![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1508 to 1532 of 1838. Go back in thread:
Posted by hurtinhead on April 13, 2005, at 11:21:03
In reply to Re: topomax pain-ramping schedule » hurtinhead, posted by Cairo on April 12, 2005, at 9:25:50
>Thanks for the input. After reading all the posts, I have decided to ramp up 25mg every 2 weeks. I have been on it 1 week now, and I was a bit sluggish at first, but I seem to be adjusting well. I also haven't had any more issues than usual with the stupids. I will be adding the next 25mg next week in the pm, and then 2wks later I will add the 3rd 25mg in the morning. That's the one I'm afraid of. I seem to do OK with taking it at night, I don't know how it will hit me once I start taking it in the morning as well.
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 stresser on April 13, 2005, at 12:44:22
In reply to Re: topomax pain-ramping schedule, posted by hurtinhead on April 13, 2005, at 11:21:03
I was able to think straight on this drug, well.....as straight as I always could, haaa! I increased 25mg every two weeks. My daughter increased every week, because her doctor wanted her up faster because she is bipolar and she needed the effects of the drug faster. She really didn't have any trouble with that. I don't think you should go any fast that one week, and if you notice anything, then back down until the symptoms regress, and add in the 25mg again. I have done that with her in the past, and it worked very well. I remember when she first started taking topamax, I was very nervous for her. No big deal, really. Everyone is different, and neither of us have had serious trouble yet.
I know you are worried about getting stupid, and I am as well. I have not seen it in myself or my daughter, and I am taking 200mg per day. She is taking 400mg per day, and hasn't said anything about congnitive problems yet. If she does, we will back down until they go away. -L
Posted by rainy on April 13, 2005, at 16:16:45
In reply to Re: topomax pain-ramping schedule, posted by stresser on April 13, 2005, at 12:44:22
I would be very leery of a one week tiratation schedual. At least from my aging standpoint--I was 60 when I started the drug and already a veteran of a number of "psychotropic medications." M is what, 16 and you're not so old yourself. I think that age may have some effect on how we experience cognitive problems, which include forgetting events, other people's diagnoses, this kind of stuff.
Even now, at a steady 400 since mid January (I think) when I'm under stress I tend to forget stuff easily. It's there, and a neurologoist reminded me that all of this Topamax stuff is reversible--except maybe the bone stuff, we didn't talk about that--but I have problems with recall and word finding. Ha Ha, I say, Senior moments. I'm 62. Senior my eye.
rainy
Posted by headachequeen on April 13, 2005, at 18:31:54
In reply to Re: topomax pain-ramping schedule, posted by rainy on April 13, 2005, at 16:16:45
> I would be very leery of a one week tiratation schedual. At least from my aging standpoint--I was 60 when I started the drug and already a veteran of a number of "psychotropic medications." M is what, 16 and you're not so old yourself. I think that age may have some effect on how we experience cognitive problems, which include forgetting events, other people's diagnoses, this kind of stuff.
> Even now, at a steady 400 since mid January (I think) when I'm under stress I tend to forget stuff easily. It's there, and a neurologoist reminded me that all of this Topamax stuff is reversible--except maybe the bone stuff, we didn't talk about that--but I have problems with recall and word finding. Ha Ha, I say, Senior moments. I'm 62. Senior my eye.
> rainy
I agree with Rainy about the one-week titration.. that is asking for problems...
actually it is running headlong into them, sort of like driving a car headlong down the railroad tracks straight into a runaway freight engine thundering downhill....I have been on Topomax for two-and-a-half years now and am presently at 600 mg a day, three in the morning and three at night...
I have no cognitive problems aside from the ones caused by my condition and while I would like to be able to blame them on Topomax or Tegretol or Holy Cloboazam, Batman!, that would mean that they were regular or frequent, whereas mine happen only on 'our bad days"
When I am in one of my saran wrap days as Rainy, I think, so aptly described it, trying to fight my way out of a room filled with cotton wool or marshmallows or whatever it is that my world becomes, then my cognitive bit kicks in and words disappear --
it is so frustrating to be unable to think of the word I need or want, like learning English all over again...
I learned it once as a child, then came back to English Canada in my teens and learned it again...
now I have the agony of learning it again when these days kick in...
I know the word is there and I keep coming up with words that sound like what I mean and it is totally
agonising for a person who once was always articulate and precise in her speech and writing to have to struggle to be understood...
I find myself using a lot of hand signals, or slipping back into French until the English words come to me...
when I came to in Emergency last winter, I had no English at all, which was fine as the nurses and some of the doctors were bilingual and the nurses told me not to worry about it...
but I knew something was wrong... then it hit me... my husband does not speak English...
I didn't know the day of the week, how many fingers they were sticking in front of my face, and I did not know my name, but I knew that my husband spoke only English, so it was NOT all right unless one of them was bilingual and coming home to translate for me...
Give them credit, no one laughed...
When I am not fighting out of the marshmallow world, then I have no problems...
so I cannot blame even the high dose of topomax for the cognitive lapses...
can't even tag that wretched old tegretol for it...and lately the few times I have turned on the television set, it seems to be a medical programme with someone in the midst or beginning or later effects of some dire epileptical seizure or a problem that comes from a combination of childhood ailments attacking immune systems and the drugs given to combat the epilepsy...
oh tht gives me the warm fuzzies...there I have vented...
but DO NOT, repeat DO NOT titrate faster than two week intervals... you are in a danger zone otherwise....
and if it is done slowly there should be no cognitive problems...Rainy, there is nothing Senior about you...
you are the youngest in mind soul I know....
and I think of you often lately...
shall be in direct touch soon... so much to tell you shall have to write a book <sigh>
kat
Posted by paintmom on April 13, 2005, at 21:13:53
In reply to Re: topomax pain-ramping schedule » rainy, posted by headachequeen on April 13, 2005, at 18:31:54
Rainy.....I assumed you were in your thirties....you have a young spirit..
PM
Posted by rainy on April 14, 2005, at 7:27:41
In reply to Re: topomax pain-ramping schedule » rainy, posted by headachequeen on April 13, 2005, at 18:31:54
That must be why the twenties-something clerk at Trader Joe's called me "Dear" yesterday and I, in the clutches of an impending hypomanic episode quired sweetly if I'd heared correctly. "Did you call me 'Dear'?" I asked menacinely as if I were going to chew his tail off. Changing it to "M'am" or however you spell it allowed me to escacpe the store with some dignity and internal laughter instead of the steady growl increased nefazodone seems to be inducing in me lately.
Paintmom, I feel like I'm in my 30's. My mother's favorite adjective for me was immature--she feared that I'd never grow up, whatever that means. I am not elegant and I have to face the grouchies on a daily basis and don't do it with much grace. I swear with enjoyment, but too much. Since increasing the AD I've made some life decisions, like Sunday will be my last church service in the denomination where my husband has been minister for 30 some years--just can't stand it any longer (not church--we've only been here for less than 2 years) and I am not, I repeat NOT cook supper or cleaning up after it at least one night a week.
I am afraid of gaining weight and I want to go up a little more on this medication because I think I'm less depressed but the Topamax has stopped its magic re eating disorder which has been a problem since I was 15, and there are other issues.
So age is like truth, variable, many sided and often up to the beholder and the one who experiences it.
I am no spring chicken but I'm not decrepit yet, either.
rainy
Posted by stresser on June 1, 2005, at 21:16:27
In reply to Re: topomax pain-ramping schedule » headachequeen, posted by rainy on April 14, 2005, at 7:27:41
I am wanting to get this thread back up, because several people have posted questions concerning Topomax. I know there are many of you that can offer valuable advice to people that are new to this medication. Thanks everyone!
Posted by Alvin on June 2, 2005, at 12:10:32
In reply to New to Topomax, posted by stresser on June 1, 2005, at 21:16:27
> I am wanting to get this thread back up, because several people have posted questions concerning Topomax. I know there are many of you that can offer valuable advice to people that are new to this medication. Thanks everyone!
>I took it (175 mg) for almost 2 years (and ended it about 2 years ago). Helped me out greatly taking the rough edges off moods and no weight gain (I didn't lose weight either). I experienced no side effects but discontinued it when I began to have some mild memory problems; overall it was very helpful when I needed it - I was able to continue with post-graduate courses while I was taking it, so memory problems weren't all that bad.
Posted by bridgey1128 on June 2, 2005, at 16:03:34
In reply to Re: New to Topomax, posted by Alvin on June 2, 2005, at 12:10:32
I had stopped taking it because at 250mg it started making me apathetic. My Dr was not happy about me stopping all the meds but I couldn't help it really because my insurance had been cut off. NOW I finally have it reinstated( That was SOOOO not worth the irritation!) and I am going back on only 50mg. When I went off I suddenly got REALLY hungry and I have been fighting it. I have only gained back like 7lbs but that is 7lbs too much! I lost 35 but it was really because of the Atkins diet I was on and the fact that it did help my appetite. I didn't lose any weight BECAUSE of the Topomax. But I am now back on it, starting SLOWLY, of course and hopefully it will help my weight come off again.
Posted by stresser on June 2, 2005, at 19:09:23
In reply to Re: New to Topomax, posted by bridgey1128 on June 2, 2005, at 16:03:34
Bridgey!!!!!!!
Oh my!!! I have missed you!
How great to see your post! What were you doing for your BPII, if you weren't taking any medications?My daughter and I never did lose any weight on the topomax. It has worked at leveling out our moods, but M takes Trileptal with hers as well.
Can you feel a difference at 50mg yet? Starting back over is a bear, I know that. My daughter had to do it in Jan., because she tried another medication. Titrating up again is long journey, especially when you know where you are going. It must be done. I think the seven pounds will come off, because a similiar thing happend to Kat, and she lost her re-gained weight again. She had to go off Topomax for something last winter.
M's hair is still falling out at a slow pace, but she is taking 300mg. When she lowered her dosage to 200mg, it slowed down a bit, but her moods were wacky. I am wondering if the doctor increased her Trileptal and lowered her Topomax, maybe her hair would stop coming out completely? It used to be really thick, and now it's just normal hair, like my hair.
I will let you know what happens after the doctor's appt. tomorrow! -L
Posted by paintmom on June 2, 2005, at 20:50:49
In reply to Re: New to Topomax, posted by stresser on June 2, 2005, at 19:09:23
Love the topamax...really leveled out my moods...I titered up VERY slowly...maxed out at 100mg....didn't really loose weight either....and you would think I would have lost a ton cause I virtually stopped the anit dep. that were making me blow up....but I am over 40...so times working against me....hahaha ...Anyway...only drawback is that I believe that the topamax is at the root of making my sleep problems 10x worse...
any thoughts or suggestions...I hate to have to find a whole new drug and start all over....
thanks all
paintmom
Posted by rainy on June 3, 2005, at 7:30:21
In reply to Re: New to Topomax, posted by paintmom on June 2, 2005, at 20:50:49
Hi, Paintmom. It's been so long since I've laid eyes on this board that I can't remember why you're taking Topamax. 100 mgs doesn't seem like a lot to me (I'm on 600.) You probably know that weight loss, if it's going to happen, usually doesn't occur until the Topamaxer reaches the 225 mg mark or above. Of course it's different for everybody.
As for sleep difficulties, my bottle says that it can cause drowsiness, although I've never noticed that--if anything it makes me edgy. What kind of sleep troubles are you having, if thats not too personal a question to ask?rainy
Posted by stresser on June 3, 2005, at 7:53:34
In reply to Re: New to Topomax » paintmom, posted by rainy on June 3, 2005, at 7:30:21
I don't have any sleep problems, and I think it's because I have to take Klonopin for my RLS at night. Sometimes Melatonin helps with sleep problems, and it's natural, so it won't affect you in any way. -L
Posted by bridgey1128 on June 3, 2005, at 9:06:07
In reply to Re: New to Topomax » paintmom, posted by rainy on June 3, 2005, at 7:30:21
To answer your question, I haven't been taking anything except an occasional Ativan but I have been doing fine. I DID notice as soon as I came off the Topomax that I slept like a LOG so I know it causes sleep problems. I even told a friend who is a counselor and she said, "So I guess you are sleeping better now." I guess that is a wide spread problem. I have noticed a tad more being impatient but to be honest I feel SOOO much better!! Well, I can ACTUALLY feel. Even at 250mg I felt apathetic and just had NO motivation to do anything. It was horrid. Oh and my bowels started working again. For me, Topomax slowed everything down in that area. I have just been back on 25mg for 2 days so far, so I haven't noticed anything. Even on the 25mg I am not as hungry, so that is a good thing.
Posted by paintmom on June 3, 2005, at 14:36:27
In reply to Re: New to Topomax » paintmom, posted by rainy on June 3, 2005, at 7:30:21
> Hi, Paintmom. It's been so long since I've laid eyes on this board that I can't remember why you're taking Topamax. 100 mgs doesn't seem like a lot to me (I'm on 600.) You probably know that weight loss, if it's going to happen, usually doesn't occur until the Topamaxer reaches the 225 mg mark or above. Of course it's different for everybody.
> As for sleep difficulties, my bottle says that it can cause drowsiness, although I've never noticed that--if anything it makes me edgy. What kind of sleep troubles are you having, if thats not too personal a question to ask?
>
> rainy
>HI rainy
T is for Bipolar II
Its been really great....I just got diagnosed in the past six months...was always diagnosed with depression...and just thought I snapped out of it really well...(hahahah)So its been a blessing for me....to finally know what my problem really is....and to find something that helps it!!I've always had sleep problems...I have Chronic Fatigue Syndrome...Apnea.....Insomnia....etc.....I have trouble falling asleep and staying asleep...and because of the apnea....my quality of sleep is poor. But since I've raised the topamax above 50mg....my sleep has been horrible!!!!!! I cant fall asleep and when I finally do...I wake up over and over again.
I am thinking I should probably ask my doctor to try something else...but I hate switching pysch meds...its such a drag....and I am a divorced mom...I don't want to get moody for my son. I can have some pretty freaky reactions to meds...I am very sensative and have been known to have the opposite reactions..(just like you said...topamax makes most people drowsy:)
You all on this board are so knowledgable and helpful...you are a godsend...thanks
Paintmom
Posted by paintmom on June 7, 2005, at 6:59:26
In reply to Re: New to Topomax » paintmom, posted by rainy on June 3, 2005, at 7:30:21
I talked with my psych nurse practitioner and we lowered my topamax from 100 to 50 yesterday. I took a little temazapam just to help me fall asleep cause I was punch drunk from being over tired...I swear I haven't slept thru the night in two months....and low and behold...I SLEPT 8 HOURS STRAIGHT!!!!!!!!!
I am so happy!
I am just a little nervous because I don't see the NP till next thursday....and I think I am going to have some issues on the lower dose. I mean the 100mg was perfect for me.....I felt very evened out. Lower and I was getting a little depressed.
Guess I will try to do natural stuff to help myself...exercise, eat right, and take my Omega 3's and B's...that really seems to help.
I am hoping that she adds a little something to the topamax that doesn't make me gain weight but will help to keep me on an even keel. I don't want to start getting all reactive again....I was that way my whole life and I hated it. It was like being a big raw open nerve.Well, I'll keep you guys posted.
All the best,
Paintmom
Posted by lara53 on June 7, 2005, at 8:05:47
In reply to Re: New to Topomax, posted by paintmom on June 7, 2005, at 6:59:26
Hi
Topomax is going to be one I suggest to pdoc today.Did you ever try lamictal? Doesn't seem to be for me.Thank you.
Laura
Posted by paintmom on June 7, 2005, at 9:04:50
In reply to Re: New to Topomax » paintmom, posted by lara53 on June 7, 2005, at 8:05:47
I never tried Lamictal but its on my list of ones to research along with tegretol and trileptal...why didn't it work for you??
thanks
PM
Posted by headachequeen on June 9, 2005, at 22:06:13
In reply to Re: New to Topomax, posted by stresser on June 2, 2005, at 19:09:23
> Bridgey!!!!!!!
>
> Oh my!!! I have missed you!
> How great to see your post! What were you doing for your BPII, if you weren't taking any medications?
>
> My daughter and I never did lose any weight on the topomax. It has worked at leveling out our moods, but M takes Trileptal with hers as well.
>
> Can you feel a difference at 50mg yet? Starting back over is a bear, I know that. My daughter had to do it in Jan., because she tried another medication. Titrating up again is long journey, especially when you know where you are going. It must be done. I think the seven pounds will come off, because a similiar thing happend to Kat, and she lost her re-gained weight again. She had to go off Topomax for something last winter.
>
> M's hair is still falling out at a slow pace, but she is taking 300mg. When she lowered her dosage to 200mg, it slowed down a bit, but her moods were wacky. I am wondering if the doctor increased her Trileptal and lowered her Topomax, maybe her hair would stop coming out completely? It used to be really thick, and now it's just normal hair, like my hair.
>
> I will let you know what happens after the doctor's appt. tomorrow! -L
>
>
>There are special shampoos and vitamin and mineral supplements for people with hair problems... that we can't discuss here...
however at 600 mg a day I am not having any hair loss at all. and I would notice it... so would my stylist!!! I have exceptionally thick hair, another redhead thing <g>
and have now decided to try another radical hair change... going from the short short spiked to a longer, layered look I think... it will take ten years for the hair to grow that long, but this is
my new mission
Somewhere in the posts I have read today I saw tegretol mentioned and I can't remember why...
nothing to do with topomax memory problems but strongly related to the epilepsy...
I have declared war on the condition and have also determined not to take the tegretol as my speech slurs and my mind loses words and concepts when I am on the stuff...
the past few weeks have been truly disastrous to the point that my primary care, who is leaving for the big city, has decided that if he is not happy with what he hears from the neuro when I finally see him on that emergency appointment, the one booked last January, that I shall see another one at once...
yesterday morning another seizure of a new sort, but when I finally came out of it, I had no idea of anyone or anything, who I was, where I was, the whole nine yards...
the topomax and clobozam seem to work to a degree, but if I try adding the tegretol even in a low dose, life becomes very challenging.
Never did like that stuff...kat
Posted by headachequeen on June 9, 2005, at 22:14:58
In reply to Re: New to Topomax, posted by paintmom on June 3, 2005, at 14:36:27
>
> I've always had sleep problems...I have Chronic Fatigue Syndrome...Apnea.....Insomnia....etc.....I have trouble falling asleep and staying asleep...and because of the apnea....my quality of sleep is poor. But since I've raised the topamax above 50mg....my sleep has been horrible!!!!!! I cant fall asleep and when I finally do...I wake up over and over again.
Have you asked your primary care physician to give you something that will help you 'turn off your brain' at nights? I have problems sleeping, problems that date back to long before the Topomax came into my life...
and I checked, there is nothing on the bottle that mentions drowsiness....
When I go to bed, I read for a little while, right now I am reading about reiki as I am taking courses in it, or about the Ottoman empire, or books on training... nothing stimulating. After about three pages I usually find my eyes telling me that they are not able to process the symbols on the page, time to sleep...
but the slightest sound or movement and I am awake... and do not go back to sleep easily..
At the sleep lab they told me that I wakened as soon as I reached a deep sleep... trust me to get even that backwards!!!
I have a prescription for a very mild sleeping medication that simply tells my brain to stop thinking and it helps me sleep for a few hours ...
traditionally my best sleeping time has always been between five and eleven in the morning...
of course employers expect one to be at work in the morning and don't care that the only time I sleep soundly without wakening is the time they expect some sort of work for pay...
being a free lancer has helped and being able to set my own hours for training and such helps too...
but it would be nice to be able to go to bed and go to sleep and stay asleep until the alarm wakens one...
I understand that there are people who do that <sigh>
kat
Posted by headachequeen on June 9, 2005, at 22:16:37
In reply to Re: New to Topomax, posted by paintmom on June 7, 2005, at 6:59:26
> I talked with my psych nurse practitioner and we lowered my topamax from 100 to 50 yesterday. I took a little temazapam just to help me fall asleep cause I was punch drunk from being over tired...I swear I haven't slept thru the night in two months....and low and behold...I SLEPT 8 HOURS STRAIGHT!!!!!!!!!
> I am so happy!
> I am just a little nervous because I don't see the NP till next thursday....and I think I am going to have some issues on the lower dose. I mean the 100mg was perfect for me.....I felt very evened out. Lower and I was getting a little depressed.
> Guess I will try to do natural stuff to help myself...exercise, eat right, and take my Omega 3's and B's...that really seems to help.
> I am hoping that she adds a little something to the topamax that doesn't make me gain weight but will help to keep me on an even keel. I don't want to start getting all reactive again....I was that way my whole life and I hated it. It was like being a big raw open nerve.
>
> Well, I'll keep you guys posted.
>
> All the best,
>
> Paintmom
>Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
kat
Posted by paintmom on June 10, 2005, at 7:36:31
In reply to Re: New to Topomax » paintmom, posted by headachequeen on June 9, 2005, at 22:16:37
> >
>
> Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
> katno...I can only take it in the AM or I don't sleep
:)
Posted by stresser on June 11, 2005, at 18:56:30
In reply to Re: New to Topomax, posted by paintmom on June 10, 2005, at 7:36:31
Topomax doesnt' seem to keep me awake.
She is trying the Niocin Shampoo, but it really isn't doing much for the hair. I will continue to buy it, and see what happens with it.I feel as if maybe I need to increase my topomax dosage a little. Is there such a thing as building up a tolerance to it? Am I just getting worse these days with my moods? I know it's not PMS, and I feel like I did before I started taking Topamax. I only take 200mg, and the doctor said that it is quite low. I don't mind it being low, I feel relieved that I don't need it too be stronger yet.
Kat- I hate it that you are still having the seizures...can you increase the topomax dosage? What else are you taking other that the two you mentioned? -L
Posted by headachequeen on June 12, 2005, at 8:47:26
In reply to Re: New to Topomax, posted by paintmom on June 10, 2005, at 7:36:31
> > >
> >
> > Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
> > kat
>
> no...I can only take it in the AM or I don't sleep
> :)
>Wow! that is difficult for your system to adjust to...
the medication is meant to be delivered into the system evenly over a 24-hour period, hence the need to take it at twelve-hour intervals... I take mine as soon as I get up in the morning along with the cloba holy batman and other meds that I take in the morning.... the tegretol if I want to survive I have to break down into four doses a day when I take it as it must be delivered the same way... and then twelve hours later I take the topomax again...
so 'nighttime' is not actually bedtime or any time close to that, but around an hour or so after dinner...
by the time I am ready to settle down to the idea of bed five or six hours have passed and we get along fine...
kat
Posted by headachequeen on June 12, 2005, at 9:22:28
In reply to Re: Kat and everyone, posted by stresser on June 11, 2005, at 18:56:30
> Topomax doesnt' seem to keep me awake.
> She is trying the Niocin Shampoo, but it really isn't doing much for the hair. I will continue to buy it, and see what happens with it.
>
> I feel as if maybe I need to increase my topomax dosage a little. Is there such a thing as building up a tolerance to it? Am I just getting worse these days with my moods? I know it's not PMS, and I feel like I did before I started taking Topamax. I only take 200mg, and the doctor said that it is quite low. I don't mind it being low, I feel relieved that I don't need it too be stronger yet.
>
> Kat- I hate it that you are still having the seizures...can you increase the topomax dosage? What else are you taking other that the two you mentioned? -L
>
Ma chere amie, I am going to do some research this week and see what we can do about that hair...
spent the weekend taking a reiki course friend who is a master was teaching and was simply thunderstruck by what happened. She never teaches more than four at a time but this time there were only two, her preferred number of students and I learned so much and experienced so much.
She is also an holistic practictioner and may have some hair ideas... she is trained in many therapies...
I have found that while Topomax does not cause any negative effects unless I stop taking it for any length of time, the Tegretol is devastating to my system. Even when I break it down into four doses, wakening in the night to take it... well that isn't hard as I am not much of a sleeper anyway LOL but if I were able to sleep that night the alarm going off was annoying and it wakens my husband which is unfair...
besides he is aware of the risks associated with the drug and is extremely concerned about it so that is adding to his stress... and his stress levels are high enough as it is with this nonsense.As my emergency appointment with the neuro is coming up, the one booked in January, I thought maybe I had better start taking it again, even if in low doses so it would show up in the blood tests, so he can't scream non-compliant and blame the changes and progression on my non-compliance before I get to tell him that I have discovered the co-relation between the drug and intensity of seizure activity...
as soon as I start taking even a low dose people who know me comment on it -- my eyes, my walking, my speech, articulation, so many things change.
One friend can predict to within five hours when the seizure will occur and whether it will be daytime or nocturnal....
I suppose when it was discovered it was a great improvement over the drugs of the time as they are really threats to the person taking them, but there are surely better drugs out there?
The only other med prescribed for the epilepsy is the clobazam... after all this man has not had time to see me in six almost seven months...In the meantime I have decided to take some control..
I began seeing a reiki practitioner regularly about the time I ditched the tegritol and until I decided last week to try the tegritol for a while, I was five weeks without a nocturnal seizure and have not had any of those marshmallow saranwrap type days in longer than that...
It was just before I ditched the teg completely (I was still taking it just before I went to bed thinking that while I was sleeping or trying to sleep then I was 'safe' so to speak, didn't have to worry about slurring of my speech, staggering when I walk, or any of the things that happen during the day because I would not be doing them )that I had that first falling down seizure...
no warning, didn't even know it had happened until I came to and was trying to get up and couldn't...
I simply could not breathe everything hurt so much..
My primary was in emerg that day (he spends one day a week there and I always seem to do something bizarre when he is there, thank heaven!!!) and called Ottawa and the neuro who said this was just a progression and he was not surprised...
there was no flailing of limbs during it, just as if I had been hit on the head and fell forward unconscious onto the pavement... just what one wants to do on a sunny spring day in mid-town small town Ontario... gives the locals lots to talk about...
My doctor was furious and has decided that we are changing neuros if he does not get some answers and soon... and a change in treatment that stops that constant occurrence...
He thinks that an increase in Topomax and dumping tegritol is a good start because the one seems to work and the other seems to be anything but help but he says there has to be something else that can be done and this is no way to provide quality of life...
seems to me I had heard that somewhere before <s>When I left the hospital I went straight for my first reiki session, for one reason I didn't have any part of me that didn't hurt... no broken bones amazingly... but bruises... I had to go for all sorts of tests before I left emerg including an echocardiogram because of this stupid heart murmur.
I had fallen so hard I had bruised the muscles around the heart... and cracked some ribs but nothing broken...The reiki session really helped me and Jen has been seeing me weekly sometimes twice weekly since. One session she had a second practioner with her and it was incredible -- that was after my visit to the nerve chappie who sent the currents of electricity into my leg to see which nerves were blocked and found that not only are most of them blocked the muscles are damaged because of it, there was no feeling at all, so he decided to test the left leg as a sort of control... there is lots of feeling in it... they heard me yell in Montreal!!! ...
since that session I have not had the excruciating pains in the leg wakening me and it has been ten days at least... I no longer limp... oh, it won't last forever, but as long as I can keep going and it works for a while, I can put off the surgery on my spine and I do not want any more invasive stuff if I can help...My next step in my control battle plan is to learn about other alternative therapies and how they can help me take control...
I am not about to throw over the conventional medical care, but there are therapies out there that made sense centuries ago and that can work with today's world, we just chose to forget them...It is my life; I do not choose to sit here and wait until some doctor remembers that he has this patient and maybe he should see if she is alive or dead...
The Buddhists say that one must live in the moment as my Buddhist friend is always telling me...
well, I decided that the moments flow by too quickly not to live them, because they don't come back for a second chance to live them when we are feeling better...Me? I feel great... just some days are greater than others. In the meantime, I feel even better enjoying the moments because I have taken them back for me... and Kodak shares are up <g>
I am also seeing a speech path again because of the speech problems now that she knows it is the left temporal lobe and the frontal lobe involved she knows what to do...
she has been waiting to hear from the neuro since December... I was in for a follow-up on the throat problem I have and was able to tell her... so away we go...Perhaps by the end of the month I shall have a better balance of medications, or a new specialist...
but whatever, I shall be running the show this time...
not sitting or lying there letting someone else decide it all for me...meanwhile I shall ask Jen and some of the others how we can help M's hair and post you about it...
and 200 is really low... it won't affect weight greatly apparently although it certainly started affecting mine when I began taking it... so you don't have to worry about moving up another 50 to 100 mg really...
400 and up is serious therapy I think from what I have experienced and heard...
but maybe not...kat
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Dr. Bob is Robert Hsiung, MD,
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