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

Submitted by tcrn on Sat, 2006-09-16 - 16:29
Thank you for all of your support. I have been having seizures (1 to 3 a day) and they have been increasing in frequency and severity. After being extreamly persistent (about 10 phone calls worth) between my newest neurologist and my psychiatrist - my diagnosis has been revised from bipolar to "seizure disorder". More likely temporal lobe epilepsy. That's what we're looking into now anyway. Again thank you for your support. Until I found this website and started reading what other people were going through, I literally thought that I was crazy. Now I know that I'm really not, and that I'm not alone.

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

Submitted by Les on Sun, 2006-09-17 - 09:54
Unforuneately you too have come from the land of supposed BPD to the land of E. It happens more than I think they let on because with women they like to go for the all in the head or hormones routine. As for hormones, I had more seizures after my hysterectomy when the doc put me on a short course of hormones. They seizure type was gelastic with the mirth component.All I had to do was crack up about something too mch and off I'd go. Stopping the hormones helped alot and I didn't have another one till 5 years later - though I have had other kinds including lots of drops.I have had the psychotic component to my seizures primarily as a result of them giving me an anti-psychotic that caused psychosis and seizures. The stuff was called Risperdal and is very nasty stuff.All the idiots had to do was up my Depakote ER and make sure my thyroid wasn't kicking it out of me too quick because I have hyperthyroidism from toxic multinodular goiter despite having had most of the thyroid removed a long time ago for a "non-textbook case" of it in which the surgeon said it was so riddled with nodules that it must have been present for at last 10 years before he operated. I had ovarian and tubal cysts for a long time as well and when the thyroid and female parts were excised as they were, I had a great reduction in the migranes I suffered from my origional accident in '84. I had a car accident in ' 98 and no benefit of a new EEG for 6 years despite multiple seizures after the accident that the origional ER doc didn't see for himself so he distrusted the nurses and didn't keep me or take the right steps to follow up. All my GP did was a CT scan.Now we know at this point that my EEG that clinched the dignosis showed left temporal frontal problems that went to the right and then generalized throughout the whole brain. I know how I can act now and what others have noticed so writing it down in case I get sent to the ER again won't result in a misplacement to the nut ward or further misdiagnosis.Since I know the difference between my migranes and the headaches that come as a part of a seizure ( like a sledge hammer to the head before I drop )I know I can use my Depakote sprinkles to ward off a migrane. Otherwise, my usual doseage of Depakote ER does alot for me. It helps especially with the olefactory seizures I have. Right now they are preparing me for another EEG and hoping to reduce some side effects too by decreasing the amount of my meds and I really feel a difference. I knew I wasn't crazy but the docs were since one doc at one point had diagnosed me as having severe depression untill they found out at that time it was my third bout of mono. Nothing for me is textbook just like the post-partum depression that turned out to be toxic multi-nodular goiter. Nothing made me happier actually than taking in my MRI report and showing my back injury to the shrink and telling him that the all in the head stuff was in his head and not mine ! Keep on learning and teaching the docs too. Everyone is different ! - Les

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