![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 600 to 624 of 1838. Go back in thread:
Posted by headachequeen on June 17, 2004, at 15:41:19
In reply to Re: Good Grief, posted by PoohBear on June 17, 2004, at 12:11:41
> Keep in mind that weight loss from Topomax is a SIDE EFFECT of a drug which is *meant* for seizure control. Since everyone's different, you *may not* see this SIDE EFFECT of the drug.
>
>> Tony
This is a point that I used to keep stressing in my early months on this message board and have stopped preaching...
at times it worries me that people are given the med simply for its side effect, but then, my neurologist prescribed it as a secondary anti-seizure med because of the side effect (it is one of the best things he has found to combat headache problems, migraine and cluster headaches for instance, and he is head of the headache institute in his region so I guess he knows whereof he speaks...)
so I thought perhaps I was not the one to preach the side effect message...
and now many doctors are prescribing it for weight loss and not just psy-docs...
so?????many people are jumping on the atkins diet and trying that one, cutting down on carbs and hoping that will help, yet Atkins himself died morbidly obese and with extreme hypertension... that surely says something...
a balanced diet is much more helpful in weight management no matter the cause... and as a diabetic I have had counselling on that from some of the best...
besides we have to remember that many people who are battling weight and trying this means are battling weight gain caused by medications they were given to deal with psychological or emotional problems so it is not something that is simply an exercise or diet thing to be swept aside with a brush of the hand or the advice to exercise or eat less candy or whatever...
I know... I get more exercise than most believe me... aside from the music and the writing, I do a lot of extremely active things as I follow my dogs up hill and down dale and through culverts and barbed wire and over and under and through all sorts of impossible terrain, and around agility courses and doing obedience with them and with clients'dogs... and let us not overlook simply playing with them or show training... grooming is not exactly passive behaviour either... try lifting 90 to 100 pounds of dog onto a grooming table then working through all that double coat three times a week, or two or three times a day at a dog show...
so it is not always that easy....if there is a side effect to this stuff that helps, then so be it, we use it to our advantage...
kat
>
Posted by bruce_w6 on June 17, 2004, at 17:04:58
In reply to Re: Good Grief » bruce_w6, posted by headachequeen on June 17, 2004, at 13:07:12
Yes, the meds I am taking are definatly weight gainers. I was hoping that by 200 mg a day the weight loss would have kicked in.
> > I am up to 200 mg at 25 mg a week and still no signs of relief of weight loss yet from the Topomax. I went from 220 to 255 in 2 months with the med change just like everyone else. The 175 to 220 was from the previous med change. My god when will the Topomax kick in? Please respond. I am trying to keep my hopes up, the meds are keeping the depression at bay but I don't know for how long if there is no hope from the Topomax. You all know how I am feeling.
>
> Are there other meds that are causing weight gain?
> I know that the antidepresants that I was on all were accompanied with the warnings that they would cause weight gain... and they did...
> oh how they did...
> hence the slow weight loss at the beginning...
> also I would be concerned about the fast increase timetable...
> my neurologist is adamant about the slower rate of increase...
> no faster than two week increments and he tells people not to increase at that rate if they feel they are not ready...
> that could be causing the problem...
> I also have to mention that I hit a plateau when there was no weight loss... then one day discovered that it had started again...
> at the moment I am at such a plateau again...
> and hope it will start again... would like to lose another ten pounds... no more I think...
> hang in there...
> check the other meds and see if they are still weight gainers...
> it may be that the topomax and they are fighting each other...
> could they be changed with others that do not cause gain???
> just a thought...
> kat
Posted by headachequeen on June 18, 2004, at 13:39:25
In reply to Re: Good Grief, posted by bruce_w6 on June 17, 2004, at 17:04:58
> Yes, the meds I am taking are definatly weight gainers. I was hoping that by 200 mg a day the weight loss would have kicked in.
Okay, then, next question:Is there a chance that they and Topomax are battling each other?
and could they be changed for meds that have the same effect but do not cause weight gain?and I still would suggest that you go for the two week increment and not the weekly increment... it is really much more successful...
sign me been there and done that <G>
kat
Posted by bruce_w6 on June 18, 2004, at 13:44:22
In reply to Re: Good Grief » bruce_w6, posted by headachequeen on June 18, 2004, at 13:39:25
Has anyone had to go past the 200 mg dose of Topomax to get the weight loss effect?
Posted by headachequeen on June 18, 2004, at 13:59:55
In reply to Past the 200 mg, posted by bruce_w6 on June 18, 2004, at 13:44:22
> Has anyone had to go past the 200 mg dose of Topomax to get the weight loss effect?
I found the weight loss much more significant after the 200 mg dose if that is any help... I was pleased at the weight loss even at three pounds because it made me feel good about myself... but when I hit the 200 mg and the higher increments it really kicked in and I began to lose weight seriously...
and then I REALLY felt good <GGG>
when I reached 200 mg evenings and started the morning dosages then I began to notice the weight loss begin to kick in seriously and began to think I would be real people again....
kat
Posted by hoax on June 18, 2004, at 14:50:35
In reply to Re: Past the 200 mg » bruce_w6, posted by headachequeen on June 18, 2004, at 13:59:55
I've been on Topamax 400 mg for 1 year now and have had no weight loss, despite it being promised to me by my p-doc over and over.
Recently I switched p-docs, unrelated, and was told that he sees an average of a 20-25lb weight GAIN in the first year on Topamax when used for bipolar. And, that's what I have. 25 lbs more.
Plus, numbness in my fingers (both hands) and cognitive impairement (mostly word finding difficulties). I would say it helps me sleep, maybe it levels me out, I can't tell.
Posted by headachequeen on June 18, 2004, at 15:29:49
In reply to weight gain on topamax, posted by hoax on June 18, 2004, at 14:50:35
> I've been on Topamax 400 mg for 1 year now and have had no weight loss, despite it being promised to me by my p-doc over and over.
> Recently I switched p-docs, unrelated, and was told that he sees an average of a 20-25lb weight GAIN in the first year on Topamax when used for bipolar. And, that's what I have. 25 lbs more.
> Plus, numbness in my fingers (both hands) and cognitive impairement (mostly word finding difficulties). I would say it helps me sleep, maybe it levels me out, I can't tell.
Hmmm... most interesting...
For years I have wondered how the aspirin when taken for a head ache knows it is to attack a head ache instead of arthritis... or when taken to prevent stroke knows it is for that...
there is a commercial on Canadian television now in which the doctor reminds the patient that he is to take one aspirin a day to prevent stroke or heart disease or whatever then tells him to take it for some pain or other... different colour package of course, so now I know that the aspirin is really clever and knows that it is taken for a specific reason....and here you are telling me that the Topomax knows that it is being taken for a specific reason, that is to say for bipolar treatment, so will cause the patient to gain weight???
Help, someone!!! I am in that epistatic or episomething phase that follows a seizure and have a hard time focussing...
why would it cause a person to gain weight for one reason and to lose it for another??? Enquiring minds need to know...I have been on 400 mg a day for a little over a year then was boosted to 600... as the dosage increased (SLOWLY remember <gg> ) the weight began to come off as I lost my interest and cravings and obsession for food... and whatever else accompanied it...
I have to admit that I think the self esteem that came with the weight loss contributes... as I began to look better I began to be more aware of the weight issue and the food issues... and that has to have helped... as in, Hey world!!! I had a hand in this too so I want a pat on the back <GGG>
As the dosage increased, the weight loss increased...
Today I discovered that I am back in the I really don't care about food too much...
my theory is that if I cannot identify the food I want... as in crisp? spicy? vegetable? salad? and so on, then I really am not hungry so shall wait until later... and it works...
I am not emaciated or bulemic or anorexic and I am healthy... healthier than I have been as far as the weight and energy things are concerned, so that is working before anyone wonders...but there is no way that Topomax can figure out why I was prescribed it in the first place and decide that it is going to help me lose or gain weight... I refuse to believe that...
unless I decide to binge eat or something...that is too much Twilight Zone for me... like the aspirin knowing that it is my right ankle I sprained and not my left...
kat
Posted by helenag on June 18, 2004, at 21:22:59
In reply to Re: Has topomax helped, posted by rainy on June 15, 2004, at 21:18:49
> I'm barging in--interrupting really--apologies. I've been on serzone, 400 mgs which is going off market. Stopped taking lamictal and began feeling better but went into mild hypomania--too much energy, needed to paint the hall NOW--3 to 4 hours of sleep OK, that sort of stuff. Better now. On 300 mgs Topamax which keeps me from bulemia and and drinking, although it keeps me in a mild absent minded fuzz. pdoc wants to restart wellbutrin at 400 mgs augmented with 200 mgs trazodone (wellbutrin pooped out on me before serzone came on scene.) Anybody had any experience with this stuff? I don't want to gain weight on deseryl. I don't want to get seriously depressed again. I'm 62 and bpII. again, sorry for interrupting.
>
>
I've been on Topamax for a year, dose at 300mg, which is now at 200mg. At 300mg for several months and then the side effects for some reason really began to get to me. Maybe because I stopped drinking?Topamax helped level my moods. I do put up with side effects: tingling in the feet, the "stupids", dry eyes, tiredness, and yes, I have lost weight from loss of appetite. Infact, today I realized at 3:45pm that I had not eaten yet for the day.
I had asked my pdoc about the side effects and I noted myself that when I accidently forgot my morning 100mg dose, I was not as tired nor as foggy. As an experiment, I skipped that dose for a week and found an improvement in all the side effects except the appetite loss. The cognitive slowness was beginning to really bother me as I couldn't recall names of people, objects, etc.. and it made me look incredibly wierd in front of people who knew nothing about my psych meds. Instead, I appeared like a dip-sh*t. Or like someone on some kind of street drug.
One person's experience....hope it helps rounds out your answer. helen
Posted by headachequeen on June 18, 2004, at 23:30:12
In reply to Re: Cold Heartless Psychiatrists (some not all), posted by helenag on June 18, 2004, at 21:22:59
> > I'm barging in--interrupting really--apologies. I've been on serzone, 400 mgs which is going off market. Stopped taking lamictal and began feeling better but went into mild hypomania--too much energy, needed to paint the hall NOW--3 to 4 hours of sleep OK, that sort of stuff. Better now. On 300 mgs Topamax which keeps me from bulemia and and drinking, although it keeps me in a mild absent minded fuzz. pdoc wants to restart wellbutrin at 400 mgs augmented with 200 mgs trazodone (wellbutrin pooped out on me before serzone came on scene.) Anybody had any experience with this stuff? I don't want to gain weight on deseryl. I don't want to get seriously depressed again. I'm 62 and bpII. again, sorry for interrupting.
> >
> >
> I've been on Topamax for a year, dose at 300mg, which is now at 200mg. At 300mg for several months and then the side effects for some reason really began to get to me. Maybe because I stopped drinking?
>
> Topamax helped level my moods. I do put up with side effects: tingling in the feet, the "stupids", dry eyes, tiredness, and yes, I have lost weight from loss of appetite. Infact, today I realized at 3:45pm that I had not eaten yet for the day.
>
> I had asked my pdoc about the side effects and I noted myself that when I accidently forgot my morning 100mg dose, I was not as tired nor as foggy. As an experiment, I skipped that dose for a week and found an improvement in all the side effects except the appetite loss. The cognitive slowness was beginning to really bother me as I couldn't recall names of people, objects, etc.. and it made me look incredibly wierd in front of people who knew nothing about my psych meds. Instead, I appeared like a dip-sh*t. Or like someone on some kind of street drug.
>
> One person's experience....hope it helps rounds out your answer. helenhmmmm a few things rattling around in this old brain....
first of all, forgetting only one dose would not change things that fast as far as side effects are concerned...
I have on a couple of occasions... well several actually forgotten a morning dose of the anti seizure meds and the side effects do not disappear... the tingling -- oh such a euphemism for electric charges stabbing in my hands and feet thanks to dear old tegretol... I would not wish it on my worst enemy (well, most days)...
the stabbing pains in the abdomen and the nausea do not suddenly disappear because of one missed dose...
and when I was having the cognitive and muzzy thinking side effect of topomax, and the drier eye reaction to it, they did not disappear because I had forgotten it, either...
the excessive thirst never goes away...
I could forget the stuff for a couple of times in a row and that would not go away...I, too, have been on topomax for a year... and have been at 300 mg twice a day for several months now...
the side effects have retreated...
when the side effects did kick in, I simply retreated to the previous dosage until things settled down, gave my system time to adjust, then and only then moved up, as the neurologist had told me to do...I did decide, after reading the warnings that came with the anti-side-effect med to stop taking the tegritol... the side effects that came with the anti-side-effect med were worse than the ones it was supposed to stop... so it seemed to me that the only answer was to just stop taking tegretol and rely on the topomax...
My own doctor had asked the neurologist to change the basic anti-seizure med to one that worked and would not allow breakthrough seizures... still waiting for an explanation of that silly term sigh...
and one that did not require meds to help me live with the side effects... they are truly awful... I had been taking meds to help me survive them long before I met Topomax!!!!!
Instead he prescribed a med that has the SAME side effects only WORSE as a means of combatting the side effects. Now what sense does that make?So I stopped the tegretol and relied upon the topomax...
I had been told or had read that stopped the tegretol would cause the seizures to start again at once...
but I was hoping the topomax would hold them off...
things were fine for almost a week... then it was chaos... seizures began with a vengeance..two a night and three a night and I went crawling back to Tegretol.. don't have to titre up to dosage on it so we just started our old love-hate relationship, moderated by the topomax...
my doctor told me that the topomax had probably kept me from having some really awful nights...
and I don't want to think about it...Someone in this post mentioned the possibility of not drinking contributing to the muzziness... and I wonder if that is not a factor... and if it will not alleviate itself with time and with the body's adjustment?
I was told I could not have coffee or any form of caffeine or other stimulant for 48 hours before that last eeg... this for a person who thinks that coffee is the main food group...
by the time I reached the hospital for that test, my hands were beyond trembling into shaking; I had to keep them jammed in my pockets.
I had not slept for the required 12 plus hours but it was the lack of coffee that was doing it... no coffee and my whole system goes into some sort of serious arrest.
I could go cold turkey on the effexor and zyprexa, but caffeine -- don't even suggest it.
I am an addict and I know it. A day without twelve or more cups is a day that I have slept at least 18 hours.
My mind was a mess until I was able to find the nearest source of coffee and restore the balance and I am not trying to be funny. Sleep was not a problem; I can do without sleep because I am accustomed to that, but no coffee is not something that works for me. My thinking was addled, my responses to the simplest of questions... for instance my phone number and my date of birth... my middle name for heaven's sake... these were things I could not remember because my mind had simply shut down; gone on strike... it needed the caffeine or it would not or could not function...
and I had been off the tegretol and topomax for three days at that point as well... so can't blame either of them... :(In an earlier post someone mentioned handwriting... if your handwriting is impaired or not as tidy as it used to be... try writing one letter at a time... that is how the banks used to have tellers write names and such in the days before computers to be sure that everything was neat and legible and it works...
I have the worst handwriting except when I do that...
and that is something I have used since long before either med to ensure legible handwriting...
can't blame my excuse for penmanship on meds sigh...kat
Posted by bridgey1128 on June 22, 2004, at 10:31:27
In reply to Re: Cold Heartless Psychiatrists (some not all) » helenag, posted by headachequeen on June 18, 2004, at 23:30:12
Has anyone had a liver biopsy for taking Topomax? I have seen it in the literature about it and it says that you should have it done. This is a new drug. It's only been out since 1996 so we REALLY don't know the long term effects. Just wondering. Kat? Any thoughts?
Posted by headachequeen on June 22, 2004, at 13:09:28
In reply to Re: Cold Heartless Psychiatrists (some not all), posted by bridgey1128 on June 22, 2004, at 10:31:27
> Has anyone had a liver biopsy for taking Topomax? I have seen it in the literature about it and it says that you should have it done. This is a new drug. It's only been out since 1996 so we REALLY don't know the long term effects. Just wondering. Kat? Any thoughts?
I have not had one, nor has the neurologist from hades suggested one... for that matter nor has my GP nor the ortho guy and he is careful in the extreme, ordering blood tests and stress tests and any other test he can think of in his wildest nightmares at the drop of a pin just to be on the safe side; I have a session with him tomorrow and shall ask his opinion, though...
am going to ask him about a couple of other things while I am there as well...
have to wait until mid-July to see the neuro about the results of the caffeine- and sleep-deprived EEG -- just tried to book an earlier appointment and was told that the earliest I can get in to see him is in October or November... and that is an EMERGENCY as I am having more frequent break-through seizures... good grief...what happens if a person simply has to see him??? no one seems to understand that there is a medical problem and one would like to see the doctor and get help... that the situation is escalating and that perhaps one is becoming seriously concerned about one's health and welfare...
At any rate, I am going to ask Craig, who is also a friend of long standing and used to my rather bizarre health??? system, if my theory is logical... I seem to have a day or two of sort of grogginess, when all I want to do is sleep or nap; my body is not tired, but my eyes refuse to stay open; they are tired... hard to explain, one has to live it --
then I am hit with a seizure or two during the night...
There is a PSA on television that honours Dr. Wilder Penfield and the work he did towards finding surgical solutions toward some types of seizures, in which the woman smells burned toast before her seizures... well on occasion I do smell something cooking, not toast but a really delicious aroma of roasting meat, but the one I can pin down is this tired eye thing... and I wonder if it is simply a theory or reality... going to ask Craig...and will ask about the liver
biopsy... he will certainly either have an answer of find out the answer for me... and of course if the answer is yes I shall be sticking pins in a doll that looks like you <GGG>
kat
Posted by bridgey1128 on June 22, 2004, at 14:38:38
In reply to Re: Cold Heartless Psychiatrists (some not all) » bridgey1128, posted by headachequeen on June 22, 2004, at 13:09:28
My Dr has yet to order any blood tests or anything of the like. Should I ask him about that? Should I be more concerned that he doesn't seem concerned? I drink plenty of water, I am like a freaking camel, so I am not worried about kidney stones but I was reading up on it. I have started to feel better and the night terrors have stopped. I asked a counselor at our church if she was familiar with Topomax and she said yes. Then I asked her if the night terrors were a common withdrawl symptom and she said that yes she had heard that. I figured since my body really needed to have gone up for so long it was actually going through withdrawl even though I hadn't actually stopped taking it. It's pretty freaking scary to wake up in the middle of the night and see something black and menacing floating above your head! I totally freaked out and screamed out a very LOUD expletive which my husband swears he didn't hear and thankfully my children didn't either!! Well I have been sleeping better too and I think the weight loss has started.. YAY!!! We'll see..thanks for asking about the liver thing...OUCH..hey! that wasn't my liver!!
Posted by TofuEmmy on June 25, 2004, at 19:06:45
In reply to Re: Cold Heartless Psychiatrists (some not all), posted by bridgey1128 on June 22, 2004, at 14:38:38
I noticed you said that your doc had not given you any blood tests. Back in December the US FDA came out with a warning for Topamax telling docs to test their Topamax patients for Metabolic Acidosis. It's rare, but serious. Here is the pdf file to print out and show your doctor. A simple blood test is all that's needed.
http://www.fda.gov/medwatch/SAFETY/2003/topamax_dhcp.pdf
Emmy
Posted by bridgey1128 on June 25, 2004, at 19:54:25
In reply to Topamax and blood test for metabolic acidosis » bridgey1128, posted by TofuEmmy on June 25, 2004, at 19:06:45
Thanks..I read it but I have no idea what metabolic acidosis is. What is it? This seems only to apply to those taking it for epilepsy. I know that sounds stupid but could that be a factor? I make sure I drink plenty of water because of the kidney stone precaution. I think I need to tell my Dr I want a blood test just as a precaution. Anyone else have any info? This was informative but I didn't understand any of it! hehe Thanks
Posted by TofuEmmy on June 25, 2004, at 21:01:27
In reply to Re: Topamax and blood test for metabolic acidosis, posted by bridgey1128 on June 25, 2004, at 19:54:25
Metabolic acidosis has to do with your body's PH level getting out of whack. We need just the right level of acidity for all body systems to work properly. It wouldn't matter why you are taking the medication. (The pdf is in Greek as far as I'm concerned too, but it will make sense to your doctor. Someone else explained it to me!)
Emmy
Posted by headachequeen on June 26, 2004, at 17:56:49
In reply to Topamax and blood test for metabolic acidosis » bridgey1128, posted by TofuEmmy on June 25, 2004, at 19:06:45
> I noticed you said that your doc had not given you any blood tests. Back in December the US FDA came out with a warning for Topamax telling docs to test their Topamax patients for Metabolic Acidosis. It's rare, but serious. Here is the pdf file to print out and show your doctor. A simple blood test is all that's needed.
>
> http://www.fda.gov/medwatch/SAFETY/2003/topamax_dhcp.pdf
>
> Emmy
I tried to check that site, but it is not available... shall add that to my list of questions next time I see one of the doctors...however I have regular bloodwork done, not for the Topomax especially, but for the Tegretol; they check on the amount of Tegretol in the blood stream. The last time the neuro increased the Tegretol he said he was not concerned with the mg/per because the breakthrough seizures had to stop...
well that is easy for him to say...
however, when my regular doctor orders the work he includes the topomax...
so.... I guess he is keeping on top of it too along with the blood sugar questions and thyroid stuff and all the rest of it...
I'll bet he wonders why I decided to pick on him LOL
kat
Posted by Momof4 on July 10, 2004, at 9:47:31
In reply to weight gain on topamax, posted by hoax on June 18, 2004, at 14:50:35
First time to post a message on the board and I noticed that the last message was a few weeks ago. I hope you guys are still around. I started taking Topamax back in Feb. 25mg qhs. for about a month then increased to 50mg, still quite small of a dose. Just recently, last week increased to 100mg at bedtime. My p-doctor has prescribed it for multiple reasons. No sure Dx of Bipolar, but mood swings, depression, nocturnol binge eating, panic, anxiety and 35lbs overweight that I blame the fluctuating doses of Celexa for (well not completely I guess but it sounds good). I have experienced my fair share of crud in my lifetime and yet I am only 35 yrs old. For the first time in a long long time I am feeling alright. Motivated, not finding myself in such a dark cave anymore. Is it the Topamax regime I ask myself, I don't know. Short of the side effects that are driving me nuts sometimes I am a little apprehensive to discontinue the medicine in fear that it is the Topamax that has helped me out. Yes, I feel that dreaded tingling in my extremities and on occassions in my face. I experience a word fumble from time to time, wich I can make excuses for. The thirst factor is hard to tell due to the fact that I drink water all the time, always have and always will. I am a diabetic who has always relied on medication but since the Topamax, have been able to discontinue the diabetic medicine all together and my HA1C was at an unbelievable low. I guess what I am trying to say is that with any medication you take the good with the bad, and as with any medicine what may be good for me may not be good for another. So far so good, and I would be lying through my teeth if I told you that I am not looking forward to dropping weight on this medicine either. On top of the benefits it is providing me, more than anything right now I want to loose weight. I believe now that I have the ability and the motivation to get up and go, it will make it much easier, not to mention that things really taste different now anyway. Has anyone experienced weight loss on 100mg dosage? Enough babbling for now. I am glad to have come across this board and will be even more glad to see that people are still around. :-)
Wishing you all the best
Posted by helenag on July 10, 2004, at 12:57:10
In reply to Topamax, posted by Momof4 on July 10, 2004, at 9:47:31
Topamax has evened out my moods as well, though I am on a higher dose. Just have decreased from 300mg to 200mg. I believe weight loss, as a side effect, does not occur for all patients. Just a caveat, so that you are not disappointed when pounds don't come magically off.
Topamax does have an appetite suppressing side effect that is responsible for the weight loss. This is what happened to me. Don't know for sure how many pounds I lost directly attributed to the drug, as I was very sick and in and out of the hospital many times during the start up of the drug. If I had to guess, maybe a good 20 pounds.
Seems if you are feeling better, weight watchers and walking/exercise would fit in your life now. Glad to hear that the med is working for you.
Posted by headachequeen on July 10, 2004, at 13:48:40
In reply to Topamax, posted by Momof4 on July 10, 2004, at 9:47:31
> First time to post a message on the board and I noticed that the last message was a few weeks ago. I hope you guys are still around. I started taking Topamax back in Feb. 25mg qhs. for about a month then increased to 50mg, still quite small of a dose. Just recently, last week increased to 100mg at bedtime. My p-doctor has prescribed it for multiple reasons. No sure Dx of Bipolar, but mood swings, depression, nocturnol binge eating, panic, anxiety and 35lbs overweight that I blame the fluctuating doses of Celexa for (well not completely I guess but it sounds good). I have experienced my fair share of crud in my lifetime and yet I am only 35 yrs old. For the first time in a long long time I am feeling alright. Motivated, not finding myself in such a dark cave anymore. Is it the Topamax regime I ask myself, I don't know. Short of the side effects that are driving me nuts sometimes I am a little apprehensive to discontinue the medicine in fear that it is the Topamax that has helped me out. Yes, I feel that dreaded tingling in my extremities and on occassions in my face. I experience a word fumble from time to time, wich I can make excuses for. The thirst factor is hard to tell due to the fact that I drink water all the time, always have and always will. I am a diabetic who has always relied on medication but since the Topamax, have been able to discontinue the diabetic medicine all together and my HA1C was at an unbelievable low. I guess what I am trying to say is that with any medication you take the good with the bad, and as with any medicine what may be good for me may not be good for another. So far so good, and I would be lying through my teeth if I told you that I am not looking forward to dropping weight on this medicine either. On top of the benefits it is providing me, more than anything right now I want to loose weight. I believe now that I have the ability and the motivation to get up and go, it will make it much easier, not to mention that things really taste different now anyway. Has anyone experienced weight loss on 100mg dosage? Enough babbling for now. I am glad to have come across this board and will be even more glad to see that people are still around. :-)
> Wishing you all the bestSalut! Every so often I wonder if I have fallen off the face of the earth so far as this message board is concerned and if everyone else is learning stuff that I am missing <GGG> so I am glad to know that it is quiet for periods of time and not just ignoring me :)
I too am diabetic... Type II brought on, no doubt, by overweight that was caused by depression and drug side effects and all that stuff... of course it was not my fault :) well not all my fault...
The Topomax has had some interesting side effects that were not listed in the warnings that were eventually made known to me... by my sister-in-law who took it for a year or so, and by members of this group... the only other warning I had was that my neurologist told me it would help with migraine and would probably cause weight loss (and of course I said that I could not consider a drug that might do that... and if you believe that, then let me tell you about this swampland I have for sale....)
I should also tell you that the side effects of tingling (HA! understatement indeed) were already present and annoying to say the least from the Tegretol that was not really working, hence the decision to try Topomax as well... the Topomax seems to have increased the effect of the Tegretol, but not totally; I still have breakthrough seizures (yes, here she goes, whining again, sports fans... sorry)
but since I started Topomax the breakthrough seizures are fewer and less intense... so Topomax does have a positive effect...I do not find the drastic effects that have been listed and feared here and elsewhere...
however, I have been careful to increase the dosage slowly and over longer periods of time...I, like you, drink gallons of water as I am always thirsty... the restaurants we frequent know me well and the staff are forever bringing jugs of water to the table as soon as we sit down... it must be written on my forehead because even new staff members seem to know about the water person <G>
I have also found that my sugar levels have changed since the Topomax though and I do not understand it... nor does my main physician... but he is not complaining and nor am I...
I am not on meds for my diabetes simply on an exercise, sleep (now that is funny), and food plan... it was not really controlling or changing the weight, oh maybe a few pounds, but nothing like the Topomax has done and it has to be the weight change that has done it because without the excess weight the insulin to blood sugar ratio has to have changed...
I know that at one time as the blood sugar changed my eye sight changed dramatically and I had to get glasses or else... now I have to have the prescription changed, between the surgeries on my eye lids which has eliminated the pressure on my eyes and the extreme dryness and the change in the sugar levels there is a change... I no longer need my glasses unless the sugar levels suddenly go up...
my fatigue levels change too if the sugar levels suddenly jump...
so somehow the two are working together.. wish I could figure out how...I agree with you... one has to take the good with the bad in all these things...
and if something is working then one has to accept the side effects and work with them...and having said that, if the neuro does not change the tegretol when I see him on Wednesday I am changing neurologists because the side effects it causes for me are too much to endure... and that is for me the extreme end of the argument...
I am taking three medications to deal with the side effects which are physically debilitating... I cannot deal with the physical pain and discomfort...
so it has to go; I do not understand how it can be considered such a competent or acceptable medication when Topomax is such a feared one...
to me Tegretol ought to be banished from the earth...
one person's poison and all that...I still wonder about the weight thing with Topomax... it has slowed down... but will it stop entirely???? that could be a problem LOL
kat
Posted by luddy on July 13, 2004, at 6:50:08
In reply to Topamax, posted by Momof4 on July 10, 2004, at 9:47:31
Hi there! I've been on Topamax since Feb. and I also had the tingeling in my fingers, toes & cheeks. I just recently realized it has gone away. I am also on 50mg. (I take it for Migraine prevention). I've also started taking Wellbutrin for depression....so I'm not sure if that Rx has caused the tingeling to stop. Also, does it happen for you every day or not? It would only happen to me every so often.
I also did not notice any change in my appetite, therefore did not lose any weight. But once I started on Wellbutrin....I have absolutely NO appetite and I've lost almost 10 pounds in just a few weeks. I would have to agree with headachequeen. It might also mess with your blood sugar...seems to have changed mine, too! I've become anemic. I feel it's the Topamax...but who knows.
Good luck with everything! Hope this helps.
Posted by headachequeen on July 13, 2004, at 8:26:13
In reply to Re: Topamax » Momof4, posted by luddy on July 13, 2004, at 6:50:08
> Hi there! I've been on Topamax since Feb. and I also had the tingeling in my fingers, toes & cheeks. I just recently realized it has gone away. I am also on 50mg. (I take it for Migraine prevention). I've also started taking Wellbutrin for depression....so I'm not sure if that Rx has caused the tingeling to stop. Also, does it happen for you every day or not? It would only happen to me every so often.
>
> I also did not notice any change in my appetite, therefore did not lose any weight. But once I started on Wellbutrin....I have absolutely NO appetite and I've lost almost 10 pounds in just a few weeks. I would have to agree with headachequeen. It might also mess with your blood sugar...seems to have changed mine, too! I've become anemic. I feel it's the Topamax...but who knows.
>
> Good luck with everything! Hope this helps.Well, mes amis, in the past few days I have noticed that the tingling has stopped. No more electric stabbing in my feet and hands and I can't say I miss it. I am not about to stop my campaign to have the tegretol changed of course!!! I am still relying on the topomax to make the silly stuff work!!! and I keep thinking of the people who tell me about the tingling in the face that comes with tegretol... I have suffered some of the facial tingling.. thank heaven nothing like the tingling I experienced in my feet and hands!!!
But for the moment it has stopped and I am greatly appreciative...However, while the Topomax has the headache situation under control and has shored up the effect of the tegretol, limiting the seizures, they are still happening, one last night and one the night before and I have lost count of the number of them now...
they are at the point now that my legs move during the seizure, no more of these passive seizures... and that is not a happy thought...
so tegretol is not working...
and how can topomax help if the stuff is not working at all???You mentioned anaemia... is this a shortage of B12? it can be dealt with through injections of B12... I have been anaemic for years and getting injections once a month...it increases fatigue when I miss a shot...
I have a suspicion that this may be another redhead thing...
kat
Posted by bridgey1128 on July 13, 2004, at 11:15:41
In reply to Re: Topamax » luddy, posted by headachequeen on July 13, 2004, at 8:26:13
Since I just upped my dosage to the 150mg of Topomax I have noticed the sharp tingling in my right hand. It's the definite needly feeling. It goes away fairly quickly. It normally comes on in the middle of the night.I was thinking that it was because I had slept on it badly because it feels like when you lose circulation and it comes back. That prickly feeling. But then I realized that I hadn't had my hand bent. But it only seems to be my right hand for some reason. My face has the tingles but they are only tingles and not pricklys like in my hand. I thought maybe I shouldn't go up on my meds while I was on vacation but then I had a night terror the first night I was there and I decided...I had better go up! As soon as I upped...no more night terrors. I am worried about the confusion though. I seem to be getting words mixed up more and it worries me. It could also be that I have spent a week with 17 youth and children and it's the "week before" so I am holding out. I am also seeing "floaters" in front of my eyes. Little black dots etc. Is this bad? I have had a headache on the right side of my head behind my right eye but that could also be due to the weather. We have had nothing but thunderstorms and then sun and I am sensitive to the berametric pressure. I wasn't having headaches at the beach and we had nothing but sun down there so who knows but I was having the little floater thingys. I dunno..maybe it's worth being a little crazy than dealing with all these stupid side effects!!!
Posted by headachequeen on July 13, 2004, at 13:23:39
In reply to Re: Topamax, posted by bridgey1128 on July 13, 2004, at 11:15:41
> Since I just upped my dosage to the 150mg of Topomax I have noticed the sharp tingling in my right hand. It's the definite needly feeling. It goes away fairly quickly. It normally comes on in the middle of the night.I was thinking that it was because I had slept on it badly because it feels like when you lose circulation and it comes back. That prickly feeling. But then I realized that I hadn't had my hand bent. But it only seems to be my right hand for some reason. My face has the tingles but they are only tingles and not pricklys like in my hand. I thought maybe I shouldn't go up on my meds while I was on vacation but then I had a night terror the first night I was there and I decided...I had better go up! As soon as I upped...no more night terrors. I am worried about the confusion though. I seem to be getting words mixed up more and it worries me. It could also be that I have spent a week with 17 youth and children and it's the "week before" so I am holding out. I am also seeing "floaters" in front of my eyes. Little black dots etc. Is this bad? I have had a headache on the right side of my head behind my right eye but that could also be due to the weather. We have had nothing but thunderstorms and then sun and I am sensitive to the berametric pressure. I wasn't having headaches at the beach and we had nothing but sun down there so who knows but I was having the little floater thingys. I dunno..maybe it's worth being a little crazy than dealing with all these stupid side effects!!!
The side effects do wear off...at least the tingly ones ... from Topomax that is... and it seems even the dread Tegretol can lose that effect eventually even if it does take three or four years sigh...
the floaters come with cataract but I have not heard of them with topomax... anyone with any input here??? one needs to know as I have cataract that is not ready to be dealt with and am told that I am too young to have it anyway... not my fault; I did not do the diagnosis...
and it will be four years or so before it can be removed... so are the floaters part of that problem or are they relevant to the topomax??? or are they some new twentieth century phenomenon???
I know not funny...
but if we do not laugh now and then we will lose our minds...
topomax is one of the best at dealing with headache problems so I think I would ask an opthamologist about the eye-related headache...
just the opinion of one who has had more eye problems than she cares to remember and is enjoying the clarity of vision that follows the surgery and the lack of threat to her vision that goes with it...
and how fast did you go up to 150???
remember we discovered that we have to move up slowly, and some have to move slower than others... a redhead thing <g> perhaps...
and how do you sleep? is that hand under your head or under your pillow or with your head on it and it under the pillow which could contribute to the tingles??? that could contribure
I have always found that the tingly stuff happens in both hands....
but always like to learn more
As was posted yesterday sometimes we have to accept some of the bad to enjoy the good of these things...
and here we do it together...
kat
kat
Posted by bridgey1128 on July 13, 2004, at 18:39:52
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 13, 2004, at 13:23:39
well oddly enough, the tingling in my hand, the really prickly feeling I felt was when I was lying on my back and my hand was resting on my chest. It wasn't under my head at all. I normally sleep with my hand under my pillow because I sleep on my side. If I had moved at all I would have remembered because unfortunately whenever I move during the night I remember it. Every..single...time.I guess that's why I sleep so hard the rest of the night. When I DO sleep hard I don't move at all. I actually felt it was ok to move up to the 150mg after 2 weeks. I wasn't going to because I was going on vacation but honestly when I woke up in the middle of the night on the first night with a horible night terror because something was coming right at my face and made me sit bolt upright in bed with a scream at the back of my throat...I caught it before it came out...I decided I should probably go on up. I hadn't had the tinglies with the 125mg so I assumed after the 2 weeks that it was ok to go up. If I had had any side effects with the 125 I wouldn't have gone up. I think my body was ready. Anyway, the floaters are worrying me along with this right eye headache. I guess I should go to the Dr or the eye Dr and see if he sees anything. ARRGH. Anyway...
Posted by headachequeen on July 14, 2004, at 12:32:02
In reply to Re: Topamax, posted by bridgey1128 on July 13, 2004, at 18:39:52
> well oddly enough, the tingling in my hand, the really prickly feeling I felt was when I was lying on my back and my hand was resting on my chest. It wasn't under my head at all. I normally sleep with my hand under my pillow because I sleep on my side. If I had moved at all I would have remembered because unfortunately whenever I move during the night I remember it. Every..single...time.I guess that's why I sleep so hard the rest of the night. When I DO sleep hard I don't move at all. I actually felt it was ok to move up to the 150mg after 2 weeks. I wasn't going to because I was going on vacation but honestly when I woke up in the middle of the night on the first night with a horible night terror because something was coming right at my face and made me sit bolt upright in bed with a scream at the back of my throat...I caught it before it came out...I decided I should probably go on up. I hadn't had the tinglies with the 125mg so I assumed after the 2 weeks that it was ok to go up. If I had had any side effects with the 125 I wouldn't have gone up. I think my body was ready. Anyway, the floaters are worrying me along with this right eye headache. I guess I should go to the Dr or the eye Dr and see if he sees anything. ARRGH. Anyway...
Bridgey, ma chere amie, I would guess that you need a little longer between increments...
but the floaters worry me...
I have never heard anyone mention them in regard to Topomax...
anyone is free to jump in with their anecdotes about floaters here....
but they are linked to cataracts...
as for the headache related to just the right eye...
I would see an opthamologist... not just the optometrist but a doctor who specialises in eye ailments... this may be a topomax adjustment thing but it may not be and why fool around with your vision?
tingles come and go... hair loss can be dealt with by taking supplements and using the shampoos and conditioners that are designed for it such as the Joico one my hairstylist recommends... oops she is no longer a stylist but a designer... have to get the terminology correct... sigh...
but vision, especially when it is not a side effect but a problem of its own, is not to be taken lightly...
all these years that I thought my vision problems were a side effect of epilepsy and expected the right dosage of tegritol and topomax to make them go away, only to discover that they were nothing at all related, but were problems of their own and were going to make me lose my sight if I did not get help and get it quickly...
good grief, says my inner self, what else can go wrong????
It is not worth wondering about... asking a doctor is simply practical
in the meantime, try cutting the increase by half... what if you cut back from a 25mg increment to half that??? or as close as that can be managed??? see if that makes it change...
the terrors have to be banished and this seems to help in that respect, so deal with them and work up to the larger dosage and see if that deals with the tingling and look into the floaters...
An optometrist will tell you if the floaters are related to serious eye problems and refer you to an opthalmologist... that is how I was helped...
asked my doctor who said it was not his field to see an optometrist who sent me to the next level who sent me to the really high-powered surgical specialist...and eight or nine, I have lost track, surgical procedures later, I have no more problems other than the cataracts that I am too young to have and that are not ready to be dealt with... hence the floaters that occur every so often and the spider-web-effects on occasion...
but no more seeing things in sepia tones and no more pressure on my eyes and no more feeling as if someone is trying to drive a spike from the top of my skull through my right eye -- what a relief that is...
kat
Go forward in thread:
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
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.