![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1483 to 1507 of 1838. Go back in thread:
Posted by headachequeen on March 15, 2005, at 18:24:32
In reply to Re: statis epilepticus, posted by proserpine on March 14, 2005, at 16:28:02
> new here, & confused by both the topomax & the board, so have not been able to read the posts in order, but i will say that not only have i found something -worse- than trigeminal neuralgia, but that both my mother & dostoyevsky had seizures (he -loved- his (if you do not know & if that is of any consolation. they never figured out what my mothers were (probably just a reaction to having to be anywhere near my father); tN is also some sort of seizure. i do not love it-- probably the same reaction, although my father hath croaked, finally)) & also i hope that, although i do not even know you, you are okay. oh for heavens sake. one more for the prayer list.
Well, I do not love my seizures; I do not even like them. I do know when I can expect frontal lobe caused seizures and when they will come from the temporal lobe... we are I guess on first name terms, but I still do not like them...
as for the statis episodes, there is no way to describe my feeling for them.
I am terrified when I read the casual approach some people take to these meds...
I know all too well what can happen when one does not deal with them properly...
a simple aspirin can increase the effect of tegretol, one of the anti-epileptic drugs...
and the effect it can have on the body is unbelievable...
fourteen hours, mostly unconscious, with no control over any of the muscles or nerves of one's body...
it is indescribable...
an antibiotic prescribed to deal with this wretched cellulitis that haunts my days and nights, and that no one bothered to really research as far as AEDs are concerned has the same effect ....
and away we go again...
today I spent my time struggling to fight my way out of saran wrap someone wrapped around my body...
frontal lobe seizure coming on tonight...
my poor besieged husband can tell just by the way I walk and speak, what to expect...
but, then we are still in recovery for lack of a better term...
on the good side, the lesions from the cellulitis are almost completely gone... just two left, one open and draining a little and one with duoderm still on it, but for protection of strengthening skin...
in a few days we should be back to normal and world, get ready, because I shall not sit quietly and wait for someone to find an answer, I am going out to do my thing with camera and dog and life...
if I sit quietly then I am letting the condition win and it has gained too many points already...
time for me to gain on it and get ahead of it...
of course, I have to be careful not to bump that hand on anything, and not to trip or stumble, and no playing with scissors or knives....
sharp things can cut and then we start all over again...
and spring is coming... those black flies, little black flies always the black flies no matter where I go...
and the mosquitoes... a simple bug bite and I have an infection and nurses and antibiotics...
at which time the only med I can take is Topomax...
now isn't that a hoot when it is the one so many people fear LOLno I do not love my seizures... but I love the times in between... and I plan to make the most of them...
putting sixty minutes into every second...
kat
Posted by proserpine on March 15, 2005, at 22:36:12
In reply to Re: topomax=living in outer space?? » proserpine, posted by headachequeen on March 14, 2005, at 23:12:49
thank you so much.
i can turn this into an almost funny story, & one about both taxes & suicide at that.
it does not, however, start out that way.
last year my exquisitely benevolent father croaked (in the dictionary definition of the word "exquisite"), after making absolutely certain i did not have -quite- enough money to live on forever. it wasnt -his- money anyway; it was my mother's, who earned it. he, otoh, earned enough to support his own self, then ran off w/ the housekeeper, no, insert the same NOT 'quite,' as he stayed around & they both lived in the house, holding hands, as my mother (the doctor) went thru her last bout of chemo, & i took care of her all the way thru the time we both lived, until the day she died, 5 weeks in the hospital (usc/norris). it was 12 years ago now, & i can still say: tired here.
tired here.
gratefully, he did croak, at long last, in december of 2003 & is now either -broiling- or gravel at the bottom of an aquarium, w/ hope one containing rather large fish-- or perhaps he is whatever lies at the bottom of the ocean, beneath everything, beneath us all. who knows. in the next life, if there is one, he has not gotten far.
i have said before & will note here: i inherited 2 things from my father & 2 only-- upper body strength & manic depression. i have used them both for a lot more good than he ever used his. until his flagrancy w/ the housekeeper the worst he ever meted out were beatings & plenty of these-- but that was the 70s & battery was not considered the way it is now. & my mother was a psychoanalyst, almost famous-- oh heavens, oh heavens.
i promised this would be funny, too. usually i get there. i can tell funny stories about my father (he painted the piano orange, he knew people deeply involved w/ the manson family), but i am just not in the mood. perhaps it is the taxes, perhaps it is the topomax, which, thank you so much for yr recommendation, i have cut down to 50 mgs.
i suppose i should now go into the reason i went into the reason for what amounts to such an endlessly long predicate (?) clause.
about 3 weeks ago, thinking i would actually not have to do my taxes (which i do not understand) this year, i decided i would instead eat 100 klonopin --i am fond of this particular vitamin k-- & not bother w/ any of it, or, really anything else.
i actually, & apparently quite sillily (which is not a word, but fits), thought eating this amount, along w/ a bunch of yoghurt drink was going to work. this is a warning to anyone else out there who has a horrible father, a horrible partner & nothing else in his or her (in my case) life that matters to them other than a tax headache; 1 glider; 3 parrots; 1 old & suddenly out of nowhere reappearing love of ones life who one doesnt know what to do about along w/ a variety of other guys, all frightening (ibid); 60 pairs of platform shoes; 4000 books; a book one is supposed to write but cant along w/ a website one is supposed to make in the same condition; awful neighbors (just the WORST); an apartment that one seems unable to clean; utter confusion; an entire dead family & many dead friends, i could go on but i wont--
100 klonopin WILL NOT KILL YOU. not even if you wash it down w/ yoghurt drink.
so i called my partner. he washed his hands of it. i mean, he wanted to surf the 'net or something. i dont know, watch tv. he has only known me 14 years. so he called some friends of mine. one took me to ihop & we had chocolate chip & banana pancakes after i fell down half the stairs whilst wearing a pink fake fur coat. i mean, i am an old Rock Chick. one must look presentable during an o.d.
old Rock Chick, old grad student. old lots of things. still terrified of doing the taxes (even though i am an Old Bookkeeper, but not for Old Investments. scary). VERY med resistant. have a list of old neurological illnesses not quite as long as anyones arm, but have made the merck manual (pseudo tumor cerebra, due to allergy to tetracycline).
at any rate, to shorten an even longer story-- my psychiatrist -gave- me an excess dose of topomax. he told me to take 50mg a day. i decided to double it. i should have looked it up. MY FAULT, MEA CULPA.
i had not understood that ANYone actually believed what i told him (or her) about being med resistant, or even that he (or she) had to look beyond the obvious w/ me (see the 4000 books & not just the 60 pairs of platform shoes).
it was ME that upped the dose too fast. i am used to doing that sort of thing-- i was chased out of a neurologists office as a junkie once only a little bit before being diagnosed w/ not only trigeminal neuralgia but near-death from an abscess by a dentist (of course), of all people, of all things.
so-- mea culpa. i can drive now. i no longer think i know everyone i see on the street (it was when i thought i saw my landlord in my therapist's parking lot that i realized (no, not that i was hallucinating or paranoid, strangely but) that topomax works by cutting down on the number of ones perceptions. say i have a billion sensory inputs coming in. instead it will give me a million, so peoples faces look more similar than they would ordinarily. i hope that makes sense. this was on an o.d. (mild) of topomax, & the end of one, but i am -certain- this is how it works & also how it changes ones sense of taste. anyhow).
i have cut back to 50mg-- & it was you all who convinced me, which gets me back to the ~ridiculously~ grateful part.
Posted by proserpine on March 15, 2005, at 22:48:17
In reply to Re: statis epilepticus » proserpine, posted by headachequeen on March 15, 2005, at 18:24:32
you have got to be the strongest person i have ever talked to, i think.
as wild as i sound, often it's -me-, but i have broken down lately, & i am not as strong as you. before my mother died it was my mother, who ran the psychiatric services for a wing in the adolescent ward at rancho los amigos hospital in the 60s (this would be for kids that were unable to leave the hospital. i have some stuff they made my mom)--
at any rate.
i am duly impressed, &, once again, -grateful-.
there is a red parrot to my right that will not be quiet, so i, myself, am at more of a loss for words than i normally am. it is exasperating, b/c i am more grateful for this post, in a way than even for the other, which has given me the ability to write both of these, by calming my med dose down to a reasonable level.
it's the fact that you still have some sort of strength coming thru loud & clear despite the weaknesses, a quality which my mother had, my grandfather had (both of these people worked like beasts & so did i, before they died, after too. they were also both constantly ill, me=ibid) & i have seem to have lost & must regain. i find some real help thru yr message & i thank you & wish you the very best. i know cellulitis is hell. i cannot remember who i know that had it. one of the above, probably. not me. i did have shingles, which led to the tn-- which has abated, largely, until i o.d.'d on the topomax (laughing)-- mea culpa, mea culpa--
Posted by headachequeen on March 16, 2005, at 11:00:29
In reply to Re: statis epilepticus, posted by proserpine on March 15, 2005, at 22:48:17
> you have got to be the strongest person i have ever talked to, i think.
>
> as wild as i sound, often it's -me-, but i have broken down lately, & i am not as strong as you. before my mother died it was my mother, who ran the psychiatric services for a wing in the adolescent ward at rancho los amigos hospital in the 60s (this would be for kids that were unable to leave the hospital. i have some stuff they made my mom)--
>
> at any rate.
>
> i am duly impressed, &, once again, -grateful-.
>
> there is a red parrot to my right that will not be quiet, so i, myself, am at more of a loss for words than i normally am. it is exasperating, b/c i am more grateful for this post, in a way than even for the other, which has given me the ability to write both of these, by calming my med dose down to a reasonable level.
>
> it's the fact that you still have some sort of strength coming thru loud & clear despite the weaknesses, a quality which my mother had, my grandfather had (both of these people worked like beasts & so did i, before they died, after too. they were also both constantly ill, me=ibid) & i have seem to have lost & must regain. i find some real help thru yr message & i thank you & wish you the very best. i know cellulitis is hell. i cannot remember who i know that had it. one of the above, probably. not me. i did have shingles, which led to the tn-- which has abated, largely, until i o.d.'d on the topomax (laughing)-- mea culpa, mea culpa--
You may not know the strengths you have...
take inventory...
personally, I think, having read your previous posts, we have much in common...
definitely in the book category...
I too have at least 4000 books and I have two books that are supposed to be finished and sitting in the publishers' offices ready to be reread by the people who do this art to be sent back for rewrites and so on...
so what do I do? I start a series, no, not a book, but a SERIES of children's books... books about how it is all right to be one's self... how one does not have to follow the herd or the pack or the gaggle but to be one's SELF...
except a series needs book one... and I have two, five, seven and I forget what other numbers done and number one refuses to write itself...
and now, following my declaration of freedom, or declaration of war, whichever, I am about to start to work on a magazine, from scratch, about something about which I know nothing.... so there go the books pushed back into the background again LOL...
and thinking about opening a photo studio of sorts called Outside the Box....
and back to the antique shop again for the summer...
and that is taking it easy...
see??? you can control the thought, but I would rest easier if you would back up to TWENTY-FIVE mg of topomax for a couple of weeks then work up to fifty and then to seventy-five and then to 100...
believe me, you will feel and react better...
sign me 600 mg a day...
kat and by the way, being eccentric is wonderful...
Posted by proserpine on March 18, 2005, at 15:12:36
In reply to Re: statis epilepticus » proserpine, posted by headachequeen on March 16, 2005, at 11:00:29
this med is driving me mad.
i have had to rid my system of it, as i have had --many-- way too many --side effects-- just about all that are noted, & heavily, most manic i can imagine being, bouncing off walls, even though it should be pretty much leaving my system. it IS-- but s l o w l y. this is a VERY strong drug.
i think it is workable, but they would have to start at something like TEN mgs w/ me, unless the enormous dosages are still in my floating around inside me. i dont know, i havent taken ANY in several days & i still feel weird. nowhere near as weird, but --weird.
in a couple more days, w/ hope, i will be thinking more appropriately & then will be able to better formulate a reply.
until then i do thank you for yr help. i was very grateful for it.
Posted by headachequeen on March 18, 2005, at 20:17:25
In reply to sorry it has taken me so long to respond., posted by proserpine on March 18, 2005, at 15:12:36
> this med is driving me mad.
>
> i have had to rid my system of it, as i have had --many-- way too many --side effects-- just about all that are noted, & heavily, most manic i can imagine being, bouncing off walls, even though it should be pretty much leaving my system. it IS-- but s l o w l y. this is a VERY strong drug.
>
> i think it is workable, but they would have to start at something like TEN mgs w/ me, unless the enormous dosages are still in my floating around inside me. i dont know, i havent taken ANY in several days & i still feel weird. nowhere near as weird, but --weird.
>
> in a couple more days, w/ hope, i will be thinking more appropriately & then will be able to better formulate a reply.
>
> until then i do thank you for yr help. i was very grateful for it.Prosperine,
you can start yourself over at a lower dosage...
simply break up the tablets into lower dosage...
it does work if you start at lower dosages...kat
Posted by hurtinhead on April 4, 2005, at 18:06:06
In reply to Re: topomax pain, posted by bridgey1128 on March 15, 2005, at 9:25:00
I have had issues with migraines for years now. I am a 34 year old woman, and back in 2000 the doctors think I had a small stroke, as they found a "lacunar infarct" on my MRI, accompanied by localized numbness in my face and extremities. Therefore, the docs are afraid to prescribe the normal migraine meds like Zomig and Imotrex due to my "stroke" history. So today, a neurologist I've just begun seeing prescribed Topamax to prevent the migraines, since I can't take the other stuff. However, after reading these threads, I am scared as hell about it. First, I am an attorney and I can't afford to get "the stupids." (Especially because I've just started a new job and the stupids can get you fired right quick, although I know popular opinion is who would notice a lawyer with a case of the stupids)
Second, I could stand to lose about 60 lbs (all gained w/in the last year-coincidently my first year of work as an attorney.) However, I'd rather lose weight on my own than get stupid.Third, my doctor has me starting Topamax at 25mg daily for the first week, and then increasing 25mg each week until I reach 100mg. Is this too fast? I'm really afraid of the cognitive side effects. Do you all think it would be OK to double the time it takes me to work up to 100mg?
Also, please, somebody tell me this drug did not make you incapable of thinking straight.
Posted by headachequeen on April 5, 2005, at 19:11:25
In reply to Re: topomax pain, posted by hurtinhead on April 4, 2005, at 18:06:06
> I have had issues with migraines for years now. I am a 34 year old woman, and back in 2000 the doctors think I had a small stroke, as they found a "lacunar infarct" on my MRI, accompanied by localized numbness in my face and extremities. Therefore, the docs are afraid to prescribe the normal migraine meds like Zomig and Imotrex due to my "stroke" history. So today, a neurologist I've just begun seeing prescribed Topamax to prevent the migraines, since I can't take the other stuff. However, after reading these threads, I am scared as hell about it. First, I am an attorney and I can't afford to get "the stupids." (Especially because I've just started a new job and the stupids can get you fired right quick, although I know popular opinion is who would notice a lawyer with a case of the stupids)
> Second, I could stand to lose about 60 lbs (all gained w/in the last year-coincidently my first year of work as an attorney.) However, I'd rather lose weight on my own than get stupid.
>
> Third, my doctor has me starting Topamax at 25mg daily for the first week, and then increasing 25mg each week until I reach 100mg. Is this too fast? I'm really afraid of the cognitive side effects. Do you all think it would be OK to double the time it takes me to work up to 100mg?
>
> Also, please, somebody tell me this drug did not make you incapable of thinking straight.
>All right, here I am ... this drug has never made me incapable of thinking straight...
at the moment I take 600 mg a day for migraine although mainly for epilepsy along with two other migraine meds ...
I too have had a small stroke, two actually... another page in the resume <sigh>
I am not an attorney but I have to think on my feet pretty well all the time and in much the way you do.
At this moment I am entering into two new undertakings: a radio news magazine with ten minutes open air leading to fifteen if it proves popular, discussion with the listeners about the days' lead topic... and an on-line magazine on a topic I know nothing about other than I like to spend money on it... I shall be editor with between six and twelve writers, a few photographers meeting my demands and as a professional photographer I can be very demanding, while I intend to do most of the cover shots myself...
mes amies, did I not say that the battle had shifted and that I was not giving in to epilepsy?
I shall be maintaining my photo studio for children and pets, another recent project, and my what was latest venture, an ongoing photo exhibition... changing the scenery so to speak, every so often with limited edition prints available for sale...
So, if Topomax does not give me the forgetfuls, you are more than safe....
That is IF... read that IF again, you do not move up the dosage too fast and weekly increments is too fast.... yes, too fast.
Start in the evenings... starting topomax in the mornings is worse than morning sickness...
At bedtime take 25 mg... for TWO (2) weeks or longer until your body says this is all right....
then move up by another 25....
if the total dosage is to be 100 mg then stay on that second increment for a couple of weeks or longer until your system says all right then start 25 mg in the morning and take it for two or three weeks before you increase to 50 mg....I doubt if 100 will affect the weight much but it could surprise you... I started losing weight in the first week... and I needed it...
the past ten days I have been unable to eat... no interest whatever and am now wearing a size 7 jean or dress pant... we have gone too far... I see the doctor on Thursday to see why my lungs hate me and why I am not interested in food...
not even steak or shrimp or chocolate...
saw surgeon today and he is too busy doing tummy tucks and face lifts and whatever to do my hand until late summer....
arrrrgggghhhhhhhhh
and those lumps get in my way...
may take them out myself...have eliminated the lump on my wrist myself....
if there is a problem, ask a woman to solve it is my new motto...
good luck with the migraines...
I started topomax in early January 2003 and have not had a headache since... and loving it
kat
Posted by hurtinhead on April 6, 2005, at 10:27:35
In reply to Re: topomax pain » hurtinhead, posted by headachequeen on April 5, 2005, at 19:11:25
Thank you so much! That made me feel a lot better. I WILL take double the time to work up to 100 mg. Better safe than sorry. And I'm not all that concerned about the weight loss. I can do it on my own. I just want to get rid of the damn headaches using a drug that is safe and that won't make me gain MORE weight.
Good luck with your radio show and on-line magazine. Radio is tough but fun. Enjoy. And thanks again for letting me know there is somebody out there who doesn't hate this drug. I'm hoping it's my miracle drug.
-Andrea
Posted by Paintmom on April 6, 2005, at 12:25:26
In reply to Re: topomax pain, posted by hurtinhead on April 6, 2005, at 10:27:35
I've been very pleased with topamax...as long as I go slow...
I am taking it for BP though...
Paintmom
Posted by Interested on April 6, 2005, at 21:03:51
In reply to Re: topomax pain » hurtinhead, posted by headachequeen on April 5, 2005, at 19:11:25
Thank you so much for your input on Topomax dosage. I have had terrible migraines for years, and I have tried numerous preventatives, including Topomax. But it made me sick and drugged.
If I start slowly taking it at night, 25 mg. and working up, will the nausea and drugged feeling wear off eventually? The migraines are so debilitating. Right now, the best I've found is Nortriptyline, which helps, but it makes me gain weight.
Any other side effects from Topomax?
Posted by headachequeen on April 7, 2005, at 16:53:30
In reply to Re: topomax pain, posted by hurtinhead on April 6, 2005, at 10:27:35
> Thank you so much! That made me feel a lot better. I WILL take double the time to work up to 100 mg. Better safe than sorry. And I'm not all that concerned about the weight loss. I can do it on my own. I just want to get rid of the damn headaches using a drug that is safe and that won't make me gain MORE weight.
>
> Good luck with your radio show and on-line magazine. Radio is tough but fun. Enjoy. And thanks again for letting me know there is somebody out there who doesn't hate this drug. I'm hoping it's my miracle drug.
> -AndreaThanks, Andrea, for the good wishes...
BUT slow down.... quadruple up on the time you are going to adjust to this med.....
two weeks between each increase at 25mg an increment <GGG>>as for weight gain on Topomax.... was back in to see my primary care physician today because I cannot shake this wretched cough and my asthma inhalers aren't doing it either;
well, sportsfans, I have just hit another weight loss crash... eight pounds since Thursday. I have no interest at all in food; have to force myself to eat at least one small meal a day, mostly protein with some yoghurt as I am back on antibiotics to deal with thisI was elated the day I discovered I could wear a size ten jean or dress pant; the size seven is a shock... wonder when it stops...
kat
Posted by headachequeen on April 7, 2005, at 16:55:01
In reply to Re: topomax pain, posted by Paintmom on April 6, 2005, at 12:25:26
> I've been very pleased with topamax...as long as I go slow...
> I am taking it for BP though...
> PaintmomAm I reading this correctly or is this new antibiotic playing games with my mind?
for Blood Pressure?
kat
Posted by headachequeen on April 7, 2005, at 17:00:06
In reply to Re: topomax pain migraine relief » headachequeen, posted by Interested on April 6, 2005, at 21:03:51
> Thank you so much for your input on Topomax dosage. I have had terrible migraines for years, and I have tried numerous preventatives, including Topomax. But it made me sick and drugged.
>
> If I start slowly taking it at night, 25 mg. and working up, will the nausea and drugged feeling wear off eventually? The migraines are so debilitating. Right now, the best I've found is Nortriptyline, which helps, but it makes me gain weight.
>
> Any other side effects from Topomax?
Oh glory... Nortrytypline causes weight gain? that is what they gave me for the pain that goes through my eye.... just what I need.... out it goes and back we go to the drawing board....as for topomax I seem to be not making myself clear at all...
yes, the nausea WILL go away if you START taking it in the EVENINGS, working up to HALF THE TOTAL in 25 mg increments at TWO WEEK INTERVALS... longer if your body needs it...
when you reach half the TOTAL dosage, then start taking it in the morning using the same schedule...this keeps it from causing the nausea and dumb attacks and so on...
I have had no problems with it at all...
now tegretol I could write a book about it....
kat
Posted by Interested on April 10, 2005, at 12:54:58
In reply to Re: topomax pain migraine relief » Interested, posted by headachequeen on April 7, 2005, at 17:00:06
I took my first dose of Topamax 25 mg. last night, and by 2:00 a.m. I woke up very nauseated and drugged, crummy, didn't sleep, felt absolutely terrible! I stayed in bed today until noon. Do these side effects wear off? I can't go to work feeling like this.
Can you cut the pill in half?
Posted by stresser on April 10, 2005, at 20:06:03
In reply to Re: topomax pain migraine relief » Interested, posted by headachequeen on April 7, 2005, at 17:00:06
Did I understand you correctly about having lost MORE weight since surgery on topamax? My daughter is back up to 400mg again, as I have titrated her up. That really takes a long time! Going off it and starting back over was a mistake, because the mood swings were horrible, and I am hoping this levels her out. The doc. doesn't know that we have done this, and I will have to break the news to him this week. He wanted to keep her at 200mg, and that's as if she's not taking anything. He doesn't have to live with her......and as far as her hair falling out? Well, lets hope the shampoo and Biotin work well enough to keep her from going bald. Do you think there is a happy medium? I found one for myself, but we can't seem to find one for her.
About losing any weight on topamax, she has yet to lose any. She has not yet been an 400mg for longer than a week either, so this will be interesting for that aspect of her life also.
I have not noticed it curbing my appetite at all, but I think it makes me a little more sluggish.
As far as the stupids, neither of us have had that problem, because we have titrated very slowely, and avoided that. She did have one small episode when she forgot a cheer at a ball game, and that scared her a little, but nothing since that. I hope it doesn't happen since increasing her dosage.
Any input?
-L
Posted by rainy on April 11, 2005, at 4:43:20
In reply to Re: topomax pain » Paintmom, posted by headachequeen on April 7, 2005, at 16:55:01
Kat, I read the BP Paintmom referred to as bipolar, not blood pressure. In this context that makes more sense.
I have two concerns. One is that at 400 mgs Topamax seems to be doing a good job of mood stabilizing, although my new pdoc is not too happy with prescribing off lable and would rather go to lithium. (Help!) It has completely pooped out on any appetite suppression properties it ever had and I am gaining weight hand over fist on an increased dose of nefazodone HCL (genereic for Serzone). 2.5 pounds in two weeks.
Second, the Topamax tingling in both hands has increased considerably, after a long interval of not happening at all. Have any of you noticed this? I'm wondering if it's the Top, or the fact that the arthritis in my neck is pressing on some nerve endings. Which ever it is, it's disconcerting.
Thanks for any wisdom about Topamax to lithium and trickster tingling.
rainy
Posted by paintmom on April 11, 2005, at 20:10:43
In reply to Re: topomax pain, posted by rainy on April 11, 2005, at 4:43:20
> Kat, I read the BP Paintmom referred to as bipolar, not blood pressure. In this context that makes more sense.
so sorry for the confusion
Bipolar is what I meant...
still getting used to having it...guess its hard to actually write it out LOL
Posted by Cairo on April 12, 2005, at 9:25:50
In reply to Re: topomax pain, posted by hurtinhead on April 4, 2005, at 18:06:06
I've been prescribed Topamax for Fibromyalgia pain . Because I am extremely sensitive to meds, my doc suggested the following schedule: 15mg at bedtime for two weeks (during that time I felt very dizzy and had difficulty writing, like the instructions to form the letters couldn't make it from my brain to my hand; it went away after two weeks. Fatigue was extreme, but is better now); now we're up to 15mg twice a day; after that 25mg at bedtime for one week, then increase at weekly intervals by 25mg, always adding the extra 25mg at bedtime. If fatigue or other side effects are too much, stick to previous dose for two weeks before increasing. If fatigue is too much, we may consider adding Provigil. She says that in her experience with Fibromyalgia and all the various meds she's tried with her patients, her "desert island" choice as of today is Topamax, though she is waiting for Pregabalin to be released in June.
Weight loss doesn't kick in until higher doses, she said, as does muscle relaxation. Hope this helps.
Cairo
> I have had issues with migraines for years now. I am a 34 year old woman, and back in 2000 the doctors think I had a small stroke, as they found a "lacunar infarct" on my MRI, accompanied by localized numbness in my face and extremities. Therefore, the docs are afraid to prescribe the normal migraine meds like Zomig and Imotrex due to my "stroke" history. So today, a neurologist I've just begun seeing prescribed Topamax to prevent the migraines, since I can't take the other stuff. However, after reading these threads, I am scared as hell about it. First, I am an attorney and I can't afford to get "the stupids." (Especially because I've just started a new job and the stupids can get you fired right quick, although I know popular opinion is who would notice a lawyer with a case of the stupids)
> Second, I could stand to lose about 60 lbs (all gained w/in the last year-coincidently my first year of work as an attorney.) However, I'd rather lose weight on my own than get stupid.
>
> Third, my doctor has me starting Topamax at 25mg daily for the first week, and then increasing 25mg each week until I reach 100mg. Is this too fast? I'm really afraid of the cognitive side effects. Do you all think it would be OK to double the time it takes me to work up to 100mg?
>
> Also, please, somebody tell me this drug did not make you incapable of thinking straight.
>
Posted by headachequeen on April 12, 2005, at 13:43:25
In reply to Re: Kat and everyone, posted by stresser on April 10, 2005, at 20:06:03
> Did I understand you correctly about having lost MORE weight since surgery on topamax? My daughter is back up to 400mg again, as I have titrated her up.
The slow titrating does take time but it is the safest way and pays off in the long run...and yes I have lost more weight, weight I am beginning to be unable to lose...
the other day I was trying to find something to wear to an occasion that needed something that fit reasonably and looked like an abandoned child in almost everything I own...
had to borrow clothes from the gal next door and I have always thought of her as needing a few good meals...
the 'stupids' should not interfere with the slow increases
sometimes we just forget things -- even people not on topomax do this...
at the moment I am busy trying to develop some sort of appetite... but with all grains ruled out that adds to the fun... but I feel so much better...
I am also trying IET and Reiki (I use it on my dogs and it is so good for them so thought it might help me in my desire to take back my life...)
Right now they are in serious mope mode as their big brother has gone back on his 'adventures'... funny how empty the house feels with his leaving...
and I will need more than topomax to calm my moods until he fetches up safely back in Canada again...
whose idea was it that he grow up to be a soldier anyway <s>
As I am back on antibiotics, tegretol and I are not speaking to each other... no risks wanted ... and I am quite happy about that, but they did boost my to Topomax again to fill in for the missing tegretol... seems to me there is a message there.. if it can fill in in the short term, why not always???????????
tell M I am here really rooting for her successes and yours
kat
Posted by headachequeen on April 12, 2005, at 13:44:38
In reply to Re: topomax pain migraine relief - side effects » headachequeen, posted by Interested on April 10, 2005, at 12:54:58
> I took my first dose of Topamax 25 mg. last night, and by 2:00 a.m. I woke up very nauseated and drugged, crummy, didn't sleep, felt absolutely terrible! I stayed in bed today until noon. Do these side effects wear off? I can't go to work feeling like this.
>
> Can you cut the pill in half?Yes they do and no you shouldn't
kat
Posted by headachequeen on April 12, 2005, at 13:48:19
In reply to Re: topomax pain, posted by rainy on April 11, 2005, at 4:43:20
> Kat, I read the BP Paintmom referred to as bipolar, not blood pressure. In this context that makes more sense.
> I have two concerns. One is that at 400 mgs Topamax seems to be doing a good job of mood stabilizing, although my new pdoc is not too happy with prescribing off lable and would rather go to lithium. (Help!) It has completely pooped out on any appetite suppression properties it ever had and I am gaining weight hand over fist on an increased dose of nefazodone HCL (genereic for Serzone). 2.5 pounds in two weeks.
> Second, the Topamax tingling in both hands has increased considerably, after a long interval of not happening at all. Have any of you noticed this? I'm wondering if it's the Top, or the fact that the arthritis in my neck is pressing on some nerve endings. Which ever it is, it's disconcerting.
> Thanks for any wisdom about Topamax to lithium and trickster tingling.
> rainy
>
>
>Oh, Rainy, with all the things that lithium does to suppress personality and so many other awful things, I would run screaming into the night to avoid it... I remember when my doctor thought it might be the answer for me when my epilepsy was presenting as depression or manic depression, rather... at least that is how he interpreted it...
this thing is so strange...
everything I read and heard from people who knew the drug said don't take it...
and the topomax tingling...
well, I wonder about that...
would like to experience it actually...
I would be inclined to suspect the pressure on the nerve endings...
any tingling around here is always a minor seizure...
any change would be good...
kat
Posted by headachequeen on April 12, 2005, at 13:49:46
In reply to Re: topomax pain, posted by paintmom on April 11, 2005, at 20:10:43
> > Kat, I read the BP Paintmom referred to as bipolar, not blood pressure. In this context that makes more sense.
> so sorry for the confusion
> Bipolar is what I meant...
> still getting used to having it...guess its hard to actually write it out LOLLunchbag letdown!!! Here I was hoping for a miracle side effect....
<ggg>
kat
Posted by headachequeen on April 12, 2005, at 13:53:06
In reply to Re: topomax pain-ramping schedule » hurtinhead, posted by Cairo on April 12, 2005, at 9:25:50
> I've been prescribed Topamax for Fibromyalgia pain . Because I am extremely sensitive to meds, my doc suggested the following schedule: 15mg at bedtime for two weeks (during that time I felt very dizzy and had difficulty writing, like the instructions to form the letters couldn't make it from my brain to my hand; it went away after two weeks. Fatigue was extreme, but is better now); now we're up to 15mg twice a day; after that 25mg at bedtime for one week, then increase at weekly intervals by 25mg, always adding the extra 25mg at bedtime. If fatigue or other side effects are too much, stick to previous dose for two weeks before increasing. If fatigue is too much, we may consider adding Provigil. She says that in her experience with Fibromyalgia and all the various meds she's tried with her patients, her "desert island" choice as of today is Topamax, though she is waiting for Pregabalin to be released in June.
At last a doctor with a slow approach to this...
My sister-in-law fell and broke her back... putting up Christmas lights in a tree... and has metal rods and pins and I don't know what all through and beside her spine as well as huge pain that sometimes requires morphine (she has a prescription for those days)
she was also given topomax to deal with the pain...
and the spasms of pain...
and it worked very well....
kat
Posted by stresser on April 12, 2005, at 21:11:09
In reply to Re: topomax, posted by spedmonkey on April 12, 2005, at 20:55:07
I really didn't know that topamax was given for pain until reading these past posts. I had read that sometimes it could be given...does this mean that those of us who take it shouldn't feel many aches and pains? -L
Go forward in thread:
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
[email protected]
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.