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Medical Forum / Diseases and Disorders / Epilepsy / August 2004A question about Dilantin
To all Dilantin users. Because my current meds are being blamed for some problems I have been having, my doctor has given me the option of switching to Dilantin. I've asked about this here before, but only got a response from Tim regarding gum problems. I also saw someone comment about a "brain fog" caused by Dilantin. If I switch, I will be taking 400mg per day (2X200) of Dilantin. If you use or have used Dilantin, please tell me what sort of side-effects you have experienced with it. If you have had no side-effects from using Dilantin, then please about that too. Thanks Bob Bob <spsandlostinthe@invalid.net> wrote in news:410FBEE1.3E5720F0 @invalid.net: > To all Dilantin users. > [quoted text clipped - 13 lines] > > Bob 2 pills a day doesnt sound like much. I was up to 5 day at one point. Yes there was brain fog associated with it. Others around me could really tell since it was like I wasnt really there. I was down to 3 for awhile and this wasnt so much of a problem. But I had problems with only 3, so back to 5 I went. What are you taking now? > Bob <spsandlostinthe@invalid.net> wrote in news:410FBEE1.3E5720F0 > @invalid.net: [quoted text clipped - 22 lines] > this wasnt so much of a problem. But I had problems with only 3, so back > to 5 I went. But no gum problems? or other problems? > What are you taking now? I'm on 1800mg Neurontin + 195mg Phenobarbital for my TLE --> Simple & Complex Partials. The Phenobarbital is the doctor's suspect for these terrible muscle/tendon pains I've developed. Bob > But no gum problems? or other problems? > [quoted text clipped - 3 lines] > Complex Partials. The Phenobarbital is the doctor's suspect for these > terrible muscle/tendon pains I've developed. Yes I had the gum problems. I had memory problems as well. One side effect I didnt have was the abnormal hair growth, at least on my head. That was when I started LOOSING my head hair. Bah! But I am told dilantin didnt cause that... but my genes. Others can comment, but probably your doctor wants to try from the beginning to see what helps you. If dilantin wont do it, its on to the next one. I was very glad to get off dilantin. Im now on tegretol and keppra. They are not %100 and I still have partials... like the ones you describe (hearing/reading etc). However these meds also have their own side effects. All of them do. I hate to say it, but even with all this modern medicine, patients are still like guinea pigs and meds are changed nd messed around with until a good result it achieved. And then when our bodies change, we have to go through the same thing again. > Yes I had the gum problems. I had memory problems as well. That's the sort of feedback I need. I may find out that it effects everyone this way or maybe not. People are different. > One side effect > I didnt have was the abnormal hair growth, at least on my head. That was [quoted text clipped - 4 lines] > beginning to see what helps you. If dilantin wont do it, its on to the > next one. It may be something else right away if I tell him I won't try the Dilantin. > I was very glad to get off dilantin. I won't go on it if there are too many problems. No point in going from the frying pan into the fire. > Im now on tegretol and keppra. Tegretol didn't help me & Keppra made me feel weird. > They > are not %100 and I still have partials... like the ones you describe [quoted text clipped - 3 lines] > messed around with until a good result it achieved. And then when our > bodies change, we have to go through the same thing again. Yeah. It's trial & error. Bob Bob <spsandlostinthe@invalid.net> wrote in news:410FF84F.7AAEEEA1 @invalid.net: > Tegretol didn't help me & Keppra made me feel weird. Dilantin might. Im not a doctor. And again everyones reactions are different. So would yours. Best thing to do it talk to your neuro about the possible side effects. Keppra does cause mood swings, as it did with me. But this effect reduces after a few weeks. Everyone is different, as above :o) > Bob <spsandlostinthe@invalid.net> wrote in news:410FF84F.7AAEEEA1 > @invalid.net: [quoted text clipped - 3 lines] > Dilantin might. Im not a doctor. And again everyones reactions are > different. So would yours. That's why I'd like to get as many responses as possible. So far I've only heard from you & Tim and maybe everybody has the gum & brain fog problems and maybe not? I dunno right now. > Best thing to do it talk to your neuro about the > possible side effects. I already have the script and it's my decision to go or no go. That's the way I set it up with my epileptologist on my last visit. I won't be seeing him again for 3 months. > Keppra does cause mood swings, as it did with me. It wasn't a mood, but it really made me feel weird; almost like a type of aura. At the time, my doc was a neurologist and he had given me no guidance, so I simply stopped taking it. He had no comment when I told him on the next appointment. > But this effect reduces > after a few weeks. Everyone is different, as above :o) I'm supposedly in a minority 2-3% that Phenobarbital causes muscle pains in. I could kick myself for not asking him (we were running out of time and I have enough brain fog as it is), but HOW does Phenobarbital cause the pain. What is the mechanism? It all happens when I sleep and I feel it the next day. Bob > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle > pains in. I could kick myself for not asking him (we were running out > of time and I have enough brain fog as it is), but HOW does > Phenobarbital cause the pain. What is the mechanism? It all happens > when I sleep and I feel it the next day. I have read that here. But I have never taken it. I dont recall the topic name but Im sure its still here. > > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle > > pains in. I could kick myself for not asking him (we were running out [quoted text clipped - 4 lines] > I have read that here. But I have never taken it. I dont recall the topic > name but Im sure its still here. I've posted about it in the past myself. That's probably what you remember. Nobody else has mentioned the topic since I've been following the NG. Bob > > > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle > > > pains in. I could kick myself for not asking him (we were running out [quoted text clipped - 9 lines] > > Bob I expect you've looked down the http://efa.org medications directory? There are others too, for general medications and AEDs, but I used to look at the Ep. Foundation First, since a lot of the more common type side effects might show up there. There are other sites though that Barb or others have posted (likely Bob !! ) that have other Medication Glossaries. With both Phenobarbital and Dilantin, I'd expect both Those to be pretty much static on news sites since they're both so old? The more recent stuff (like Keppra, possibly Tegretol), there can be other stuff show up from time to time. Usually though (wrt Tegretol), I'd get a Note from my Pharmacy on Prescription Refills (due this week later), but I haven't seen anything on My medications since *I told them about the Grapefruit and Tegretol conflict, I found here or at efa site. G./ > > > > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle > > > > pains in. I could kick myself for not asking him (we were running out [quoted text clipped - 24 lines] > anything on My medications since *I told them about the Grapefruit and > Tegretol conflict, I found here or at efa site. G./ Yes. I've looked everywhere! No good info found. Bob > > Bob <spsandlostinthe@invalid.net> wrote in news:410FF84F.7AAEEEA1 > > @invalid.net: [quoted text clipped - 30 lines] > the mechanism? It all happens when I sleep and I feel it the next day. > Bob **** Do you only (mostly) get the Muscle Pains at night? Or do you get them night time and day time? I wondered, as I work down the rest of this thread, if you were having some Nocturnal Seizures, those could cause muscle aches, also pains in jaw and teeth if you were clenching there too. Before I was fully controlled (again on Dilantin, and on Tegretol by itself), I had a few nights where I'd wake up with extreme pains either from clenching my fists, or along backs of legs. I assumed I was stressing muscles while asleep put not strongly enough to wake me, just strong enough to cause continued pain during half or more the the next day. G./ > **** Do you only (mostly) get the Muscle Pains at night? They develop during the night, but I don't feel them until I'm awake in the morning and can barely get out of bed or walk. > Or do you get them > night time and day time? I'm totally sore in my neck & extremities during the day, but the trouble is caused while I sleep. The pain doesn't increase during the day. > I wondered, as I work down the rest of this > thread, if you were having some Nocturnal Seizures, My doctor says that isn't the problem or they would have noticed it while they had me in the hospital over 2 years ago. What a joke! I think it is the problem, but what can I do when I have this doctor? > those could cause muscle > aches, also pains in jaw and teeth if you were clenching there too. Nothing with teeth & jaw. > Before > I was fully controlled (again on Dilantin, and on Tegretol by itself), I > had a few nights where I'd wake up with extreme pains either from clenching > my fists, or along backs of legs. Right, same thing. I can't either completely close my hands into fists nor open them up all the way. > I assumed I was stressing muscles while > asleep put not strongly enough to wake me, just strong enough to cause > continued pain during half or more the the next day. G./ That's what I think is happening to me. Bob > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle pains in. I > could kick myself for not asking him (we were running out of time and I have > enough brain fog as it is), but HOW does Phenobarbital cause the pain. What is > the mechanism? It all happens when I sleep and I feel it the next day. > > Bob It's been a long time since I've posted here (mostly lurk), but I had to jump in on this one. How long were you on pheno before the muscle pain started? I had terrible muscle pain and spasms (among other nasty stuff like itching, nausea... can't remember much else - but I'd rather have the brain fog than the pain) from an allergic reaction to tegretol. Had a hard time getting my epi to believe the reaction was to the tegretol, even though the pharmacist agreed. I'm on Dilantin again and have been for most of 13+ years. I do notice a little brain fog, moreso when I haven't had enough sleep, but nothing unmanageable. I'm fighting headaches and depression on elavil (TCA) and the headaches seem to be under control. A couple years ago (maybe more) I posted a question asking if Dilantin weakened the immune system - as it takes me sooo long to get over coughs from a cold, but now am maybe thinking it's allergy or possibly asthma related. Anyway, back to the pain, when I had the tegretol pain it was like a constant cramp in both my legs like a charly horse, and also pain in my back. It was constant, couldn't sleep and was basically useless to anyone. Good luck, Lainie > > I'm supposedly in a minority 2-3% that Phenobarbital causes muscle pains in. I > > could kick myself for not asking him (we were running out of time and I have [quoted text clipped - 6 lines] > to jump in on this one. How long were you on pheno before the muscle > pain started? That's a bit unclear as I log my meds & I started pheno in Nov 2002, but didn't log my muscle pains until more recently. The pains could possibly have started as the pheno was ramped up to a large enough dose to control my Complex Partials, but I really don't know for sure. > I had terrible muscle pain and spasms (among other nasty > stuff like itching, nausea... can't remember much else - but I'd > rather have the brain fog than the pain) from an allergic reaction to > tegretol. Had a hard time getting my epi to believe the reaction was > to the tegretol, even though the pharmacist agreed. eiyiyi! > I'm on Dilantin again and have been for most of 13+ years. I do notice > a little brain fog, moreso when I haven't had enough sleep, but [quoted text clipped - 5 lines] > coughs from a cold, but now am maybe thinking it's allergy or possibly > asthma related. I sure hope it doesn't cause me problems like that as I also have lung problems. > Anyway, back to the pain, when I had the tegretol pain it was like a > constant cramp in both my legs like a charly horse, and also pain in > my back. It was constant, couldn't sleep and was basically useless to > anyone. Mine is mainly the arms & legs & neck, although my back is bad today. Just a few months ago, I started to practice the piano again and it's totally out of the question now with my sore swollen hands. > Good luck, > Lainie Thanks for the input! Bob I haven't read the rest of this thread yet. Just because one person has had 'the gums problems too' doesn't mean the med. will react that way with others. We have had a few people who couldn't use Dilantin, but they were relatively small in number compared to others who were able to use it. Another thread I posted on, my Dr. put me on Dilantin (monotherapy) first, and it didn't work by itself for TLE-- wrt. giving reliable seizure control. He told me that it's usually used First since it has the *least side effects for those who it works for, and is older so longer studied and the research costs, so Pharmacy costs, are lower. I assume you're using Tegretol CR or XR for Temporal Lobe seizures, and I wondered if the Dr. had considered lowering the Tegretol (like mine did) and adding Frisium (Clobazam) with the Tegretol? (I don't remember (now) why he moved you off the Tegretol to Keppra (below) -- but I seem to remember someone saying (about 1999 ! ) that once you move Off Tegretol and some other meds (like keppra?) that you can't go back On to it at a later time?? That might not be correct, but it seemed to me someone had changed OR had a reaction to the Tegretol so wasn't able to go back to it.) IF you are having Some control (more control) with Keppra, than with Tegretol, then maybe he can add a Second med. to it to give better control... I wouldn't have thought it would have been Dilantin, but then I'm not a Doctor. It just seemed strange to throw on a 70-year olde pill rather than some Other newer med. that might be approved for combination with Keppra or (like my case--) Tegretol. Frisium is intended as Adjunctive therapy to be used with another Anti Ep. Drug, but I've never seen anyone here, yet, using it with Keppra. Most of us who have seizures starting in one of the Temporal Lobes have memory problems. That's not usually the fault of the pills involved, but the result of the damage or storms in those areas, affecting Memory Functioning. I mentioned on another (older) thread, that's likely expired on most readers, that my Right Temporal Lobe Damage on MRIs prompted my Neuro to suggest to me that *2-3 seizures per month might be a Hoped-for target (in 1993). With above combination of Tegretol CR (Mornings) and Frisium = Clobazam (AM and night), the last 2 C.P. seizures I had were Dec. 97 and June 98. I can't speak for Keppra, but both Dilantin and Tegretol are affected by Alcohol, and upset stomach remedies available at Pharmacies. Tegretol is also compromised by Grapefruit Juice-- I don't know if any of the other AEDs are. G. (***s below just mark spots I refer to in comments above.) / > > Yes I had the gum problems. I had memory problems as well. ************************************************* > That's the sort of feedback I need. I may find out that it effects everyone > this way or maybe not. People are different. ************************************* > > One side effect > > I didnt have was the abnormal hair growth, at least on my head. That was [quoted text clipped - 26 lines] > Yeah. It's trial & error. > Bob > but I seem to > remember someone saying (about 1999 ! ) that once you move Off > Tegretol and some other meds (like keppra?) that you can't go back On > to it at a later time?? I sorta remember that. BTW Im on both Tegretol (or the generic for it now) and Keppra. Tegretol is the primary, and keeps the major stuff from happening. But it never completely stopped the partials. That said it was good enough and better than the alternative. Keppra is supposed to deal with the partials, but its pretty hit and miss. > > but I seem to > > remember someone saying (about 1999 ! ) that once you move Off [quoted text clipped - 8 lines] > than the alternative. Keppra is supposed to deal with the partials, but its > pretty hit and miss. Is the Tegretol that you use (above) one of the Timed Release ones? Tegretol XR, CR, or Retard (in uk) ? That type you can take 1 or 2x a day, and it keeps a more stable blood level all day than just the 'straight tegretol' ? Even if it's a Generic Tegretol (Carbamazepine), there should be a timed release one available. If you're Not, that might be all you need to do to keep a level in your blood as a therapeutic level all day (and night). With the timed release version, you can take the Pill plus or minus 2-4 hours from the due time, once you're at a stable blood level, so even if you take it earlier or later in the Morning some days, the level stays stable. We also had a discussion (about that long ago too), on opinions of using a Generic versus the 'real' pill for seizure control. Some people were able to use the generics without problems, while others -- depending on the patient and the pill, had to use the Patented version to get better control. G./ > We also had a discussion (about that long ago too), on opinions of > using > a Generic versus the 'real' pill for seizure control. Some people > were able to use the generics without problems, while others -- > depending on the patient and the pill, had to use the Patented > version to get better control. G./ Ive thought about that. But Im seeing a new neuro in a few weeks and I will bring that up. I dont take the long release type. But I do space the doses around 12 hrs apart for both. > I haven't read the rest of this thread yet. Just because one person has > had 'the gums problems too' doesn't mean the med. will react that way with > others. That's why I hope that more than 2 people will respond. :-) I'd like to get a larger sampling before making my decision. > We have had a few people who couldn't use Dilantin, but they were > relatively small in number compared to others who were able to use it. For that matter, I/We don't know if it will control my seizures (come to think of it). > Another thread I posted on, my Dr. put me on Dilantin (monotherapy) > first, and it didn't work by itself for TLE-- wrt. giving reliable seizure > control. He told me that it's usually used First since it has the *least > side effects for those who it works for, and is older so longer studied and > the research costs, so Pharmacy costs, are lower. It's over 70 years old! > I assume you're using Tegretol CR or XR for Temporal Lobe seizures, At this point, I'll wait for you to read the rest of the thread because those aren't my current meds. > <snip> > Most of us who have seizures starting in one of the Temporal Lobes have > memory problems. That's not usually the fault of the pills involved, but the > result of the damage or storms in those areas, affecting Memory > Functioning. Whatever is causing it, I have a very poor short-term memory. I can however remember some rather old events and scenes rather well. Very selective memory damage!. > I mentioned on another (older) thread, that's likely expired on most > readers, that my Right Temporal Lobe Damage on MRIs prompted my Neuro to [quoted text clipped - 5 lines] > I can't speak for Keppra, but both Dilantin and Tegretol are affected by > Alcohol, The only warning I've ever seen is for excessive drowsiness. I could use that. :-) > and upset stomach remedies available at Pharmacies. Tegretol is > also compromised by Grapefruit Juice-- Right! Bob > > I haven't read the rest of this thread yet. Just because one person has > > had 'the gums problems too' doesn't mean the med. will react that way with [quoted text clipped - 31 lines] > remember some rather old events and scenes rather well. Very selective memory > damage!. You've probably seen the efa stuff and other sites. The Temporal Lobes are the short term memory (learning) buffers of the brain. So long as there's erratic storms there it messes with out minds. If you haven't had someone do tests before, ask someone to give you 5 'numbers' and try Verbalize them Back to them in Backward order !! :-< That's the one that really messed up my test results. Even as some of my Forward short term memory seemed to improve as I had less seizures and less disruptions, those tests still stood out. (That was from some permanent damage I have. All the medications do is 'level out' the peaks and valleys of that type of recall. The pills stop the seizures, but the Recall has been Real slow recovering -- since early 1980s to about 1994/5. I think the computer is exercising some of that without me being aware it's doing it, and I think the reduction in Auras and Seizures has cut the 'Stress to Remember' , so with less fear of a possible seizure, less auras, or fear of failure to recall something, once I was controlled, some of the 'lost memory stuff' started to improve. / > > I can't speak for Keppra, but both Dilantin and Tegretol are affected by > > Alcohol, > > The only warning I've ever seen is for excessive drowsiness. I could use that. > :-) *G* I wonder how I can send you some of mine (drowsiness)-- although mine might be Age... I can be listening to a Radio show around 7PM, and wake up at 9 when the 'tune' signalling the News comes on. I used to think those were absences, but I think they're really just age.. :-< *Or, since my Tegretol is the Timed release type, I don't know how long it takes before the Morning dose (the only time each day I take it now), gets to where it starts flowing into the Bloodstream. I don't seem to be 'punchy' or tired during the Day, although Tegretol used to seem to work that way in 1995/6. And I really don't know what the Clobazam (Frisium) does, but it's an adjunctive pill, and once we adjusted some of it up and part of Tegretol down back then, my Auras dropped (first) then the seizures, so it must be doing Something together with the Tegretol. That's why I was hoping the Tegretol CR or ?? might work with a second pill for you. But I don't know if it's one of the pills that, once you stop taking it (if you did before), if it's not as responsive the second time. I don't remember where I saw that, probably here 3 or 4 years ago. The thing I like with the Tegretol and Frisium is both are solid tablets that can be snapped in half to make part doses. That's why I wondered if a half pill in AM of the Dilantin (I think it's solid too?) but a 1.5 pill at Night, might give you the same Blood Level of Med. but reduce any Night time seizures. That Might help reduce daytime drowziness too, so long as it still controlled your seizures then. But then we'd be Self-medicating.... something it sounds like you're doing already anyway.. G./ > > and upset stomach remedies available at Pharmacies. Tegretol is > > also compromised by Grapefruit Juice-- > > Right! > Bob "gaross" <gaross@rogers.com> wrote in news:GEZPc.1416019$Ar.887113 @twister01.bloor.is.net.cable.rogers.com: > Dilantin (I think it's solid too?) it was a capsule last time I took it. this is going off topic a bit, but Im curious about peoples experiences with partials and physical activity. can they be related at all? im wondering if a change in blood flow can trigger one. > this is going off topic a bit, but Im curious about peoples experiences > with partials and physical activity. can they be related at all? im > wondering if a change in blood flow can trigger one. That does happen to me. If I've been sitting for a while, getting up and moving quickly will often trigger minor "feelings" of a Simple Partial. There does seem to be some connecction. Bob Bob <spsandlostinthe@invalid.net> wrote in news:4110E694.8C61BF93 @invalid.net: >> this is going off topic a bit, but Im curious about peoples experiences >> with partials and physical activity. can they be related at all? im [quoted text clipped - 5 lines] > > Bob another thing to ask about at my appt. hmmm > Bob <spsandlostinthe@invalid.net> wrote in news:4110E694.8C61BF93 > @invalid.net: [quoted text clipped - 10 lines] > > another thing to ask about at my appt. hmmm Physical activity can be an instant trigger for simple partials as can exhaustion. I deal with this constantly, so my neurologist advises me to limit how much I can exercise. I can jog just a little way until I get out of breath and instantly feel it. I have problems with hypoglycemia (low blood sugar) and it instantly gives me simple partials when it occurs. Eric > > Bob <spsandlostinthe@invalid.net> wrote in news:4110E694.8C61BF93 > > @invalid.net: [quoted text clipped - 17 lines] > partials when it occurs. > Eric Physical Activity or 'stress' can also increase your heart rate and metabolism, so change both the rate you absorb oxygen and the rate your body metabolizes food, pills you use, and sugars. I don't know why ( if I had to make a choice) one or the other is worse, but both Physical Stress and Drop in Blood Sugars, can contribute to lowering the seizure thresholds of some types of seizures. Usually if someone gradually increases their level of physical activity, you might be able to exercise more without as much chance of it triggering a seizure. Some of those limits might depend on your particular case, medications being used, and possibly if your Doctor has any suggestions of what your threshold might be. G./ > > Physical activity can be an instant trigger for simple partials as can > > exhaustion. I deal with this constantly, so my neurologist advises me [quoted text clipped - 15 lines] > medications being used, and possibly if your Doctor has any suggestions of > what your threshold might be. G./ I dont exactly exercise alot. But I need to get my weight back down again to a reasonable level. I dont think Ive ever had low blood sugar either... maybe high a couple times. I try to be good with sweets as well. I stay away from candy bars but I will loudly profess my fondness for chocolate now and then. Another subject to add to my list to ask about. ;o) > > > Physical activity can be an instant trigger for simple partials as can > > > exhaustion. I deal with this constantly, so my neurologist advises me [quoted text clipped - 21 lines] > candy bars but I will loudly profess my fondness for chocolate now and then. > Another subject to add to my list to ask about. ;o) Hey, if Chocolate were meant to be used in Moderation, you wouldn't be able to get those '4 kilo' Bars, would you? :-> What I was looking for above and on another post to that new Lady on our group, is that sometimes we might have changed something in our e.g. exercise rate, diet, we might have a Cold, or be taking some Over the Counter medications (most of us avoid), without realizing that one of Those might be contributing to our feeling differently OR to some medications we use not holding our seizures under control. My Pharmacist told me that some 'cold medications' might use a small amount of e.g. Alcohol or other filler that might help the cold med. work but might conflict with an Anti ep. Medication (AED). We might not think those would be things to look at for possible causes. If you're up to date on all that sort of stuff, then those are possible causes we can discard. I just thought if some of those might be things that are easy to fix (if a cold is past now), then some of the symptoms you or others on this thread have described, might be something that won't recur so might not trigger new seizures again. Several of the AEDs can be deactivated by e.g. upset stomach remedies or alcohol. Tegretol (for one) can get its levels messed up by Grapefruit Juice (one of the acids that aren't in other citrus juices can mess up one of the chemical balances). Lots of 'little things' like that can cause a problem but might not be thought of as a cause, since many of the pills are absorbed 1-3 hours after we take them. So something we took earlier in the day or ahead of a dose, might be the culprit when we think it's the Pill or how we're using it. While we're at it, did you get a Printout from your Pharmacist (there were 2 of you? on this thread at least) when a new prescription was filled, telling when to take pills, what to avoid etc.? If you didn't, there's a couple of Medications Glossaries around that have printable topics. I think there's one under the Ep. Foundation of America site http://efa.org . Under that there's a Medications Glossary, then you can enter the Pill Name or scroll through an Index? That site is either set out in page format (printable) or there's a 'printable format' icon on the page so it reformats it for you to be able to just click on File and Print, to get a hardcopy. I think that one takes several pill formats--some others, you either need the Prescription name or the Generic name (e.g. Tegretol is Carbamazepine -- both names would be on your prescription bottle). G./ In article <vndSc.1621642$Ar.1559234 @twister01.bloor.is.net.cable.rogers.com>, gaross@rogers.com says... > > > > Physical activity can be an instant trigger for simple partials as can > > > > exhaustion. I deal with this constantly, so my neurologist advises me [quoted text clipped - 20 lines] > of > > > what your threshold might be. G./ <snip> I exercise a lot; aerobics only, no weights. My record was a 7.5 minute mile when I ran. But even incline "walking" (4.5+ mph) on a treadmill at 15 degrees, my record is 1,000 calories in under 42 minutes. (Yes, I also went through 4 liters of water.) I've never pulled szs. while working out, but used to get them right before I started. It's as if the whole gestalt of my experiences of the next hour would "load" at once; deja-vu. My resting pulse is 60, and my working pulse is in the 130's to low 140's. Sometimes I'd go for an hour and half on a treadmill burning at leat 20 calories/minute then swim a half to 3/4 of a mile to relax afterwards. Maybe the sz threshold has to do with your level of conditioning. I admit I love the exercise high I get. I have an mp3 player and can run forever at 6.0 or 6.6 mph. After 2 or 3 minutes you don't even feel your feet hitting the ground anymore. Yes, my docs also told me to avoid getting overstimulated, but they weren't runners. Doctors/residents/nurses who run will understand. I had a sz once and they ended up finding a PFO (patent foramen ovale); a heart defect, when they were doing follow-up. I ended up running one summer with the cardiologists from the practice that plugged the PFO. Yes, they knew my sz history. Yes, my neuro knew the distance I covered. I have had both grand mals and complex partials immediately following intense physical exertion. > "gaross" <gaross@rogers.com> wrote in news:GEZPc.1416019$Ar.887113 > @twister01.bloor.is.net.cable.rogers.com: [quoted text clipped - 6 lines] > with partials and physical activity. can they be related at all? im > wondering if a change in blood flow can trigger one. But not during? > I have had both grand mals and complex partials immediately following > intense physical exertion. [quoted text clipped - 9 lines] > > with partials and physical activity. can they be related at all? im > > wondering if a change in blood flow can trigger one. It's never happened during (yet). Similar to the way I tend to get seizures from severe emotional stress, AFTER the stress is over. It's like there's some protective mechanism that stops them happening until it's "safe"... does that make any sense? > But not during? > [quoted text clipped - 11 lines] > > > with partials and physical activity. can they be related at all? im > > > wondering if a change in blood flow can trigger one. Sorry I haven't been following this group religiously and my server has expired some of the posts in this thread, but I can contribute a few points: 1) To whoever it was who experiences mild partial-like feelings on sudden movement, standing up, etc: Get your blood pressure checked. 2) Theo, are you the person who both a) loses speech and comprehension during seizures and b) finds exercise a trigger for these? If so, although everyone's different, it sounds very similar to the left TLE I had. I eventually had to give up marathon running because of it, after which it went away. Glucose, breathing, heart-monitor, etc tests showed nothing. Adrenaline, noradrenaline and catecholamine levels went v.wobbly before, during and after exercise. Dig in Google and you may find an explanation as some of these work as neurotransmitters as well as stimulatory hormones. Although running and rowing machines were OUT, road cycling was OK (no output monitor to pressurise you), followed surprisingly by swimming (not crawl). How vigorous does your exercise have to be to trigger? I now regularly spend a few hours swimming out to the deep water anchorage rigs (v.irresponsible for an ex-epileptic, but I refused to waste my life watching the telly in safety). But even if you go to a pool and inform the lifeguard they have far too much to do and can't watch you non-stop. I hate the hypochlorite anyway and prefer the occasional patch of diesel in the open seas (YUK!). Hey! - maybe diesel is the magic control med :) I missed what you were on - eventually they controlled me with Teg and clobazam (and diesel), and I gradually tapered them to nothing, so I'm med-free and seizure-free, but I haven't started marathons again. Yet.  SignatureMalcolm > 2) Theo, are you the person who both a) loses speech and comprehension > during seizures and b) finds exercise a trigger for these? If so, > although everyone's different, it sounds very similar to the left TLE I > had. I eventually had to give up marathon running because of it, after > which it went away. Yes to A, I dont know to B. Im not a big exerciser but I have had partials sometimes during walks up/down hills (lots of those here so unavoidable) or when working in the yard. But it also might have been the sunlight. I cant say either way because its not predictable. I also just went clothes shopping and having to go up another pants size (aghhh!!!) tells me I need to get more exercise. If I knew certain kinds of exercise act as triggers for me, I will know to avoid them. It seems running does it for some, but not for others. I guess I will have to do what doctors do with the meds, and treat myself as a guneapig and see what happens. Thanks ;o) But no gum problems? or other problems? My daughter had awful gum problems, but it really was the only one that really seemed to help her. > But no gum problems? or other problems? His response in the next message was: "Yes I had the gum problems. I had memory problems as well. " > My daughter had awful gum problems, but it really was the only one that really > seemed to help her. It looks like 100% have gum problems with Dilantin. I have trouble with my gums as it is, so I'm not looking forward to that part of the experience, but I filled the prescription today. Now it's just a matter of working up the courage to start taking it. Sure hope it works for me! Bob > > But no gum problems? or other problems? > [quoted text clipped - 9 lines] > taking it. Sure hope it works for me! > Bob Better make that 96%. I had regular blood tests while I used Dilantin, but changed to Tegretol within 18 months as Dilantin didn't control my Complex Partial seizures. I had no Gum or Dental problems while I was using Dilantin. G./ > I had regular blood tests while I used Dilantin, but > changed to Tegretol within 18 months as Dilantin didn't control my Complex > Partial seizures. You could have gone all day without saying that. > I had no Gum or Dental problems while I was using > Dilantin. G./ That's good news! Bob The purpose of the post was to suggest that '100% of people etc... experience... ' the stated problems with Dilantin, was not a Statistically accurate representation (post further up this message thread) --I don't even remember who did the post back then.. Just because Howdy is away, I thought that might be a misleading statistic. 100% have those complications with Dilantin is a tad more Precise than 40% or 85% of people using this will develop this symptom.... WHEN **100% of people using it will develop it, there are NO people left who Won't develop it. I (for one) didn't develop it, so that means the 100% figure was Incorrect. I'm not going to have to develop a NEW Glyph and Certificate to put those there am I, when '[Next Message' is only a Mouseclick away? G./ > > I had regular blood tests while I used Dilantin, but > > changed to Tegretol within 18 months as Dilantin didn't control my Complex > > Partial seizures. > > You could have gone all day without saying that. > > I had no Gum or Dental problems while I was using ******************************************** > > Dilantin. G./ > > That's good news! > Bob > The purpose of the post was to suggest that '100% of people etc... > experience... ' the stated problems with Dilantin, was not a > Statistically accurate representation (post further up this message > thread) --I don't even remember who did the post back then.. There is an obvious misunderstanding! Perhaps it is because you top-post and thought I was also responding to what followed what I was saying? or something?? > Just because Howdy is away, I thought that might be a misleading > statistic. 100% have those complications with Dilantin is a tad more > Precise than 40% or 85% of people using this will develop this symptom.... > WHEN **100% of people using it will develop it, there are NO people left who > Won't develop it. I (for one) didn't develop it, so that means the 100% > figure was Incorrect. I agree that 100% turned out to be incorrect and my response below that you underlined with *** was That's good news! ************** i.e. "good news" that it is NOT 100%. > I'm not going to have to develop a NEW Glyph and Certificate to put > those there am I, when '[Next Message' is only a Mouseclick away? G./ The part that I was unhappy to see was when you said "Dilantin didn't control my Complex Partial seizures" and I used a fairly common expression that I thought you'd be familiar with. I'm hoping that it will control mine. Bob > > > I had regular blood tests while I used Dilantin, but > > > changed to Tegretol within 18 months as Dilantin didn't control my [quoted text clipped - 9 lines] > > That's good news! > > Bob > > The purpose of the post was to suggest that '100% of people etc... > > experience... ' the stated problems with Dilantin, was not a [quoted text clipped - 21 lines] > you'd be familiar with. I'm hoping that it will control mine. > Bob **G* The strange thing with something like Dilantin, is there **might be Lots of people getting control with it, but who don't read or post here. I think Lisa Dapper Butts (the Musician), who used to post here, was using Dilantin to control her seizures in 1998-2000 period and for a long time ahead of that? Since she and many others were getting full? control with it, they (also) might not show up on a survey like above, done at a random time on this group, so the statistics might get skewed. As I posted a few other times, my Neuro told me that Dilantin is often used *first for Complex Partial (and other?) seizures, since it's been studied longer (70 years?) and for those who can get control with it, Research Costs have been recoverd so it's about 1/3 the cost of newer meds. Many of us (around here) might not have had full control with it. Even if a 2nd med. were needed, it can be added (if the Dr. decides) to a base level of Dilantin depending where the szrs. are still coming from. I thought Dilantin was a more General Med. for a variety of parts of the brain. So if, e.g. Tegretol or other pills are added that target a particular area of the brain, the Dilantin might be slowly removed so it doesn't conflict with the other pill. Then if the newer tablet doesn't give full control (my Tegretol didn't after ~2 years), another supplemental tablet might be added with the Newer one. Those then might be more expensive, but give more targeted (better) control. Mine did. G./ > > > > I had regular blood tests while I used Dilantin, but > > > > changed to Tegretol within 18 months as Dilantin didn't control my Complex > > > > Partial seizures. > > > [quoted text clipped - 6 lines] > > > That's good news! > > > Bob > The strange thing with something like Dilantin, is there **might be > Lots of people getting control with it, but who don't read or post here. I [quoted text clipped - 3 lines] > it, they (also) might not show up on a survey like above, done at a random > time on this group, so the statistics might get skewed. It's just that I sort of shudder at the thought that Dilantin might not control MY seizures and that's always a real possibility no matter how many other people there are that it helps. > As I posted a few other times, my Neuro told me that Dilantin is often > used *first for Complex Partial (and other?) seizures, since it's been > studied longer (70 years?) and for those who can get control with it, It's about a 70+ year old drug, although the Phenobarbital I'm on now is even older. > Research Costs have been recoverd so it's about 1/3 the cost of newer meds. The prescription for #120 100mg capsules that I just filled cost US$17.73. which is what I have to pay after my insurance paid 1/2 (an equal amount to my payment). That is a *lot less* than what my Neurontin costs me. > Many of us (around here) might not have had full control with it. Even if > a 2nd med. were needed, it can be added (if the Dr. decides) to a base level [quoted text clipped - 5 lines] > Tegretol didn't after ~2 years), another supplemental tablet might be added > with the Newer one. I've already been tried on Tegretol and it didn't help me. Others that don't help are Keppra, Lamictal, Primidone, and Phenobarbital now with the night pains. I honestly think though that I'm like you were in having seizures at night that cause the pain. Perhaps Dilantin will stop me from having seizures in my sleep. > Those then might be more expensive, but give more targeted (better) > control. Mine did. I'd pay just about anything if I was given something that would stop this all. Bob Just to repeat and emphasize the point for you GR, there was absolutely no offense intended nor contained in my response to you. At the point that I made my 100% statement, the responses at that point in time had been 100% gum problems. Then you & another person reduced that % to less than 100% after my post. Additionally, I used a colloquial expression that goes: "you could have gone all day without . . . " which is always used in a humorous sense.and is the way that I intended. I should be more careful about what I assume people will understand and I should not use that sort of joking colloquialisms unless I am certain the other party is familiar with it. I apologize for that. Bob Bob. I am on both Dilantin and Keppra - Dilantin a few months before the Keppra. From what I can remember, Dilantin didn't have that many side effects. Brain fog, been tired more, gum problems, and a few little concentration problems are the only things I can remember. I hope this helps! ---Dawn > Bob. > [quoted text clipped - 5 lines] > > ---Dawn Thanks for the feedback, Dawn. :-) Bob > To all Dilantin users. > [quoted text clipped - 13 lines] > > Bob I take 700 mg daily. The only side effect so far has been overgrown gums. Twice I've had surgery to remove the excess gum tissue. I was not very good at taking care of my gums back then. I guess brushing the gums helps prevent that. Otherwise, no problems at all with Dilantin. Have been on Dilantin for over 14 years. Barb > > To all Dilantin users. > > [quoted text clipped - 16 lines] > I take 700 mg daily. The only side effect so far has been overgrown > gums. Twice I've had surgery to remove the excess gum tissue. I had that same surgery a number of years ago and am familiar with it. > I was not > very good at taking care of my gums back then. I guess brushing the gums > helps prevent that. Otherwise, no problems at all with Dilantin. Have > been on Dilantin for over 14 years. Thanks for the feedback. I've always thought that your E symptoms were similar to mine, so maybe it will work for me too. Bob > > > To all Dilantin users. > > > [quoted text clipped - 18 lines] > > I had that same surgery a number of years ago and am familiar with it. > > I was not > > very good at taking care of my gums back then. I guess brushing the gums [quoted text clipped - 3 lines] > Thanks for the feedback. I've always thought that your E symptoms were > similar to mine, so maybe it will work for me too. I'm going to have to watch/read your posts more carefully then because maybe I can learn something from you. Cheers, Barb > Bob Oh, I should have added a couple of things. I think Dilantin has to be fiddled with more as far as finding the right dose (and that might take time). But in a way, that's a good point because the dose can be finely tuned to each person's needs. The other thing I like about Dilantin is you are not tied down to taking it at precisely the same time every day because it seems to last longer in the body. There have been a few times though (when I was sick) that I had to split the dose to get more even coverage, but it's easy to do with the capsules. If I'm healthy and feeling okay, I don't have to split doses or increase them or worry about being late taking the Dilantin. To me, that's a big plus. There have been a few times when I was sick and ran an elevated temperature for some time, which my brain doesn't like, but at least I can increase the dose slightly (doctor's recommendation) to get me through that time. Don't need to cut any pills either (My Dilantin comes in 100 mg capsules. I take 700 mg daily and up it to 800 mg if I get sick). The only thing I don't like about Dilantin is that the capsules themselves can be kind of sticky when you try to swallow them. The solution for that is to drink a little water (or other beverage) before downing the capsules and also swish the capsules around in your mouth with water before swallowing. That solves the problem. I guess the main point with Dilantin though is that it works great for some people. Barb > > > > To all Dilantin users. > > > > [quoted text clipped - 35 lines] > > > Bob > Oh, I should have added a couple of things. Thanks much for the additional info. > The other thing I like about Dilantin is you are not tied down to taking it at > precisely the same time every day because it seems to last longer in the body. "The plasma half-life in man after oral administration of phenytoin averages 22 hours, with a range of 7 to 42 hours." That's a lengthy half-life as you say, although not as long as Phenobarbital. It's much longer than my Neurontin which is only 7-8 hrs and requires that it be taken on a strict schedule. > I guess the main point with Dilantin though is that it works great for some > people. I haven't made a decision yet, but we'll see. The scariest part would be that it would not only not control my seizures (i.e. go back to having Complex Partials), not stop the pains, slurred speech etc etc. Many thanks for the added input! Bob I've been on 300mg/day of Dilantin for the last 16 years w/o gum or any other problems I know of. I *think* I have less energy than before but it's been too long to compare. The only part I worry about for long term use is calcium loss in the bones. I've seen a few posts about it increasing the chances of osteoporosis. I take calcium supplements to help counter this. > To all Dilantin users. > [quoted text clipped - 13 lines] > > Bob try this: http://groups.google.com/groups?q=osteoporosis+dilantin > I've been on 300mg/day of Dilantin for the last 16 years w/o gum or any > other problems I know of. I *think* I have less energy than before but [quoted text clipped - 20 lines] >> >> Bob > I've been on 300mg/day of Dilantin for the last 16 years w/o gum or any > other problems I know of. I *think* I have less energy than before but > it's been too long to compare. > The only part I worry about for long term use is calcium loss in the > bones. I've seen a few posts about it increasing the chances of > osteoporosis. I take calcium supplements to help counter this. Thanks. First person to report no gum problems! I eat enough ice cream & won't worry about calcium.<g> Bob > > To all Dilantin users. > > [quoted text clipped - 13 lines] > > > > Bob I was on Dilantin for about 30 years. The first neuro I went to just put me on phenobarb (I was 13 at the time) and a couple years later a new doctor was appalled that I wasn't on Dilantin. That was back in the 1960's when there really weren't that many medications. Anyway, I have taken Dilantin in several different combinations. Some in the "regular" capsule by itself, and once I took it in a combination pill with phenobarb (I think that's what it was; it's been so long I forget!). That was almost a problem because you couldn't regulate the amount of dosage of each, if one was too high or low. You just got what you got. Side effects weren't too terrible. I was drowsy, but it was better than phenobarb. What I did notice when I finally got off them all was it was like a veil was lifted and I could finally see the world. Having been on this stuff literally since I was a teenager, I had no idea how the world appeared without being on sedative drugs. I was able to give birth to 2 healthy children when I was on Dilantin, and nurse them. I did get drowsy enough that one doctor added Zarontin to counteract the drowsiness. I was also on that for years. I also had the gum problems. My dentist became very concerned because it reached a point where it was almost gingivitis. I did find out that the best way to counteract the gum problem is to make it a habit to take a small washcloth or towel and at least once a day, if not more, push your gums back. It won't cure the problem, but it will help you to keep your teeth. I am also photosensitive, so I have to be careful of that and wear sunglasses outside. I finally went off those meds when Felbatol came out, and I have been on that since 1994 - it is supposed to have terrible side effects, but the longer you are on Felbatol, the less likely you are to have the side effects, so I figure that I'm good. It's been 10 wonderful years of not being sedated. But try to find a doctor who will put you on it and you are going to have a hard time. It's a long story, but I am currently going to Johns Hopkins to see a neuro there. My other neuro refused to fill the prescription again. He didn't say that, but his actions showed me that. When it didn't get filled, I was in trouble. But like I said, it's a long story. Besides the meds named above, I've been on Tegretol, Lamictal for a short while, Topamax, Depakote, and there might have been something I forgot. 30 years is a long time to try to remember all the stuff. In general, it was just phenobarb, Dilantin, and Zarontin, and then Felbatol. The other meds were just to see if they could get me off the Felbatol or just tests to see if they worked. I still take a small amount of Topamax with the Felbatol, but I can't take it as monotherapy. I have never been suicidal in my life, but when I tried Topamax as monotherapy, I became suicidal. I never want to feel like that again. It was horrible. I hope the Dilantin works out for you, and I hope this has been helpful for you. JoAnne > To all Dilantin users. > [quoted text clipped - 13 lines] > > Bob > I finally went off those meds when Felbatol came out, and I have been on > that since 1994 - it is supposed to have terrible side effects, but the [quoted text clipped - 6 lines] > When it didn't get filled, I was in trouble. But like I said, it's a long > story. Is there something about Felbatol they didnt like? Ive never heard of it before. Ah, yes. It has some definite side effects. They tested it, but apparently not thoroughly enough. Fortunately for me, I went on it and then they found all the bad stuff. <g> It's generic name is Felbamate. It was found to cause aplastic anemia (bone marrow disease). It also killed someone from liver disease. That's when after the person died, and as I understand it, they took everyone off of it unless it was medically necessary or nothing else would stop the seizures. After each time they found something it had caused, they took me off of it and I had to go on something else. Both times, the meds they put me on made me so drowsy I was sleeping 22 out of 24 hours in the day. I told the doctor that I didn't care about the side effects. I would rather live a shorter life and at least be awake. I had to sign multiple forms to go back on it the second time and sign my life away saying I wasn't going to sue them, yada yada yada. Like I cared at that point. I wanted to be awake and have a life again. Who wants to be alive but sleeping all the time? This is not life. So anyway, then that doctor retired, I went to another one, who didn't like Felbatol, but tolerated it, although he continuously tried to get me off of it. I told him I was NOT going to sue him. I had already signed my life away, I didn't care if it shortened my life span (I can't say if it does or not - but that's my interpretation of the whole thing). He still tried to get me off of it. I finally gave in and said I would try another one if he was so insistent. I tried Lamictal as monotherapy but it caused a lump under my arm so he took me off of it right away and put me back on Felbatol. Later he took me off Felbatol again and put me on Topamax as monotherapy and it made me suicidal and he did not refill my prescription, although he said he did and blamed it on the nurse. Since I literally had no more medication, I had my first grand mal seizure in 24 years. I wasn't nice, to say the VERY least. I ended up going to Johns Hopkins University in Baltimore (I live in Pennsylvania, so it's a 2-hour drive for me, but well worth the trip) and got this fantastic neuro Dr. Ronald Lesser. According to his resume, he was actually one of the "Principle Site Investigators" for Wallace when Felbatol first came out. His resume is on the Internet if you are interested at http://www.neuro.jhmi.edu/profiles/lesser.html. He teaches at John Hopkins University, too, and I am pleased to have gotten so lucky to have found a doctor who is not afraid to use Felbatol. When everyone was taken off Felbatol, I understand I was one of about 1,000 people in the United States still on Felbatol, and as I understand it, the number is shrinking. When I have to go to the hospital, I have to take my own medications with me because they don't keep it in the hospital's pharmacy. (You know it breaks my heart not to be charged a huge price for one pill, right?) I think it's hilarious that the nurses come in and they have to watch me take my medication - like I'm not going to take it???? Right. Sure. I know the consequences much better than they do. But most doctors are afraid to use Felbatol because they are afraid that they will get sued if the patient develops liver disease or aplastic anemia. I think I'm very fortunate that I haven't so far. They say the longer you are on it, the less likely you are to develop the side effects, but I am always watchful. This is not to say you CAN'T develop them. I have to watch for easy bruising that won't go away (signs of aplastic anemia). I do bruise easily, but I always have. Maybe that's a side effect of all the meds. But my bruises go away. I haven't had to have blood tests in a long time, until recently, but that has to do with my cholesterol and things like that. My alkaline phosphatase had been high before I went on Felbatol, then it dropped. That's one reason they put me on Felbatol in the first place. It began rising again, and recently because of high triglycerides, I put myself on a very strict lowfat diet and my alkaline phosphatase has never been lower. I was amazed. My blood tests have never been better. I have copies of all blood tests since at least 1990. I am almost obsessive when it comes to keeping copies of test results, but that's just me. Hope that answers your questions. JoAnne > > I finally went off those meds when Felbatol came out, and I have been on > > that since 1994 - it is supposed to have terrible side effects, but the [quoted text clipped - 9 lines] > Is there something about Felbatol they didnt like? Ive never heard of it > before. > Hope that answers your questions. > JoAnne Yes. No wonder I never heard of it. Maybe in the future there will be something better for you. > I was on Dilantin for about 30 years. The first neuro I went to just put me > on phenobarb (I was 13 at the time) and a couple years later a new doctor [quoted text clipped - 46 lines] > I hope the Dilantin works out for you, and I hope this has been helpful for > you. Many thanks for the information, JoAnne! I also have had my condition since my teens and probably earlier. However, I was never properly diagnosed and sent to the right kind of doctor and it wasn't until more recent years that I have been treated for epilepsy. My "strange feelings" (partial seizures) were always either attributed to another medical condition or ignored. The meds I was prescribed weren't epilepsy meds. I have the Dilantin now and with your encouragement and that of others, I'll be starting to take it shortly. I'll be keeping my fingers crossed that it will control my seizures. Thanks again, Bob Bob, Good luck with it! It worked great for me for 30 years, like I said, and it wasn't until something newer came out that I changed. One thing I neglected to mention is that I had also had it in the hospital intravenously. I think at that point I was already on Felbatol, but I could still take Dilantin if I needed it (like in the hospital). I had been having surgery, and they gave me some via IV. It gets where it needs to go quickly that way, but I wouldn't recommend it unless it is necessary, though. I can still remember how it burns when you have to have it that way. Ouch! At least it worked. I guess they were worried I was going to have a seizure, or they would never have done it that way. Oh well.... I was properly diagnosed at 13, but my parents didn't want to do anything about it. I guess they were just hoping it would go away. When I got older, I went to doctors myself and took care of it myself. I'm sure you know this, but you have to forget about the stigma and be happy you're in as good shape as you are. There is always someone better off and there is always someone who is worse off than you. I am =very= fortunate that I have been able to live a relatively normal life, and I know how lucky I am. I hope everything works out for you. JoAnne > > I was on Dilantin for about 30 years. The first neuro I went to just put me > > on phenobarb (I was 13 at the time) and a couple years later a new doctor [quoted text clipped - 61 lines] > > Bob JoAnne - I had to take Dilantin intravenously in the hospital once. It didn't burn when they had me on it. It just felt like a regular IV. It didn't burn at all - I barely noticed I was on it unless I happened to look down at my arm. I had just got done having seven grand mals within sixteen hours, so I wasn't moving too much. I was dizzy and if I so much as tapped my fingers, it sent the room flying around in circles. Dawn, That's great! I'll have to remember that if I ever need that again. I can remember the nurse coming in and telling me "This might burn" and my thinking how weird that sounded. I suppose instead of intravenously as in they attach an intravenous bag or something like that, I should say they took a needle and gave me an intravenous shot of it. I wasn't very clear about that. I'm sorry. I have been trying to remember the last time I was in the hospital, and if I remember correctly, it was for kidney stones. Yuck. I was not a very good patient that time, because I was in extreme pain, so they probably just wanted to sedate me. ha ha ha I'm just kidding. But I understand about the room flying around in circles. It's a weird feeling, isn't it? Makes you wonder why people want to ride roller coasters and such. We get to do it for free. <g> JoAnne > JoAnne - I had to take Dilantin intravenously in the hospital once. It > didn't burn when they had me on it. It just felt like a regular IV. It > didn't burn at all - I barely noticed I was on it unless I happened to > look down at my arm. I had just got done having seven grand mals within > sixteen hours, so I wasn't moving too much. I was dizzy and if I so > much as tapped my fingers, it sent the room flying around in circles. Joanne wrote: >That's great! I'll have to remember that if I ever >need that again. I can remember the nurse >coming in and telling me "This might burn" and >my thinking how weird that sounded. Yeah, when I had an MRI, they put some kind of dye in my that did burn my arm. It also made it feel like something was boiling up in my mouth and like I was gonna throw up, but there was nothing there in reality. >I suppose instead of intravenously as in they >attach an intravenous bag or something like >that, I should say they took a needle and gave >me an intravenous shot of it. I wasn't very >clear about that. I'm sorry. Hey, it is ok. Between the side effects of my meds and some of my seizures, I have bad short term memory. I just can remember that day all too well. I don't think they gave me a shot of it - that may have made the difference. They hooked a bag up to me. >I have been trying to remember the last time I >was in the hospital, and if I remember >correctly, it was for kidney stones. Yuck. I was >not a very good patient that time, because I >was in extreme pain, so they probably just >wanted to sedate me. ha ha ha I'm just >kidding. I bet all patients who come in with that problem are not very nice patients. My brother just had to get one taken out and he just had to tell me how they do it on a guy. If he is telling the truth, I don't even want to mention it. >But I understand about the room flying around >in circles. It's a weird feeling, isn't it? The worst one in this world, in my opinion. I hate being dizzy and I tend to be some part of each day - have no idea why. I sure didn't like the room flying around in circles - I kept wishing it would stop. >Makes you wonder why people want to ride >roller coasters and such. We get to do it for >free. Yes, exactly. As I said above, I stay dizzy parts of the day randomly. Then I hear people who talk about how dizzy they got on a roller coaster - it makes you want to slap them. I bet they wouldn't like it if they got free dizziness randomly. > >Makes you wonder why people want to ride > >roller coasters and such. We get to do it for [quoted text clipped - 4 lines] > - it makes you want to slap them. I bet they wouldn't like it if they > got free dizziness randomly. Its been years since I was on a roller coaster, and I liked it. At least then I would get to actually enjoy being dizzy instead of feeling sad >Its been years since I was on a roller coaster, >and I liked it. At least then I would get to >actually enjoy being dizzy instead of feeling >sad Being sad sucks just like being depressed does. I really doubt you would like to have my dizziness - this morning I was dizzy and it felt like my brain was going around in circles. It tends to make you feel really sick and give you a bad headache. Trust me, you don't want it. > >Its been years since I was on a roller coaster, > >and I liked it. At least then I would get to [quoted text clipped - 5 lines] > like my brain was going around in circles. It tends to make you feel > really sick and give you a bad headache. Trust me, you don't want it. No I wouldnt want it that bad. The partials when I cant speak or understand anybody are bad enough tho ;o) >No I wouldn't want it that bad. The partials >when I cant speak or understand anybody are >bad enough tho ;o) The dizziness is killer - I have some on a daily basis though it gets a lot worse some days more than others. I tend to be a bit dizzy at least in spells every day and once or twice a week I have the major dizziness I talked about. I have simple partials too. Mine have ranged mostly into two groups. One is "falling" sensations - where I feel like someone has just pulled the chair, bed, etc. out from under me but then after ten seconds that I am still sitting/laying where ever I was. The second is where I am in a dazed state - best explanation where nothing seems like reality though it is. It feels like a dream and that I am not really in total control of my body - though I can walk and stuff. It takes me longer to concentrate and understand people, though on just a small few seconds delay. Plus, I have absence seizures, complex partials, and the occasional grand mal. It isn't much fun, but there are others out there worse off than me. I just don't understand rollercoasters any more - why the expensive thrill just to make you dizzy? When you get it every day, it isn't much fun - and I get mine for free and don't want it. (....) But I > understand about the room flying around in circles. It's a weird feeling, > isn't it? Makes you wonder why people want to ride roller coasters and such. > We get to do it for free. <g> > JoAnne It's not a feeling I would pay to get, in fact, I'd pay to prevent it.
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