Increasing seizures?

Posted , 3 users are following.

Back in 2014, I was diagnosed with PNES (pseudo seizures).

I also have PTSD, Bipolar 1 with severe pyschosis (or schizoaffective disorder. I've had multiple doctors flop between the two or chalk everything up to PTSD), BPD, GAD with panic attacks.

I still can't figure out what to do. I'm severely allergic to medications like Topamax, Lamictal, Tripletal, Depakote (sp?), Tegrotral (sp?). All of which I've tried and ended up with DRESS Syndrome.

Whenever I get sudden bouts of panic/terror or a doom-and-gloom feeling, I stop recognizing where I am and my body. I don't believe this is related to PTSD because there isn't a trigger. It's more common before going to sleep and waking up. I hallucinate (mostly visual), tremble or shake but not violently, and always get a buzzing feeling throughout my body. Rarely, I lose consciousness. The few times I have, I was out for 10 minutes.

Recently, I've had an increase in déjà vu, pounding in my stomach, and always feeling like I'm going to pass out. The longest it has lasted has been a week, resulting in an episode last night before bed. Usually, the episodes happen back to back (like 2 or 3 in a small time span) and then I'm okay. Aching and worn out, but okay.

I understand that my stress and trying to cope with trauma can set it off. But what I don't understand is the manic that follows. I'm really confused as to what's what and how to treat it. It's interfering with my daily life.

I do attend therapy regularly and am not medicated.

I haven't seen a neurologist since my diagnosis because I'm tired of them just brushing it off or throwing medication at me, knowing I have allergies to medicines in the same group.

Any thoughts as to what I should do??

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4 Replies

  • Posted

    Hi Have you had any MRI scans and a videp telemetry assessment can I ask? Are u in the UK? Are you taking any otc medications? Whats DRESS syndrome? x
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  • Posted

    Dear Bubblemarie,

        I gather from your name that you must be female. My so called neurologist put me on Topamax.  Three weeks into taking it daily I had to stop. Headaches, extreme pain, hallucinates, mental confusion etc...no way to function in life. Her reaction I'm not putting you on any medication as you went off what I had put you on. She brushed me off. Long term effects of this medication is worst than the seizures to endure. I have been label with NEADS. Five years now. I get on with life in between and around when these seizures happen. Being allergic to meds is hard to deal with as I am too. Avoid trauma, get out of it's way. Our feet are not glued to the ground. Why suffer so.  Who we are is a guessing game for professionals. Medications for the brain can really mess with who you are. I have been there. Enjoy the good things in life and avoid people who cause grief and situations.  

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  • Posted

    Dear Bubblesmarie,

          I have already seen two neurologist within 5 years. I'm not interested anymore. A good day for me is not having a seizure, avoiding triggers. One month now no seizures. I try my best.  It really comes down to this, they will happen any time or place. I get on with life. Having a pity feast is no way to live.

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