibrium so i think a lot of my feeling unstable balance is dueto that BUT myheart rate going up to 180 just by standing is all pots.... actually I had 2 cardios suspect i had this... my general doc when i told him aboutit had never heard of it.. so it sounds like you have a good doc Like you i drink soooo much water too.....but still get symptoms..somedays are better than others...

Like you i thought only older people got it..... guess not After I eat I FEEL LOUSY TOO...... my heart will race everytime and I will feel dizzy too... yesterday after dinner was pretty bad in particular..... UGH i have lost weight because of it.. i dont look forward to eating sometimes because I know how it will make me feel... I have always been slender: 5'9" and 128 lbs so I cant afford to loose anymore weight.

I also have suffered on occasion from sleep apnea and heartburn or acid in the esophagus too.. we cant win ;(

do you take pills for any ofyour other conditions?

 
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Old 05-24-2007, 09:41 AM   #18
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beeatrice HB User
Re: POTS Syndrome

BLONDY:
do you feel dizzy just when you stand or also when you sit?

 
Old 05-24-2007, 10:10 AM   #19
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Re: POTS Syndrome

Quote:
Originally Posted by beeatrice View Post
BLONDY:
do you feel dizzy just when you stand or also when you sit?
I get dizzy when I stand up too quickly, but whenever I change position too quickly, be it going to sitting or standing my heart starts to pound and beat quickly.

I'm technically suppose to still be on the meds, but I took myself off them because I'm sick of being on so many meds (see my signature),
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Type 1 diabetes- Paradigm 523 w/ Humalog and RT Sensor

Severe GERD and Gastroparesis- Prevacid, Domperidone, Zofran & Carafate as needed

Asthma- Advair 500/50, Qvar, Albuterol, Singular, Xolair

Last edited by blondy2061h; 05-24-2007 at 10:11 AM.

 
Old 05-24-2007, 02:24 PM   #20
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beeatrice HB User
Re: POTS Syndrome

do you feel dizzy at those times or all the time? anything you can advice in dealing with it?

 
Old 05-24-2007, 04:33 PM   #21
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Re: POTS Syndrome

Quote:
Originally Posted by beeatrice View Post
do you feel dizzy at those times or all the time? anything you can advice in dealing with it?
I don't really feel dizzy when I sit down, no.

My best advice in dealing with it is this:
1. Stay hydrated- if you get dehydrated it will be a million times worse. I suspect this is why some of the above posters have trouble in the sun. I carry a water bottle everywhere with me and am constantly sipping from it.

2. Don't lock your knees- if I stand up for long periods of time I have to walk around, I can't just stand in one place. I need to be very careful not to lock my knees.

3. Eat salt. Seriously, a high salt diet and high potassium diet helps.

4. Expect the effect- if you anticipate how you are going to feel, it's really better than having it suprise you. It makes it seem more normal, and if you don't get scared by it, you don't get the adrenaline further pushing up your heart rate.

5. Don't change position quickly. Thank you captain obvious, I know. I dangle my feet for awhile when I get up, and stand up slowly, especially first thing in the morning.
__________________
Type 1 diabetes- Paradigm 523 w/ Humalog and RT Sensor

Severe GERD and Gastroparesis- Prevacid, Domperidone, Zofran & Carafate as needed

Asthma- Advair 500/50, Qvar, Albuterol, Singular, Xolair

 
Old 05-25-2007, 12:33 AM   #22
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Re: POTS Syndrome

Hey Doyle, I'm a male a little older (40) then you and thought you would like to get my opinion on the tilt table test. I just had the tilt table test this past Tuesday morning. I like you have always been athletic. Competing in college baseball and football. Up into June 06 I was running 3 miles every other day and hitting the weights daily as I have for the past 27 years. I mean I have pushed myself hard in physical fitness endurance. This all changed in June of 06. I started feeling dizzy, and hightened anxiety, with palpatations of the heart. I had the full workup of heart tests, stress echo, nuclear stress,halter monitor, event monitor. I have begined PVC's and PAC's. Not many a few here and there. I have had the most difficult time in the year since my first palpatation. My heart races when I get up and just walk. I feel short of breath and just completely dizzy. I have walked or just stood still and my heart will go to 126 or more. Its a very scary feeling. My doctor kept saying panic attacks. Here take these! Drugs that just mask the symptoms. I'll keep this short because I have had many tests MRI's, CT' scans ect. over the past year. I have stopped exercising, which is a killer to me. Well this all leads to being in the hospital this week for three days trying additional testing to find what was wrong. Wednesday morning I had the Tilt table test. Like the other post said it starts off with IV,EKG, and blood pressure cuff. You are strapped to a table. There are two parts to the test. The first part: They bring the table up to a 70% or 80% height. Your feet don't touch the ground you are standing on the ledge of the table. For 23 min you are in this position. Every three minuets your vitals are checked. They keep you in this postion to allow your blood to collect into your legs. If your heart rate or blood pressure hasn't changed and you feel no symptoms ( dizziness, difficult breathing ect), they take you to step two. Step two: You will most likely be given a Nitroglycerin tablet. This is done to increase your heart rate. The dose is to achieve a heart rate 20% higher than the supine baseline rate, and testing is repeated for 20 minutes. I lasted less then a minuet. My HR jumped to 140. Here is what I remember what happened to me next. The technician saying I have to get your blood pressure. Me feeling very warm, and sweaty like a strong panic attack. I then started to see black spots that increased to the point I was blacking out. The technician saying your ok your ok I can't get a blood pressure reading. This happened for what seemed forever. She treid 5 times to get my blood pressure I had none. As I recall looking at the blood pressure monitor seeing systolic pressure --- and the diastolic pressure ---. At this point I couldn't see and could barley say "help me". My ears were going deaf. I was really within seconds of a black out. Finally she quickly lowered the table to flat. Within seconds I had an ok blood pressure, she got a reading. I was still alive covered in a cold sweat. And slowly recovered. It was the most horrble thing I have ever experienced. She then had to post all my recordings and called the doctor who confirmed my diagnosis "Tilt test positive for vasovagal altered nerve response" or Vasovagal syncope. I felt horrible the rest of the day. I retuned to my hospital room and was visited by two cardiologists whom said it wasn't a heart condition. There isn't anything that can be done to fix this besides trying different medications. I am now researching this condition to educate myself. I have been housebound for several months afraid to go out or even shop anymore. I have quit my job because of my dizziess and unsteadiness on my feet. I can't even drive or perform simple tasks. I am always very anxious and depressed. My life has changed. I don't feel good about the future.

I haven't wrote this to scare you about the test. You might not have my condition and will fare well on the tilt table test. I only wanted to share my expierence with the procedure. I can say that I finally have one answer to my year of hightened anxiety and racing heart rate. My doctor wants me to go to the Cleveland Clinic, Mayo Clinic, or the NIH. I am considering what to do next. Any questions feel free to ask and good luck to you.

Last edited by bigstan; 05-25-2007 at 12:37 AM.

 
Old 05-25-2007, 02:52 AM   #23
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Re: POTS Syndrome

Thanks for the info Stan. I'm kinda scared to take this test, not because of the test itself...but for the results. I know the test is going to be awful because there isn't any other explanation for how I feel. I have all the symptoms and I feel like crap almost every day. I try to stay active and just doing normal housework makes me feel awful. I'm having a hard time explaining how bad I feel to other people because the symptoms aren't something you can see. I don't look like I'm sick and I can walk around the house with no problem. My family thinks I'm crazy and some days I feel so bad that I can't even get up to call them. I was scheduled to play on a great softball team in my area and now I can't even take out the garbage without feeling awful. Has your doc given you any hope for being able to exercise again? I can't just stop doing everything or I'll be 400lbs. just by not doing anything. I rarely eat but still gain weight from doing nothing. Let me know...thanks.

 
Old 05-25-2007, 03:27 AM   #24
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Re: POTS Syndrome

BEE- I have only been on my reflux disease meds because I still have 2 tests to do for Crohns and Apnea. I have a C-PAP test for my Apnea next week to see if I need the mask to sleep normally(that sounds fun). And in June I have a capsule endoscopy(swallowing the pill with a camera in it) to determine the extent of my Crohns. After these 2 tests, I will start my meds for both of them....maybe . I printed out our conversations and gave it to my family so my family doesn't think I'm crazy and POTS is a REAL thing. I hate trying to convince people of how bad I feel. It's calming to know that you feel bad when you eat because I eat once a day(very little) and everyone thinks it's not healthy to do that. I'm not as thin as you 5'9 210 so I can stand to lose a little weight. But not doing anything is really making me gain weight. I'm normally a very muscular guy and now I'm looking like a very pudgy guy . Are you able to do anything athletic? You live in Cali where it's always warm but I live in the snow belt where it snows 6 months a year so getting outside is on a time limit. Can you still swim or at least walk? Oh yeah I just remembered that you don't take the meds...so you don't feel much different then when you were diagnosed . Let me know if you are able to do anything physical. talk to you later. bye

 
Old 05-25-2007, 12:58 PM   #25
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beeatrice HB User
Re: POTS Syndrome

BIG STAN:
What do youdo tohelp with the dizziness or unstability? How is your condition treated?

DOYLE: Hey. .. 210 at 5'9 IS NOT pudgy Its just right for a man.... What did your family say when you printed our conversation? It is soo true that because they cant see whats wrong then it must be all in yor head. Even aftermy diagnosis they still find ithard to believe that a person in the primeof their life and looks healthy cant seem to function well... Right now I cant exersice.. in fact my mom had aske dthe cardio wouldnt exercise help and he said well yes but her body cant do it right now... just by standing her heart rate gos up to 180 imagine if she added exercise to it?

You know what I do whichis sad .. wits hard to go anywhere nd taking out the trash believe me ITS a big deal! If I do go to a store I wil go to walmrt becasue they have the little carts you can drive... In order not to get stres as to why this 33 year old 'healthy' girl is on one I bandage my foot and tell the clerk I sprained it..... WHY? becasue no on can see any other reason why I shouldnt walk and to sit there and explain what Ihave is takes a lot out of me.....
Sounds funny


AnD yes because I livein Cali it is awayls too hot for me... I kid around telling family and friends I will move to ALaska... My air conditioning bill is about 300-500 dollars a month!!!!! Where I live itgets to be up 110 degrees.....

I also dont look forward to eating either but youknow what I started doing that has helped a LITTLE bit is eating every 2-3 hours but small meals like a banana or quesadilla.... a piece of chicken.. basically grazing all day.... When you have a heavy meal in your tummy your blood pressure drops and makes us feel worse..... eating throughout the day SMALL meals keeps pur sugars levels balanced and keeps or blood pressure from dropping..... Try it and see and let me know how it works... Oh I forgot to tell you that there are 3 things POTS people SHOULD NOT eat as my cardio told me: nitrates (deli meats, hot dogs etc.) garlic, caffeine and limit carbs . These foods specially garlic and nitrates for some reaosn tens to drop or mess bloop pressure and make symptoms worst for pots patients.....

FOR now physical activity has been taking a back seat... but this week for example I felt Ihad to push myself a little more tha usual becasue my legs started to hurt I think fromlack of exercise..... I dont want to add vein clots to mylistof problems

Let me know abot your other 2 tests.. I will be thinking about you

 
Old 05-26-2007, 10:12 PM   #26
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Re: POTS Syndrome

Hey BEE,
My family thought it was all in my head, of course. Even after the printout, it was still something nobody has heard of so I must be faking. I'm not a cruel person at all, but I wouldn't mind the people that doubt me to have this thing for a week or so and tell me how they feel. My diet has always been a little constricted because of my Reflux Disease. Nitrates are also bad for GERD and I almost never touch caffeine. As far as the exercise goes, I was able to walk the length of our mall here today(about as big as a big Walmart) but was really out of breath and couldn't stop sweating. My biggest concern right now is my job. I work in a steel propane tank factory where the work is very physical. On a normal day I would have to lift 200- 40lb tanks at a fast pace. Needless to say, I don't think that's gonna work anymore. I have a year and a half of college in for a degree in Pharmacy....but it got really expensive so I'm on hiatus as far as that goes right now. That kind of stress really doesn't help me feel any better either. I may have to go in debt just to go back to school so I can have a job that isn't so physical. My health has to be my first priority now and I still get paid decently now being off work. I know once I finish the schooling, money won't be a problem because pharmacist make great money....but that's 2 1/2 years away right now. Trying to relax and wait for this test is kinda hard....but talking to you has made it so much easier. Thanks alot....and thanks for the compliment too . I did have one other question. I keep hearing that POTS is very similar to Addison's. I haven't read up on Addison's much and I really don't know the difference. Were you ever tested for Addison's? I was just wondering because my doc never even mentioned it. Hope to hear from you soon.

 
Old 05-27-2007, 11:14 AM   #27
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beeatrice HB User
Re: POTS Syndrome

Hi D,

I know whatyou mean about having a loved one experience it even for 5 minutes.... I too have thought of it becasue unless they know what you are going through they will never know..... I have been diagnosed withit for about 3 months now but had it for the last 2 years.. even after 3 months my family is still not convinced there is anything wrong with me.... they hace started to come around somewhat but not entirely... I am not sure what is worse... feeling the way we do or having your family not believe of what you have thatis making you feel so aweful....

That's terrific about you walking the mall.. great job.. I dont think I could do that.... not all at the same time... Im proud of you

I completly understand about your work.... yeap there is no way you could do it.... it is diffcilut to do anything physical with us folks .... Pharamcy would be great for you... if at all possible I would encourage you to do it and HEY then you caould help us both about the meds we need to take for POTS jajajaja...... and you are right a career in pharmacy makes a great money... I had an ex boyfriend who wanted to go into phramacy becasue the salary was so great but he ended up going to West Point....

I have heard the same thing about Addisons and Pots .. I am not sure that I also know much aboutit... i was going to schedule an appointment with an endocronologist who wanted to do a blood test for it.... When I do I willlet you know.

But please dont stress too much about your test... it is not pleasent but I know from talking to you that you will do just fine in fact you will write me afterwards and say "thats it, dont understand what all the fuss was about! "

 
Old 05-31-2007, 03:03 AM   #28
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Re: POTS Syndrome

hey Bee-
I haven't been on here much because of serious chest pains. I won't dare go back to the ER where I live because it's a joke there. I've had about 10 EKG's and all have come back normal. I've had a heart CT scan and that was normal. But the chest pains I am having can't be anything other than my heart. They are in my upper left chest and it feels like that whole area gets really tight and sore for a few minutes then goes away. And in the morning I wake up with that area being sore to move or touch. It's not my pectoral muscle because I have no pain moving my arm or chest at any other time. I'm pretty worried and I'd have to drive a lotta miles to get to a decent hospital to get checked. The local cardio doc saw nothing out of the ordinary when I was in the hospital so going to him might be useless too. I'll let you know what happens. Bye

 
Old 05-31-2007, 11:58 AM   #29
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beeatrice HB User
Re: POTS Syndrome

sorry to hear that Doe sit hurt when you take a breath? if it still hurts you should see a doc.... The way I see it is they work fo rme so if I have to be there everyday then so be it... But I do have the pains you describe... also awith me when they do an ekg its all normal..... The docs tell me its stress or possible the muscles around the rib cage called cotochondirtis or osmehting like that..... if it is sore when you move in the mornings it does sound likemuscular to me though AND GERD I know can give you pains too like that becasue it can radiate to the left chest again what docs told me.. please keep me posted becasue I am concern about you

 
Old 06-02-2007, 03:47 AM   #30
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Re: POTS Syndrome

Thanks for your concern Bee, but I do need to see a doc. I've had GERD for 10 years and have had chest pains before... but not like this. Gerd chest pains are mostly right in my sternum and this is far from my sternum. The pains aren't actually in the muscles in my chest...well my pectoral muscles. These pains feel like they are in my chest wall on my upper left chest. It feels like my ribcage hurts there after I wake up and it hurts there after trying to do anything like going up the stairs a few times. Stupid 3 level house!! I don't have a real fast heartbeat(check it often), but it's like 120. I know that doesn't sound bad for a person that gets in the 180 range like you do....but it feels bad when I'm normally in the 60 range. I'm starting to get a little depressed because I hate feeling this bad ALL the time. Well a lot depressed. I feel like I'm 80 yrs old and all I can think about is that it just keeps getting worse...and it does. I'm sure the breathing problem is from anxiety from feeling awful and worrying about passing out. I'm really struggling with this right now and it seems to get worse by the day. I'm just trying to do as much as I can to make myself not think about it and relax....but that's hard when you feel like crap. I'll let you know if anything changes. I hope you are feeling well yourself. Talk to you later. Doyle

 
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