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Medical Forum / Diseases and Disorders / Epilepsy / November 2006headaches and (phenytion)
does any one takeing (PHENYTION ) get headaches a lot ? just asking im not shore if it is phenytion doing it ?. before i found out i had epilepsy. i never got many headaches. but now that im on this meds? im geting more headaches well any input is greatfull thanks group ( hope every one had a great T DAY :) > does any one takeing (PHENYTION ) get headaches a lot ? just asking im > not shore if it is phenytion doing it ?. before i found out i had > epilepsy. i never got many headaches. but now that im on this meds? im > geting more headaches well any input is greatfull thanks group ( hope > every one had a great T DAY :) I haven't used Phenytoin (Dilantin) since 1993-5, but used to get headaches as part of my Temporal Lobe type seizures (listed now under Complex Partials on many sites). Which type of seizures did you have before they prescribed that? Maybe if you list it here (the szr. type), someone might have info. on their experiences wrt. that? (I didn't look back at the history file or I'd know if you had listed which type... :-< ) I did have some headaches after first onset (1993 to about 1995) that were like someone trying to blow up a balloon from the Inside-- not a fun experience, and very distracting if you were trying to either Read and remember things, or even function among others who didn't realize you were having the headaches. I had been told (by my Dr.) that Dilantin is often prescribed first, for my type, as it's longer studied, older and has less potential side effects for *those who can use it. It's also cheaper, as research costs are all paid-up. But I had to move on to stronger, more targeted meds. which finally got mine under control between 1995 and 97. I still use both (Tegretol CR and Frisium) but haven't had a szr. since mid. 1998. But we're each different, and the cause and *source of our szrs. are often different, unless we share similar types and seizure focus (where it appears to start from). Did you look at the Medication under the U.S. Ep. Foundation site to see if that's a possible side effect of the pill? EFA is at http://efa.org then go to Medications? and either type in Dilantin (or phenytoin <-note spelling) and Go or Search in search engine to get a printable page that might list potential side effects too. *I found my Pharmacist an excellent source of information (and websites) whenever I wondered if something I experienced was a side effect, minor irritant or something I should call my Dr. about. And she was easier to reach and ask than waiting for my next Dr. appointment (at the time). They have the manufacturer's scripts and can call them up online if you wanted to ask them locally. G./ thanks G i have grand mal. and i have complex partial . maby more im not shore its just what people tell me I recall I always had headaches. Got off dilantin for 2 years & the headaches vanished. Well, when I had to get back on dilantin a few months ago guess what returned. So I may have to go on topamax instead. thanks for the info > does any one takeing (PHENYTION ) get headaches a lot ? just asking im > not shore if it is phenytion doing it ?. before i found out i had > epilepsy. i never got many headaches. but now that im on this meds? im > geting more headaches well any input is greatfull thanks group ( hope > every one had a great T DAY :) Contrary to what others are reporting, I get no headaches that I can attribute to phenytoin. I can get a headache if I drink too much coffee, but it goes away if I ease off for awhile and I otherwise get no headaches at all. Current dose is 300 mg/day Dilantin Kapseals. thanks partials sorry spelling (phenytoin) im takeing 500mg a day im gong too ask my doc thanks > thanks partials sorry spelling (phenytoin) im taking 500mg a day im > going to ask my doc thanks The headaches you described should be told to your Doctor (as you said above), as that particular med. *might be affecting e.g. your blood pressure or other things that can produce headaches. They might adjust your dose of the Dilantin, or add a second pill to try reach a level that works for your type, but without the awful side effects of the headaches. I had those *both with Dilantin and at first with the Tegretol I moved to, but they ended thankfully, when we added a second pill with the Tegretol I use, as it was reduced a little. If your's are like the ones I had, they are Not comfortable to have, and the sooner you and the Dr. can find a combo that *works for you, *the better the chance of getting a seizure threshold for you that reduces risk of return of those things. *Many of us can react differently, both to pills (like our various experiences you've seen on Dilantin), but we can *also react to our own specific physical causes of the szrs. If you're having a physical reaction, it could be more about the specifics of your particular type of szr. and I'd suggest considering called the Dr. even if your appointment isn't for a no. of weeks. I had some awful "Inside Headaches" that were very painful, and when I finally called the Dr. he suggested (on the phone) a half pill adjustment on alternate days, and to call him if it didn't clear soon, and it *did within 36 hours. (Our monthly appointment wasn't due at that time for 2-3 weeks.) So *if you had a recent dose change, or even if you haven't, the Dr. can assess if you can still use that type of pill, at a slightly different rate, or need a change. (Dilantin is an Olde Pill, if it would work for you, so is cheaper by about 40-60% if you were able to still use it. *It's *not worth it though if you still are having Pain on Monday, and it's gone on for a number of days without stabilizing for you.) Keep us 'posted' too, on how you make out with this. Lots of people read here, even if they're too shy to post, and can benefit from ALL our experiences and successes. G./ > If you're having a physical reaction, it could be more about the > specifics of your particular type of szr. and I'd suggest considering > called the Dr. even if your appointment isn't for a no. of weeks. Hmm - I agree that really bad headaches could be due to our particular types of seizures, as I'm having one now from having falling & shattering against the front glass oven door yet again, and I had another couple of bad ones this morning! :-( I always thought it was simply routine though, that we all got them after our most seizures - other than the absences of course so it wasn't necessary to really waste a doctors time for something like a headache - he probably just prescribe you a dose of paracetamol and say goodbye anyway - wouldn't he? Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ i was thinking the same way too but i said im going too post and see if anyone had headaches that were bad Thanks G I've been having headaches on and off after starting phenytoin- ER- dilantin the doc raised my pills up from 300mg to 500 mg in September because I'm still having grand mal seizures and partials to. I had a bad grand mal a little over a week ago but came out of it somewhat. Then went to sleep over a day. My relatives told me.I'm going to call first thing in the morning and ask about the headaches. They get bad at times. I just take Tylenol for them. Dilantin is the only prescription drug that I take and I get ringing in my ears to. Just about drives you crazy lol no lie and now that the dose is higher. I find myself forgeting more like today. I was workng on my dads truck at the shop . I'm a Auto Technician (Auto Mechanic). I've been working on cars, trucks for over 25 years and I just got lost at what I was doing . I almost forgot to put oil put in the truck after a oil change was just about ready to start it up and it just hit me no oil. Thank God there. Thats not me I've never done things like that I'm very meticulous in my work. I will be calling my Doctor first thing in the morning. I just don't think that this medication is working properly for me. Thank You very much G for the information. > Thanks G I've been having headaches on and off after starting phenytoin- > ER- dilantin the doc raised my pills up from 300mg to 500 mg in [quoted text clipped - 14 lines] > don't think that this medication is working properly for me. Thank You > very much G for the information. I just thought that sometimes the symptoms might show up if there was a recent (2-3 weeks) dose change, but if it's a problem like your's that has continued beyond that, the Dr. might want to either suggest a second pill (with the Dilantin at same or lower level), or if there might be something else they'd want to try. Some people can use Dilantin without a problem, and it's cheaper as it's older and longer studied, so they'd also know if the symptoms should have carried on this long. If they had some other ideas of what to add or if changes might help, if they're not aware you're still having headaches or problems, they might assume (for now) that you're doing fine. The worst they can tell you is to try using it a little longer and stay with the Tylenol. But at least you'd know if you're doing the best you can expect at the current dosage. If you mention the memory stuff above (unless you have already), that might tell them if the dose is too high or not. *Also, many of us have the Memory problems, if the damage is coming from e.g. the Temporal Lobes, and those are often the source of Complex Partial szrs., and some others. I don't recall if there's a particular area in the Brain where Grand Mals originate or if those can originate in several places 'up there'. G./ no iv not talked to my doc about memory loss after the higher dose but i will the headaches are every day. just some are really painfull i will get to the botton of this thanks /G and group. for the help sorry i ask a lot of Q > no iv not talked to my doc about memory loss after the higher dose but > i will the headaches are every day. just some are really painfull > i will get to the botton of this thanks /G and group. for the help sorry > i ask a lot of Q Hey, if you didn't ask questions about stuff that concern you, we'd not really need this group here. Lots of people helped me when I was first diagnosed and had trouble (after Dilantin) with Tegretol and Frisium (for complex partials). I got 80% of help I needed from here, and about 20% from my Pharmacy if I asked about e.g. things to avoid with my 2 later pills. There's a large variety of experiences floating around, and usually *someone has either gone through what you're going through or can relate or give support while the worst of it clears up. If you wanted to ask e.g. the Pharmacist who prescribed the Dilantin, they might have links other than http://efa.org information that would show if what you're going through is to be expected in some cases. Otherwise that's why I suggested the Dr. if they didn't know you had or were still having headaches. *I had those when I started Tegretol before I was used to the dose, and they're *no fun. If you haven't looked at the U.S. Ep. Foundation glossary, that's what above link goes to. Somewhere in there is a Medications Link, where you either scroll down to Dilantin, or type the word in the search box, and click Go or Search by side. It gives you a 1-page writeup, with a 'printable format' button if you wanted a hardcopy to keep. (It was *there that I found that Grapefruit Juice, as well as Alcohol (I knew), would conflict with *Tegretol. My Pharmacy didn't even know about that one Juice and Tegretol problem-- since I took them the printout, it's been added to their Healthwatch page for other people buying Tegretol. G./ <snipped> > the doc raised my pills up from 300mg to 500 mg in > September because I'm still having grand mal seizures and partials to. Is it when he upped your dose that you started getting headaches? or have you had them since day one? It's been 2 years since I switched to Dilantin and. instead of starting me on 300 mg, he had me at 400 mg. That had me stumbling all over the place, seeing double, and walking into walls. My memory being what it is, I can't swear that I didn't have headaches at that time too. He cut me back to 300 after I called him. > I get ringing in my ears to. Just > about drives you crazy lol Mine is screaming loudly at me at the moment. It's only the right ear that does it and it's usually only first thing in the morning for awhile, but it's doing it also this evening. > no lie and now that the dose is higher. I > find myself forgeting more like today. I was workng on my dads truck at > the shop . I'm a Auto Technician (Auto Mechanic). I've been working on > cars, trucks for over 25 years and I just got lost at what I was doing . > I almost forgot to put oil put in the truck after a oil change was just > about ready to start it up and it just hit me no oil. Exactly the same and getting worse. Not just remembering things, but also absent mindedness like going to a room and forgetting why I went there. Earlier today I was shaving and went to brush my teeth afterwards. I picked up my razor instead of my toothbrush and was wetting it under the faucet and picked up the tube to put toothpaste on it before suddenly realizing my error. <LOL> > I just don't think that this medication is working properly for me. Thank You > very much G for the information. Some of its effects, just in terms of how it made me feel, have varied when given a large enough number of months. For whatever reason, I haven't recently felt the severe depression I used to feel. I also haven't feelt the days of feeling out-of-sorts. I don't know where to assign blame or credit. > <snipped> > [quoted text clipped - 14 lines] > it and it's usually only first thing in the morning for awhile, but it's doing > it also this evening. *** Some of the pills can lose concentration in the blood overnight. Until your last phrase about it doing it this evening (last night), I wondered if it was the night dose wearing off before dawn. (Some people posted here ~3 years ago about getting that too with either Generics, or in some cases they thought they had been given 'old pills', that were near the end of their Best Before dates.) I don't know if they make a Time Released version of Dilantin yet, or if the Dr. might want to e.g. add half a tablet on Alternate nights to keep it going all night for you. That sort of thing was done for a while on my Tegretol alone (I take 2 types now), but I don't recall in 1993-5 if I was able to break the Dilantin tabs that same way to get a half pill dose, like I did for a while on Tegretol. *I just found that the Dilantin seemed to give *me erratic control, before I found some stronger pills (Tegretol CR) made a Time Released version so I could vary the time it was due by plus or minus 3-4 hours without risking a seizure onset. G./ > > no lie and now that the dose is higher. I > > find myself forgeting more like today. I was workng on my dads truck at [quoted text clipped - 8 lines] > of my toothbrush and was wetting it under the faucet and picked up the tube to > put toothpaste on it before suddenly realizing my error. <LOL> *G* I don't know if this will help (if you're going to put toothpaste on it anyway.. :-< ) but my Dr. had me buy an Electric Shaver, since some of my early szrs. came on so rapidly he wanted me to drop the razor rather than risk injury from a blade. G./ > > I just don't think that this medication is working properly for me. Thank You > > very much G for the information. [quoted text clipped - 3 lines] > felt the severe depression I used to feel. I also haven't feelt the days of > feeling out-of-sorts. I don't know where to assign blame or credit. G. I'm glad. I *think some of these pills can take periods of weeks or longer to reach an ideal level since some of their ingredients are absorbed in either the Liver or Kidneys? so some hours after we take them. And if they get out of balance due to physical exertion, colds or flu, or other things that lower their therapeutic level, it can take a few days to get back Up of the level that is in balance. I had forgotten about the depression part too. I had a few periods of that both with the Dilantin and the Tegretol. But at the time I assumed it must be 'just me', since things seemed so far down at that time... Every direction looked like it was uphill. G./ The other comments are helpful... just thought I'd add something. When my dilantin level gets anywhere close to the upper end of normal I get terrible pressure headaches. It usually takes me a couple days to figure out the reason, as I get different types of headaches and my memory doesn't kick in so well after 13 years on dilantin, so you may want to have your level tested. For me, I need to stay at the low end of normal, or even a little below just to have a life. Also, I read somewhere that dilantin interferes with absorption of tylenol (as well as calcium), so for me tylenol is useless. Lainie >> <snipped> > [quoted text clipped - 11 lines] > Generics, or in some cases they thought they had been given 'old > pills', that were near the end of their Best Before dates.) That's an interesting thought, although phenytoin has a long half-life and the blood serum level doesn't go down rapidly. The ringing is common in the morning (screaming right now), but last evening's was unusual for that time of day and the dosings are all very approximately 8 hrs apart. It seems to usually go away with my daytime activities and food/drink consumption and return the following morning. > I don't know if they make a Time Released version of Dilantin yet, > or if the Dr. might want to e.g. add half a tablet on Alternate nights [quoted text clipped - 6 lines] > could vary the time it was due by plus or minus 3-4 hours without > risking a seizure onset. G./ That all has been a major hassle for me and left me with a low opinion of my doctor's medical competence. A couple 3 month appointment intervals after overdosing me on the initial 400 mg, he decided I was too low on the 10-20 scale they use and needed a little bit more. That was partially based on my reports of feeling out-of-sorts, not seizures, but just not feeling right. Now here is a guy who told me that he insists on Dilantin Kapseals (no generic substitution) because poor results can be obtained otherwise. So what does he do for the little bit extra? He prescribed _50 mg_ Infatabs that are different in the acid/salt category, when 30 mg Kapseals (the same as my 100 mg) are available. I've had those now for quite some time, but can't take one _every_ day, like he seems to think I should, without having undesireable results. >>> no lie and now that the dose is higher. I >>> find myself forgeting more like today. I was workng on my dads truck at [quoted text clipped - 10 lines] > *G* I don't know if this will help (if you're going to put toothpaste > on it anyway.. :-< ) Hey. It could have been the hairbrush. <LOL> :) > but my Dr. had me buy an Electric Shaver, since > some of my early szrs. came on so rapidly he wanted me to drop the > razor rather than risk injury from a blade. G./ If you had been using a straightedge razor and sharpening it with a razor strop, I can see the danger. I use a Gilette Atra which could do some minor damage, I suppose. The 2 electrics I have, battery & wall plug, get scant use as I've never been able to get a good close shave with them. >>> I just don't think that this medication is working properly for me. Thank You >>> very much G for the information. [quoted text clipped - 13 lines] > assumed it must be 'just me', since things seemed so far down at that > time... Every direction looked like it was uphill. G./ When I reported the depression to my doc, all he did was offer me a prescription for depression pills. :-( I turned that down as I don't care to add to the junk that's going into my body and the large number of reports of resulting suicides associated with those depression pills. thanks group i just got done reading all the posts i called my doc to day he was busy and they were going too call back but no word yet when i hear something i will let you know thanks everyone :) |
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