new member, long term epilepsy

[new shoulder]

hi,

i guess i've had epilepsy for about 25 years, if not more. I'm 40. Last year i had seizure clusters which were so bad one of them broke my shoulder: surgery, new shoulder.

i have had falling spells/blackouts before, unprovoked and sober.

also had simple partials at least since i was 15 or so, which was around the time i had the first falling blacking that i can remember.

So i've known that it was epilepsy for almost a year now. Pretty close. I feel it is getting worse.

In my 20s i was pretty far out of touch with reality for a long time, unhealthily overinvolved in yoga and mysticism. I shook that off around the same time i had a couple falling seizures. In the years since those falls, i also began having rushes of pronounced fear, from out of nowhere, either just upon waking or while going about my day. Very disruptive. I never sought medical help for them, as they would come and go suddenly and not last long. I did seek help for the falling blackouts but the bloodtests and ecg didn't help. I've lived a very chaotic life and did not then (nor do i now) have a family doctor.

I believe it is getting worse. I'm taking tegretol according to the dr. However i get simple partials alot. Last couple days it has been a metallic taste in my mouth, and some twitching. Twitching is a very common one for me, and when it happens (arm, leg, chest, whatever) i can feel "brain buzzing" always at the same part of my head: top center, and down the right toward the ear.

When i was 14 or 15 i was in a pretty bad MVA, my head went through the windshield and i completely lost consciousness. That may or may not be the cause of the seizures. It definitely makes sense in terms of time...but i don't remember whether or not i had simple partials as a kid.

I find the simple partials really disruptive to my daily life. The big ones do their damage of course, but the mini mals seem to be more prevalent and to really take their toll.

thanks and hello

 

[qtowngirl]

Welcome New Shoulder (lol at first I thought you meant 'new shoulder,' like you're here to help!) Bet you'll do that too tho, thanks for coming on board. I'm always amazed at how fast the number of members grow... by the day.
I'm with you on the simple partials and rush of fear. VERY DISRUPTIVE. Been 18 years for me with s.p's, but like you, didn't know what they were for the first 15 years. Grand mals for nine years (never related the two as a psych had gave me the diagnosis of PTSD for them-other story).
I'm curious to know why you term them as fainting spells, and also if you've been given the nod by a neuro re: E. I had my neuro that had diagnosed me over five years earlier (and another one I walked out on during a consult) ask me how I knew they weren't simply fainting spells. WTF? You diagnosed me with E you d-ck. They both said it regarding the first grand mal I had unwitnessed (yeah the damage to my head, arm and shoulder, back, and other little odds and ends are good for me - my body hit about six surfaces from wall to shower to floor...).
So sorry to hear you don't have a regular doc. My heart goes out to you for that. I've had the best phD for years and now an epileptologist for the past year so am VERY lucky. Anything you can do to get an appt. with a new doc for a referral to a neuro would be awesome.
BIG HUGS on the windshield part - poor kid. Take care and hope to see you around!

 

[new shoulder]

hi, thanks for the reply.

i called them fainting spells, bcuz that's what they were to me at the time. once as a teenager, i felt strange, saw the blackness closing in from the outside range of my vision, and i could even feel myself falling, hit the bathroom floor. another time, at work, i had an overpowering deja vu while looking at the cross braces on some scaffolding, and woke up on the floor. few days later, i hit the floor off the breakfast table. all these events were unwitnessed.

since then, i have come to learn more about epilepsy. i realize lots of the things i've done or experiences i've had are seizure-related and were probably seizures or things done in post-ictal confusion.

neurologist activity low. ii try but get no response, am waiting for new referral, here where i live doctors are in high demand (big senior population here) and hard to find.

 

[new shoulder]

also, how do i shut off the email notification of the messages ? thanks

 

[qtowngirl]

Go into 'edit options' in your customized profile, scroll down and it gives all your choices as to email notif., and friendship requests etc.

 

[Nakamova]

Hi ns, welcome to CWE!

I hope you can find a good neurologist soon -- There are other meds out there, so if Tegretol isn't working properly you should have a discussion with your doc about alternatives. In the meantime, it might be helpful for you to keep a seizure diary (if you don't already), and look for triggers or factors that may be contributing to your partials. There are some good tips and information about alternative treatments here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[new shoulder]

thanks

i don't actually keep a diary, there are just too many of them, i'd be writing in it all day. I can say that stress brings them on, and disorients me to the point where i find it difficult to relate to ppl and to the world.

as for seeking new medication, i'm on the warpath, going in to see the clinic doctor today. I asked for a referral to a new neurologist, but i haven't heard a peep so far. Hopefully the clinic will have more information.