New to this road

RE: New to this road

Submitted by Gretchen on Tue, 2005-03-22 - 13:33

Hi Kathy -I'm an adult, intractable epileptic if for no other reason, I'm intolerant to the side effects of all but 2 AEDs. I wasn't just "uncomfortable" on other AEDs. The side effects depending upon the drug were far ranging from being a complete zombie to swearing the floor felt like a magnet and kept zapping me to the floor like positive/negative charges, which my family witnessed and said it really did look like I was being literally ripped out of a chair and flown to the floor. My monitor screen started talking to me on one. M doctor said "ignore it" and that grew worse. Then I woke up one night with a herd of sheep in my room and the halllucinations I had in all senses started raging and I really felt - totally crazy. On another AED I continually fell down, also I saw my arm once resting on a table in a room where just me and another sat and I jumped back in surprise when I saw my own arm, not recognizing it was MY arm, thought it was someone else's. On many of the AEDs I'd be asked - do I feel I was having sz reduction and I honestly didn't know because I wasn't awake enough to evaluate and when I was awake I was mindless. On the last one I tried out of over 11 I had horrendous fear responses to every day things which would then provoke wracking sobbing for hours, or cambativeness or flight syndrome -I'd take off. The AED I take now doesn't control my sz's but I'm sure if I didn't take it, I wouldn't be alive to be writing this post either. I've had to give some to get some which is often the case for many of us unfortunately. The question then is how much can you give? I also take Klonopin which is considered my second AED. I have miserable twitches which are a form of jerks for me, and the usual hard jerks randomly. Klonopin has been the only thing to settle my brain down enough to stop these. But I have had a lot of problems on the primary AED I've been on for 6 years now. For 2 years I was slightly toxic. That progressed and I wasn't slightly all the time, at times I was so wildly toxic my doctor twice said my levels were so high he didn't know how I was still alive. I had a lot of hospital admissions for toxicity. I don't even know how many admissions I had. One thought is - on my AED, which is Dilantin, when toxic my epileptic symptoms increase. Now I'm facing having to get off of dilantin because it's playing havoc on other organ systems and it scares me. I've been in two comprehensive epilepsy centers since this decisions has been made. Both of them had specialized pharmacist who had started to work with me creatively to try and find AEDs I can take that will be at least as effective as Dilantin would be and of course my secret little thought is, hopefully more so. One thing that was mentioned to me was a combination of modalities such as a diet I follow, accupuncture which helps my absences and lower dose multiple AEDs to avoid such severe side effects and testing my reactions to AEDs in different ways instead of having to go through the slow building up to a therapeutical dose. I don't know all the ways they do this. The two that were suspected I had allergies to I had a small dose put under the skin of my arm to see if I had a localized reaction. That's as far as I got. In both admissions I was discharged before we got further than that because of other more pressing issues. Have you tried typing in the phrase "pharmogenic testing" into Google, or a similar search engine? I need to do that too and probably haven't because I live in just dread of going through AED trials again. But I do know that pharmacists who work primarily with epileptics have a lot of creative ways of medicating, know the AEDs far better than other pharmacists and have inspired some hope and confidence in me, who had none. Hopefully your child's behaviors are a result of his AED. That can then be switched to another. It doesn't sound like your child has really had many trials. Many of us, children too go through a lot of trials, trials of combinations, until we find the best medications for us. It's not a fun process for parent or patient. I feel I can say that as an epileptic and the mother and grand mother of epileptics. Often however it's necesary. But epilepsy also is a syndrome of change. I have , at times, wild mood swings that provoke wracking sobbing to violent rage and those are simple partials seizures. I didn't have that the first 3 years I was diagnosed except when I was post ictal, after a sz. I still have problems with sudden extreme mood swings which are difficult for me to handle but I know difficult for those around me. A suggestion to you? When I'm in the midst of these sudden onset of emotions? The very best thing anyone can do for me is to leave me totally alone. Any stimulation such as the TV being on, anyone touching me, talking to me, keeps me stimulated, keeps that simple partial sz strong emotion alive. The very best thing I can do for myself and others is to isiolate myself from all stimulation and these sudden strong emotions dissipate much faster plus I'm not inflicting them on others.When my son was small, starting at about 3 years of age and actually in honesty still occurring but not now as a 3 year old, he is 28, also has sudden petulance, unexplained severe hurt feelings for no reason, he expresses as anger, and other wild mood swings. He's been on several diferent AEDs in the last few years. I do believe for him - it's a product of his epilepsy and not his medication.My recommendation to you though is to find a center that has specialized pharmacists, request an appointment with the actual pharmacist, and have a list of your questions. I don't know all the better epilepsy centers but in St. Paul Minnesota is MINCEP and they do have an excellent creative pharmacy staff. Is that too far for you? OR ask the Cincinnatti Center's pharmacist's qualifications for specialized treatment for epileptics and ask them too, their opinion of MINCEP's pharmacists. This is the route I'm going to go but I think like you, I don't want to go through side effect hell and since I have to switch off of Dilantin, I'm determined to go to the place within reasonable distance where I can get the optimum pharmacy minds. I don't know if I gave you any help at all. I don't know if there are solid black/white answers for you either. A lot of epilepsy treatment is trial and error and that's hard on everyone.Good luckGretchen

RE: New to this road

Submitted by Kathy on Wed, 2005-03-23 - 09:13

Gretchen,

Thank you for  your reply,any information or insite is good. We have been all over the cincinnati childrens site and yes they do this test its 1/2 teaspoon of blood and the test will be back to your Dr. in 2 business days, most insurance do cover it,they are testing the genes to find out what meds your body will use with little or no side effects, there are curently 37 drugs  on the list for this test.Also  for drug/drug interaction,if somthing so good can be done why isnt more spread of this testing done? very old question. No Joseph hasnt been through many trials and I want to keep it that way, his med is keeping him seizure free(very thankful) but as a new parent to this we are not willing to go ahead with trying this or that without a fight  for Joseph yet.Im sure from your experience you have been there or are still there.As for his behavor the difference since meds is I can not talk him out of the tantrums,we do just let him go through them and it does help,it seems when he is done something has clicked for him and he will go on a talking or learning something new frenzy.We can take alot, and will take it as long as he is sz free(everyones goal) but it sure makes us wonder about things when they happen,he has more starring episodes now 5-10 sec not sure about this,has had very soft stool with the sprinkelss showing up in his stool 2 times now, vomits al least once a day(down toonce a days now) his nero also asked how much we could take to be sz free.

Well I think I have went on long enough, I will keep reading your post and learning for hands on and never stop searching for Joseph. Thanks again Gretchen.

Kathy