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Finally I Have Got The Answers To My Medical Issues.

  • Post starter Post starter Deleted member 20280
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Deleted member 20280

As many already know I have been being investigated medically due to my developing seizures.

"Pseudo Non Epileptic Seizures" These type of seizures are not triggered by flashing lights thankfully on a positive note. However they can be more violent than a standard seizure and can last a lot longer in duration.

I have finally been diagnosed in full and it would appear that my medications are keeping me stable. Recently my Epilepsy has been totally out of control and I have suffered over 200 major fits in these last 6 months. I have fractured my skull 19 times and my ribs over 20 times.

Last week was particularly nasty as I had 2 fits in 2 days and the hospital have identified that I have also on top of the seizures had 2 x 'Transient Ischemic Attacks' or mini strokes.

I am now very weak down my left arm and my fingers are partially paralysed, luckily for me these strokes have been mild and I have not developed the facial paralysis that is so often prevalent with a Stroke. I am getting there physically and still doing as much as I can for myself but that said I do now have a full time carer (Mum) who looks after me very well.

I simply refuse to give up but will be absent a lot from the forum and the chat room as my seizures are almost daily. I am however now 5 days seizure free (Touch wood).

As per my last thread I would like to thank everyone who has been concerned for my health. The answer is not the best news I appreciate but I will keep my head held high and carry on with life as best I can.

Laurie
 
Laurie, that is a bit of a shock! I do hope you are ok. The good news is that the medication is keeping you stable but really not good about the mini strokes. Do keep up any exercises they have given you for your arm and hand as they do help. My dad had a mini stroke that effected his left side but now he has got the movement and strength back and he is in his 80's! Keep fighting my friend, we are all here right behind you and if I can do anything or you want to chat just PM me.
Take care x
 
Just did a little research and learned that this type of seizure is actually often associated with PTSD. Maybe the good news in that is that the seizures may subside as you get all the traumas in your past dealt with. Hoping for the best for you and continuing to include you in thoughts and prayers! :hug:
 
Finally you got a name to go with the mess - and while it's not the best diagnosis (as far as one can speak of "good" in this context) and not the easiest or fastest to treat, I wanted to leave a note of encouragement anyway.

Someone very, very dear to me has been living with PNES for many years by now (also coupled with PTSD, though the connection officially still is considered mostly circumstantial).
He had a wicked hard time in the beginning and whether or not he'll have another fit still is a bit touch-and-go when stress mounts up, but his medical team figured out the ideal combination of meds to allow him to lead a safe and normal life.

He's seizure-free 100% of the time stress levels are normal or low now and maybe 98% when they're headed towards the roof. However, the fits - when they DO happen - have gotten shorter and a lot less violent (to a point where even I have been able to keep him mostly pinned in a safe position) since the meds-situation's been figured out and, what's more, he can feel them coming with enough of an advance warning to get himself to a safe space.

Having a diagnosis is the first huge step towards getting your life back from the clutches of this mess, and I just wanted to let you know that it's possible.
You can do this. :)

:hug:
 
I suffer from PNES as well. It was a hell of a ride. My deepest sympathies to you. I hope you find that it is an easier go now that you are aware of what is affecting you. I would be interested in knowing how they figured out it was PNES. Do you mind sending me a note if you are aware of such? I have been trying to get a medically recognized diagnosis for a decade now.

Take best of care Laurie.
 
Left hand is almost totally paralyzed now. I definatelly feel like a bloody invalid now. Can't even tie my own shoe laces any more and need to have my food cut up as I am left handed and can't use a knife any more. Had my third TIA earlier and my speech is now rather slurred.

Man I really hope this ends soon. Maybe I shouldn't have stopped the drugs and shouldn't be cutting down on the alcohol, after all the seizures, heart attacks and bloody strokes only started after I cleaned my shit up and quit....... NOPE..... Those days are behind me now and I will NOT be that bastard of a man any more. f*ck it i am going to get through this.
 
Believed as a result of me going cold turkey. Same as with the heart attacks, my body is complaining. Also I have suffered many skull fractures as a result of my seizures and have a brain injury now to add to my woes.
 
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