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Dr. Bob is Robert Hsiung, MD,
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Posted by bridgey1128 on April 22, 2004, at 9:30:17
In reply to Re: topomax, posted by bridgey1128 on April 6, 2004, at 16:17:14
I have noticed less of a sex drive with the Topomax. This is kind of a problem since I normally have such a high libido. I have noticed coginive difficulties with the Topomax and this is frustrating. Sometimes I can't think of the most simple words! I feel downright stupid and lose track of what I was saying right in the middle of a...........
Posted by bridgey1128 on April 22, 2004, at 9:33:03
In reply to Re: topomax, posted by bridgey1128 on April 22, 2004, at 9:30:17
Thankfully I haven't lost my sense of humour :P My mind yes...my humour..no. What a trade!
Posted by bruce_w6 on April 22, 2004, at 19:17:06
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
anyone with the racing mind thing that comes with bi-polar 2? I think it's a form of mania.
Posted by bridgey1128 on April 22, 2004, at 19:46:19
In reply to Has topomax helped, posted by bruce_w6 on April 22, 2004, at 19:17:06
I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes. I would have to stop myself from thinking about horrible things happening to our kids or family and friends. I would think up stupid arguments and just have these arguments in my head with people! I still have a hard time calming down at night but at least I can calm down faster. It's easier for me to put my mind to rest and not think about 15 million things at once. My "mania" is excessive talking and being hyper around my friends or lots of people. I am a real people person but I know that I could get on people's nerves from being so talkative. I am still talkative but I don't feel like it's edgy and impulsive. Before I felt like I HAD to talk. Now I can just be myself and enjoy being in the conversation. I don't feel like I have to be talking the whole time.
Posted by lorilu on April 23, 2004, at 12:14:30
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
> I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes. I would have to stop myself from thinking about horrible things happening to our kids or family and friends. I would think up stupid arguments and just have these arguments in my head with people! I still have a hard time calming down at night but at least I can calm down faster. It's easier for me to put my mind to rest and not think about 15 million things at once. My "mania" is excessive talking and being hyper around my friends or lots of people. I am a real people person but I know that I could get on people's nerves from being so talkative. I am still talkative but I don't feel like it's edgy and impulsive. Before I felt like I HAD to talk. Now I can just be myself and enjoy being in the conversation. I don't feel like I have to be talking the whole time.
I also was exactly like you before Topamax! Plus I would be trying to think what they were thinking and interrupting and it was a big mess. I knew I was annoying and wanted to make and keep friends at the teacher's lounge so instead of being part of the conversation I ended up just repeateing in my head "Dont talk" over and over again. I was going crazy before Topamax but I didn't know this could be a Bipolar thing. I loved my Topamax but could never really explain why to my pdoc, probably because I can never remember anything on 400mg of Topamax. I better print this. (smile)
Posted by bridgey1128 on April 23, 2004, at 17:27:14
In reply to Re: Has topomax helped, posted by lorilu on April 23, 2004, at 12:14:30
That's why I figure I had better stop at 100mg. I still have a few symptoms and it's not totally under control but I can manage. What I CAN'T manage is not being able to concentrate and forget things half a second after I think of them. My husband gets frustrated because I will be telling him something and then something will get my attention and then BOOM...it's gone and he's like...What! What were you saying? And I say...Oh..um...I have no idea. So I would rather be talkative and enjoy my mania a tad than be totally forgetful. I just can't with 2 kids. That is a really bad side effect with this medication. The concentration thing. I keep telling my husband..I'm sorry...it's the medication..I think he thinks I am just making excuses.
Posted by headachequeen on April 30, 2004, at 18:55:32
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
> I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes.
I do not have the bipolar problem but I do sympathise...
one of my problems is not being able to turn off my mind and as a result not being able to get to sleep at night. Therefore, I do my best sleeping in the morning sometime between 0600 and noon... when the rest of the world seems to think that people should be up and at it...
employers have the up and at it idea too <sigh>
My best ideas come to me at night when the rest of the world, husbands included, is asleep...
or wants to be asleep...
and for this the topomax DOES NOT HELP at all...
I take much higher doses of it than you do, Bridgie and I still find my brain spinning the way it always has...
the only way I can get it to stop is to take the effexor and the zyprexa and head into zombie-land and that is not in the equation for me. I will not agree to it at all..
therefore, having made my decision, I have to live with it
So, I know, I know, I ought not to complain when I feel sleep-deprived and wonder how to get through the day...and speaking of sleep-deprived, I met with mr. neurologist who doesn't seem to listen to anyone or anything.
He had a letter from my physician who explained that he did not think that my taking other meds to help me cope with the side effects (nausea, abdominal pain, and severe 'tingling' in hands and feet among others) was really a great idea, especially when the tegretol was obviously not working, was there another anti-seizure med that could be prescribed? He also pointed out that the seizures had lessened, as had the side-effects since I had been on topomax and that we were ecstatic about the reduction in migraines (and in weight) but that the extra medication to cope with tegretol did not seem wise.. and we would like to see an end to break-through seizures...
so the neurologist asked questions which I answered... and he prescribed a new med...
which turns out to be a medication to prevent the side effects to tegretol....
one that causes the same side effects in most people!!!
Here I am trying to eliminate the nausea and abdominal pain and it causes it...
I want to eliminate the extra medication and he leaves me on Tegretol and prescribes another med to help me stay on the stupid stuff with never a word as to why
Instead he arranged for me to go for another eeg, this time sleep-deprived and without benefit of caffeine either... oh joy...
I am fit to be tied at this point...
and now down to a size eight... seems this new med also has a weight loss side effect...
when next I write I shall be vanished from the face of the earth...
kat
Posted by bruce_w6 on April 30, 2004, at 19:18:47
In reply to headachequeen » bridgey1128, posted by headachequeen on April 30, 2004, at 18:55:32
I had the EXACT same problem with the mind racing and sleep. "THE CURE IS" 12.5 mg of Seroquel (1/2 of a 25 mg tablet). This will stop the mind racing and you will sleep 6-9 good hours. It is not enough to effect anything else. When you wake up you may still have it but tou will sleep peacefully.
> > I have bipolar 2 and before I was on topomax I would lie there forever at night trying to go to sleep and my mind would just race from one thing to another. Usually they would be like worse case scenarios. It would keep me awake at night for a couple hours sometimes.
>
>
> I do not have the bipolar problem but I do sympathise...
> one of my problems is not being able to turn off my mind and as a result not being able to get to sleep at night. Therefore, I do my best sleeping in the morning sometime between 0600 and noon... when the rest of the world seems to think that people should be up and at it...
> employers have the up and at it idea too <sigh>
> My best ideas come to me at night when the rest of the world, husbands included, is asleep...
> or wants to be asleep...
> and for this the topomax DOES NOT HELP at all...
> I take much higher doses of it than you do, Bridgie and I still find my brain spinning the way it always has...
> the only way I can get it to stop is to take the effexor and the zyprexa and head into zombie-land and that is not in the equation for me. I will not agree to it at all..
> therefore, having made my decision, I have to live with it
> So, I know, I know, I ought not to complain when I feel sleep-deprived and wonder how to get through the day...
>
> and speaking of sleep-deprived, I met with mr. neurologist who doesn't seem to listen to anyone or anything.
> He had a letter from my physician who explained that he did not think that my taking other meds to help me cope with the side effects (nausea, abdominal pain, and severe 'tingling' in hands and feet among others) was really a great idea, especially when the tegretol was obviously not working, was there another anti-seizure med that could be prescribed? He also pointed out that the seizures had lessened, as had the side-effects since I had been on topomax and that we were ecstatic about the reduction in migraines (and in weight) but that the extra medication to cope with tegretol did not seem wise.. and we would like to see an end to break-through seizures...
> so the neurologist asked questions which I answered... and he prescribed a new med...
> which turns out to be a medication to prevent the side effects to tegretol....
> one that causes the same side effects in most people!!!
> Here I am trying to eliminate the nausea and abdominal pain and it causes it...
> I want to eliminate the extra medication and he leaves me on Tegretol and prescribes another med to help me stay on the stupid stuff with never a word as to why
> Instead he arranged for me to go for another eeg, this time sleep-deprived and without benefit of caffeine either... oh joy...
> I am fit to be tied at this point...
> and now down to a size eight... seems this new med also has a weight loss side effect...
> when next I write I shall be vanished from the face of the earth...
> kat
Posted by headachequeen on April 30, 2004, at 21:55:22
In reply to Re: headachequeen, posted by bruce_w6 on April 30, 2004, at 19:18:47
> I had the EXACT same problem with the mind racing and sleep. "THE CURE IS" 12.5 mg of Seroquel (1/2 of a 25 mg tablet).
well, here is a thought that I shall share with my doctor. I see him on Friday and shall see if we can arrange this...
he does not like my sleeping in the mornings and being awake in the nights as this contributes to the depression part of my life or is a part of it or something...
and he is determined that I shall be up and awake and doing things in the daytime...
he has this exercise idea... and I do not DO strenuous things... running is against my religion as is jogging and bouncing activities and since they operated on my eyes anything that is bounce-oriented or strain-oriented is off the agenda anyway (halleluia!) so exercise is not in it now LOL
but I do a lot of walking and am going to get back into biking when the weather improves a little...
but that doesn't help me sleep... it does not turn off my mind at night... I read until all hours to stop the whirling dervish thing I call a brain... and have a notepad and pen on the bedside table to write down the better ideas I have to admit...
so I don't help myself I suppose...
more surgery is scheduled for the middle of the month and another visit to the psychologist for 13 May... I think his life is too dull since he cut me loose so he decided to invite some chaos back into it <s>
but I shall suggest this to my regular doctor and see if we can shut down the brain and sleep for a few hours when other people are sleeping.. what a concept
kat
Posted by heathermom on May 10, 2004, at 13:35:24
In reply to Re: Has topomax helped, posted by bridgey1128 on April 22, 2004, at 19:46:19
Hi. I stumbled upon this board in my quest for topamax info. My doc just prescribed for bi polar 2. I also take 900mg lithium, and lamictal. I am still just taking 25 mg. I guess my main question is...what does it feel like to not obsess over food? Does it really happen? When? At what dose? I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in??? Thankyou kind people:)
Posted by chemist on May 10, 2004, at 13:49:41
In reply to Re: Has topomax helped » bridgey1128, posted by heathermom on May 10, 2004, at 13:35:24
> Hi. I stumbled upon this board in my quest for topamax info. My doc just prescribed for bi polar 2. I also take 900mg lithium, and lamictal. I am still just taking 25 mg. I guess my main question is...what does it feel like to not obsess over food? Does it really happen? When? At what dose? I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in??? Thankyou kind people:)
hi there, chemist here....i took topamax 100 mg bid (200 mg/day in divided doses) as monotherapy for (alleged) bipolar I/II and can report that it was ineffective in controlling my hypomania vs. trileptal (300 mg/day) as monotherapy, and that weight-loss was quite pronounced but not extreme.....all the best, chemist
Posted by headachequeen on May 10, 2004, at 15:34:58
In reply to Re: Has topomax helped » bridgey1128, posted by heathermom on May 10, 2004, at 13:35:24
> Hi. I stumbled upon this board in my quest for topamax info. ...
>>I am still just taking 25 mg.
good, keep increasing at slow increments and it will not be a problem... fast increases lead to problems with side effects as many of us learned the hard way... slow but steady and all those silly cliches actually mean something>>I guess my main question is...what does it feel like to not obsess over food? Does it really happen?
It REALLY HAPPENS and it is amazing...
Chocolate and potato chips lsoe their appeal... I can remember leaving the doctor's office after his reminders that chocolate was a migraine trigger and salt was bad for my blood pressure and heading for the nearest store that sold chocolate bars and potato chips on my way back to work. It was as if there were a direct drive in my system that drove me to buy and eat them...
food was something I had to have and often I would discover I was eating a sandwich or chips or candy or cake or whatever, or second helpings that I didn't really want, but finished anyway... even things I didn't particularly like or enjoy...
one such memory involves a goldfish bowl party at work, when all the staff had to be on display for advertisers and there was a vast array of food including what I thought was cherry cheesecake... it turned out to be an absolutely awful crab concoction that looked like a cheesecake with a seafood sauce drizzled over it that looked like cherries over the cheesecake. It tasted unbelievably awful but I ate it because it was there on my plate.
A buffet meal -- oh what a thought...
and now I have a hard time trying to finish a normal meal. Last evening we went out for dinner with friends, a steak with baked potato and cauliflower and baby carrots. I finished the steak because I do crave protein and I am convinced that is some connection of the topomax thing, and I ate some of the vegetables but only a mouthful of the baked potato...
unheard of in the pre-topomax days!
Didn't want roll or butter and didn't want dessert. (there was a chocolate mousse cake that looked good enough to die for as well as a variety of other incredibly wonderful and tempting desserts but they did not interest me at all.)
I should add that it was the only meal of the day for me. I did not even have any yoghurt...
something I usually have in the morning or at bedtime to provide the food to take with my meds...
I no longer want sweets at all and that is a huge change, no pun intended...
and no longer need three meals a day and three or four snacks to get me through the times between meals... not to overlook the bedtime snack and the chips or popcorn during the evening.
another thing I have abandoned is drinking pop and the juice-type beverages...>>When? At what dose?
I am presently back at 400 mg a day while I wait to find out if they are going to dump the wretched tegretol from my regime...
the neurologist instead of eliminating it and replacing it, prescribed something to eliminate the side effects (I was already on meds to eliminate the side effects and this med has similar side effects, so I am not sure what this is supposed to achieve...) and ordered another eeg,this time sleep-deprived...
in the meantime I have had three more seizures that I know of since my visit with him...
and have to wonder how many there would have been had the topomax not been modifying the effects of the tegretol... arrgghhh>>I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in???
Relax and let things happen as they will...
I began to lose weight the first week I was on topomax... three pounds the first week but the change of attitude toward food came slowly -- perhaps around 200 mg a day??
and of late I notice it is really kicking in until I am able to stand in a Laura Secord shop, surrounded by the tantalising smell of chocolate and not want even one buttermallow bar...
that is incredible progress!!!Considering the fact that we were raised to eat everything that was put on our plates and remembering that chocolate and sweets were the reward factor in so many ways, it is an attitude that is hard to break, but seems to be disappearing...
so give it time. I would suspect that by the time you are on 100 mg evening and morning you will begin to feel a change...
kat
Posted by headachequeen on May 10, 2004, at 15:44:37
In reply to Re: Has topomax helped » heathermom, posted by chemist on May 10, 2004, at 13:49:41
>
> hi there, chemist here....i took topamax 100 mg bid (200 mg/day in divided doses) as monotherapy for (alleged) bipolar I/II and can report that it was ineffective in controlling my hypomania vs. trileptal (300 mg/day) as monotherapy, and that weight-loss was quite pronounced but not extreme.....all the best, chemist
>I don't know about controlling bipolar I/II and so on... although I am apparently hypomanic and the symptoms that caused the diagnosis seem to be under control and I am presently not receiving psychotherapy... and I might add that while I need topomax to help deal with migraine and epilepsy, I also need the hypomania to succeed in my chosen field sigh...
but I do know that it has succeeded in controlling the migraines (a little over a year now) and has moderated the effect of the tegretol that was apparently reducing the occurrence of the seizures but not enough...
and I do know that it has helped me lose weight that I gained thanks to depression and lack of self esteem as well as thanks to medications that had a tendency to cause weight gain...
Nothing is going to change overnight in the weight area... all the fancy and expensive diet sources tell us that...
so we should not expect Topomax to help us lose weight rapidly either.
As it is I keep hearing that I should stop taking 'that medicine' because I am becoming so thin...
I have gone from a little over 200 pounds to 145 pounds... exercise (I walk a lot and I do a lot of physically active stuff, but I did that same walking and physically active stuff before Topomax) have contributed I am sure... but so has the lack of interest in sugars and carbohydrate-high foods...
Topomax has a definite effect on food obsession and interest...
but the weight won't all fall off the first month...
it took time to gain it... and it takes time to lose it...
when I started to gain I weighed about 110...
it would never be possible to lose 100 pounds overnight no matter what I tried...
kat
Posted by heathermom on May 10, 2004, at 16:12:48
In reply to Re: Has topomax helped » heathermom, posted by headachequeen on May 10, 2004, at 15:34:58
> > Hi. I stumbled upon this board in my quest for topamax info. ...
> >>I am still just taking 25 mg.
> good, keep increasing at slow increments and it will not be a problem... fast increases lead to problems with side effects as many of us learned the hard way... slow but steady and all those silly cliches actually mean something
>
> >>I guess my main question is...what does it feel like to not obsess over food? Does it really happen?
>
> It REALLY HAPPENS and it is amazing...
> Chocolate and potato chips lsoe their appeal... I can remember leaving the doctor's office after his reminders that chocolate was a migraine trigger and salt was bad for my blood pressure and heading for the nearest store that sold chocolate bars and potato chips on my way back to work. It was as if there were a direct drive in my system that drove me to buy and eat them...
> food was something I had to have and often I would discover I was eating a sandwich or chips or candy or cake or whatever, or second helpings that I didn't really want, but finished anyway... even things I didn't particularly like or enjoy...
> one such memory involves a goldfish bowl party at work, when all the staff had to be on display for advertisers and there was a vast array of food including what I thought was cherry cheesecake... it turned out to be an absolutely awful crab concoction that looked like a cheesecake with a seafood sauce drizzled over it that looked like cherries over the cheesecake. It tasted unbelievably awful but I ate it because it was there on my plate.
> A buffet meal -- oh what a thought...
> and now I have a hard time trying to finish a normal meal. Last evening we went out for dinner with friends, a steak with baked potato and cauliflower and baby carrots. I finished the steak because I do crave protein and I am convinced that is some connection of the topomax thing, and I ate some of the vegetables but only a mouthful of the baked potato...
> unheard of in the pre-topomax days!
> Didn't want roll or butter and didn't want dessert. (there was a chocolate mousse cake that looked good enough to die for as well as a variety of other incredibly wonderful and tempting desserts but they did not interest me at all.)
> I should add that it was the only meal of the day for me. I did not even have any yoghurt...
> something I usually have in the morning or at bedtime to provide the food to take with my meds...
> I no longer want sweets at all and that is a huge change, no pun intended...
> and no longer need three meals a day and three or four snacks to get me through the times between meals... not to overlook the bedtime snack and the chips or popcorn during the evening.
> another thing I have abandoned is drinking pop and the juice-type beverages...
>
> >>When? At what dose?
>
> I am presently back at 400 mg a day while I wait to find out if they are going to dump the wretched tegretol from my regime...
> the neurologist instead of eliminating it and replacing it, prescribed something to eliminate the side effects (I was already on meds to eliminate the side effects and this med has similar side effects, so I am not sure what this is supposed to achieve...) and ordered another eeg,this time sleep-deprived...
> in the meantime I have had three more seizures that I know of since my visit with him...
> and have to wonder how many there would have been had the topomax not been modifying the effects of the tegretol... arrgghhh
>
> >>I know I am over thinking it. So much so, that I over analyze my need to eat. You know, I think, is it working yet? Is it not? Can anyone fill me in???
>
> Relax and let things happen as they will...
> I began to lose weight the first week I was on topomax... three pounds the first week but the change of attitude toward food came slowly -- perhaps around 200 mg a day??
> and of late I notice it is really kicking in until I am able to stand in a Laura Secord shop, surrounded by the tantalising smell of chocolate and not want even one buttermallow bar...
> that is incredible progress!!!
>
> Considering the fact that we were raised to eat everything that was put on our plates and remembering that chocolate and sweets were the reward factor in so many ways, it is an attitude that is hard to break, but seems to be disappearing...
> so give it time. I would suspect that by the time you are on 100 mg evening and morning you will begin to feel a change...
> katSo so helpful, all. Thankyou. I will stay tuned. You are all so incredibly interesting....just like me!!!! LOL:)
>
Posted by rainy on June 15, 2004, at 21:18:49
In reply to Re: Has topomax helped, posted by heathermom on May 10, 2004, at 16:12:48
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.
Posted by headachequeen on June 16, 2004, at 9:45:17
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.
You are not barging in at all... we are all here for the same reason I think... I just wish I knew how to keep track of ALL the posts instead of just some ...sigh...
I was on wellbutrin for a while, although never with the topomax as wellbutrin makes seizures worse and can cause them all by its lonesome... not something I need :(...
wellbutrin did slow things down for me... no more drive to do things and do them now.. have to admit I missed that ... used to get so much done and done NOW...
and, while I still am unable to turn off my mind and actually go to sleep and sleep through the night the way other people do according to my doctor, I am able to slow down during the day and I do not know why other than the fact that I am always tired... want to sleep all day...
so I fight to stay awake and then can't sleep at night so I am tired all day... I see a pattern here... sigh again...the wellbutrin certainly helped me turn off the let's go and do it all pattern...
it might help you too
kat
Posted by rainy on June 16, 2004, at 13:05:24
In reply to Re: Has topomax helped (nm) » headachequeen, posted by rainy on June 16, 2004, at 12:05:35
oops--I posted a big long message but apparently just thought I did. Sounds like wellbutrin did a job on you, Kat--I'm not so worried about being toned down as being plumped up on Deseryl. Also, just a word for those of us on Topamax. I had a chat with a neurologist this morning who suggested strongly that that medidication is behind, under and around almost all motor "indiscretions," like lurching, dropping, bumping, falling, etc as well as the Stupids. Also, when I complained about my handwriting going to pot, thinking that it might be a brain tumor or something, hs said, nope, it's the Topamax and didn't I want to take lithium or one of the other mood stabilizers instead? Good question?
Posted by bridgey1128 on June 16, 2004, at 13:48:29
In reply to Re: Has topomax helped, posted by rainy on June 15, 2004, at 21:18:49
Welbutrin made me nuts but that is why my Dr put me on meds for being bipolar. I know my Topomax needs to go up because I am starting to have energy during the day. I hate to say it but....the Topomax wears me out. I'm not sure what to do. If I take it I am bearable but now I am starting to snap again so I know it needs to go up. I have a Dr's appoinment tomorrow. I don't want to go into stupidville..I already have problems remembering stuff. Will it get worse? If it does I don't know if I can handle it and absolutely REFUSE to take something that makes me gain weight. I will be crazy before I will be even fatter than I am now. I am only up to 100mg at the moment and my Dr said usually weight loss starts at 125mg and up...so MAYBE I'll start to lose weight if I don't lose my mind first. I didn't know if there was a big difference in me on and off the meds..but I really can tell now that my dosage isn't high enough. I have more energy to do stuff but it's also paranoid energy and irritation. So I can clean my house better but I snap at everyone. So I can have a cleaner house but I am a bitch. HELP!!!! When my meds work I don't feel like doing anything but sleeping but my mood is better. I don't know how much longer I can take this drug. I guess I will have to see how well I do on a little higher dosage. Oh well..any feedback?
Posted by headachequeen on June 16, 2004, at 14:41:12
In reply to Re: Has topomax helped, posted by bridgey1128 on June 16, 2004, at 13:48:29
> Welbutrin made me nuts but that is why my Dr put me on meds for being bipolar. I know my Topomax needs to go up because I am starting to have energy during the day. I hate to say it but....the Topomax wears me out. I'm not sure what to do. If I take it I am bearable but now I am starting to snap again so I know it needs to go up. I have a Dr's appoinment tomorrow. I don't want to go into stupidville..I already have problems remembering stuff. Will it get worse?
Bridgey, I know that each person is affected differently and at different dosages by these medications... after all we are supposed to be individuals, right <GG>
At the moment I am taking 600 mg a day of Topomax...
now, first off, let us look at the side effects...
I am NOT losing hair dramatically and if we are being totally honest, I am doing nothing to prevent it... I have neither the time nor the interest to do anything to prevent it... work is too demanding... I am writing again and have too much on my mind to think about vitamins and supplements for myself... hard enough to take time to take the meds I need to survive without the other stuff...
I am NOT having trouble remembering things... vocabulary is still strong, memory is still strong... the only problem I have is the sleep thing... and that has been a life-long part of my being... I simply don't remember many nights when I actually had a good night's sleep but cannot lay that at the door of Topomax...
I do NOT have cognitive problems other than remembering my new phone numberat times... but I had the same number for twenty years so that is to be expected... and this number is the third in as many months, so....
I do NOT have any eye problems associated with Topomax... now the dry eye and blocked tear duct problem is still driving me out of my mind or what is left of it, but that is a problem of long standing and one that the surgeon says he will correct with the next try... of course he said that about the third try sigh...
I am NOT experiencing any of the side effects that are normally attributed as being the nasty side effects of Topomax...I DID start to lose weight the first week I started to take the stuff, as I have mentioned before (a whole three pounds... don't laugh, folks... it was a big deal to me at the time <s>)
I have NOT had a migraine since starting to take the stuff...
I have had fewer breakthrough seizures since starting to take the stuff...
and I HAVE lost weight...It seems to me that if the increases are taken at a slow and easy rate, the side effects are not as great a problem...
the cognitive problems that may arise tend to fade and a return to normal in a very short timeI have been using Topomax now for eighteen months and have found it to be really helpful... I DO have severe side effects from my main anti-epilepsy medication... and keep hoping that they will change it to another one and do it soon...
perhaps the tests they did last week will lead to that...
but I will not let them change the Topomax...
it has increased the efficacy of the primary med
-- originally I was having several breakthrough seizures a week, occasionally two a night...
now it is at most two a week, sometimes none a week...
it has eliminated the migraines...
it has helped me lose weight in a substantial and positive manner...
and I am not suffering as a result of taking it...
I would not give it up.
kat
Posted by bridgey1128 on June 16, 2004, at 15:23:00
In reply to Re: Has topomax helped » bridgey1128, posted by headachequeen on June 16, 2004, at 14:41:12
I'll stick with it girl because I know you have been through it all! ;) thanks
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
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