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Medical Forum / Diseases and Disorders / Epilepsy / March 2004dilemma
I know almost everyone in the group has faced this, so I want to share my dilemma even though I know I have to make this decision alone. I went to the neuro last week (can't even remember which day it was) and he thinks I should increase my Tegretol dosage, from 1000 to 1200 per day. I have been getting complex partials every couple of weeks since October, and we already raised the dose from 800 to 1000 at Christmas. I am feeling really doped up from it, very fatigued and lethargic, and my memory is getting alot worse. I am not sure which is worse, the seizures or these side effects. The pattern so far is that a given dosage will stop the seizures for a few months, then they start up again and it's time to increase. That's exactly what happened on the Topamax, until the side effects were too much and I had to switch drugs. The neuro can't say whether my tolerance will keep increasing. He refused to give me Ativan. But he did say I could take an extra 200 mg Tegretol on days when I feel likely to have a seizure! I thought that was almost funny. He offered to switch me to Keppra but said it was very expensive. I don't have any drug insurance since losing my job in January so I said no for now. Anyway I just needed to vent a bit. Thanks for listening. There's so many medications out there, why can't he/she suggest something else? It's obvious this med is not the one. Keppra is a great med except if you have a tendancy to get migraines, then it seems to feed on that and you live with a headache always. It's your health...don't be afraid to say NO! > I know almost everyone in the group has faced this, so I want to share my > dilemma even though I know I have to make this decision alone. I went to the [quoted text clipped - 14 lines] > I said no for now. > Anyway I just needed to vent a bit. Thanks for listening. Ask yourself if you can get by during everyday life with a few seizures. Doctors are only interested in killing the seizures at all costs and don't care two cents about the side effects. I have partial complex seizures and frequently tell my doctor to go to hell about raising my drug dosage. I was doped for about 10 years and it caused me alot of problems at work. You should check out your local Epilepsy Association for a TAKING CONTROL OF YOUR WELLNESS PROGRAM It was developed 20 years ago in california and it helps you find your triggers and shows you how to cope with the epilepsy. Sorry about losing your job. Going thru it as well. You should check out if you qualify for any government programs for diasabled people. Marty > I know almost everyone in the group has faced this, so I want to share my > dilemma even though I know I have to make this decision alone. I went to the [quoted text clipped - 14 lines] > I said no for now. > Anyway I just needed to vent a bit. Thanks for listening. Any chance they might consider adding a Second med. and reducing the Tegretol to use a synergy of the two? When I was only at (2x400mg --1x AM, 1x at night) Tegretol CR and started having more Complex Partial seizures (older name was Temporal Lobe for others), rather that bump my Tegretol Controlled Release up further (I weigh about 150 lbs), my neuro added Clobazam (Frisium) slowly to replace the night dose, then Reduced the 400mg night dose over about 7 weeks. When I had other szrs. later they added half a tablet (5mg Frisium) with the AM Tegretol, then later (each seizure) another half tablet at night, then the half tablet AM. (I think I wrote you last year about that.) Last Med. level *change I had was ~1995 or 6. I've had the same combo of Tegretol and Frisium (Clobazam) AM and Frisium at night since then. G.R./ > I know almost everyone in the group has faced this, so I want to share my > dilemma even though I know I have to make this decision alone. I went to the [quoted text clipped - 14 lines] > I said no for now. > Anyway I just needed to vent a bit. Thanks for listening. He did say that we could try adding a second drug if the higher dose doesn't work out. I am just so tired of this endless f*ing around with different drugs and dosages. Just when I think things are stabilized, the seizures start up again. I'm wondering if there's any drug on the planet that does not produce a tolerance if you take it for long enough. I am considering taking advantage of my unemployment to go off the drugs completely and try some alternative healing methods. I used to take herbal remedies, but they never worked all that well. > Any chance they might consider adding a Second med. and reducing the > Tegretol to use a synergy of the two? [quoted text clipped - 38 lines] > > I said no for now. > > Anyway I just needed to vent a bit. Thanks for listening. > He did say that we could try adding a second drug if the higher dose doesn't > work out. I am just so tired of this endless f*ing around with different [quoted text clipped - 9 lines] > > > > When I was only at (2x400mg --1x AM, 1x at night) Tegretol CR and started > > having more Complex Partial seizures (older name was Temporal Lobe for > > others), rather that bump my Tegretol Controlled Release up further (I weigh > > about 150 lbs), my neuro added Clobazam (Frisium) slowly to replace the > > night dose, then Reduced the 400mg night dose over about 7 weeks. When I > > had other szrs. later they added half a tablet (5mg Frisium) with the AM > > Tegretol, then later (each seizure) another half tablet at night, then the > > half tablet AM. (I think I wrote you last year about that.) > > > > Last Med. level *change I had was ~1995 or 6. I've had the same combo > > of Tegretol and Frisium (Clobazam) AM and Frisium at night since then. > > G.R./ > > > > > I know almost everyone in the group has faced this, so I want to share my > > > dilemma even though I know I have to make this decision alone. I went to the > > > neuro last week (can't even remember which day it was) and he thinks I > > > should increase my Tegretol dosage, from 1000 to 1200 per day. I have been > > > getting complex partials every couple of weeks since October, and we already > > > raised the dose from 800 to 1000 at Christmas. I am feeling really doped up > > > from it, very fatigued and lethargic, and my memory is getting alot worse I > > > am not sure which is worse, the seizures or these side effects. The pattern > > > so far is that a given dosage will stop the seizures for a few months, then > > > they start up again and it's time to increase. That's exactly what happened > > > on the Topamax, until the side effects were too much and I had to switch > > > drugs. The neuro can't say whether my tolerance will keep increasing. He > > > refused to give me Ativan. But he did say I could take an extra 200 mg > > > Tegretol on days when I feel likely to have a seizure! I thought that was > > > almost funny. He offered to switch me to Keppra but said it was very > > > expensive. I don't have any drug insurance since losing my job in January so > > > I said no for now. > > > Anyway I just needed to vent a bit. Thanks for listening. **G* I wonder why he wouldn't give you some Ativan? You've never seemed like the type who'd over use it or risk side effects that you weren't able to handle. Heck, you've had Enough of those already... Mine finally gave me some ~1995/6, and I only used about 3 per Quarter at first, later 2-3 a year. (Last time was just ahead of my Daughter's wedding, so ~1999. Before that, I had gone about 3 years without any. ) With the combo I mentioned earlier (for Rt. T.Lobe seizures) of Tegretol CR* and Frisium (Clobazam), I haven't needed a dose change since ~1996. I hope you can keep 'all your hair' !! :-< I had feelings you described with Dilantin, then the Tegretol CR, and even as some of the Frisium was added --> "Will I *ever get a Dose that works for this *&^%^% Seizure stuff? " I really had a period of 12+ months where I figured we'd just keep adding doses until I needed a Tablespoon to measure my doses with... But they started to get further and further apart, the Auras reduced and eventually stopped (well after *full control -- ~18 months), but I didn't Know that at the time. The Auras were the horror switch that made me Fear a New One was on the way.. Since they got stronger and stronger when they Did happen, those were worrisome at the time. But that's all. They were just a worry. (I *think your's were the Controlled Release Tegretol weren't they? Tegretol CR in Canada, XR some other places? I think most places they don't prescribe 'just Tegretol' without that time release option much any more. If your's were the older type, the slow release type keeps a more stable blood level so 2x/day for example, you could vary the night dose by 3-5 hours either way of the usual time. Now that I only take mine in the AM, I don't know what that does unless it's working for more than 24 hours anyway.) Although the Frisium is the newer of the 2 pills, the Prescription costs were about the same a first, since I used less of the Frisium to replace the night dose of 2 Tegretol that was phased out. I *think too, on the http://efa.org site where their Medications Glossary is (that I couldn't find earlier stuff I wanted..) there Might be stuff about *some of the Meds. not working as well for Women as Men. I don't know if Tegretol is one of them, but I wouldn't be surprised.... That's why I wondered if a Secondary Medicine With the Tegretol at lower dose, might give you closer to a balance that might be more stable for you... It would also reduce any Sleepiness or Punchiness that can arise if the Tegretol were near the Therapeutic Max. for your metabolism and weight. If you don't see anything there about 'Women's stuff and AED pill tolerance' try Julie's Idaho site. I know it was on one of those. Not being a 'girl' I just skimmed the site, for information's sake, but didn't specifically bookmark anything. G.R. / G'day ann it is ann isn't it, i sometimes forget. if you are paying the doctor then you are the boss, at least that's my opinion. while the doctor's opinions are more informed than your own it's your body and you know what's going on inside more than the doctor. sometimes you just have to advance your opinion as being the more correct for you! if the doctor is so insecure that he/she can't accept an opinion counter to their own then maybe you need a new doctor. as for what to do i go along with gr. i found that when a second drug, lamictal, was added to my tegretol i found that it worked brilliantly and i have had almost no problems since (2001). pablo > He did say that we could try adding a second drug if the higher dose doesn't > work out. I am just so tired of this endless f*ing around with different [quoted text clipped - 4 lines] > completely and try some alternative healing methods. I used to take herbal > remedies, but they never worked all that well. Hi Pablo: (It's Hilary, not Ann.) This doctor is actually quite open-minded (compared to my previous neuro whom I left because he was so clinical and arrogant). He is just giving me his recommendation based on his knowledge - the final decision is up to me. I really don't blame him, it's just so frustrating that he doesn't have any clear answers or better solutions. Of course his priority is to control the seizures, not make me feel better. I have to decide what *my* priority is: eliminating the seizures, or feeling like a normal human being and being able to live a decent life. Dare I hope for both at once? ;) Another frustrating thing is that I don't know how much of my depression, fatigue, memory loss etc is due to drug side-effects, what's caused by the seizures themselves, and for that matter, what other causes there may be that I'm unaware of. You hear all kinds of theories... Food additives? Pollution? Allergies? God only knows what else... > G'day ann > it is ann isn't it, i sometimes forget. [quoted text clipped - 17 lines] > > completely and try some alternative healing methods. I used to take herbal > > remedies, but they never worked all that well. g'day hilary i'm sorry for the mistaken identity sometimes it's hard to remember who's who here. while seizure control is the first consideration it is useless to you if your life is adversely affected by the side-effects from the medication. i found that when i was taking topomax as an adjunct to tegretol it certainly did the job it was intended for but the side-effects made me very unhappy, as you seem to be. when i changed to lamictal it was as if the fog had lifted from my brain, not that this combination will necessarily work for you, but the point is i tried topomax and it failed but i didn't have to stay with something i didn't like. maybe you can suggest to the doctor you may like to try different alternatives to increasing tegretol as it is already adversely affecting your life at it's current level, i know it worked for me in the end. good luck pablo > Hi Pablo: > (It's Hilary, not Ann.) This doctor is actually quite open-minded (compared [quoted text clipped - 25 lines] > > have had almost no problems since (2001). > > pablo Hi Gordon, Just out of curiosity, how much tegretol and frisium are you now taking? I'm trying to do the same thing with reducing mine, and am not sure how much frisium will replace 400mg tegretol CR. (Don't worry, my doc authorised me to do this myself as I know more about my reactions to meds than he does.) I'm taking 2000mg epilim - 1000am and 1000pm, 1600mg tegretol - 800am, 400 noon, 400pm, and am introducing frisium to hopefully reduce either one of the others. Any ideas as to which would be preferrable to replace - epilim or tegretol? My worst side effects seem to be from the tegretol, I think; drowsiness, foggy mind, hand tremors, difficulty with executive decisions, difficulty learning new things, difficulty forming words, etc. Incidentally, I weigh 100kg (I think thats about 220 pounds, for those of you who haven't caught up with the metric system yet ;-) Thanks, Darryl. -- To reply, change daryl to darryl in address. "It's all fun and games till someone loses an eye" Quote: My Mum > Any chance they might consider adding a Second med. and reducing the > Tegretol to use a synergy of the two? [quoted text clipped - 38 lines] > > I said no for now. > > Anyway I just needed to vent a bit. Thanks for listening. Under my reply to turbinado (on this thread if your's hasn't expired), and Below, I describe how slowly we took out the night dose of Tegretol and added the Frisium in its place, and added Fris. in AM with no change to Tegretol CR. (Frisium is intended to be used *with another medication, as add-on.) Current doses I use AM 400mg Tegretol CR with 10mg Frisium, Bedtime 10mg Frisium. G./ > Hi Gordon, > Just out of curiosity, how much tegretol and frisium are you now taking? [quoted text clipped - 22 lines] > > > > When I was only at (2x400mg --1x AM, 1x at night) Tegretol CR and started > > having more Complex Partial seizures (older name was Temporal Lobe for > > others), rather that bump my Tegretol Controlled Release up further (I weigh > > about 150 lbs), my neuro added Clobazam (Frisium) slowly to replace the > > night dose, then Reduced the 400mg night dose over about 7 weeks. When I > > had other szrs. later they added half a tablet (5mg Frisium) with the AM > > Tegretol, then later (each seizure) another half tablet at night, then the > > half tablet AM. (I think I wrote you last year about that.) > > > > Last Med. level *change I had was ~1995 or 6. I've had the same combo > > of Tegretol and Frisium (Clobazam) AM and Frisium at night since then. G.R./ > > > I know almost everyone in the group has faced this, so I want to share my > > > dilemma even though I know I have to make this decision alone. I went to the > > > neuro last week (can't even remember which day it was) and he thinks I > > > should increase my Tegretol dosage, from 1000 to 1200 per day. I have been > > > getting complex partials every couple of weeks since October, and we already > > > raised the dose from 800 to 1000 at Christmas. I am feeling really doped up > > > from it, very fatigued and lethargic, and my memory is getting a lot worse. I > > > am not sure which is worse, the seizures or these side effects. The pattern > > > so far is that a given dosage will stop the seizures for a few months, then > > > they start up again and it's time to increase. That's exactly what happened > > > on the Topamax, until the side effects were too much and I had to switch > > > drugs. The neuro can't say whether my tolerance will keep increasing. He > > > refused to give me Ativan. But he did say I could take an extra 200 mg > > > Tegretol on days when I feel likely to have a seizure! I thought that was > > > almost funny. He offered to switch me to Keppra but said it was very > > > expensive. I don't have any drug insurance since losing my job in January so > > > I said no for now. > > > Anyway I just needed to vent a bit. Thanks for listening. I just saw (I think) your other question about which med. to reduce. I don't know anything about Epilim -- maybe Someone ELSE around here can give you input on that. At Peak 150lb, ~70Kg, I was only at 400mg Tegretol Time released (CR) each Morning and 400 each Night, before we replaced the night dose with Frisium, and later added it with the AM dose of Tegretol. My advisory said to tell my Dentist and other Doctors (if any) I was using **Tegretol. My Dentist changed my checkup frequency from each *6 months to each *4 months. Apparently in some people it can rob Calcium, and that usually shows up first in our teeth. But if it were unfound or unchecked it could also affect (I assume) bone structure. I haven't had any problems when I was just on above 2x tegretol doses from ~1994-6, the Change of night dose to Frisium only was done about 95 or 96. Last pill change (mgs.) I had was late in '96. Last C.P. seizure I had was Dec.97, June 98. I think when I first started the Tegretol, the Dr. tended to ramp up the Bedtime dose first (I assumed to reduce any problems with seizures while I slept). So it was somewhat 'strange' that when we took out a Dose of the 2 Tegretol trips, we took out the *Night one (400mg) , and put the Frisium there (5mg, then 5mg AM later, to 10mg at night, and finally 10mg AM each time I had other C.P. seizures.). The Frisium steps in my case were done about 6 months apart and only added AM or night time, whenever I had another seizure. Since at that point they were down from 1 each 2-3 weeks to 1 each 8-10 weeks, the final Frisium setting (and Bloodwork! :-o ), tended to level out as my number of seizures reduced. (Here, both the Tegretol 200mg and Frisium 10mg are Solid pills with a slot in the centre so they can be snapped in 2, allowing Half Doses of e.g 300 or 100mg, and 5mg with the Frisium. Those were handy during the phase down of the Tegretol and slow increase, as needed, of the Frisium (Clobazam). ) Those 2 seizures I mentioned above, the Dr. didn't change the Pill doses for either, since both seizures were triggered by Emotional things that happened the 2 times. I think the Frisium is like the Tegretol CR in that once you get to a Target dose (slowly) and level off, it tends to keep a stable level in the blood even if I take the pills plus or minus 4+ hours of their target times (of 2 per day). When we went to Hawaii last September, we were 6 hours 'behind' where we are here (Toronto Canada), and I just took my AM and night time pills, as usual, without correcting for the 6 hour difference from Toronto time. I missed that question (No. of mgs. vs.what you're using+Tegretol poss. side effects, I think) on my earlier reply. G./ > Hi Gordon, > Just out of curiosity, how much tegretol and frisium are you now taking? [quoted text clipped - 21 lines] > > > > When I was only at (2x400mg --1x AM, 1x at night) Tegretol CR and started > > having more Complex Partial seizures (older name was Temporal Lobe for > > others), rather that bump my Tegretol Controlled Release up further (I weigh > > about 150 lbs), my neuro added Clobazam (Frisium) slowly to replace the > > night dose, then Reduced the 400mg night dose over about 7 weeks. When I > > had other szrs. later they added half a tablet (5mg Frisium) with the AM > > Tegretol, then later (each seizure) another half tablet at night, then the > > half tablet AM. (I think I wrote you last year about that.) > > > > Last Med. level *change I had was ~1995 or 6. I've had the same combo > > of Tegretol and Frisium (Clobazam) AM and Frisium at night since then. > > G.R./ |
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