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New to group; need help; am I crazy?

Mon, 09/11/2006 - 12:19
Hi. I am new to the group. I am 30 years old, married, mother of 2 beautiful kids and I am?was? (until a month ago)a nurse. I am so glad that I found this website, because I could really use some support. I am having a terrible time getting diagnosed and figuring out what in the world is wrong with me. No one seems to understand what I am going through. I feel so lost and confused. My problems started about two years ago after a hysterectomy which went badly (lost a lot blood, underwent multiple blood transfusions etc.). After the surgery, experienced depression, and odd behaviors and was diagnosed as having "bipolar disorder". Dr. tried antipsychotic drugs which were a nightmare (didn't work - actually made me feel psychotic on them when I didn't previously) I was then put on Lamictal and immediately felt better. All of the odd behaviors disappeared for a year until last November when I started having heart palpitations (PVC's) every other beat. Had everything checked out - no heart problems. This lasted on and off for 3 months and then went away out of the blue. Then in March I started having chronic headaches, and migrains. The Lamictal stopped working at this time and I started having word loss, and horrible short term memory loss and just wasn't acting like myself. My primary doc sent me to a neurologist after I spent months going to physical therapy, massage therapy and acupuncture for the headaches, and I begged the neuro to do something. She did an eeg that came back abnormal. She wasn't worried about it but she wanted to put me on a low dose of topamax for migraines. During this time my psychiatrict decided to take me off the lamictal and put me on triliptal - due to "side effects". I had an allergic reaction to the triliptal and had to be weaned off. As soon as I was tapered down off the antiseizure meds, - I started having partial seizures EVERYDAY. But no one is taking me seriously. I called the neuro and told her that I started having seizures and she said that I wasn't having them - the eeg only showed that I had the potential for seizures. So I went to another neuro. He looked at the eeg and said that everyone reads them differently, not to worry about it, told me that I had a normal neuro exam, normal MRI and that I needed to talk to my psychiatrist about changing my meds. My psychiatrist seems to be the only one who believes that I'm having seizures and that I'm not crazy. So I went to neuro #3. He did an ambulatory eeg which was again abnormal. It read "spikes in the right temporal head region in addition to spike and wave activity briefly in the left temporal head region are consistent with interictal epileptiform activity. clinical correlation is recommeneded." The neuro didn't give me this info - his front office staff did. All he said was "Well the eeg is abnormal, but I wouldn't say you're having seizures. We should probably put you on some Keppra though. WHY!!!!!!! If I'm not having seizures and there is nothing wrong with me, why take me off work, tell me I can't drive and put me on Keppra???????????? I don't get it!!!!!!!!!!!!! Isn't the clinical correlation the part where I tell him that I have episodes where out of nowhere I feel this swirling in the right side of my head or smell something nasty or hear a ringing in my ears (lately it's mostly the swirling); then I feel increadibly dizzy and nauseous and it feels like someone has placed both my temples in a vice and is squeezing. My speech becomes slowed or garbled, sometimes I can't respond; I have to sit or lay down or I will fall (I have fallen). I feel totally detatcged from my body. Sometimes I have a feeling of deja-vu. This part lasts for 2-10 minutes. Then afterward I am totally drained. It is almost painful to keep my eyes open. I just want to sleep. I feel hungover for hours afterward and I can't "snap" out of it. Am I totally CRAZY?????????? Is that I seizure or not?? I am still having them everyday, several times a day even on the keppra. They seem to just be getting worse. What does that eeg mean? Please help me. I am so lost and confused. My body is saying that there is something wrong, the test say that there is something abnormal, but the doctors are acting like I am crazy. What is the problem? I am open to any suggestions, words of advice. I really don't know what any of this means anymore. Thank you for listening. Tcrn

Comments

Re: Re: New to group; need help; am I crazy?

Submitted by missemmy on Mon, 2006-09-11 - 16:20
Try to get in to see an epileptologist. They have a better understanding of epilepsy. Smile...it increases your face value. :)

Re: New to group; need help; am I crazy?

Submitted by kgknight on Tue, 2006-09-12 - 09:34
I don't believe you're crazy, and I do see it as seizures. As I was growing up with them it took more than 14 hospitals in NYC, Atlanta GA, Oklahoma City, Connersville Indiana, and here in Omaha to get things straightened out. Some Drs thought it was Psychotic Seizures. Some said Epileptic Seizures, some said it was both, so I was given just about every Antidepressant and Antiepileptic and Antianxiety medicine out there. Finally after almost 45 years of changing drugs the combination of Keppra, Trileptal and Celexa seems to work fine. My seizures decreased from about 9 a day to 1or 2 the most per month now. It wasn't comfortable being shifted back and forth from one hospital to the other as if no one could help. But finally they did. I hope someone takes you very seriously and stops beating around the bush. Epilepsy, still a mystery to many. Having seizures does not mean we are less of a person, just different. We are capable of loving and being loved.

Re: Re: New to group; need help; am I crazy?

Submitted by mselam on Tue, 2006-09-12 - 09:57
You're NOT crazy. We know our bodies better than anyone doctor out there. We may not be able to diagnose what's wrong but we know when something is wrong. My personal advice is this....stay calm but FIRM. Don't let a doctor tell you you're fine when you are having sypmtoms like that. You're not fine.Be insistant. Epilepsy can be very hard to diagnose. Call your local epilepsy society for help in finding a doctor than help you.

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