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Old 07-12-2008, 11:52 AM   #1
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Join Date: Jul 2008
Location: CA
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merlyn HB User
new to seizures

hi folks,
i am not sure if i should post in this forum, but i haven't been able to find one online that is active.
i had my first seizure in january while i was driving. i rear ended a guy at an intersection and no one was hurt...i feel so fortunate about that!
i had EEG, MRI, CT scan and a number of blood tests, etc. everything turned out perfectly so i was optimistic that it was one of those "one time" things.

i was put on lamictal and everything was fine. i was about 2 weeks from having my license reinstated.

then, i went on a hike a few days ago and had another seizure. luckily i had a friend with me who called 911 and were able to drive up the trail. in the ER they just stabilized me and did blood work, gave me about 4 bags of fluids IV. the said to increase the lamictal to 400/day (was 300) and to make an appt with the neurologist. the day after of course i was lethargic, sore, dizzy, etc. but i went to my regular doctor to get checked out to make sure i was ok. i was still having "floaters", etc. all of my tests were perfect, but she saw that my middle ear was bulging significantly.

i am not sure what i am asking here. i just don't know what to do. in the mornings since the seizure i am pretty much unable to function. i am totally dizzy and i can barely stand up. this is when i take the combo of thyroid medication, ritalin, and 200 of lamictal. in the afternoon i take only the ritalin and i feel completely normal. is this just a bad reaction to the combo? i couldn't find anything online.

the other thing to throw in is that my father had menieres disease. the whole seizure, middle ear pressure, balance issues are worrying me. i am just confused that it disappears by the afternoon.

of course my neuro and all dr.'s are putting me off a few weeks since they are "busy". i understand, but losing my mornings to dizziness is completely irritating.

i am scheduled for another CT scan on monday. we'll see how that goes.

i am so sad that i may be diagnosed with epilepsy and won't be able to do things that i love: driving, scuba diving, just swimming laps in a pool...hiking alone, etc.

my husband wants to move us to a big city so that i can rely on public transportation. luckily for now i have someone who can drive me for most of my errands. how do you all manage the driving thing? i really don't want to move!

thank you for reading. this is a new scary thing happening, and i feel completely helpless as i read: unknown origin/cause, no certain treatment, etc. makes me feel like i can't do a damn thing to fix this or even really depend on my medications or to be alone, etc. can i even carry my children down the stairs?? argh!

 
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Old 07-16-2008, 09:04 AM   #2
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Join Date: Mar 2003
Location: San Diego, Ca. U.S.A.
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Mo7609 HB User
Re: new to seizures

I feel like we are in the same boat. So many people looked at my posting and only 1 reply. I wish that I had some answers for you unfortunatly not. I recently totaled my car hit a parked car and sent us 127 feet. Thank god nobody else was with me and thank God I was in our expedition and not the Camary because I surely would have been dead. There are definate pros to having a SUV. How long did they want to keep your licence suspended before your last seizure and do you know what the cause of your seizures are? Mine was from a combo of an anti depressant and tramadol that the Dr had me on. Well I know this really didn't help you much but I hope that everything goes well for you. Take Care Mo

 
Old 07-16-2008, 09:53 AM   #3
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Location: Minneapolis, MN, USA
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Art_930 HB User
Re: new to seizures

Merlyn - please accept my sympathies for your current situation. I think all of us here can relate back to when we were newbies and wondering how we would have to adjust our lives.

Given your concern about your ear and the fact that it is bulging, I'm wondering why you didn't mention seeing an ENT specialist. And did I read correctly that you were told by the emergency room doc to increase your Lamictal dosage? Did you then check with your neuro to confirm that a change was needed? And did he check your blood levels?

As for your current doctors being too "busy" to see you or answer questions, you might want to consider changing doctors. When I was first diagnosed the neuro I went to was autocratic and had no empathy for my fear at the diagnosis. Luckily I made the decision to switch and now have a neuro who I like as a person and as a doctor.

 
Old 07-16-2008, 10:15 AM   #4
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merlyn HB User
thanks for writing

Mo, did you ever get your license back? did they determine if it was a one time thing? i was reading that only 75% of people ever get more than one seizure in their lifetime. i was hopeful with those statistics! i was supposed to be waiting until the end of this month...about 2 more weeks. part of me is thankful, part of me is totally irritated.
they determined that i was on an anti depressant that "often" caused seizures (5% of patients) which i didn't know about...was completely uninformed. of course, if i were informed..i would 5% isn't so bad, worth the risk compared to having horrid depression. of course they took me off of it immediately and so this second one was unexpected since i had been off for about 6 months. obviously, their assumption of it being the antidepressant was incorrect. so we are back to square one.

art: the ear bulging was caught by the nurse practitioner. she assumed that it was due to some drainage in my throat. nothing major, i honestly didn't even know that i had any.
they DID increase my dosage of the lamictal while i was in the ER. they did check my blood levels and said they were "perfect" then said that i couldn't get in to see the neuro for 2 weeks. i called back in disbelief and they said too bad, really.

yesterday i went to my regular practitioner b/c i decided that i can't go around being dizzy all the time. she didn't give me an exam because i am sure he knew her limitations on this one. but we agreed that it was ridiculous that i had to wait so long for the neuro. i also told her that i don't want to see the one i had before who gave me a 3 minute exam the first time. luckily she found a new one that she loves and is much more thorough...i get in tomorrow morning. i was pleased with that. i really, really can't wait to figure out what this is. i have never had a seizure until this year. i am in awesome health. there has to be a reason, you know??

anyway, thank you again for your replies. is nice that i am not completely alone. it seems like most support areas, people have had one or people have several a week. all different reasons. there is so little information. to get anything really helpful, i have had to read a textbook specifically on seizures. amazing!

how are both of your treatments going??

hope to *see* you soon.

 
Old 07-17-2008, 06:44 AM   #5
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Art_930 HB User
Re: new to seizures

Hi Mo & Merlyn - wishing you both the best with your driving issues. That really must be the worst thing when first diagnosed.

I started out with balance problems and at the suggestion of a friend who is a doctor went to an ENT thinking I might have an acoustic neuroma. That wasn't the case and he suggested I see a neurologist. Really picked the wrong guy - no "bedside manner", abrupt, not informative, didn't like questions, etc. and told me within 3-4 minutes of meeting me that I have epilepsy, put me on Dilantin and notified the DMV to remove my driving privileges.

For the next 6 months I took 3 buses each way to and from work and found myself a new neurologist who is a lovely man, very understanding and believes in the innate intelligence of his patients. When he suggested that I switch from Dilantin to Lamictal I said "no thanks" and he was okay with that. The DMV sends him a letter to confirm that I'm safe to drive, he signs it, sends a copy to me and at this point I'm allowed to drive for the next 4 years without renewing the letter.

Keeping my fingers crossed for both of you!

 
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