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

Submitted by Anonymous on Mon, 2006-09-11 - 12:59
Welcome to the forum! Sorry to hear all that you have been going thru. Getting diagnosed and sorting out what symptoms mean is one of the hardest parts. The key is just what you indicated - correlating what is going on with the objective test results, and finding out what they mean. Sometimes when seizure activity is happening in the brain, there isn't one to one correlation with all the symptoms, but maybe only a part of them. Maybe some of the events are seizures and others are 'after effects' of seizures, symptoms related to mood problems or related to hormonal changes! Changes in hormones can make some women more likely to experience seizures and/or mood problems.

Here's a few thoughts -

1- keep track of symptoms on a calendar and take them in to the doctor's office.

here's a link to tips for seizure observation, calendars etc.

www.epilepsy.com/pdfs/tips_seizure_observation.pdf

www.epilepsy.com/pdfs/instructions_seizure_calendar.pdf

www.epilepsy.com/pdfs/Seizure_calendar.pdf

2- consider opinion from epilepsy specialist who specializes in hormonal aspects or women's issues. here's a link to info on hormonal issues, and find a doctor feature if looking for epilepsy specialist. Your neurologist would be first one to talk to about these concerns though.

www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/aes.cfm

wwww.epilepsy.com/epilepsy/seizure_complexpartial.html

www.epilepsy.com/info/women_menopause.html

3 - read up on mood issues and seizures - might help as you talk to doctors about what is or isn't going on! Sometimes more EEG testing, with video telemetry is used to capture events that are missed on routine or ambulatory telemetry. The doctor treating you would be best to ask about testing.

.

www.epilepsy.com/epilepsy/moods_behavior.html

Hope some of this helps and that you get things sorted out. Browse around and join in - let's of supportive people here!

Take care,

Epi_help

Here's a few thoughts -

1- keep track of symptoms on a calendar and take them in to the doctor's office.

here's a link to tips for seizure observation, calendars etc.

www.epilepsy.com/pdfs/tips_seizure_observation.pdf

www.epilepsy.com/pdfs/instructions_seizure_calendar.pdf

www.epilepsy.com/pdfs/Seizure_calendar.pdf

2- consider opinion from epilepsy specialist who specializes in hormonal aspects or women's issues. here's a link to info on hormonal issues, and find a doctor feature if looking for epilepsy specialist. Your neurologist would be first one to talk to about these concerns though.

www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/aes.cfm

wwww.epilepsy.com/epilepsy/seizure_complexpartial.html

www.epilepsy.com/info/women_menopause.html

3 - read up on mood issues and seizures - might help as you talk to doctors about what is or isn't going on! Sometimes more EEG testing, with video telemetry is used to capture events that are missed on routine or ambulatory telemetry. The doctor treating you would be best to ask about testing.

.

www.epilepsy.com/epilepsy/moods_behavior.html

Hope some of this helps and that you get things sorted out. Browse around and join in - let's of supportive people here!

Take care,

Epi_help

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

Submitted by stefie on Mon, 2006-09-11 - 13:28
Are these headaches in one consistent area? Have you had an MRI done yet? It took me over 4 years to convince my doctor that something other than low blood sugar was causing the way I felt (talk about keeping a detailed journal). She didn't want to believe it. It was my OB/GYN who figured out I was having seizures, confirmed by a neuro and an EEG. By the way, both the headaches and the seizures were being caused by a brain tumor that apparently I'd had since I was born. If I hadn't kept that journal and kept going back insisting that things weren't right I may never have been properly diagnosed. Don't give up. And by the way, please don'd drive if you are experiencing these symptoms. stef

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

Submitted by alwaysfishin on Mon, 2006-09-11 - 13:33
I still have not been so called,"dianosed" all of my EEg's and MRI's have been normal. But, they did say I was having seizers only because my Hubby witnessed them. Doctor often wont say you are having seizures unless seem or video taped. I have been to 5 doctors and now going to a 6th. This doctor is a seizure spec. and to make things worse I am diabetic for my whole life they told me it was because of my diabetes that it was making me feel this way. I knew it wasnt. They put me on Dilantin the 2nd seizure I had.. Got rash with that one. now on tegretol, itchy with this one but no rash. I really feel your fustration. The 1st doctor said I was looking for attention, the 2nd said just take Ativan when I feel anxiety with this dilantin. the 3rd said not sure you are having szrs. 4th one said, all your tests are nornal. the 5th said just dont do anything that wil harm you or others. dont take a shower, walk,cook, biking,swimming, etc.. by yourself. Just dont do anything by yourself. the 6th, I had a few small szrs in her office. She said, clearly you are having szrs nd we ned to take u off Dilantin and put you on Tegretol. You will be w/o meds for at least one week.. I paniced. no meds. NO WAY!!!! My szrs are horrifying... I rather die then have a szrs like mine. so it is dangerous to taper off one and tapper on another but, I didnt care. Now I get a call from the Docs office saying I need a different doctor.. I think they are just tired of me emailing and calling them. So they are finally sending me to a Brain surgeon 2 hours away. So, you see not uncommon to have a jack-ass for doctors... Hold on be forceful and dont take no for an answer. Being a BITCH its always bad... I feel for you in every way.. Angee

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