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I'm scared, Dilantin is killing me!
Sun, 01/09/2005 - 03:01I have TLEs and Generalized sz's. I sz every day at least with drops, absences and jerks and then I have the odd CP or Jamais Vu or t/c and other things thrown in here and there. I have nocturnals which right now seem to be complex partials where I get out of bed wondering around trying to find my mother, who is deceased but I've also wondered around continually running into a wall trying to find a bathroom. I've even gone outside several times (I'm at least getting my exercise even tho I'm asleep!). One of my big problems is that I'm unable to take anything more than Dilantin with Clonopin which makes it more effective. I can take Keppra but it doesn't help me. All other AEDs give me horrid side effects. The new thought now is that this might be because I can't take other AEDs with Dilantin so an effort was just made in the hospital to get me off Dilantin, so I could once again try another AED and as terrified as I am to go through the wretched side effects I have with another AED, I was up for it. During this attempt to get me off Dilantin I went status for a long period of time. Wound up intubated, unconscious for quite awhile and the decision was made to send me home. I have bronchitis right now too and my epileptologist felt as touchy as my body seems to be, he wants that cured first, which is seemingly hard to do, and we'll try again. This time I'm going to slowly taper off Dilantin instead of cold cocking me off. I have been cold cocked off Dilantin before and felt wretched but didn't go status and when I was just in the hospital I had an IV drip of sedatives to try and stop that from occurring, yet it did.
NOW this is what irritates me to no end. I've had this for 6 years. Actually I've probably had it all of my life, I know for sure since I was 7 as my mother had me treated for 10 months but insisted my doctor call it "hyperkinicity" aka ADHD and not epilepsy. I believe she was afraid of what that diagnosis could do to me prejudicially during that period of time (the 50's) but the notes state I had generalized epilepsy. I do remember taking phenobarbitol, feeling sleepy but also getting rid of the weird feelings I had had all of my life. Then I was taken off. Had odd sensations, lost blocks of time and other things all of my life but 6 years ago exploded into full blown epilepsy I couldn't ignore. I'm now on disability but I waited a long time to apply hoping to be able to work. In my profession, or in any job I have found out, employers want me conscious at all times! Can't blame them, and I'm considered by any employer a liability risk. ALSO, I haven't been allowed to volunteer either so my home - has started feeling like a prison.
Anyway, I've been then primarily on Dilantin and Clonopin for 6 years after trying many other AEDs with disastrous side effects. This is what really PO's me off. Why don't these blasted neurologists tell you things like long term effects of these poisons? When I was first put on both of these drugs my sz's stopped just like that for 5 months. I was given a quinolone antibioitic that cancels Dilantin, which it did, and I've been out of control since then - about 5.5 years ago. But at no time did anyone ever tell me, and admittedly I didn't read about it for myself but took someone's word for it that Dilantin is an old thus safe drug (my A**). No one ever told me that Dilantin shouldn't be used for long term use. That's the latest news on Dilantin I've heard but how "latest" I don't know. I read here someone took it for 40 years? Good Grief! I know we all have our own individual reactions. I read someone takes Depakote or Neurontin especially and do just fine and I'm in a near coma. I was a lunatic on phenobarbitol and on and on so I'm stuck on Dilantin and I became very insistent about no one changing me off of it as we changed communities twice, doctors several times, and I have been adamant not being changed off of Dilantin because of the side effect hell I went through for 2 years while neuros tried me on different things. No one though told me Dilantin long term can be dangerous.
Over 2 years ago I think my Dilantin levels were always in the at least slightly toxic range but it seemed my sz's were a little better too so it was felt that was therapeutic, left that way. Since then my levels are booming, huge, as my epileptologist states "not acceptable" but even now on a very low dose, not even a therapeutic dose I'm toxic but I have to take something for now, and Dilantin is it.
But this long term use, long term toxicity? Has shot my liver enzymes way up and nothing is bringing them down. I now have peripheral neuropathy in both of my feet from the Dilantin and I'm not wild about loosing my feet! And this week I find out I have pancreatitis, which is a dangerous inflammation/infection of the pancreas and that also is attributable to the Dilantin. I'm supposed to be hospitalized for it and right now I'm refusing. I had this about 1.5 years ago too. I'm an RN. I had a pic line installed, a long term type of IV line, and hung my own antibiotics at home, gave myself my own insulin and got over it in about 6 weeks but no one is allowing me to do that now. Which is infuriating since I did it successfully once before. All of that on top of my memory shot to shit from being on Dilantin which is the all time memory robber.
I feel so guilty about telling any of my family I have yet another problem. One of my daughters and my husband have been my primary supporters. As in another thread I read, a lot of my children and other "friends" and family have run like rabbits terrified I guess I'll have a seizure in front of them (don't you feel like with people like this telling them - how can they be so sure what they're health future is and if they get something devastating do they want YOU to be around and be supportive or should you take off too?) My husband has been there but he's had an obvious grudge, frustration, anger about this and I think I've hit the wall with his attitude and am probably divorcing him although I really can't live alone but I'm working or trying to work those kinks out but how can I when I keep getting one thing after the other?
Why am I posting? I'm just depressed. As bad as I have this I have fought hard and I live as full a life as I can and it is hard. I don't feel like the doctors I've been to have given me information I should have had all along, any of them, about AEDs, seizures, any information that I should have had and now I wonder - and what else don't I know? If I hadn't had been on some chat lines and looked things up for myself I wouldn't know anything about my epilepsy. I know I'm not the only one who has this problem too.
The other reason is, I'm frightened. I feel like I'm having one organ failure after the other. Is this it! I try to stay optimistic and usually do but it is very hard to stay optimistic when you're ill, and from these blasted poisons called AEDs, which I can't live without and can't seem to live with.
HELP (with my attitude)
RE: RE: I'm scared, Dilantin is killing me!
Submitted by jstrfic on Sun, 2004-12-26 - 21:04
Like you, my husband was suffering from a myriad of seizure symptoms...he has been seizure free since July of this year....It's now almost the end of December!What's changed: Our attitude. We have become avid advocates of our healthcare. No longer do we take what we are told at face value.....We challenge every bit of advice and we constantly search for information: internet, medical and research libraries, etc. For example, did you know that according to the World Health Organization the US rate around 10 when it comes to its healthcare delivery systems and the wellness of its citizenry? Even Cuba rates higher than that!!! That's pretty shocking when you think how much is spent annually in the US on healthcare. We suggest you trade in your fear for knowledge.....we did. My husband's tests keeping coming back in the normal range: liver enzymes, blood levels (hdl, etc.). We figure if the rest of the world is marching to another drum.........maybe there is something to it and maybe we should too. We have come to believe in the old adage: 'we are what we eat' (that also applies to what we expose ourselves to).We also recognize that we're all unique; therefore, what works for one doesn't necessarily work for another. That's why prescriptions have such an impact on us.....they're built for the general populace, not for you specifically. So, learn to test yourself! Test everything that goes into your body then just put the stuff into your body, that it wants and needs: go to 'www.testyourself.info' and find out how to do this. My husband doesn't have cancer, but the sane advice of Dr. Lorraine Day, M.D. (Cancer doesn't scare me anymore) is worth considering. We came across www.Nikken.com after reading the Weintraub Report (a landmark research study on the reversal of Diabetic Peripheral Neuropathy through magnetic insoles)...CBS, NBC and ABC news did a feature on this around July 2003. We had come across this after realizing that our environment had an impact on our health (home construction, inside air, energy exposure, water delivery systems, etc.). Nikken is linked up with UC Irvine School of Medicine on researching the impact of energy on our bodies (magnets/far infrared, etc.). We checked out Valerie Free (www.complementaryhealing.com) regarding energy sources and usage; also the PBS series NOVA - Magnetic storm (go to their site-- www.nova.org). We have investigated what is going on in Japan, Sweden and other parts of the world and realize how far ahead they are in the area of healthcare. Check out 'Cancer Coverup' at www.cassandrabooks.com (even though you may not have cancer, this book uncovers what big business our healthcare is and how much money it generates for pharmaceutical/insurance companies/research insitutions/government. Learn about the strangehold the FDA and big pharma have on your doctors and the AMA through government funding and tax rulings.We found out through research that in Germany, Sweden and Switzerland the medical industry uses herbal compounds (Hawthorne, Choline, Bilberry, Astragalus, Heartease, Siberian Ginseng along with Niacin and Vitamin E) to control everything from high blood pressure to glaucoma. That in Japanese hospitals, far-infrared saunas and bed coverings are used to shrink cancerous tumors. Interestingly enough, the US still clings to using methods established by our great-grandparents: that of poison (chemotherapy), burning (radiation) and slashing (surgical removal). What has that to do with the price of tea in China? Well, we have learned through discovery about the 'cocktail' effect of prescribed medications. As different symptoms occured, a medication was prescribed to subdue it. Over the years, it has been difficult to discern what actually was due to a real problem my husband was having, and what was caused by the chemical mixing going on (blood pressure medication, seizure medication, etc.). It's taken time journaling this all out and figuring the connections. Gradually over the past year, the conventionally prescribed medications have been swapped for a regimin of pure water, clean air, disciplined sleep/exercise, organic nutrition (including supplements), purposeful exposure to natural energies (far-infrared, magnetic gauss). We STRONGLY advise that you not be naive and go 'cold turkey' on any prescription ....that can be very dangerous as you already noted. However, you can find out the chemical makeup, drug interaction and withdrawal behavior of any pharmaceutical drugs from their manufacturer's website and from your local knowledgeable pharmacist.Don't be afraid.....be brave, do your homework, stay open to all avenues (alternative and conventional) and stay informed about how to keep yourself well! We wish you the very best in your endeavors!