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Old 09-16-2002, 05:28 PM   #1
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Lisa T HB User
Unhappy I feel so alone!! Really need advice!!

Hello everyone! I'm gonna apoligize in advance, because I know this is gonna be lengthy.

Lets see, I'm 29 and am on no meds. I have had mri's, ct's, eeg's and all have come back normal. I have had a total of 3 eeg's (3 to 5 day stay in hospital), normal. The only thing that we have noticed is that when my chiropractor works on my neck (c1 - c4 are messed up) I have staring episodes or what I call seizures within 15 minutes of him working on me. The staring episodes last around ten minutes, I completely blank out. My seizures are almost always the same. I turn on to my right side and jerk, these last anywhere from 1 to 3 minutes. Afterwards I fall asleep and usually wake confused but okay. Let me clarify, I have these even when my chiro doesn't work on me - he is just able to bring them on. This has been going on for a full year now and I know no more than I did when it first started happening.

ALL the docotors I have seen say the same thing. That it is in my head. That I must be reliving some painful event that has taken place in my life. This is so not true. I haven't had a great life, but I have faced all the balls thrown in my direction and have been functioning well up till last year. Yes my stress level is up, because WE CAN'T FIGURE OUT WHAT IS WRONG!! Sorry! Anyways now my family is pushing for psychiatric evaluation to rule this out. I'm terrified. Last December my first neuro had put me on depakote to see if it would work, I had a severe reaction to it. I had a seizure and was paralyzed for eight hours after wards. My husband took me to the er and after I started coming around a social worker talked to me. She asked me all sorts of question. Like had I ever thought about suicide, or killing anyone. Questions like that. I answered no to all of them, they (her and the er doc) came back in and said they wanted me to see someone for stress. They felt that was what was wrong. I stupidily said yes and signed this paper they gave me. They took me upstairs to the psych ward, needless to say I freaked. They kept telling me to calm down or they would put me in the locked unit. I kept trying to tell them they had the wrong person, I was just being taken to a room to wait to get my stress evaluated. They told me, I was a danger to myself, that my family wouldn't be able to see me until the docotor told them it was alright, and that I would be there until he felt it was alright to release me. After an hour, my husband took me out of there. I walked out of that unit in my socks!

Anyways after that awful experience, I'm scared to go get evualated. Have any of you had an experience similiar? Did you have to get evualated to be taken seriously? I'm really scared! I have no doubts that there is something wrong with me, but not mentally! When did our system become you have to prove you are sick before we believe you. Any advice would be helpful, I'm on pins and needles over this.

Thanks!
Lisa

[This message has been edited by Lisa T (edited 09-16-2002).]

[This message has been edited by Lisa T (edited 09-16-2002).]
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Old 09-18-2002, 03:21 PM   #2
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Lisa T HB User
Unhappy

I don't know what to do!? I feel so alone. I can't figure out what to do. I'm scared one of these times I'm really gonna hurt myself. I've been so lucky, only bruises and cuts and bumps on the head. I know it could be so much worse. What is the use going to the doctors??? They aren't helping me, just taking all my money. God, I know there is something wrong, why won't they listen??? What should I do?

Lisa
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Old 09-19-2002, 08:13 PM   #3
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I am very sorry that you are having to be subjected to the treatment you are receiving. It is all too common for general docs to label seizures as mental illness, and they also do harm too by doing that if they are wrong. I have to ask, are you conscious when you have the seizures that involve jerking? Seizures that are like you describe usually involve a loss of consciousness during that time. No awareness of it until it is over. It is not at all uncommon for our tests to come back normal. That only means that the scalp electrodes on the EEG didn't detect it. Either the focus could be too deep for the electrodes to pick it up or there could be no seizure activity at the time of the test. My first EEG was normal, but I was diagnosed based on the description of my seizures. I had a good doc though. The MRI detects abnormalities in the structure of the brain (not the electrical activity)so if there is no mass or structural problem, it may not show anything. The focus or small mass of cells that triggers the seizures can be too small to be detected on MRI. The MRI also can show if excessive seizure activity over time has caused damage to the brain, but unless sufficient seizures have occurred to cause that, there would be nothing to detect from that standpoint. It is all so very individualized. Unless your doc is correct and is treating you for panic disorder, harm can be done if the diagnosis is really seizures that need different treatment. Since he gave you that diagnosis, it would seem that there would be a treatment plan for it. Is he treating you with meds or another treatments for Panic Disorder? Why not if he gave you that diagnosis? Others have been diagnosed just as you, and for some reason, Panic Disorder seems to be a favorite. No one can see it. It doesn't produce a rash etc that is visible, so who's to say he's wrong? That type of diagnosis is extremely subjective and leaves a lot of open area in there. Not at all specific and pinpointed so to speak. Good catch all diagnosis. Again, who's to say he is wrong. Nothing to measure to prove differently. That is, until you get to the right doc. The Epileptologist! Even if it does turn out to be pseudoseizures, because there really is a diagnosis called that, the correct treatment has to be offered. From what you have said, the usual treatment for pseudoseizures hasn't been mentioned either. What is your treatment plan? There has to be one of some sort, but for it to help, the correct diagnosis has to be found. You still need a good Epilepsy Specialist who knows epilepsy well enough to distinguish between the different conditions since many do seem to overlap in characteristics. It could even be another disease process going on that needs a Specialist to differentiate. Seek an Epilepsy Specialist, Epileptologist, at a Comprehensive Epilepsy Center. Get your Internist or Medical doc to refer you if you need one. Usually, Epilepsy Centers do require a referral from another physician. About the Chiro visits, I have never heard of those treatments precipitating seizures, but there is always a first time. I have read other posts from people who do say that Chiro does help their seizures. If this pattern of having a seizure after each visit is continuing, I would have to wonder if the visit is doing me more harm than good. If certain things cause me to have a seizure, those things I stay away from. Those are my triggers and avoiding them is part of caring for myself. Is it possible for you to get to a good Epileptologist who sees ONLY epilepsy patients? Is the med helping at all? The real goal is NO seizures, not just less. I have heard the reaction of your family before from many others as well as from my own. They too cannot see it, so they refuse to accept it. That is denial as well as ignorance. It also tells me just how important the person really is to the family. Healthy families usually support each other and are there to assist in helping members to a better place. They do not usually doubt, deny, and disregard members concerns. Not all families are healthy though. Sounds like they may have issues of their own. I think some families consider Epilepsy as one of those Family Secrets that very basically eats away at the very fabric of the family unit just because it is kept Secret. To deny the illness to me is the same as denying the member with the illness. I see no difference at all. Other illnesses are handled the same way too. A family that does this is not Healthy in the first place. The member with the Secret illness does not cause the other family members to react as they do. The members do that themselves. They have to own it and live with their actions as well as the consequences. I do wish you the best, and do keep us posted. You always can come here and receive support if your family members choose to keep their heads in the sand. It's really dark there in the sand, too. Stifling as well. They have a choice. You do too. Tattoo

[This message has been edited by Tattoo (edited 09-19-2002).]

[This message has been edited by Tattoo (edited 09-19-2002).]

 
Old 09-20-2002, 08:39 PM   #4
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Thanks for checking my post Tattoo!

No I'm on no medsand no treatment plan is in place. The last neuro I saw said I should go back to the last neuro because he felt the same way he did. They are pseudoseizures. This last one did no tests to come to this conclusion. He only read my doctors notes and washed his hands of me. I have only found one neuro willing to help me and my insurance won't cover him. I can't afford to pay on my own, so again where do I turn. The only referral they are willing to give me is to see a psychiatrist. I really feel they are off base! They have never asked me any personal questions to come to the conclusion I'm stressed or tramitized!!!!!! I'm so lost!

No I don't go to my chiro anymore. Once we determined he could produce them we quit. Although he does call and check on me. (why couldn't someone like him be a neuro??)

I'm not seeing anyone right now. I know I should but who??????? These are a list of all my problems. Spells/seizures, blackouts, dizziness, vision problems, sharp shooting pains that begin in my neck and go up the back of my head, headaches, eye pressure, weakness in right arm, and loss of grip in right arm (sometimes). During my "spells" I am not consious of anything. When I come around I'm confused and very tired, but alright. I have also never had one of these when I'm hooked up to the eeg, so.....

Thanks for listening. And please don't think bad of my family, they just want to figure out whats wrong with me as much as I do. I just feel its moving in the wrong direction!

Lisa
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Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!

 
Old 09-21-2002, 12:40 AM   #5
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Lisa, I do not see how any doc could totally disregard what may be seizures without any testing such as EEG at the very least. Epilepsy is diagnosed by 1- Having more than one/recurrent seizures; 2-A description of the seizures by you and/or a witness; OR 3- by EEG. Even if they did an EEG and it comes back normal still does not Rule out Eplepsy. Not at all. I'm tellimng you, the general neuros do harm by not referring the patients on to a Specialist who could just possibly correctly diagnose the patient. Their egos stop them from thnking of the patient first. I wasted a lot of life by staying with them. I didn't know about Epilepsy Centers. They will not refer also because to them that is the same as saying they failed in that they can't fix the problem and needed another doc to do it. The easy way out is for them to do just as they have done. Cry, "Psych case", "Psuedoseizures". For a referral to an Epilepsy Specialist, do not ask the neurologists for it. Get the referral from your Medical doc. You do the research of your insurance plan and see which neorologists on the list are with a Comprehensive Epilepsy Center. If there is a large Medical Center on your plan, they may have an Epilepsy Center. Usually if the Medical Center is on the Plan, so are all of the Clinics there. Once you find a good Epilepsy Center on your Plan, tell your medical doc you want to be referred there to get an accurate diagnosis. Even if it does turn out to be pseudoseizures, there is nore than one cause for them, A good Epilepsy Specialist needs to see you and give you a thorough assessment. I will tell you that Epileptologists who see nothing but epilepsy patients are listed along with all other neurologists in insurance booklets. They are not separated out. You have to determine which doc is where and which practice ONLY epilepsy. is this possible for you to do. Many of us have been through that harmful maze your docs has placed you in. they needed to refer you to an Epilepsy Specialist. To not refer you to a place where you can receive a correct diagnosis IS doing HARM! I placed a link to the Cleveland Clinic here on one thread. There is a page on one of those sites that has a link called the Epilepsy Patient's Bill of Rights. I think you will find some of it familiar. Aren't you in Ohio? Is the Cleveland Clinic on your Plan? If so, more than likely the Epilepsy Program there is too. They have a good reputation based on the results of their work. Do check that out! It is up to you to persue the search of a correct diagnosis, and it may take sme searching for the doc, but you can do it. YOu are not at all the only one who has not been correctly diagnosed until after years of incorrect treatments, labels, and further damage. Do the research and find a good Comprehensive Epilepsy Center if possible. You are the one with something to lose if you do not receive the correct treatment. Also, if you are unable to pay for it out of pocket and there is no Epilepsy Specialist in your insurance booklet, the facilities usually have Patient Financial Assistance Depts that you can check into as well. To get this started is very important. No tests and they ruled out epilepsy? It is your life, not the docs'. Gracious! Tattoo

SEE the thread: Finding a Doctor or Facility. Some Guidelines.
The links I mentioned are in that thread. 1- To the Cleveland clinic and 2- Another good link as well. Do read those well and check your insurance plan list of facilities/hospitals for Cleveland Clinic. If it on there, the Epilepsy Program may be as well. Better yet, call the Epilepsy center and ask if they take your insurance. If they do, next talk to your Medical doc and tell him you want to be referred there or wherever you decide for evaluation and a second opinion. His office can deal with the insurance company unless you have to get involved. The referral does not have to come from another neurologist!

[This message has been edited by Tattoo (edited 09-21-2002).]

 
Old 09-21-2002, 06:57 AM   #6
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Hello,

My name is Victor, and I've had epilepsy since I was 10, now I'm 35.
I've had so many EEG's, two MRI's,and a couple of others.
There are so many that I can't even remember all of them. They always came back normal, just my luck.
I've tried just about all the meds. there are. Then my doc. gave me a choice, try a new medication or you can have the operation. I chose the operation, Then I had to repeat the tests again to see if there was something new that could help them or if they turned out the same. The last test I took was the PET scan, in order for them to take it the doc. wanted me to have a seizure, I went to the hospital 3 days in a row without having a seizure. Then I asked my doc. if there was a way to induce them, he told me to stay up all night. That did the trick, they managed to take it right after I had one. Let me tell you that I caused quite a stir. Well, the test showed something. About a week later I was admitted into the hospital. I had the operation on a Tuesday, they put in the grids (flat electrodes), I stayed like that for a week,when they operated they found the area where the area of the brain that caused the small seizures, but that was not what they were looking for. They were looking for the area that caused the big seizures. The doc. said the small ones seem to be controled by the meds.
I'm on 1000 mgs of Lamictal and 200mgs of Dilantin.
So far things are not looking good,talk about your lost case.
So, if you count it I've had two operations so far,to put the grids in and to remove them.
------------------
Sincerely, Victor

[This message has been edited by victor (edited 09-21-2002).]

[This message has been edited by victor (edited 09-21-2002).]
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Sincerely, Victor

 
Old 09-21-2002, 07:03 AM   #7
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Quote:
Three strikes and your out.


Hello,

My name is Victor, and I've had epilepsy since I was 10, now I'm 35.
I've had so many EEG's, two MRI's,and a couple of others.
There are so many that I can't even remember all of them. They always came back normal, just my luck.
I've tried just about all the meds. there are. Then my doc. gave me a choice, try a new medication or you can have the operation. I chose the operation, Then I had to repeat the tests again to see if there was something new that could help them or if they turned out the same. The last test I took was the PET scan, in order for them to take it the doc. wanted me to have a seizure, I went to the hospital 3 days in a row without having a seizure. Then I asked my doc. if there was a way to induce them, he told me to stay up all night. That did the trick, they managed to take it right after I had one. Let me tell you that I caused quite a stir. Well, the test showed something. About a week later I was admitted into the hospital. I had the operation on a Tuesday, they put in the grids (flat electrodes), I stayed like that for a week,when they operated they found the area where the area of the brain that caused the small seizures, but that was not what they were looking for. They were looking for the area that caused the big seizures. The doc. said the small ones seem to be controled by the meds.
I'm on 1000 mgs of Lamictal and 200mgs of Dilantin.
So far things are not looking good,talk about your lost case.
So, if you count it I've had two operations so far,to put the grids in and to remove them.
------------------
Sincerely, Victor

[This message has been edited by victor (edited 09-21-2002).]

[This message has been edited by victor (edited 09-21-2002).]
__________________
Sincerely, Victor

 
Old 09-21-2002, 11:50 AM   #8
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Victor, the VEEG is the tst where they want you to have seizures. It is done with or without Depth electrodes. The PET Scan is to determine where the areas are that are more activly using glucose or energy. It was not necessary to have a siezure for them to pick that up. I am assuming they were able to see the areas that were using more glocose though. What surgery did you have when they were looking for the areas. They do not do surgery to LOOK for something unless they are placing grids, mapping etc., placing depth elecrodes, etc. Is this the surgery you had. Why were they not able to locate all of the areas causing the seizures? As you have read, not all facilities are the same. I had a second opinion and was not at all sorry. Have you gotten a second opinion at a Comprehensive Epilepsy Center that is recommended by their patients? Please read the thread re Finding a Doctor and Facility. Guidelines. I had the VEEG twice at two facilities. Totally different results and quality of care. Seems like they would have located where all of he areas were. They may not be able to reach all areas with surgery, but at least they usually are able to locate them. Consider a second opinion. Forget phrases like Centers of Excellence, World Reknown etc. That is a commercial only and is not directly related to the quality of care! Their patients can give you the real scoop! Also, if thereis one small area that is tiggering seizures, those can extent to cover the entire brain and prodice tonic clonic or grand mal seizures. My seizures were Complex Partial in one area of the brain only, but they Secondarily Generalized (grand mal activity) from that starting poiunt even though I was not aware of any Complex Partial sz first. The triggering/misfiring area was the same. Are you being treated at a Comprehensive Epilepsy Center by a doc that treats only Epilepy patients? Do read that thread re Guidelines for finding a doc and read all of the links. Tattoo

[This message has been edited by Tattoo (edited 09-21-2002).]

 
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