Hi my name is Kirk and I wish you a happy new year!

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kirk267

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I first found out that I had seizures at the age of 13 and I'm now 27. I've had two types of seizures that my neurologist had diagnosed me on having. They are grand mall and petite mall seizures. Since I had my first seizure at the age of 13 it has been a constant up hill battle for me in my life because first of all since i'm 27 now, it's been over half my life now that I have been having seizures! And when I have an appointment with my neurologist I always see a chart listing basically all the different names of medication used to treat seizures and I have tried basicallly all of them besides I guess some of the ones not listed but my neurologist said that on the chart are the most common ones used to treat epilepsy in general. I have had 3 neurologists throughout my life so far and the neurologist that I presently a patient of has had the most success on getting my seizures under control. But it seems that no matter what medications he put me on they only seem to work temporarily and than it's back to square one on whether to increase or decrease some of my medications or to try new ones to see if they can control my seizures atleast a little anyway.

My epilepsy was under control for approximately a year or so but than on October 16/07 I had a terrible hand injury that crushed my 4 fingers on my left hand just leaving my skin keeping them attached to the rest of my hand. If the skin had not kept my fingers connected to thr rest of my hand I would have had all 4 of them amputated most likely so I was fortunate to have one of the best known plastic surgeons in canada operating on my hand and trying to reconstruct my 4 fingers unfortunately since the damage to all 4 of my fingers not including my thumb was so critical they had no choice but to amputate my pinky finger and presently I'm on workers compensation for atleast 9 months prior to my injury and that since I'm left handed my surgeon and workers compensation decided or recommended that I cannot live independently and return to work until atleast 9 months or so prior to my injury or atleast until my hand gets healed.

The reason why I'm telling this terrible injury to you is because ever since I had that terrible injury my epilepsy started acting up on its own again triggering petite mal seizures when I''m trying to sleep on a constant and daily basis. I have a sleeping disorder my neurologist tells me because even the smallest of seizures that I cannot even feel wake me up at night.

So recently because of the injury I had to my left hand they had to prescribe 2 new medications(strong pain killers) to keep the agonizing pain level down so that atleast I can tolerate the pain more. But even with these pain killers that my plastic surgeon prescribe for me that I take on a regular and daily basis cannot sometimes have little or no effect at all on helping me control the pain.

Anyways with all that said and done I am presently on workers compensation and am seeing my physio and occupational therapists atleast 2-3 times per week and i am just starting my strength training program that my therapists and plastic surgeon have recommended me to start on and at the same time seeing my neurologist so that we can find some way of getting my seizures back under control.

Nice talking to you and take care for now!
 
AEDs / Anticonvulsants ARE frustrating!

:hello: Kirk!

Welcome to CWE and HAPPY NEW YEARS
to you too! Sorry to hear the frustrations
of the AEDs; one of the common dilemmas
of epilepsy & meds.... finding the cocktails
and they work for awhile and only to have
it all crash and tumbling down. I hear you
on that end!

It's mostly because the body begins to
develop a tolerance or resistance to one
or more AED(s). Not your fault. And some-
times being removed from it for a time being
before being re-introduced back into it does
help for some people while others, it's gone
for good. It's almost 'unfair', while others the
med(s) works completely for them nearly
permanently. Every one of us has our own
unique body chemistry; hence as I've posted
many times; all of us are like snowflakes, no
two of us are alike - this applies to meds as
well ... what works wonders for others would
be a nightmarish hell for you!

I often feel sorry for all the Neurologists and
Epileptologists who have to go through every
single patient one-by-one, dealing with them
each in every unique way! It would be NICE
if we were all the same ... but we're not!

So feel free to vent and unleash your frustrations
for you are not alone; there are many, many
folks out there who are battling with the very
same dilemma as you are - I'm one of them.

(((((((( hugs )))))))))))


hugs.gif
 
Kirk, I am very sorry to hear of your terrible hand-injury and the return of your seizures. I hope you have luck soon finding the medication combo that works for you. Welcome to CWE!
 
Welcome Kirk.
Glad that you joined us here. What a rotten situation you found yourself in. Really sorry about your hand. I sure do take mine for granted. Sure glad you found yourself with a great surgeon. I hope you get the meds worked out so that you can control your seizures.

My daughter started having seizures at 14. She is now 16 and we have tried 4 meds, with such terrible side effects that we have removed them. Working with nutrition, hormone therapy, and hopefully neurofeedback soon.

I hope you find this a useful place and join us for a while.
 
Hi Kirk, welcome to the forum. :hello:
 
Welcome Kirk

Boy does you post bring back memories for me...
Pain is an excellent conductor for seizure activity! I don't know if it's the pain itself or the trauma associated or a combination of the two, but I know for a fact that pain WILL bring on seizures in myself.

I have had both knees replaced and several other surgeries plus I have severe Rheumatoid Arthritis (currently in a most active flare) Knee replacement is more painful than childbirth! Hello seizures! Thank God for morphine!

If you can get the pain under control chances are your seizure pattern should return to normal. That kind of intense bone pain drives you crazy. It's so deep and overwhelming!

Are you able to get movement back into your hand yet?

Good luck with your therapy! There are some wonderful hand excersizes to get those muscles working again. When I had my bilateral carpel tunnel surgery, I had to relearn how to use my hands again because the damage was so extensive. I got about 90% use and tactile sensation back.
 
hi kirk!

welcome to cwe!

you've found a wonderful place to hang out, and learn. we'll be here for ya whenever ya need it. nice to meet ya. feel free to pop in, ask questions, vent, whatever ya need to do.......

take care...........

Meetz
 
yes bird bomb I have got some movement back into my hand but in 3 or 4 months from now I most likely will need a 3rd surgical operation done to get some of the scar tissue out of my ring and middle finger so I can move them better.
 
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