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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on June 16, 2004, at 16:18:44
In reply to Re: Has topomax helped, posted by bridgey1128 on June 16, 2004, at 15:23:00
> I'll stick with it girl because I know you have been through it all! ;) thanks
And you will get there... just take your time... do not rush it... and be confident about yourself... that is our problem, isn't it <s>
and when you need someone to talk with... well, you know where to find me...And remember too, in those days when the cognitive skills are kicking in (and for those of you whose hair on back of neck is beginning to rise, Bridgey and I have been through a lot together, we know that the best way to get through it is with laughter and a sense of humour and the odd joke... if we lose that sense of humour then EVERYTHING is lost...and we can and do joke with each other... I am a Gael; that which is most important we treat with humour..)
that the secret is to progress slowly...
no sudden increases...
25 mg increases in the evening until half the maximum increase is achieved, then start the same climb in the mornings until the entire maximum increase is achieved and it seems to work all right...Now if I could find a way to turn off the mind that actually works for ME and sleep at night...
I am not depressed at the moment although I think I shall soon slide into a deep dark hole if I do not sleep and sleep properly...I am doing all the things they tell me to do...
I get up in the morning by nine o'clock... some days I am up even earlier...I am walking a lot as usual... and still shooting pool and doing the agility and tracking, am doing scales and arpeggios and the breathing exercises and all the rest of it and ask any singer who works at it if that is not exercise....
I am working at writing and am turning out some reasonable stuff again... instead of sitting back and saying that until I get myself together I cannot work the way I was doing before...
I am planning on going back to take the next level of that wild and woolly through the brambles and briars and barbed wire and culverts and mud and whatever else presents course...
I am in short being extremely positive...
so why am I not sleeping at night?
Around eleven I am so tired I can barely make it up the stairs to bed. I fall into bed and into sleep, then by one o'clock I am awake and That,as Jonathon John said, is THAT... I am awake and cannot sleep until somewhere around six or seven when I am supposed to be awake and doing things so that I do not fall into depression....
wish I had a switch that I could turn or press that would turn off the brain and make it stop spinning and rehashing things...
it would be so much easier....
kat
Posted by bridgey1128 on June 16, 2004, at 17:28:45
In reply to Re: Has topomax helped » bridgey1128, posted by headachequeen on June 16, 2004, at 16:18:44
I know what you mean. I have a constant race going on in my head and it's so hard to get it to just stop. I sit there and try to imagine a blank wall or something but then I just end up imagining something on it or painting on it or something else to start the race again. I fight trying to take a nap during the day because I know that I DEFINITELY won't sleep much that night. I constantly toss and turn anyway and I almost ALWAYS remember every single time I turn over. If I don't remember turning over, it's most likely that I haven't moved and I will be very very sore the next morning. It's like, if I sleep well I don't move and I am so stiff I can barely move the next morning because of my fibro mialgia and if I don't sleep well, well...I toss and turn all night but at least I am not as sore in the morning because I haven't been in one position all night. I need to get back to the chiropractor but it costs $$$. On a good note my band is making a demo and after more than a MONTH of mixing the instrumental parts..JEEZ MON! I get to go back in and do my vocals next Tuesday night. I'm excited! I've made a demo before but it was only with a track, not with my own band and with live instruments. If you ask me it's taken them way too long to mix it correctly. It's been more than a month. Kat I know you would know about that. Welp enough from me now..I guess I'll see how the 125mg goes!
Posted by headachequeen on June 16, 2004, at 19:38:39
In reply to Re: Has topomax helped, posted by bridgey1128 on June 16, 2004, at 17:28:45
> I know what you mean. I have a constant race going on in my head and it's so hard to get it to just stop. I sit there and try to imagine a blank wall or something but then I just end up imagining something on it or painting on it or something else to start the race again. I fight trying to take a nap during the day because I know that I DEFINITELY won't sleep much that night. I constantly toss and turn anyway and I almost ALWAYS remember every single time I turn over. If I don't remember turning over, it's most likely that I haven't moved and I will be very very sore the next morning. It's like, if I sleep well I don't move and I am so stiff I can barely move the next morning because of my fibro mialgia and if I don't sleep well, well...I toss and turn all night but at least I am not as sore in the morning because I haven't been in one position all night. I need to get back to the chiropractor but it costs $$$. On a good note my band is making a demo and after more than a MONTH of mixing the instrumental parts..JEEZ MON! I get to go back in and do my vocals next Tuesday night. I'm excited! I've made a demo before but it was only with a track, not with my own band and with live instruments. If you ask me it's taken them way too long to mix it correctly. It's been more than a month. Kat I know you would know about that. Welp enough from me now..I guess I'll see how the 125mg goes!
Oh Bridgey!!!!!!!!!! No wonder your mind is racing right now... or better put, at least there is a reason for it at the moment...
this is great news... I can hardly wait to hear that the demo is finished and how it is received...
and then I hope I get to hear the real thing...
this is great news...my favourite accompanist and I are putting together a cd... well we are organising two lineups... one is a Christmas one of medieval Christmas stuff... then we get lost on other French Christmas and Gaelic Christmas music we find it hard to resist...
there is this problem about saying no... is that a Topomax thing or an F-7 thing I wonder?????and the other is early music... again older and lesser known Celtic music, laments for the most part not the popular and commonly known stuff but the music I grew up with and love so dearly.. mostly in the minor keys and really powerful for all that... a couple of funeral boat songs that are incredible...
then we get hung up on torch songs that we have lately discovered we really like playing ... a new venture for a dramatic soprano LOL...
so we will be cutting the CD once we decide for sure what we want to do...
I think THAT is definitely an F-7 problem.LOL...
but it is another of those things that spins in my mind late at night as I try not to toss or turn because that keeps the husband-person from sleeping... and he worries... he has lost so much sleep and weight as it is worrying about me that it is really unfair to add to it...
some nights I simply get up and come in here and write for a while... seems to make sense to stop beating myself to death over not being able to sleep...
other nights I go downstairs and go through music trying to cut the list down to something manageable...
we are using two instruments and voice...
accoustic guitar and piano... concert grand on some and good old upright on others...
all we have to do is decide what the definitive choices are...but the music is such a saving grace, isn't it...
we are fortunate, you and I...
keep me posted... I am waiting anxiously to hear how it goes... and to know what happens after the cd is cut...
I know that you are going to blow them away... it is a redhead thing, after all....
kat
Posted by rainy on June 16, 2004, at 20:38:33
In reply to Re: Has topomax helped, posted by bridgey1128 on June 16, 2004, at 13:48:29
Bridgey, I remember that when I was going up on Topamax I was what my husband called "hostile,"--I just felt mad at the world. I went up in small increments so I seemed to be mad all the time--it was lovely. The doctor took me off of 350 mgs when I complained of ruminating and carrying on conversations in my head and getting lost and stuff like that, but then she put me back on a few months later. The second time my brains weren't nearly as scrambled and most of the neuro stuff has been motor snafus. That and a loss of "executive functioning" which makes me a hazard in working with an emotionally disturbed teenager which I don't want to do anyway. Also I can't do cash registers, remember lines, or speak fluently in public any more--the latter gives me grief because I loved to do that. But to answer your question (again): I was crabby tritrating up. Topamax hasn't interfered with sleep. Sometimes, though, I wonder if I'll ever be me again, whoever that was/is. Topamax philosophy? Lately I've been feeling like I've sold my soul to it's apparent ability to help me maintain my weight and stay off the sauce. After years of struggle with AD weight and a few years with hard drinking, I just can't go back to that. But I don't know if I would if I didn't take Top. Time to get a life. And good luck to you.
Posted by bridgey1128 on June 16, 2004, at 20:52:54
In reply to Re: Has topomax helped » bridgey1128, posted by headachequeen on June 16, 2004, at 19:38:39
I understand the voice stretching capability thing. I am a classically trained lyric 1st soprano and here I am having to sing songs like..White Room by Cream. We aren't really a cover band because our "director" for lack of a better word arranges them so different from the original and adds the instrument solos and such that they don't sound a whole lot like the originals. I think it's really helped my vocal abilities in the long run because I have had to stretch my chest voice range upward. Whereas before I could usually only get up to a G and sound pretty good I can now get up to a D. I wouldn't do this for church music now. It's just a total different sound to my voice for this style. It really helped me when I was playing Bloody Mary in South Pacific in Feb. That was so much fun! I found out that we, and when I say we I mean our High Point Community Theatre, are doing Into The Woods. I'm excited! Each show I get a better and better part. One day I will get a true lead. Bloody Mary was a lead technically but I wanted her. She was SOOO much more fun to play than Nellie would have been. I love to be able to play a character with depth. Bloody Mary was so funny but so intelligent. I got to do funny and serious in one role while maintaining a rather humorous Tonkinese accent. Now if you can make them gasp at the seriousness of the scene without laughing at your accent you know you have accomplished something. I belong to a site called rifftrader.com so when I get the final demo up I will let you know so you can hear it. :) I love celtic music. Gee, it must be something in the blood. hehe Or the hair. hmm Charlotte Church does a Welsh lullaby that is SO beautiful and I would love to sing..but I think if I tried to sing in Gaelic I would sound like I was hacking up a hairball. I have a Scottish friend and he said inevitably when someone tries to immitate a Welsh accent they end up sounding Pakistani. haha Oh yeah..this site has soemthing to do with Topomax doesn't it? hehe
Posted by bruce_w6 on June 17, 2004, at 10:47:32
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
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.
Posted by bridgey1128 on June 17, 2004, at 11:25:14
In reply to Good Grief, posted by bruce_w6 on June 17, 2004, at 10:47:32
I have really found that the Topomax does more for my "mania" than for my depression. I have still hit some pretty dark depressions, but they don't last nearly as long. I have still been suidical a couple of times. I don't ever want to tell my Dr this for fear of being put in the looney bin. It's nothing I would act on thankfully. My Dr upped my meds to 100mg at night and 25mg in the morning and then he said in 3 weeks 100mg at night and 50 in the morning so we shall see how that goes. I know I need to go up on the meds because I have been really really cranky and the talkative impulses are back. You know the ones..where you just can't shut your mouth and you end up saying stupid, hurtful things without meaning to. I've tried REALLY hard to bite my tongue. Thank God for Ativan. It kind of mellows me out. Because I am bipolar I can't take it very often or it stops working..that and it's addictive so I just take it every now and then when I feel really edgy and irritable. My "depression" isn't so much sadness as irritation and edginess. I get really snappy. When I do get sad it's an angry sadness, so I guess all my depression has to do with anger. My emotions flip on and off like a lightswitch. I don't normally stew unless something hasn't been resolved. If it has, then I am over it pretty much immediately. Hopefully it will help your depression. I know it's kind of a catch-22 when you get depressed because of your weight or it causes you to STAY depressed because you gain weight. How ironic that a treatment of depression actually can cause you to stay depressed. I guess I am happy I am bipolar and not just depressed. Topomax has helped me not gain anymore weight. So far it hasn't helped me LOSE any. My Dr was happy when I had gone in and had lost 15lbs and he thought it was due to the Topomax and I said..uh no..I have been on the Atkins..hehe oops! sorry to burst his bubble!I think maybe it has kept me from GAINING more so that's good. Since my weight has always been a major cause of my depression part of my bipolar I absolutely refuse to take any drugs that would make me gain. I just don't see it being helpful for me to gain weight to keep from being crazy. I'm bipolar 2. I ain't THAT crazy!
Posted by PoohBear on June 17, 2004, at 12:11:41
In reply to Good Grief, posted by bruce_w6 on June 17, 2004, at 10:47:32
> 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.<
I have gained a total of 20 lbs from meds and med induced eating over the last 6 months. 15 of that was from Remeron. My pDoc and I tried Topomax to try to help with my moods and to get the weight down, but like many others, it just made me feel "doppy" and slow upstairs. I finally gave it up and went with Seroquel for mood and sleep. Much better, except for slight grogginess in the morning. (This morning was worse than most because I have a head cold...)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.
I know this is NOT what you wanted to hear, but you might want to look at other options with your pDoc. You didn't mention why you're taking Topomax, except for weight loss. There may be better options.
I really do feel your pain and can empathize completely. Personally, I'm going to have to exercise more and cut back on the carbs.
Best Wishes!
Tony
Posted by headachequeen on June 17, 2004, at 13:07:12
In reply to Good Grief, posted by bruce_w6 on June 17, 2004, at 10:47:32
> 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 17, 2004, at 13:09:47
In reply to Re: Has topomax helped » bridgey1128, posted by rainy on June 16, 2004, at 20:38:33
> Bridgey, I remember that when I was going up on Topamax I was what my husband called "hostile,"--I just felt mad at the world. I went up in small increments so I seemed to be mad all the time--it was lovely. The doctor took me off of 350 mgs when I complained of ruminating and carrying on conversations in my head and getting lost and stuff like that, but then she put me back on a few months later. The second time my brains weren't nearly as scrambled and most of the neuro stuff has been motor snafus. That and a loss of "executive functioning" which makes me a hazard in working with an emotionally disturbed teenager which I don't want to do anyway. Also I can't do cash registers, remember lines, or speak fluently in public any more--the latter gives me grief because I loved to do that. But to answer your question (again): I was crabby tritrating up. Topamax hasn't interfered with sleep. Sometimes, though, I wonder if I'll ever be me again, whoever that was/is. Topamax philosophy? Lately I've been feeling like I've sold my soul to it's apparent ability to help me maintain my weight and stay off the sauce. After years of struggle with AD weight and a few years with hard drinking, I just can't go back to that. But I don't know if I would if I didn't take Top. Time to get a life. And good luck to you.
Just to play the devil's advocate here...
could it be that we are now freed from the problems that led us to Topomax and have become who we might have been had the problems not developed????
just throwing that out for debate.....
kat
Posted by headachequeen on June 17, 2004, at 13:21:18
In reply to Re: Has topomax helped, posted by bridgey1128 on June 16, 2004, at 20:52:54
> I understand the voice stretching capability thing. I am a classically trained lyric 1st soprano and here I am having to sing songs like..White Room by Cream. We aren't really a cover band because our "director" for lack of a better word arranges them so different from the original and adds the instrument solos and such that they don't sound a whole lot like the originals. I think it's really helped my vocal abilities in the long run because I have had to stretch my chest voice range upward. Whereas before I could usually only get up to a G and sound pretty good I can now get up to a D. I wouldn't do this for church music now. It's just a total different sound to my voice for this style. It really helped me when I was playing Bloody Mary in South Pacific in Feb. That was so much fun! I found out that we, and when I say we I mean our High Point Community Theatre, are doing Into The Woods. I'm excited! Each show I get a better and better part. One day I will get a true lead. Bloody Mary was a lead technically but I wanted her. She was SOOO much more fun to play than Nellie would have been. I love to be able to play a character with depth. Bloody Mary was so funny but so intelligent. I got to do funny and serious in one role while maintaining a rather humorous Tonkinese accent. Now if you can make them gasp at the seriousness of the scene without laughing at your accent you know you have accomplished something. I belong to a site called rifftrader.com so when I get the final demo up I will let you know so you can hear it. :) I love celtic music. Gee, it must be something in the blood. hehe Or the hair. hmm Charlotte Church does a Welsh lullaby that is SO beautiful and I would love to sing..but I think if I tried to sing in Gaelic I would sound like I was hacking up a hairball. I have a Scottish friend and he said inevitably when someone tries to immitate a Welsh accent they end up sounding Pakistani. haha Oh yeah..this site has soemthing to do with Topomax doesn't it? hehe
Yep.. it does indeed... and let's admit it... without the stuff you and I would be somewhere out there wishing we were able to do the things we used to do... and sighing for the good old days...
I have done Lola and Nellie F. and Maria in Sound of Music... and in Westside Story... and then had the great fun of doing Buttercup in Pinafore and she was a riot...
so much more fun that Nellie ... although in those days I was about 100 pounds and young... and having been a baby farmer to the Captain of the ship and mixing him up with the sailor who wanted to marry the captain's daughter had to be a lot older and weighed a lot more... but poetic licence took over I guess LOL.. and it was such a fun person to sing...
Bloody Mary would be such a character... I envy you...
Lola is someone I could almost play again as far as size goes...age??? well, I am not sure...LOL
but the Topomax has returned a lot of the self esteem so who knows???It really has helped...
in so many ways...
and the Gaelic music is fun to do... it is a thing I have done from childhood so easy... but we are doing translations so people can understand it because the music is so rich that the words need to be understood... well I know what I mean.. maybe the cognitive skills have been zapped after all???????I am anxious to hear this cd and I know how hard it is to come back after the weight thing.. that does attack one's sense of self in so many ways... at least it did mine...
one can be fat and sing in church but not in the rest of the world at least not in my world... and now it is great...for my daughter's wedding I chose the music...
Mhairi's Wedding instead of the old and overdone Wedding March,Borning Cry, L'hymne a L'Amour, May You Always and for leaving the church, instead of the other wedding march, Go Now in Peace ....
then she asked if I would be her soloist...
before Topomax I would have refused...
no way would I have stood in front of a crowded church all 209 pounds of me...
but 155 pounds of me did...and in a black dress and purple jacket at that in that goddess fabric and felt like a human being at the feast...The weight issue is as much a part of the treatment for the epilepsy as are the seizures I think...
of course having had another breakthrough seizure last night I am not sure the epilepsy is being beaten...
and why are they called breakthrough seizures...
to me a breakthrough is a discovery, a success???on the flip side, I am applying to go back to work in radio full time...
another topomax breakthrough
LOL
kat
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
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