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Dr. Bob is Robert Hsiung, MD,
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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
Posted by bridgey1128 on July 14, 2004, at 12:59:08
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 14, 2004, at 12:32:02
well I am also wondering if the headaches are also due to this is the week before my period which is also common..the headaches also come with weather changes which we have had so I have no idea. The floaters have gone away from what I can tell so that is good and so has the sharp tingling. It's time for an eye appointment anyway so I will tell him about it when I go. The only way the night terrors go away is staying at this dosage. If I go back down they will return. I went up for about two days and went back down because I chickened out thinking I didn't want to risk the losing the eyesight possibility when I was on vacation but then the night terrors set in and I was like....OH CRAP...I had better go up..I can't handle this nonsense...so as soon as I went up they went away. Now the headache is in the middle of my forehead so I am thinking that it's weather related..ugh.....it's hard wondering if it's just general freakiness or side effects...ah the life of a redhead..oh and I just cut off 11 inches a week and a half ago for locks of love :) best thing I ever did..well cutting my hair wise I recommend anyone doing it!
Posted by headachequeen on July 14, 2004, at 15:09:38
In reply to Re: Topamax, posted by bridgey1128 on July 14, 2004, at 12:59:08
> well I am also wondering if the headaches are also due to this is the week before my period which is also common..the headaches also come with weather changes which we have had so I have no idea. The floaters have gone away from what I can tell so that is good and so has the sharp tingling. It's time for an eye appointment anyway so I will tell him about it when I go. The only way the night terrors go away is staying at this dosage. If I go back down they will return. I went up for about two days and went back down because I chickened out thinking I didn't want to risk the losing the eyesight possibility when I was on vacation but then the night terrors set in and I was like....OH CRAP...I had better go up..I can't handle this nonsense...so as soon as I went up they went away. Now the headache is in the middle of my forehead so I am thinking that it's weather related..ugh.....it's hard wondering if it's just general freakiness or side effects...ah the life of a redhead..oh and I just cut off 11 inches a week and a half ago for locks of love :) best thing I ever did..well cutting my hair wise I recommend anyone doing it!
Bridgey, the headaches could be weather-related... migraines are triggered by changes in barometric pressure and can be triggered by changes in weather... and I think that cluster headaches have similar causes...
Since I began taking Topomax I have not had a headache so I have begun to forget all the information that they piled upon me about headaches... and can't say I miss it :)Do check on the eye stuff though when you have the chance...
I was wearing my hair in a chin-length bob and that was a change for me, then one day decided I wanted a radical change of style and had it cut really short and sort of spikey...
and I am enjoying the change totally...
now I am trying to decide what to do with it next...enjoy the change of style...
I remember when I had almost eight pounds of hair cut off... my hair is so thick and it was soooo long...
no wonder I had headaches and neck problems then LOLand if the terrors are gone with the increased dosage then let's deal with the side effects...
we know we can do it... somehow.. together
kat
Posted by summer2002 on July 14, 2004, at 15:26:16
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 14, 2004, at 15:09:38
OK - I am suppose to be running out the door to pick up daughter but just read all your postings. I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.
Have to run...
Posted by Momof4 on July 15, 2004, at 13:47:32
In reply to Re: Topamax, posted by summer2002 on July 14, 2004, at 15:26:16
OK - I am suppose to be running out the door to pick up daughter but just read all your postings. I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
> One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
> Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
> Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
> I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.
Have to run...Wow, I read the post as they steadily flow in and see that the side effects are enough to drive some people to just stop taking the medicine. I consider it every day, as I watch my hair go down the shower drain. I have given myself a time frame from today. 4-6 months weighing out the pros and the cons (of course if I don't show any baldness prior to that). From there I will make a long term decision. I have noticed that my night eating has decreased to maybe one time a week, the "tingles" have also subsided for the most part. As for the weight loss, nothing! As a matter of fact between the other medications I am taking and my schedule my eating habits have declined to that grab and go style but my stomach is always saying "Feed me". I wonder if the timing of the medication has any play in the effects. I take my medicine between 7-8 pm, I never feel any different after taking it but maybe I should try to take it a bit earlier. I can say one thing, my moods are up and down like the sun. Seems like if I don't make the extra effort to be somewhat happy today, I won't pull out of it for days. Perhaps 100mg isn't doing the job and my next appt with my dr. isn't after Labor Day due to my schedule. Oh well. Wishing everyone the best of the best.
Posted by headachequeen on July 15, 2004, at 14:28:05
In reply to Re: Topamax, posted by Momof4 on July 15, 2004, at 13:47:32
>
> Wow, I read the post as they steadily flow in and see that the side effects are enough to drive some people to just stop taking the medicine. I consider it every day, as I watch my hair go down the shower drain. I have given myself a time frame from today. 4-6 months weighing out the pros and the cons (of course if I don't show any baldness prior to that). From there I will make a long term decision. I have noticed that my night eating has decreased to maybe one time a week, the "tingles" have also subsided for the most part. As for the weight loss, nothing! As a matter of fact between the other medications I am taking and my schedule my eating habits have declined to that grab and go style but my stomach is always saying "Feed me". I wonder if the timing of the medication has any play in the effects. I take my medicine between 7-8 pm, I never feel any different after taking it but maybe I should try to take it a bit earlier. I can say one thing, my moods are up and down like the sun. Seems like if I don't make the extra effort to be somewhat happy today, I won't pull out of it for days. Perhaps 100mg isn't doing the job and my next appt with my dr. isn't after Labor Day due to my schedule. Oh well. Wishing everyone the best of the best.
>
>Oh, dear, I am trying to put my memory to work here and it is a difficult thing to do...
nothing to do with cognitive skills, more a mood thing...
it seems to me and now I wish I had kept the information sheet the neurologist had given me when he first prescribed topomax but once I got onto the schedult I threw out all that stuff, after all I had it all down pat, right????
Still, I take the topomax at bedtime and once I started taking it in the mornings too, it was as soon as I got up...
and that was the prescribed schedule as near as I can remember...
I do remember that when I started I had the idea I should start it mornings and I was sooooo sick... then I went back and re-read the info...
and there it was: start at night...
so I switched the timing and had no more nausea from it...
all I had to do was follow the directions...
and odd as it may seem, I could differentiate between the constant discomfort and nausea of the tegritol side effect and this sudden nausea that came with the mis-timed topomax...So, try taking the topomax later in the evening... as in at bedtime... I take mine around eleven when I am getting ready to go to bed and read for a few hours...
sleep is often an elusive thing for me... stress and fear of seizures combine to keep me awake until early morning (if I sleep during the morning I won't have nocturnal seizures, right??? yeah, I know...)As for schedule and eating... well, I don't think anyone can have as weird or wild a schedule as mine as I try to fit training and work and writing and time for a husband and all the community involvement that goes with work (goldfish bowl stuff) and practising and and and into my life and still try to have a life myself... I have found it easier not to eat actually I don't really eat breakfast other than coffee; lunch is somewhere around three in the afternoon (today it was a banana and a muffin, yesterday it was a salad with chicken and cheese in it... depends upon the mood and the hunger degree) dinner can be anywhere between seven and morning and may be a serious meal or a scrambled egg...
very often since the topomax I find that I am not even hungry... but when I find that I feel rather weak and dizzy then it is time to eat something...
lately I am on a no-lose time again... and that is not all bad really... but the food patterns are still not great really...
have to set a proper schedule... just as I think that you should too...
your body is hoarding fat cells to make sure it doesn't have a famine coming and that does not help...
most people find that topomax affects the appetite and they find a change in their eating patterns... for me it is a trend away from the junk food of my radio days and depression days and a trend away from eating for the sake of eating... that in itself is a great bonus.
No more finding myself with sandwich in hand thinking that I don't want it, don't like it but eating it anyway...
Some of the other meds may have a weight attraction composite too... perhaps there is an alternative to those meds????kat
Posted by headachequeen on July 15, 2004, at 14:32:32
In reply to Re: Topamax, posted by summer2002 on July 14, 2004, at 15:26:16
>>I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
>
> One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
>
If there is no reason for these floaters and no damage to the eye, then they may go away on their own... indeed should go away on their own... what did the eye doctor say about them???? and their shelf life????> Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
how fast did you increase the dosage??? cognitive skills are impaired by topomax but usually we hear from people so affected, for short term only... I know that I for example found it a problem for a bit but after I quit panicking, it went away and things returned to normal... and that is important for me... believe me!!!!!!!
>
> Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
>Someone else here mentioned that it does affect asthmatics on occasion... but I cannot remember who said it or what the effect was...
where are our super memories??????
we need you.....
> I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.again the answer may be to increase at low increments over slow time period.....
kat
Posted by bridgey1128 on July 16, 2004, at 19:05:51
In reply to Re: Topamax » Momof4, posted by headachequeen on July 15, 2004, at 14:28:05
I have found that as I have gone up all of a sudden my FACE has broken out! EGADS! I didn't even have acne this bad when I was a teenager! This is horrid. I am coping best I can and it's just on my chin. no where else really except a tad on my forehead. Since I have gone up to the 150mg I have noticed finally my appetite dropping. It's like, when I DO eat I am hungry but I could go all day and not eat if I didn't happen to think about it. If my stomach grumbles I think..oh yeah I had better eat. I take mine split up. 100mg at night and 50mg in the morning. I have never had nausea with mine at any point. The tingling has gone away but every now and then I see a floaty. The headaches have gone away with the weather so I am assuming that was what it was. I have noticed my anxiety has come back though. Is it because it's the week before you know what? I geuss we shall see. I have been really paranoid this week. It's driving me bonkers. I have some Ativan that I take when I feel that knot in my stomach. Otherwise I feel downright nauseous from that. I can't take it long before it stops working, so I just take it whenever I feel it coming on. I have had some serious anxiety attacks before and they are NOT FUN! I get really moody and I start literally wringing my hands. I had never heard of the losing the hair side effect. I have always shed like a sheepdog so that wouldn't mean much to me. Of course, I have always had plenty to lose though. Anyway, I've rambled enough :) ta ta
Shell
Posted by andie1970 on July 18, 2004, at 15:32:58
In reply to Re: Topamax, posted by bridgey1128 on July 16, 2004, at 19:05:51
I'm so glad to find this string of posts. I started topamax about ten days ago, on 25 mg, then on 50 mg after about 5 days. I felt so great after the first few days, no appetite, and no desire for alcohol! no side effects. what a wonder drug, no head aches. Then the nurse told me to start one in the morning and one at night, and i did, and that's when the terrible heartburn started. I am burping like crazy, icky bile kind of burps which make me feel nauseous. So it's not just that nasty taste in the mouth, but the constant burning. So I began taking them both at night, and taking zantac. It seems to be a little better, but I still am burping, not a bad, but bad enough where it's burning, and feel still nauseated and am wondering if anyone else went through this? Am crossing fingers either it goes away OR can you take something with it at the same time? Can I take zantac at the same time, or calcium magnesium supplement at the same time? I'm wondering if anyone has found anything that would work and I know ginger ale and seltzer used to work for my stomach, but I read that those are horrible with this medication. I've been reading Zonegran has many less side effects, but I'm willing to wait a little longer with this before changing. if anyone has any suggestions, I'm all ears! (all heartburn too!) Thanks!
Posted by heathermom on July 18, 2004, at 16:01:34
In reply to Re: Topamax » luddy, posted by headachequeen on July 13, 2004, at 8:26:13
hello all. i posted here several months ago inquiring about topomax's side effects. i check back regularly, and i have practically every side effect that you all have. i am currently taking 300mg. /day for bi polar disorder. it has worked wonderfully, and the side effects have pretty much subsided. my binge eating has all but gone away. i have not lost any weight, but my weight is steady and under control. (yea!!) i wasn't overweight to begin with, so this is a victory. the tingly feelings are few and far between, and the stupids have faded. one thing i am curious about that i haven't heard anyone mention......
i used to crave junk like the dickens. chips, cake, ice cream, crackers. if it was processed, i wanted it. now, all i want is freah food. fresh fruit, veggies, oh God, i would kill for avacado, or whole milk yogurt!! i go to the whole foods market...i would never go there before. my kids get a candy bar, and i get a banana. and i WANT this! anyone else experiencing this kind of stuff? it's crazy, i tell ya. i just don't know what to think. i go out to eat, and i am voluntarily NOT eating the deep fried stuff, and I DO NOT want to eat at mcdonalds....and that used to be my favorite place. it makes me sick to think of that place now. i would rather stay home and prepare a nice bean burrito.
there, anybody get what i mean???
ok. i hope that made sense. best luck to all of you. i know i kind of left the subject. i'm sorry. happy trails! heather.
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