Does this sound familiar to anyone.

[Sandie]

I get up in the morning and I feel great and I think 'whoopee', I am going to have a day of 'normality' (or whatever) that means. My meds are within normal range and I don't feel hungover-what a great day this is going to be. Lunchtime comes and I feel edgy, restless and my buddy the olfactory hallucination pays me a whopping visit (Thanks Pal). I try to pretend he is not there (yeah right) and I get ready to have a jam with my hubby (we're old time muso's). I am trying to hold a conversation but my mouth is jumbling my words and I am stuttering to get the right one's out of my mouth. I sit at the computer to search for some music and I have dyslexic fingers. Nothing seems to want to work properly. I'm not getting jerky muscles but this, along with absence seizures is really, really frustrating. I do try and laugh it off but I am still pretty new at this game and every now and then I have a meltdown which is what I did last night after a day of it. Thank God I have an understanding hubby. It has taken over 1/2 hour to type this with my dyslexic fingers so thanks for listening.

 

[Nakamova]

It sounds like the "normal range" of meds may not be high enough if you're continuing to have seizures -- either that, or you need to try a different med to see if it will do a better job. I hope you're feeling better today.

:hugs:

 

[Sandie]

Thanks for your concern Nakamova. I am having a much better day today. Hopefully the day will continue like that. I think it may end up a different med. although I am really hoping that I can balance out on the Tegretol. I have only been on this dose for a little while so hopefully things will settle down. It is my first lot of medication for epilepsy and I don't see my neuro until first week in June. He is six hours away by car so it is a bit hard to just call in. Can't get one closer. I still have trouble accepting the fact that I have epilepsy as I do not get tonic clonics and I don't fit the description of what I have perceived to be epileptic (shows my ignorance). It is this forum that has made me realize that there are so many different symptoms and types and I now know for sure that I have had it for longer than I thought. I was starting to feel like a hypochondriac because I had so many things not right with me and no answers to them. Now I read some of the posts on here and some of them are singing my song. If I can relax with it a little more and accept it, I am sure that I won't be quite so frustrated with it.

 

[Nakamova]

The whole process is frustrating -- it would be great if they could perfectly match the meds to the individual person without all the trial-and-error. And it would be even better if they could prevent the seizures in the first place...

 

[masterjen]

:agree:
I've often thought that with all the advances in genetic testing and blood testing researchers should at the very least be able to test to determine which medications somebody will react to or which medications someone will be resistant to (ie. that won't work). That could narrow the scope of medications to be tried considerably. If researchers work toward this, it may eventually lead to the more desirable option, of zeroing in on the exact medication(s) that will work for an individual.