im a lab rat hahaha!!!!

[Rainbow]

nice one for letting me into your world my weirdo freinds ahaha!!! im from north of england..could go on forever and ever but short an simple does it ..when i was 31 had fit in bed..done tests all good,and i was also fit free..3 years later same again...tests again,,,avm found which is tangled blood vessels round my brain,got told was reason off the fit ..operation done,months later fits again and had them ever since..all types all scenarios off dangers..in bath,in streets,in bed,..in hell hahahah!!complex partial siezure,simple and tonics are my visitors at the mo....the mad thing is i am NOT epileptic, i reckon this is all down to money making tablets..avm may off caused the earlier ones...but thats gone so why keep me on the tablets..operation was in2005..i seen the epi doc in 2004 after my second fitwho said it was wise to put me on tabs...then offerd me the chance to try some new not used drugs for some universatey for six years..i opt out after 3 half years... iwas becoming a lab rat haahha...still on tabs..common known ones though..thought i would come on here an av a chat....you prob wont beleive me but i have never spoke to others with epilepsy,,sat near them in hospital waiting rooms obviously...p.s not ad a fit for 6weeeeeeeeeks!!!

 

[Nakamova]

Hi Rainbow, welcome to CWE! And congrats on being 6-weeks seizure-free! Not sure what you mean about NOT being epileptic -- technically if you've had more than one seizure (including partials and tonic-clonics), then epilepsy is the diagnosis. It's possible that AVM caused the initial seizures, and -- ironically -- that scarring from the surgery caused the subsequent seizures. What medication are you on? Are you bothered by any side effects? If you'd like to try being med-free, have a chat with your neurologist to discuss the options. Any tapering off should be done under your doctor's supervision, and should be done as as slowly as possible to minimize the risk of withdrawal seizures or side effects.

Best,
Nakamova

 

[Crash]

Welcome to CWE Rainbow,im sure you will find it a great forum to be part off.I have to agree with Nakamova,above.I remember my first seizure,i was told sometimes these things happen and never happen again.Six weeks later i had another one and was diagnosed epileptic and started on medication and other all the other medical procedures that go along with it.

Best off luck to you,Crash.

 

[Rainbow]

thanks for reply,yes i know the risks off weaning yourself off drugs through havin a fit in the bath a year into takin them haha..never tried that since,side effecte at the mo are poor skin problem,panic attacks which are pathetic and embarrising,mood swings...its weird..its tabs !!

 

[Cint]

Having a seizure in the shower can be very dangerous, so before you wean yourself off all meds, you need to think about it and take Nakamova's advice. Go slowly. 30+ years ago I had my first TC seizure on my way out of the shower. As I fell, I hit the hot water faucet and was lying under the hot water long enough to suffer 2nd and 3rd degree burns on my back and arm. Prior to that accident, I had been to a stupid dr. who said I was hypoglycemic without doing any testing. So which is worse, skin problems or ugly burn scars on my arm that the whole world can see in the summer time? And I suffer the mood swings, also, but there are meds for that as well as counselors.

 

[Rainbow]

also if i was a doctor and some one walked in just having a second seizuire, 2years from the first wouldnt you recomend tried and tested tablets instead off talking about revolutionary trial tabs to a vulnerable an naive hospital dweller which involved a six year testing help...the idiot thatsaid yes was me,,as isaid i opted out after a few years so my tablet help i dont like,i have mentioned numerous times too my doctor,but there uneasy about it,which puts me off the idea slighlty coz dont want a big massive fit and die through my many years off tablet help withdrawell which i reckon would happen..no paranoid issues ethier before any one comments..

 

[Rainbow]

thanks.,i sound like a know it all,after the fit in the bath years ago i ended up with a walk in shower,plastic sides,limited temp and water flow...i moved though 4 years back,so back with a bath ahah...but i wont be weaning off tabs so should be ok..used to see a counselor a year back,,she got pregnant so i couldnt be botherd going through it all again,i was going because off the panic attacks,but stress in my life is a trigger i have found..so maybe it is better that way..i even had a fit on the way to an appointment with her on the bus haha...also the scar from surgery is right across the top off myskull..i am bald at the front off my head which makes it even more notacable.,so i wear and have done for 8 years a cap every where i go..crazy i know..im a confidence issue through that blah blah but im living and breathing...just taking them damn tabs. thanks anyway

 

[Cint]

Well, I also have scar from brain surgery, but I didn't have an AVM. I had a left temporal lobectomy to stop seizures, but it didn't work. So I'll be taking those damn tabs for the rest of my life along with the having the VNS, also.