Not really an epileptic

I sometimes feel guily of being classed with people with disabilities and epileptics. This is because I don't really feel disabled. I suppose that this is a good thing. I don't get seizures very often, now it only comes once a year. It used to come more often, but I seemed to have grown out of it.

The only downside is that the tablets I take make me forget, a lot. This makes me feel worse than having a seizure. The fact that my brain is being compromised. So I started taking less tablets, weaningmyself off. The docters will be shaking their heads. Tsk. But this is my life, and I want my brain and memory back.

7 Replies

oldestnewest
  • There is no shame or label being classed disabled! Many people will probably not even know you have seizures on a few occasions. however, the medications are prescribed to stabalize your system i.e. it covers you when you are most susceptable to having seizures. Unless you are a neurologist, Juggling around with meds takes away that stability and makes you more susceptable - maybe if you left the dose alone, you may not have seizures annually.

    Advice is to discuss your medications with a Neurologist (NOT a GP) there may be better meds available which target your type of condition better that have fewer negative side effects. There are ways to identify possible causes of your seizures i.e. monitor yourself think about what happened over the past 48 hours leading up to that event - did you experience stress, tiredness, something unusual you ate or drank, etc, etc. you may find there could be a pattern or a combination of things leading up to you having a seizure. If you identify anything, feed back to your neurologist, who may prescribe something new. there are a lot of modern day drugs, which dont have the ill effects of the older generation drugs.

    It may be your life but taking risks does not make you responsible and could result in your next seizure placing you in a worse situation, which could affect others too. So my advice is that you be sensible and get a neurologists opinion.

  • Hi - further to the above - labeling yourself as an Epileptic makes things worse. You need to be positive - you are a person with epilepsy. You cant sort of have it or half have it - its like saying I have flue but not really. The term Epileptic is a psychological label we have been trying to lose for years and places people in boxes. Please refrain from using it.

  • I am not ashamed to be a person with epilepsy, but when I get opportunities for bursaries an so forth, I sort of feel that I should not take advantage of it because, truthfully I don't feel it affects me as much as it affects other people who are worse off.

    I see you are very worried about the fact that I am stopping my tablets. For several years I have been only having a seizure once a year, and I think I can live with that. I have lessened my tablets for several months, and so far I am fine.

    The way I see it is that epilepsy makes your brain work on overdrive, and sometimes you get a short, sort of like an electric fuse. And the medication allows your brain to slow down, so that you brain won't get a short. That's sort of how I understand it.

  • 'The only real disablility is a bad attitude'....quote I read just now on facebook :-)

  • It is probably, if not certain, that the reason you only have seizures once a year is because of your medication. As an adult you can certainly make the decision to stop taking medication, but there are many unnecessary risks involved in doing so. I also advise that you consult your neurologist and discuss your current concerns with him/her so you can then create the best plan of action to reduce your memory loss and/or other side effects of the medication (if it is indeed the medication). It could save you and your loved ones heartache in the future just by including the neurologist in your decision-making.

  • i can relate to what you're saying. i also get random attacks that are just that - random. i was on epilim for about the first year of my first attack. i hated the side effects, that and i was also been prescribed trepiline at the same time. This was no frikking way i wanted to live my life so like you i weaned myself of the meds. my seizures were like non existant for about 2-3 years. but then i noticed when i really really stressed, anxious or emotional i would get a seizure. so i would try controlling my moods, taking calmettes, meditating and sometimes it would work, sometimes i will have a break thru seizure. its particularly frustrating because every test i havd been for shows normal brain activity and the neurologists just say 'ok you don't have epilepsy but we dont know what is triggering your attacks so to be on the safe side you rather go back on epilim'. Now this opens up a whole other can of worms as my husband and i are trying for a baby but epilim in pregnancy is a big no non. so now i am at a cross roads no one other than me can take - baby or meds. i have always been positive and accepting of my seizure condition and have fondly dubbed them as temporary brain short circuits. but now i feel my faith and emotional piece of mind is being tested to breaking point with this new dilemma.

  • Hi there Seisuregirl. I have had epilepsy since i was 5 years old and now over fifty. It is a way of living. However i want to mention to you that i had my 16year old daughter and she is extremely clever and mostly very relaxed child. I was on medication all through my pregnancy. The only thing is that if you are going to breastfeed, you cannot go off the medication once you have had your baby. It could cause withdrawal symptoms in the baby. I daughter is beautiful, very clever and has no inclination towards drugs at all. Believe me, just because you have epilepsy does not mean you have to be deprived of all the wonders of parenthood. Have your baby and experience all the love!!!!

You may also like...