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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on August 10, 2004, at 17:25:07
In reply to Re: Topamax, » headachequeen, posted by crow on August 10, 2004, at 13:47:23
> Hi kat,
> My husband has been taking tomapax for about 4 months for migraines, the doctor has him up to 400mg per day(200am and 200pm)he hasn't expereinced hair loss but is having major problems diaria and appetite, it seems very unhealthy, just eating a small meal a day(if that), can't force himself to eat anything else. He has loss 40 lbs and it is obvious he should not be on the doses he's on, the doctor he has doesn't seem to have a firm grip on the medication, so my question to you, is when you went of the topamax how did you do it? How much did you taper at a time, and did you experience any of the symptons I've discribed? Thanks in advance for your reply.
>
Hi!!
First I have to tell you that I am still taking Topomax and will probably be taking it forever as I am epileptic and it is prescribed primarily to help control seizures...
as it deals with migraine (a side effect of the medication) it was the neurologist's choice instead of increasing the tegretol... to which I say a loud hallelujah...The diarrhoea problem is one that is hard to deal with... and I have talked with several people who have had to cope with it...
the best approach we have found is to use Metamucil or one of the other psyllium products and to avoid dairy products and seed-containing fruit and vegetables...
Sometimes using oh glory, there goes the memory bank... can't remember the name of it but they have all those dense commercials... or Lomotil is the only answer...as for appetite, the initial appetite suppressant component does settle down after a while...
I don't think I could lose weight now if I tried and I am on a closely monitored food regimen as well as the topomax, yet there has been no change in my weight in a month or two...I keep wondering if there were a decision to take me off Topomax whether or not I would suddenly gain weight again...
read the other day about a person who gained 100 pounds in 90 days on an anti-depressant and that put me into total trauma!!!The dietitian at our hospital who is helping me work on a pro-active plan to counteract diabetes II and post-op problems told me that if I ate three meals a day instead of the one that I have come to prefer since I started Topomax that things would balance well...
to spread the food of the one meal over three with a little added each time.... I have never been a breakfast fan and that has not been a great success <g>
I have been trying for a month now, and while the sugar levels have adjusted, I am totally uncomfortable...
so going back to the one meal, but going to
try including green vegetables and sprouts and things for a 'light lunch' and evening snack that she wants me to have, and see if that works...
a light salad for lunch and celery or aspargus spears for a snack...
we'll see how it goes....kat
Posted by headachequeen on August 10, 2004, at 17:30:06
In reply to Re: Topamax,, posted by imlaurie on August 10, 2004, at 16:33:05
> I quit taking Toapamax and Zonegran over a month ago. I hardly lose any hair at all compared to the hanfulls that I was losing during the medication.Also I have only gained back about a pound of all the weight I had lost. Looking slim is a dream come true but at 50 the weight loss added years to my face, I used to look young for my age now eveyone says I look quite old and need to gain weight. I hardly recognize myself in the mirror. There is no happy medium with anything, I am convinced.
There never is a happy medium...
I think that is one of Murphy's laws...but look at this way, the weight loss may well have added years to your life...
that is the way I see it...
the pounds I gained on the meds that didn't work, are now almost all gone; I never want to return to the excessively thin person I once was, but I am much happier now that I am more comfortable with me...
I do get tired of people telling me I have to stop losing weight...
although I have not lost any in weeks...
and interestingly enough, it is often people who could most benefit from a little weight loss who tell me how worried they are that I am losing weight and think that I should see a doctor about it...
after all, I have to be sick or I couldn't lose weight, right????
arrgghhhh a pox upon them...kat
Posted by Kathai on August 22, 2004, at 17:15:56
In reply to Re: Topamax, » crow, posted by headachequeen on August 10, 2004, at 17:25:07
Hi all, I am new to this site, doing research after prompting from my mother (I'm 35!). About a year ago my neurologist prescribed topamax after I suffered terrible migraines for years. For this past year, I took it at night before I went to bed. The only side effect I've noticed is crazy, racing dreams, and waking at every sound (which makes sleeping really difficult, since I have two dogs and a snoring husband). Even the dr. has been surprised that I've had no weight loss! (I was really looking forward to THAT side effect!)
I have slept terribly and am very sensitive to sound - my husband's snoring just about is throwing me over the edge. Because of this, my frequent distrubances at night and the dreams - Since I sleep terribly, I decided two weeks ago to try taking it in the AM instead of the PM. I still have dreams sometimes - I have history of having vibrant dreams almost every night anyway - but I noticed right away overall I slept SO MUCH BETTER. Also, seemed to have less of an appetite during the day.
HOWEVER...I went away on vacation and forgot to bring the meds. I saw a chirpractor who was also a nutritionist, and he told me I sounded like a heroin addict the way I talked about being terrified of missing s dosage, or my neurologist leaving the practice, etc. It made me wonder. I want to be drug free. Maybe if I start exercising and eating right I will be ok? I stopped taking the topamax. It has been a week now. I have been fine. Last night, terrible sleep. I woke up and took fiorcet at 4am. Today, a headache. I am wondering if the topamax is wearing off...I am wondering if I will get better, or if I will get worse in the long run.
By the way, I just read my bottle and realized the dosage is really low - 25mg, two tablets a day.
anybody have any advice? I have learned alot after stumbling upon this site this morning, thank you.
PS I do have hair loss...I am learning more about side effects; I haven't figured out over the past year what are side effects vs. regular life stuff
Posted by Kathai on August 22, 2004, at 17:41:41
In reply to weaning off my Topamax (presc. for migraines), posted by Kathai on August 22, 2004, at 17:15:56
After reading more and more postings today, I have learned a lot. I also have been doing a search, and found the most informative website! http://www.migraines.org/treatment/protpmax.htm
My last posting I stated that I wasn't sure what my side effects were vs. real life things..and after reading this posting it was like a big relief to see that some of the things I have been concerned of over the past year, are side effects of topamax! I seem to have most of the "less common" side effects, interestingly enough.
Check out the website!
Posted by headachequeen on August 23, 2004, at 4:22:01
In reply to weaning off my Topamax (presc. for migraines), posted by Kathai on August 22, 2004, at 17:15:56
> Hi all, I am new to this site, doing research after prompting from my mother (I'm 35!).
Hi!
I have to say that any chiropractor who would compare a patient who is trying to responsibly follow a medication protocol, one prescribed by a neurologist or any other doctor, really has a thing or two to learn...
He also has a thing or two to learn about the trust and confidence that a patient develops when dealing with a particular doctor, if he cannot understand your concern that your doctor might leave the practice, thereby leaving you with no one upon whom you feel you can rely, having to start over again...Some people's children!!!
As for stopping the Topomax cold turkey so to speak, I think it would be better to discuss the idea with the neurologist... safer for your health...
You are on a low dose of Topomax so that should not really cause too many side effects...
and when one sticks to slow incremental changes, the side effects are generally kept to a minimum and they do wear off...As for the dreams and the sleep problem... I have always been a disastrous sleeper; the slightest sound -- a car door closing three blocks away -- wakens me and that is it for the rest of the night..
some nights I cannot fall asleep at all...
but this is not related to the medication, it has been a part of my life for longer than I can remember;
and it is not a side effect that I have heard mentioned before. Did you ask the neurologist about it?as for the weight, how long have you been taking Topomax? that may be a factor...
and the dreams -- since I started Topomax I rarely have a dream that I can remember, for that matter I rarely remember having dreams...
is the dream thing part of the Topomax bag of tricks I wonder, and if so are we experiencing different sides of the same coin?
Hang in there and you will adjust....
I am confident of it, and don't let a chiropractor who has little personal knowledge of your health concerns and how you deal with them, set off a chain of self-doubts...kat
Posted by headachequeen on August 23, 2004, at 4:29:46
In reply to here is a great informational web site, posted by Kathai on August 22, 2004, at 17:41:41
> After reading more and more postings today, I have learned a lot. I also have been doing a search, and found the most informative website! http://www.migraines.org/treatment/protpmax.htm
This is an interesting site indeed. Thanks for telling us about it...
One of the things that I noticed and I am quoting here, is the warning about stopping the medication:
"Do not abruptly stop taking Topamax®. If the drug isn't withdrawn gradually, seizures may be caused, even in patients who do not normally experience seizures."That part I can certainly reinforce. I had to stop taking the topomax and the Tegretol ten days ago because of tests that are scheduled for later today... and the seizures began within 24 hours...
The article also points out that side effects are not known to last for any length of time...
"Some side effects, such as fatigue, are more likely to surface with high doses of Topamax®. Others occur regardless of dosage. While many tend to disappear after the first 8 weeks of therapy,"
This is another statement that I can affirm... any of the side effects I encountered were of a short duration and life returned to normal within a few weeks... and I don't think it took two months to reach that stage...
Wish I could say the same for Tegretol...
kat
Posted by bridgey1128 on August 23, 2004, at 12:36:23
In reply to weaning myself off topamax..., posted by Kathai on August 22, 2004, at 16:55:45
I guess it depends on the frequency of your migraines and what triggers them. If it's certain foods then you can avoid them and be moderately migraine free. Sometimes people have no idea what causes them and they need medical relief. Yes, your dosage is low compared to what some people take. I wouldn't just STOP taking Topamax. When I forgot to take mine the other night (and I am on a much higher dosage 150mg) I start hallucinating. Of course, I take it for bipolar and not for migraines. I wouldn't let one person tell you to stop taking a medication, and CERTAINLY not a different Dr than the one who prescribed it. How long have you been taking it? If it's not very long it will probably pass. Most side effects do. I am with you on the vivid weird dreams. Mine have always been like that so I couldn't tell a difference. I have never slept well so that made no difference to me either. Topamax affects everyone differently so just stick it out for a while and see if it helps, and if you can't stand the side effects over the relief it may bring then talk to your Dr about switching to another drug or trying something different. I REALLY wouldn't go cold turkey on ANY drug and any person, Dr or Chiro or not who would tell you that you sounded like a junkie for forgetting MEDICATION has GOT to be a QUACK!!! I mean, if you were a diabetic and you forgot your insulin, would that person say..oh man you sound like a heroin addict! NO! If it's a genuine need for relief of migraines or bipolar or whatever and you are supposed to take your meds at a certain time, of course you are going to be worried about not taking your medication. That's called a responsible person. Anyway, this is my two cents worth. I go to the Dr tomorrow about my headaches. They haven't gone away and now it's on both sides of my head. HOw ironic if the Topamax is causing it! I think I will insist on a MRI. When you have taken just about everything over the counter and then some and nothing gets rid of it, you know something ELSE must be wrong. Anyway, good luck to you!
Posted by kathai on August 23, 2004, at 16:02:42
In reply to Re: weaning myself off topamax..., posted by bridgey1128 on August 22, 2004, at 19:47:51
Thanks for your responses! After reading that website I informed you about, it scared me too...I actually took half of a topamax last night (the headache I had all day I began to figure was a withdrawel...) after going cold turkey for 3 days and I felt so much better after. I made an appt with my neurologist today. I can't even remember how long I've been on it. I thought a year, but time flies, I am thinking more like three!!!
Anyway I am also suddenly staying up all night biting my nails and a bit frantically stressed....I think that happened last time I tried to "wean myself off" and then decided it wasn't worth it...
Posted by headachequeen on August 23, 2004, at 22:16:32
In reply to Re: weaning /Bridgey1128 Headachequeen, posted by kathai on August 23, 2004, at 16:02:42
Today was a most informative one... to begin with I found out why I have seizures as well as why I have break-through seizures...
The team running and interpreting today's tests happen to be the team who were responsible for discovering the weight loss component of Topomax by the way and were also the team who discovered that the original protocol was not really the ideal one and changed the protocol to lower starting doses, recommending that people prescribed Topomax start at lower doses and wait longer periods of time between increases so as to avoid disastrous side effects...I also learned a lot more about taking Tegretol and Topomax with comfort....
I have been experiencing strange fatigue ...
but that is because no one told me to take the Tegretol and Topomax separately, preferably two hours apart....and no one ever told me to take Tegretol with food... hence the side effects that have been crippling me with abdominal pain and nausea and the electric knife 'tingling'...
so I am making the necessary changes in my personal approach to taking these meds...
as for the break-through seizures, the prescribed dosage of both meds is too low for the situation in which I am living... so I am hoping with the changes prescribed today that things will improve...
The whole experience was fascinating, albeit at times upsetting... during the testing I was asleep for about four hours, then awake for the last couple of hours, during which time the technician induced two seizures. I have never experienced a seizure when I was conscious... and thanks just the same would prefer not to repeat the experience...
however it was apparently something they needed to do... and they learned a great deal from it...
so did I... :(
I learned that it is something I don't really want to do again...I also learned that those people who lose weight on Topomax will regain the weight if they quit taking it... a word to the wise :(
And the visual impairment is actually blurred vision caused by too sudden an increase in the dosage. It seems as if the person taking the med cannot see because the blurred vision is so intense...
and I shall try and remember what else they told me and share it here... there was such a mass of information...
they also gave me a booklet that they prepared for epilepsy patients that includes information on the meds...
have not read it yet... too tired after twenty-four hours without sleep and forty-eight hours without caffeine or other stimulant...but shall let you know what else I remember and/or read...
kat
Posted by concerned daughter on August 23, 2004, at 22:19:07
In reply to Re: weaning myself off topamax..., posted by bridgey1128 on August 22, 2004, at 19:47:51
Hi. I'm writing with questions for my mother. She has been having vascular migraines for about a year now...getting increasingly worse. She switched neurologists just this past week and was put on Topomax on Thursday. She had a really bad migraine on Friday and swelling in her neck on Saturday morning. So she was hospitalized by the neurologist on call on Saturday, and she is still in the hospital tonight. Her MRIs and an MRA have shown nothing out of the ordinary. My question is, how long does she have to take the Topomax before she should begin experiencing relief (i.e. decrease in occurence of migraines)? Thanks in advance for the information.
Posted by kathai on August 23, 2004, at 22:35:42
In reply to Re: weaning myself off topamax..., posted by concerned daughter on August 23, 2004, at 22:19:07
I am sorry about your mother! It took me a couple weeks to start feeling the effects of the topamax, and I was having terrible migraines - weekly. Even on the topamax I continued to have migraines only about twice a month, and much less severe. I take fiorcet if I need to, but I try to take a lot of naproxen and diet coke! to help avoid the major migraine. If it doesn't work, I take the fiorcet. Only ended up at the DR twice this past year for debiliating HELP ME kind of migraines where they gave me steroids? I think? and percocet to break whatever cycle. Good luck with your mother. My mother suffered for many, many years without therapy -what I remember most about my childhood is my mother throwing up in the dark every weekend for years. Now that I think about it, I thanked GOD when I started taking the topamax and it started working for me, I felt like it saved my life. Makes me wonder why I thought a couple days ago about weaning off...pressures I guess.
> Hi. I'm writing with questions for my mother. She has been having vascular migraines for about a year now...getting increasingly worse. She switched neurologists just this past week and was put on Topomax on Thursday. She had a really bad migraine on Friday and swelling in her neck on Saturday morning. So she was hospitalized by the neurologist on call on Saturday, and she is still in the hospital tonight. Her MRIs and an MRA have shown nothing out of the ordinary. My question is, how long does she have to take the Topomax before she should begin experiencing relief (i.e. decrease in occurence of migraines)? Thanks in advance for the information.
Posted by imlaurie on August 24, 2004, at 0:04:10
In reply to Re: weaning /Bridgey1128 Headachequeen » kathai, posted by headachequeen on August 23, 2004, at 22:16:32
I have been off the Topamax for about three months. I am still 120 pounds and still a size 5. I was 165 lbs and a tight size 12 before I started Topamax. My main reason for quitting them was the hair loss. Then again my only reason for taking them as long as I did (a bit over a year)was the weight loss. I found that emotionally I was the same with them or without them. I think I got so used to eating one meal a day while I was on Topamax that it became a way of life for me. I just don't get hungry like I did before I was taking it. I have heard that stomachs don't shrink but I really feel like mine did. I noticed side effects, tingling in my feet, blurred vision, hair loss and of course the big plus is losing weight. Topamax was given to me to balance my moods, they claim I am mildly bi-polar. I don't agree but that is another story :) MY weight loss started right away and I went to a size 5 in about 6 weeks. If I remember right I was only taking 100 mgs a day, I think that's what it was.
I am curious as to why this medication causes such significant weight loss. Does anyone know?
Laurie
Posted by Jessie77 on August 24, 2004, at 0:18:21
In reply to Re: weaning /Bridgey1128 Headachequeen, posted by imlaurie on August 24, 2004, at 0:04:10
I am also at a point where I feel like I may need to wean off topamax. I didnt want to initially but I feel like my mood is just getting more depressed. I also had my first seizure in 2 years (on my honeymoon - poor guy - for better or worse!) I have lost about 20-25 pounds, although i dont feel like I eat less and my family is starting to freak out. I asked my doctor to switch me to zonegran but he will not. I am also taking 60 mg of Adderall for ADHD. Im not sure what to do. I wont go on an SSRI or Wellbutrin because of the seizure issues. Has anyone experiences their depression worsening with Topamax?
Sorry for the long post.
Jessie
Posted by headachequeen on August 24, 2004, at 8:35:05
In reply to Re: weaning myself off topamax..., posted by concerned daughter on August 23, 2004, at 22:19:07
I forgot to mention -- and many of you may already know this, but no one mentioned this to me, neither the pharmacists nor the neurologist -- that Topomax should also be taken with food, if only a bit of toast or bread or a cookie...
it should never be taken on an empty stomach. In fact, they told me that unless specifically mentioned, no meds should be taken on an empty stomach....so I added that to the file of information stored in my memory bank...
kat
Posted by headachequeen on August 24, 2004, at 13:09:39
In reply to Re: weaning /Bridgey1128 Headachequeen, posted by imlaurie on August 24, 2004, at 0:04:10
> I am curious as to why this medication causes such significant weight loss. Does anyone know?
> LaurieLaurie, the Topomax minimises the appetite, causing one to want to eat less...
stomachs do not shrink but appetites do <G>the tech and the neurologist yesterday explained it to me in great detail... something that had been missing in the past few months
kat
Posted by kathai on August 24, 2004, at 15:47:59
In reply to Re: weaning /Bridgey1128 Headachequeen, posted by imlaurie on August 24, 2004, at 0:04:10
WOW, I am pushing 175 I think right now and have gone from 8 to 12, just the opposite. But I think that is because of my lifestyle change, not the topamax. But I wish I had the weight loss effect!!!
> I have been off the Topamax for about three months. I am still 120 pounds and still a size 5. I was 165 lbs and a tight size 12 before I started Topamax. My main reason for quitting them was the hair loss. Then again my only reason for taking them as long as I did (a bit over a year)was the weight loss. I found that emotionally I was the same with them or without them. I think I got so used to eating one meal a day while I was on Topamax that it became a way of life for me. I just don't get hungry like I did before I was taking it. I have heard that stomachs don't shrink but I really feel like mine did. I noticed side effects, tingling in my feet, blurred vision, hair loss and of course the big plus is losing weight. Topamax was given to me to balance my moods, they claim I am mildly bi-polar. I don't agree but that is another story :) MY weight loss started right away and I went to a size 5 in about 6 weeks. If I remember right I was only taking 100 mgs a day, I think that's what it was.
> I am curious as to why this medication causes such significant weight loss. Does anyone know?
> Laurie
Posted by kathai on August 24, 2004, at 15:52:04
In reply to Re: topomax weight/side effects/weaning off, posted by Jessie77 on August 24, 2004, at 0:18:21
I don't notice depression, but I do have a complete lack of desire for sex, which really is frustrating to my husband, and when I asked my neurologist about it she looked at me like I needed to stop making things up (thats how I felt!) but then I noticed that this is one of the less common side effects, and I was so happy it wasn't just me. But maybe that is kind of a depression. I haven't had a seizure but the weird thing is, my migraines are right sided, they affect my whole right side of my body, numb even my face, and I have always had this scary premonition that I would be having seizures - before I ever knew that they were related to topamax.
You are right about for better or worse! hope the rest of your honeymoon was enjoyable!> I am also at a point where I feel like I may need to wean off topamax. I didnt want to initially but I feel like my mood is just getting more depressed. I also had my first seizure in 2 years (on my honeymoon - poor guy - for better or worse!) I have lost about 20-25 pounds, although i dont feel like I eat less and my family is starting to freak out. I asked my doctor to switch me to zonegran but he will not. I am also taking 60 mg of Adderall for ADHD. Im not sure what to do. I wont go on an SSRI or Wellbutrin because of the seizure issues. Has anyone experiences their depression worsening with Topamax?
>
> Sorry for the long post.
>
> Jessie
Posted by Jessie77 on August 24, 2004, at 17:46:43
In reply to Re: topomax weight/side effects/weaning off, posted by kathai on August 24, 2004, at 15:52:04
Me too! Total lack of sex drive! This is not good for a newlywed! Thank God I married a patient man. Have you heard anything about Zonegran? My psychiatrist would not prescribe it so I am going to get a second opinion from a primary care doctor.
Thanks for sharing:) I was really having some major guilt issues about the sex thing and thought there was something seriously wrong with me - Im glad Im not alone:)
> I don't notice depression, but I do have a complete lack of desire for sex, which really is frustrating to my husband, and when I asked my neurologist about it she looked at me like I needed to stop making things up (thats how I felt!) but then I noticed that this is one of the less common side effects, and I was so happy it wasn't just me. But maybe that is kind of a depression. I haven't had a seizure but the weird thing is, my migraines are right sided, they affect my whole right side of my body, numb even my face, and I have always had this scary premonition that I would be having seizures - before I ever knew that they were related to topamax.
> You are right about for better or worse! hope the rest of your honeymoon was enjoyable!
>
> > I am also at a point where I feel like I may need to wean off topamax. I didnt want to initially but I feel like my mood is just getting more depressed. I also had my first seizure in 2 years (on my honeymoon - poor guy - for better or worse!) I have lost about 20-25 pounds, although i dont feel like I eat less and my family is starting to freak out. I asked my doctor to switch me to zonegran but he will not. I am also taking 60 mg of Adderall for ADHD. Im not sure what to do. I wont go on an SSRI or Wellbutrin because of the seizure issues. Has anyone experiences their depression worsening with Topamax?
> >
> > Sorry for the long post.
> >
> > Jessie
>
>
Posted by kathai on August 24, 2004, at 22:35:58
In reply to Re: topomax weight/side effects/weaning off, posted by Jessie77 on August 24, 2004, at 17:46:43
Jessie, I was married last July, 03, and I am having a really hard time remembering when I started topamax- I have no sense of time sometimes! - but I know the lack of sex drive came soon after I started, BEFORE my wedding for sure, and since then I have worried it was me (I had asked my neurologist and she told me it shouldn't be a side effect)!!! Because I wan't like this beofe! and it has caused more fights and friction in my marriage (you are lucky your husband is patient!). I wish I had tapped into psy-babble before! I am so glad for this - being able to post and share and read - so glad for the site and the support from everyone and the many things I have learned from other people's experiences! glad I gave you some relief that you aren't alone, because I know I am relieved.
I have begun weaning off (decided against going cold turkey after Kat's advice and finding that informative web-site that warned against it)...I am now taking one 25 mg every other day (instead of 50 mg a day) until I see my neurologist in two weeks. I will keep you all posted as to the effects!
I have not heard of Zonegran...> Me too! Total lack of sex drive! This is not good for a newlywed! Thank God I married a patient man. Have you heard anything about Zonegran? My psychiatrist would not prescribe it so I am going to get a second opinion from a primary care doctor.
>
> Thanks for sharing:) I was really having some major guilt issues about the sex thing and thought there was something seriously wrong with me - Im glad Im not alone:)
> > I don't notice depression, but I do have a complete lack of desire for sex, which really is frustrating to my husband, and when I asked my neurologist about it she looked at me like I needed to stop making things up (thats how I felt!) but then I noticed that this is one of the less common side effects, and I was so happy it wasn't just me. But maybe that is kind of a depression. I haven't had a seizure but the weird thing is, my migraines are right sided, they affect my whole right side of my body, numb even my face, and I have always had this scary premonition that I would be having seizures - before I ever knew that they were related to topamax.
> > You are right about for better or worse! hope the rest of your honeymoon was enjoyable!
> >
> > > I am also at a point where I feel like I may need to wean off topamax. I didnt want to initially but I feel like my mood is just getting more depressed. I also had my first seizure in 2 years (on my honeymoon - poor guy - for better or worse!) I have lost about 20-25 pounds, although i dont feel like I eat less and my family is starting to freak out. I asked my doctor to switch me to zonegran but he will not. I am also taking 60 mg of Adderall for ADHD. Im not sure what to do. I wont go on an SSRI or Wellbutrin because of the seizure issues. Has anyone experiences their depression worsening with Topamax?
> > >
> > > Sorry for the long post.
> > >
> > > Jessie
> >
> >
>
>
Posted by imlaurie on August 25, 2004, at 10:29:15
In reply to Jessie -/side effects/weaning off, posted by kathai on August 24, 2004, at 22:35:58
What website are you talking about?? I would like to see it. I went off Topamax cold turkey a few mmonths back. I am curious because around that time my whole body was one big muscle cramp, my entire back, neck, I couldn't turn my head,muscle spasms all the way down to my feet. It had me scared but it went away after about a week. I was too cramped up to even drive to the dr. Now I am wondering if there is any connection to that horrid experience and quitting the Topamax so abruptly?? Please someone send me the website. And yes it does STOP your sex drive because now I have a sex drive once again :)
Thanks Laurie
Posted by rockette on August 25, 2004, at 12:04:37
In reply to Jessie -/side effects/weaning off, posted by kathai on August 24, 2004, at 22:35:58
I am free of Topomax for about one month now. Slowly tapered off. Had been taking it for migraines but was unhappy with the hairloss and still got some "break-through" migraines (2 or 3 a month--though not as severe as previously). Had little or no sex drive while taking the Topomax (it hasn't returned--sad husband!)
So now have been taking Zonegran (100 mg at night) for about a month. Have NOT noticed any great change. Hair is still dry like straw but not falling out, still getting headaches (wake up during night with them frequently but often they will go away if I get up--usually at 4 a.m.) Will take "Amerge" for break-through headaches and that usually will stop them (not this past week-end though.)
Our family has suffered the tragic loss of my newborn granddaughter this month so that may also be adding to my headaches, lethargy and depression.
Posted by kathai on August 25, 2004, at 21:51:34
In reply to Re: Topomax -/side effects/sex drive/Zonegran, posted by rockette on August 25, 2004, at 12:04:37
Oh My God, I am sooo sorry for your loss. This is so unimportant right now, but your side effects sound just like mine. I went to the hairdressers today and all of the hairdressers in the shop had a discussion about how dry and damaged my hair is...my hair has always been my crowning glory (very healthy and down to my elbows until about 2 years ago)so it was a puzzlement...but now to me anymore!! anyway...I am so sorry for your loss. I am sure it adds to the depression etc.
> I am free of Topomax for about one month now. Slowly tapered off. Had been taking it for migraines but was unhappy with the hairloss and still got some "break-through" migraines (2 or 3 a month--though not as severe as previously). Had little or no sex drive while taking the Topomax (it hasn't returned--sad husband!)
> So now have been taking Zonegran (100 mg at night) for about a month. Have NOT noticed any great change. Hair is still dry like straw but not falling out, still getting headaches (wake up during night with them frequently but often they will go away if I get up--usually at 4 a.m.) Will take "Amerge" for break-through headaches and that usually will stop them (not this past week-end though.)
> Our family has suffered the tragic loss of my newborn granddaughter this month so that may also be adding to my headaches, lethargy and depression.
Posted by kathai on August 25, 2004, at 21:55:56
In reply to Re: Jessie -/side effects/weaning off, posted by imlaurie on August 25, 2004, at 10:29:15
Laurie, I posted the link to the website a few days ago and will try to find it in backpostings. Kat, just in case - do you happen to still have that link? You had checked it out when you responded to me with some good advice. I can't believe I didn't save it in my favorite places! I will look for it again too.> What website are you talking about?? I would like to see it. I went off Topamax cold turkey a few mmonths back. I am curious because around that time my whole body was one big muscle cramp, my entire back, neck, I couldn't turn my head,muscle spasms all the way down to my feet. It had me scared but it went away after about a week. I was too cramped up to even drive to the dr. Now I am wondering if there is any connection to that horrid experience and quitting the Topamax so abruptly?? Please someone send me the website. And yes it does STOP your sex drive because now I have a sex drive once again :)
> Thanks Laurie
Posted by kathai on August 25, 2004, at 22:09:58
In reply to Re: Jessie -/side effects/weaning off, posted by imlaurie on August 25, 2004, at 10:29:15
Found the website! Here is the posting from a few days ago:
Posted by Kathai on August 22, 2004, at 17:41:41After reading more and more postings today, I have learned a lot. I also have been doing a search, and found the most informative website! http://www.migraines.org/treatment/protpmax.htm
My last posting I stated that I wasn't sure what my side effects were vs. real life things..and after reading this posting it was like a big relief to see that some of the things I have been concerned of over the past year, are side effects of topamax! I seem to have most of the "less common" side effects, interestingly enough.
Check out the website!
> What website are you talking about?? I would like to see it. I went off Topamax cold turkey a few mmonths back. I am curious because around that time my whole body was one big muscle cramp, my entire back, neck, I couldn't turn my head,muscle spasms all the way down to my feet. It had me scared but it went away after about a week. I was too cramped up to even drive to the dr. Now I am wondering if there is any connection to that horrid experience and quitting the Topamax so abruptly?? Please someone send me the website. And yes it does STOP your sex drive because now I have a sex drive once again :)
> Thanks Laurie
Posted by rockette on August 26, 2004, at 14:25:46
In reply to Re: Topomax -/side effects/sex drive/Zonegran, posted by kathai on August 25, 2004, at 21:51:34
Thank you so much for your kind words. It is a very difficult time. Headaches and depression go hand-in-hand, add heartbreak to the mixture and I don't think any medication could help right now. but I do think the change from Topomax to Zonegran was a smart move--no problems noted.
> Oh My God, I am sooo sorry for your loss. This is so unimportant right now, but your side effects sound just like mine. I went to the hairdressers today and all of the hairdressers in the shop had a discussion about how dry and damaged my hair is...my hair has always been my crowning glory (very healthy and down to my elbows until about 2 years ago)so it was a puzzlement...but now to me anymore!! anyway...I am so sorry for your loss. I am sure it adds to the depression etc.
>
>
> > I am free of Topomax for about one month now. Slowly tapered off. Had been taking it for migraines but was unhappy with the hairloss and still got some "break-through" migraines (2 or 3 a month--though not as severe as previously). Had little or no sex drive while taking the Topomax (it hasn't returned--sad husband!)
> > So now have been taking Zonegran (100 mg at night) for about a month. Have NOT noticed any great change. Hair is still dry like straw but not falling out, still getting headaches (wake up during night with them frequently but often they will go away if I get up--usually at 4 a.m.) Will take "Amerge" for break-through headaches and that usually will stop them (not this past week-end though.)
> > Our family has suffered the tragic loss of my newborn granddaughter this month so that may also be adding to my headaches, lethargy and depression.
>
>
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