I'm scared, Dilantin is killing me!

TWO PARTER:(1) Another caution:  Dilantin can also reduce the plateletes, a component of your blood.  Plates are sticky, thus helping your blood clot.  With a dramatic reduction of the plate count you can have seriously disablying disability to stop bleeding.  A sign is increased bruising.  I had this for 2 weeks once and it got worse and worse until I'm am truthful, nearly my entire body was a big giant bruise, and I could get no attention about it.  We were living in Failed Drop Out Depot at the time though.  I figured the doctors who were there in this remote place couldn't practice any where else?  So they came to our area. The medical attention was in the extreme in poor.  While entire body was turning black/blue, and finally recognized, my husband was taken to the police station eventually to check his hands/knuckles to see if he was battering me, which he was not. That has now happened three times. I was going to a Wanna-Be-Neuro at the time. He admittedly moved to our beautiful mountainous because he loved ice climbing.  He worked 4 days a week and never took "call".  He was also the ONLY neuruologist in this remote region I lived in.  Should I have moved?  Sure.  But I had lost my lucrative job, jobs for my husband who also had open heart surgery just weeks before I Got epilesy were few and far between and paid horrible, with no medical insurance at any of them.  We were stuck!  Anyway? I complained to the neuro (at least he was real eye candy!), my internist for two weeks as I increasingly turned  black/blue.  I was poo pooed and started feeling like a hypochondriac, which was their veiled suggestion.  I was new at all of this for myself at least at that time.  My son's epilepsy is different enough from me and his E didn't prepare me for my own.  I then clustered with drops for two days, didn't knowing the danger of that and after some point wasn't recovering which was misinterpreted, or not known the seriosu of by those around me and I couldn't have asked for help from those around me either, I was too far gone altho still on my feet, whacking my head still constantly. I didn't know about the danger of clustering then, which I still do often now. I whacked my head reapeatly against hard objects - with seriously decreased ability to clot.  The result then was two skull fractures and 3 brain hemorrhages.  My heart stopped twice from potasium changes from too many sz's.  Subsequent two brain surgeries to repair the injuries and yet another several years later.  I don't remember much of that but I sure as heck do remember the months of multiple therapies afterwards to regain functions, and I still work daily at these therapies or I loose ground.  I was very lucky.  I started recovering starting with an about 2-3 year old cognitive level and a startling impetuous temper. I could only write in about 3 word sentences when I could begin to write again and with a brace on my right, dominant arm, which I long ago pitched. Slowly I got better and now I have been left with only right sided weakness, which is not bad.  BUT my point is? Dilantin can periodically reduce your platelets and it does on me, and that can be dangerous. My blood is now checked for plate counts monthly and periodically my plates have dropped dangerously low but I can't feel that, know it unless the sz's increase or even stay the same and  start bruising ridicuously. Sometimes my pates drop but I am not dropping enough or in such a wa to cause bruising to signal me, and then I'm really set  up.  I've posted and posted about this on EFA and those who post there too might feel - oh here she goes again but people die from this and my heart stopped twice with subsequent dedicated people who gave me CPR, who knows how many medicines and potassium supplements.  I often have to have potassium supplements after a long seizure and one of us always asks to have my potassium check now. Is this ncommen?  No, unfortunately it's not on Dilantin and other AEDs too.  Ask your pharmacist pleasea if your AEd leaves you at risk because Dilantin does, but no one told me, nor listened to me when my bruising became ridiculous and a signal everyone ignored.  I'm not that passive now.  If I feel something is wrong - I'm insistent to have it checked out but I have a devoted epileptologist, gosh a wonderful person too, and even though I have moved several times to other communities and we are hours away, he still takes care of me.  I could move to Timbukto and still, return to him.   Now when I go into the hospital? One of the first hings they do is come in with a back and front drawn person on paper and document all of my bruising.  Often it is little, sometimes  a lot, but the suspicion my husband beat me, which he'd never do has never been completely cleared or forgotten and that is another fall out he suffers from, from my epilepsy.  What else tho could responsible medical people which I now insist upon do?  Serious reduction of platelets is a serious condition, as you can see,  and potential problem with Dilantin, also other AEDs too.  Check with your pharmacist is my recommendation and ask if the AED you take or your child can cause this side effect.  I do know other people on Dilantin who do not have this problem.  But I do, others do, and my ignorance had far reaching and permanent consequences. Now I find out many, manbe most people who treat epilepsy know this problem with Dilantin and I ask?  Why didn't I?  Maybe why don't you?  I'd hate to have this happen to anyone else because I'm shy to share this experience once again.  I have had emails saying please stop sharing this you've said it enough.  I don't think it can be said enough if only one person goes through what I did.  I don't want to be dramatic and hope I didn't.  I want to share this information and again, not cause a stampede.  Dilantin has in many ways been good for me and so far all I can take.  My epileptologist is determined to get me onto other AEDs.  I hoe he succeeds.  I hope I have the grit to hold in there and go through the hhell of it.  I will, as I was, be hospitalized when my Dilantin taper gets "so low" and start very slowly up on AED #1 as I will need at least two.In answer to the last posters question? I have been dosed in every combination, low dose, high dose, take up slowly, take me up to as low a dose that is effective, every combo in the world and still I can not handle the side effects which are extreme and not well understood even by my epileptologist until now. I've even had an insulin pump's needle surgically placaed in my abdominal fat to give me continuous dosing with an emergency button with Ativan in it when I get a strong aura to ward off a sz.  The first time it helped. The second time the neuro who had it put in slipped me a micky which felt like cyanide, I swear, and my muscles went on strike and I pulled the needle out. That was several weeks ago. There is a theory that one of the drugs I take not related to epilesy may be enhancing, exacerbating side effects and I've been taken off of that. We're really going for it this time but I have bronchitis, slight pneumonia, and my epileptologist who I'd follow to the ends of this world, won't give up on me, so how can I?  Also still being on Dilantin while making the change over is interferring, intensying side effects I have had on the new AED maybe, is the recent theory.  At this point many consults on this problem of mine, we're trying something every time some thing fails.  SURELY I can find something else.  NO!  I WILL find something else to take and I feel deep in my inside that 'somethingthing else' will help me much better.  I have to think that but I do anyway.   I have been on all kinds of combos.  I was on 5 AEDs, low dose, at one time.  Sheesh talk about a psycho feeling! I've  had an insulin pump's needle surgically placed in my abdominal fat to give me a continuous dosage of low dose combination AEDs. It had a "panic" feature on it filled with Ativan so if I had a strong aura I could hit it, get an infusion of Ativan and hoefully abort the impending  sz.  It did work for about 33 weeks the first time then stopped.  the second time the new neuro I'm seeing slipped me a micky, an AED I have the most side effects on, knowing full well there was to be no other funky junk in the pump but he did it anyway.  Hot headed me go mad.  Turned off the pump and later pulled out the needle. Don't we have to trust what our "doctors" say?  Well, yeah, he's no longer my close to home neuro.  He's not trustable and obviously doesn't respect my wishes, needs, stated history.  So I fled to my epileptologist who isn't close - at all.  Nothing and I mean nothing has slowed these down yet.  Again? Stay tuned because I AM getting off Dilantin sooner or later.  I might not get better on something else?  But I will have at least gotten through step one, off this blasted stuff.  I know many others don't have the problems I have. How do I not now go ahead and say instead of "I'm depressed", but here are the things I have endured and were predicable on Dilantin for some? I know of another who has gone through all I have and has kept this totally to themselvs and to me - that is selfish.  This person could have possibly saved me some major brain damage and other damage.  So once again for those who have heard it - I'm repeating.  I will continue to repeat.  In good conscious I can't go otherwise but again I don't want to cause a stampeded.  BE SELF PROACTIVE. As far as other AEDs go?  Sure I'm afraid.  These little brains poisons have been really and I mean really awful, not uncomfortable, undoable.   But when you are sleeping 22 hours a day?  Who knows, even you, what's going on, or even have the cognition to figure it out?  But please ask about your plates if you take Dilantin. Set up a schedule, maybe quarterly, I'm not sure, to have them tested. We had my grand daughter's plates checked yesterday for the 4th time, all others being normal?  This time they were low.  Not dangerously low, but maybe heading that way?  WHY take a chance, and especially on a child, my precious grand daughter.  If all I've gone thru helps her?  I've thought all night long, good for me, good for her, maybe we warded off for her, what has happened to me.  She is 4 years old.  She was started on Dilantin as a short term drug in the hospital to get her sz's under control because this drug is effective for that, especially with children, and it did stop her seizures, but somewhere in there, she never got switched to something different but all of that is changing as of yesterday.  Thank God my experiences at least may save her from going through the same as me, again.  I really feel if this post helps just one person reading it?  I'd feel like I have done the right thing in posting, so much about Dilantin.  BTW I'm on 200 mg a day right now?  That's subtherapeutic, usually considered?  My trough level, before I was medicated this morning?  Was 32, again normal is 1-20.  I've been on 200 mg for 2 weeks.  My level is going UP.(2)  Jenna I think sometimes we do something for someone that maybe "we", or you in this case, didn't realize the far reaching consequences.  The sites you gave to me?  Have or I hope have had a measurable impact on my failing marriage, now nearly terminal marriage.  I had planned to leave on December 28 and may still, the jury is not yet in.  I can take no more guilt, harsh words from him, his frustrations, his sighing and dying when I need a refill, dropping in stores, getting phone calls at work I'm in the ER (again), and all the rest and many other punishing things he's done actively or passively to me and recently it's gotten far far worse.  I can't take it any longer.  He's not a bad man.  He can't take any more of this.  Simple.   I do understand his frustration and anger I've been thru it with a son and a father and far worse ailments with my other children.  I DO know  the other side of the fence and it's hard, but I never left my post either.  But I don't have to take slights and hurts at home, let alone all I get out of my home either.  I have enough to contend with, I don't need to contend with his too.  I know my epilepsy negatively effects him but he has been resistant to getting help. We have gotten help from 2 therapists, but I feel he has been occupying a chair, not participating or listening and I don't feel like the two counselors we've sought know much about epilepsy either, which hasn't helped us. Primarily? My husband can not handle my mood changes, loss of vitality, increased cost burden to our much reduced income, inconcenience to his life. I was a vertiable power house of energy and action before this exploded on me.  Now on my best days I'm cheerful, cook dinner, keep the house clean, laundry done and I'm pleasant, sometimes even fun. We have had to give up many things such as going to the show which we did a lot, playing tennis (I'm good for about two spaghetti armed serves) and other things we loved to do together but we both know are no more.  I can suddenly dissolve into tears that don't quit over the slightest thing or anger and/or frustration starts. Or the anger stands all by itself and with shame I admit - I'm VERY good at anger.  I know I'm causing this problem. I have worked hard at it but it is very difficult to thwart.  I know when I'm post ictal  my moods can be ridiculous.  I can be weepy, pouty, okay, combative, but always very reactive at the first after a long status episode particularly. I don't like being touched and I've swung at people I love when they try to haul me up off the floor when I know my legs aren't working yet.  I feel their embarrrassment in a public place but I am NOT embarrassed. Again, this is who I am, my package.  I DO go into stores as often now as I did before I had epilepsy.  But I'm very photoconvulsive.  I've tried everything suggested to me and some work in certain situations, some don't.  Christmas? Has been a disaster and is every year with the displays of winking, blinking lights which drop me every time.  It's not a lot of fun to go Christmas shopping when I'm sz'ing all the time.  I know that.  I resent it, but he has really resented it, confused, blaming, frustrated.  Anyway I asked if he'd read the site you referred to on moods?  It's not that I haven't told him some of these things before although I learned more too.  But it was confirming to him that  what I've told him about my inability to control my moods is not my excuse, it's part of epilepsy.  He's read that several times elsewhere (but too scientifically stated), heard it endlessly from me (whine whine) but your site fascinated him.  Go figure.  Guess it takes the right place, at the right time, said by the right source, shared by the right person (you).  Perhaps it is at last opening his eyes to the fact that when I say epilepsy is not all sz's, he is realizing it can be mood swings too.  We have other problems related to epilepsy, I'm not counting on miracles and don't even know if I can recover from the hot words and hurts we've had now. We had significant problems before I got epilepsy and maybe we always will - we are very different people. HOWEVER? This morning for the VERY first time he WANTS to ask me questions, talk to me about mood swings, other things and not once ever has he approached me and asked - tell me more.  Just that?  Even if we divorce?  Means a tremendous amount to me.  So Jenna I'm going to fantacize that you had little money for Christmas shopping this year and despaired at your small gifts but rest assured, know, you gave a very large gift to me, and maybe my husband too.  I hope so.  Thank you, again.  Thank you to everyone here.  I will now sign off asHesitantly, but heading back to Optimistic