Epilepsy and long struggle to find the truth

[Craig R]

I'll try to make this very short, but it is my life story..
I experienced the death of my younger brother when I was 26 (I'm now 42) and shortly after, I started to get what I called 'panic attacks', I didnt know what going on. I was a well seasoned bud smoker at the time, and had been for many years... 5 years ago my partner and I had a son. my partner talked me into giving up bud, telling me I had to because our son, my age etc etc, I really didnt want to give up but I did it for her... It was a few moths later that I was found in the corner of the bedroom with my arm out of it's shoulder socket, I was in a daze and didnt really register what was going on, but I had had my first seizure.. it was another year later I had my first nocturnal gran-mal. I had missed a large amount of sleep and when I went to sleep I had a massive seizure destroying my shoulder and chewed my tongue real bad, blood everywhere.. I was in Spain at the time and came back to the UK, saw a nuro and got prescribed Tegratol, a sickening drug.. Went back to Spain and began getting many fits, looking back it was the Tegratol that had escalated my condition.. A few months went by, then I decided to go home to my son. I got on a plane and had a fit, I woke in a Spanish hospital and within a minute I had a clear voice in my head. Of course I was very afraid, this had never happened before, looking back, it is obvious it was caused by the Tegratol, it even says on the side effects that it can cause "Psychosis" not to mention seizures.. I proceeded to try to kill myself under the instructions of this voice.. This was a really freaky time, and I'm gonna leave it there (bad memories) Obviously I made it back to the UK in the end, and carried on with my life here with my son and partner, I continued to suffer fits (every type) the doc put me on Keppra, no real change in fit frequency.. A year or so later I tried some bud, because I just knew deep down the bud used to stop the 'panick attacks' years ago.. I had another so called "psychotic episode" I truly beleive this was due to the Keppra, this episode was different from the last, no voices, but was not pleasant.. everyone told me it was the bud and like a fool I beleived them.. I repeated this again another two times and the last time ended up in a secure mental unit.. NOW.. I am getting ready to stop taking the meds and start using weed again, my last mistake was using large amounts of strong weed, but this time I will use small amounts to start with, then I will build up my tolerance till I can drop the meds..... Could anyone here advise me of any better way to go about this proceedure? for instance, how should I stop the meds? Should I just drop them? or should I reduce them before I use weed? any advice would be greatly appreciated, I can't trust the damn doctors etc, all they seem to want is to get me loaded with meds, like last year I was on 4 x 750 Keppra per day, I was a zombie, now I'm on Mebravine and Keppra, and I am a zombie again, with aches and pains all over AND I feel like I'm goin mad.. I just want more than anything to get these damn drugs out of my life so I can use weed again, please help, I really need advice

 

[Skutch]

It may be difficult, but I would try to talk to those "damned doctors". (have been there as well)

One thing I've learned is to find the right doctor, should a doctor not be open to listen what you have to say, simply go for a second, third or fourth opinion and don't (!) wait too long if you're not happy with the answers given. I'm very happy with my current one who.... as first one had the guts to tell science knows less as 1% of what's happening in the brain. I almost had to diagnose myself to prove it's possible to have both grand- as petit-mals and completely went nuts from the 4 neurologists who (with "tons" of knowledge) kept telling me that wasn't possible. After having done 90% of the diagnosis I finally found the fifth who thought my suspicion wasn't that strange and at the first check caught 11 petit-mals on EEG while the others only were willing to look at the grand-mals.

I've also noticed that Epilepsy is quite different for everyone with epilepsy, no two persons with E. are/experience the same, but one thing they often have in common is poor experiences with neurologists.

Keep in mind that Epilepsy is _a_ neurological condition of which many more exist. _A_ neurologist may know something about epilepsy, but a neurologist in an epilepsy specialized hospital probably will know much better what you're are faced with day in day out. Only 1 out of 150 people does have epilepsy...

Stopping medication could... be dangerous and result in having severe seizures.
Not being your doctor (or a doctor at all) I can't give you any official medical advice, but stopping suddenly is probably the last thing you should do.

Simply keep telling that you're reacting quite psychotic to medications given so far and don't have such reactions when you're using pot.

Also keep in mind as well that there still may be a medicine/or combination of medicines that reduce the seizures without the enormous side-effects. Pot may seem the answer since you have good experiences with it, but... perhaps there's still more that could do the trick just as good or perhaps even better.

I do hope you'll find the right doctor/medication asap and wish you and your family the best.

Bart.

 

[Craig R]

Thanks for the reply
I'm now on a new medication from the neurologist, a new one, who is cool, he told me to carry on smokin weed and prescribed the new AED.
I been using the weed as an anti convusant and to stop the side effects from the AED's, it's working out ok so far, 2 days and I'll be off Keppra for good.