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Dr. Bob is Robert Hsiung, MD,
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Posted by Ponder on October 14, 2002, at 14:00:44
In reply to Topomax-Should I or shouldn't I????, posted by LilyB on October 12, 2002, at 12:06:36
As others have commented, the bulk of posts on P-babble about Topa give one pause. People on this board are pretty tough and courageous about tolerating side-effects, if necessary, in order to get efficacy. Still, many have not been able to stick with Topa.
I have a bottle of Topa 25 mg sitting in front of me now and have not yet worked up the resolve to get started. Clinical studies with Topa had a 28% discontinuation rate due to side effects. This compares to 10% with Lamictal. Still, the percentages listed in the prescribing info for Topa suggest that the majority of patients did NOT have these side effects. You wouldn't know that by reading this board.
I think the continued sharing of information and experiences with Topamax is critical here. The benefits, for those who benefit, are substantial. That's why it's hard to dismiss Topa as a dirty drug to be avoided.
Cognitive problems caused by bipolar depression, ECT, and other psych drugs have been so awful, the thought of having them aggravated by Topa is pretty scarey.
Don't know quite what I'm asking for here. Guess I'd like to hear more from people who have had success with Topa, especially those who were able to escape significant side effects by starting very low, increasing very slowly, or by whatever means.
Also...is anyone else frustrated by the difficulty in evaluating the relative contribution of each component of treatment? Seems whenever I run into problems, the p-doc wants to add something. Pretty soon I'm on multiple drugs and wondering why, if they aren't working anymore, I should continue taking all this stuff.
I feel a rant coming on regarding the dismal state of psychiatry, the enormous burden of diagnosis and treatment decisions that fall on the shoulders of the patient at times when that patient is least able to deal with such decisions, etc. Do you ever feel that p-docs just sit at a desk with a prescription pad, prescribe whatever you tell them to, then bill your insurance for a bundle of money? Sometimes I feel so alone and unsupported in dealing with this illness. Always an enormous let-down when I leave the doctor's office wondering if I provided sufficiently accurate info to result in the best treatment decisions.
Thanks in advance to anyone who may provide response to this rambling post.
I am bipolar II, take Wellbutrin SR 400 mg, Lamictal 150 mg (reluctant to increase dose due to hair loss), Ambien 10 mg at night, Ativan as needed, HRT, fish oils, vitamin and mineral supplements including zinc, selenium, and biotin to attenuate the medication-induced hair loss (no luck). Also VNS which seems to help, but with all the meds, and the cyclical nature of the illness itself, who can say what's working and what's not? Oh, yeah, psychotherapy, too, even though I have never found it to be much help beyond having another person to help monitor my state.
Posted by LilyB on October 14, 2002, at 14:59:15
In reply to Topaphobic, posted by Ponder on October 14, 2002, at 14:00:44
I agree......I would like to hear from some people who have had positive results with Topomax. I would also like to hear about anyone who has had trouble getting OFF of Topomax.
With regard to your comment on your pd. My insurance doesn't cover my treatment so I really want my money's worth!! Sometimes, when I express my anxiety about taking medication, my pd will say "Don't you trust me?" To me, that's like saying "Trust me, you'll feel better if you jump off this bridge."
Here is what I need:
Someone to say to me:
Lily, you may experience some side effects with Topomax but if they are too severe you can stop taking the drug and they will go away without leaving any permanent damage. (I know one can't say this with 100% certainty but 90% would be ok for me)
Lily, you do not have seizures now so you will not experience seizures if and when you stop taking Topomax.
Lily, you will not "lose your edge", become stupid or start drooling if you take Topomax.
Can anyone say this stuff to me??? No one has yet.
Boy am I ever a whack job!!
Love,
Lily> As others have commented, the bulk of posts on P-babble about Topa give one pause. People on this board are pretty tough and courageous about tolerating side-effects, if necessary, in order to get efficacy. Still, many have not been able to stick with Topa.
>
> I have a bottle of Topa 25 mg sitting in front of me now and have not yet worked up the resolve to get started. Clinical studies with Topa had a 28% discontinuation rate due to side effects. This compares to 10% with Lamictal. Still, the percentages listed in the prescribing info for Topa suggest that the majority of patients did NOT have these side effects. You wouldn't know that by reading this board.
>
> I think the continued sharing of information and experiences with Topamax is critical here. The benefits, for those who benefit, are substantial. That's why it's hard to dismiss Topa as a dirty drug to be avoided.
>
> Cognitive problems caused by bipolar depression, ECT, and other psych drugs have been so awful, the thought of having them aggravated by Topa is pretty scarey.
>
> Don't know quite what I'm asking for here. Guess I'd like to hear more from people who have had success with Topa, especially those who were able to escape significant side effects by starting very low, increasing very slowly, or by whatever means.
>
> Also...is anyone else frustrated by the difficulty in evaluating the relative contribution of each component of treatment? Seems whenever I run into problems, the p-doc wants to add something. Pretty soon I'm on multiple drugs and wondering why, if they aren't working anymore, I should continue taking all this stuff.
>
> I feel a rant coming on regarding the dismal state of psychiatry, the enormous burden of diagnosis and treatment decisions that fall on the shoulders of the patient at times when that patient is least able to deal with such decisions, etc. Do you ever feel that p-docs just sit at a desk with a prescription pad, prescribe whatever you tell them to, then bill your insurance for a bundle of money? Sometimes I feel so alone and unsupported in dealing with this illness. Always an enormous let-down when I leave the doctor's office wondering if I provided sufficiently accurate info to result in the best treatment decisions.
>
> Thanks in advance to anyone who may provide response to this rambling post.
>
> I am bipolar II, take Wellbutrin SR 400 mg, Lamictal 150 mg (reluctant to increase dose due to hair loss), Ambien 10 mg at night, Ativan as needed, HRT, fish oils, vitamin and mineral supplements including zinc, selenium, and biotin to attenuate the medication-induced hair loss (no luck). Also VNS which seems to help, but with all the meds, and the cyclical nature of the illness itself, who can say what's working and what's not? Oh, yeah, psychotherapy, too, even though I have never found it to be much help beyond having another person to help monitor my state.
Posted by LilyB on October 14, 2002, at 15:03:07
In reply to Re: Topomax-Should I or shouldn't I???? » joy, posted by jellybean on October 14, 2002, at 10:26:54
Thank you, Joy and Jellybean, for giving me some confidence. I'm pretty close to actually trying Topomax.....although who's to say how I'll feel tomorrow.
I'm usually not so cowardly about most things in my life however when it comes to chemicals and my body I'm a big CHICKEN!! Strange....because I'm a child of the 60's and have probably experimented with every drug in the world at some time or another...although not for a good twenty years now. I don't know when I started freaking out about medication. Just the thought of altering my brain gives me shivers.
Love,
Lily
Posted by jellybean on October 14, 2002, at 19:35:31
In reply to Re: Topomax-Should I or shouldn't I????, posted by LilyB on October 14, 2002, at 15:03:07
Ha! - yes, I too am a child of the 60's - I understand the drug (recreational) thing -maybe that's why I too am now so militant about not taking drugs(over-the counter or prescription)- never thought of that connection! Good luck with the topomax, I hope you can let yourself try it and that you have some good results as I have. -j
Posted by ROO on October 15, 2002, at 8:41:10
In reply to Re: Topomax-Should I or shouldn't I????, posted by jellybean on October 14, 2002, at 19:35:31
I have to say, I have been pretty amazed at how much
better I have felt on Topamax...in a pretty short amount
of time...I have just been on it two weeks, and it took me
out of a suicidal depression. My moods are much more even.
I did/do have some of the cognitive stuff but it seems to be
improving with time and it's better than when I was cycling constantly--
my mind was REALLY in bad shape then!
Posted by LilyB on October 15, 2002, at 15:06:11
In reply to Re: Topomax-Should I or shouldn't I????, posted by ROO on October 15, 2002, at 8:41:10
I would like my moods to be even which seems to happen with Topomax but I'm also afraid that I will never be really, really happy when I'm on it.
Lil
Posted by jellybean on October 16, 2002, at 23:16:18
In reply to Re: Topomax-Should I or shouldn't I????, posted by LilyB on October 15, 2002, at 15:06:11
Lily - Well, if it helps, I still seem to be able to be happy - and giddy at times, just not TOO happy - weird happy, if you know what I mean. I'm still my same old goofy self, with my strange sense of humor, my imagination, and my own style. I just don't feeling like killing myself or hiding in a closet or buying 35 lawn chairs or applying for a CEO position that I know nothing about (I can get a wee bit grandiose off meds). Let yourself give Topamax a try if that's what your doc has suggested. It may be right, it may not- but there's no way to find out for sure from anyone but yourself. Although it definitely is helpful to hear from others. I always feel better when I know other people have gone through and are going through the same crappy ordeal with this ridiculous disorder we're stuck with and come out ok. Strength and luck-j
Posted by ROO on October 17, 2002, at 8:24:50
In reply to Re: Topomax-Should I or shouldn't I???? » LilyB, posted by jellybean on October 16, 2002, at 23:16:18
I like it....but I'm just discovering it has
sexual side effects....anyone else have a problem
with this? Weird...I thought this was only supposed
to happen with the ssri's....disappointing...
Posted by Ponder on October 17, 2002, at 15:42:11
In reply to Re: Topomax-Should I or shouldn't I????, posted by ROO on October 15, 2002, at 8:41:10
> I have to say, I have been pretty amazed at how much
> better I have felt on Topamax...in a pretty short amount
> of time...I have just been on it two weeks, and it took me
> out of a suicidal depression. My moods are much more even.
> I did/do have some of the cognitive stuff but it seems to be
> improving with time and it's better than when I was cycling constantly--
> my mind was REALLY in bad shape then!ROO,
Your post is very helpful because it indicates Topa can be a good thing, can in some cases work quickly, and can yield benefits that outweigh the side-effects. A couple of questions for you (forgive me if you've already answered these in other posts that I have not seen): What dose are you on? What other meds are you on? Can you speak more specifically about side-effects, how bad they've been and to what degree they are subsiding. Also, how many lawn chairs constitute a reasonable purchase? ;-)
Posted by ROO on October 18, 2002, at 12:50:39
In reply to Re: Topomax-Should I or shouldn't I???? » ROO, posted by Ponder on October 17, 2002, at 15:42:11
>
What dose
are you on?Just went to 125 mg's last night...I guess I'll be steadily increasing...I'm not
sure to what....I'll ask my p-doc when I see her next.What other meds are you on?
I'm on a very small dose of navane...which is an AP
Can
you speak more specifically about side-effects,
how bad they've been and to what degree they
are subsiding.I've had sexual side effects and cogntive dulling...that's about it. I can't
think quite clearly or focus quite as well. My p-doc suspects that this will
get better with time and that this is also partly the depression, which
is healing. It's harder to explain things, and thus answer your post...
>
>
Posted by mendy on October 20, 2002, at 23:24:28
In reply to Re: Starting on Topomax for Migraines. Advice anyone? » JohnX2, posted by Mitch on November 13, 2001, at 23:35:31
I have suffered with migraines since I was a child. They have grown worse in recent months. I have taken a variety of drugs through the years. I also do Yoga, have eaten fresh feverfew and sought out anyone I thought could relieve me of these life altering periods. About a month ago I was started on a daily dose of depakote. Because of my concern about long term use and possible liver damage the neurologist just switched me to Topomax. You two seem to know what is going on with current treatments. If you don't mind I'd like to join your chat as an observer. After I wrote this and tried to submit it I found myself in a study. Well thats' OK too. I'd just like some answers and if it helps someone else thats fine.
Posted by Joanie on October 21, 2002, at 12:06:35
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by mendy on October 20, 2002, at 23:24:28
I didn't like it at all. It was probably the worst experience with medication I've ever had, and I've tried lots, depakote, amitryptline, paxil, prozac, and now I'm trying lexapro. But... the Topomax is what I called the "stupid" drug. It literally made me unable to think. I would try to type something and not remember how to spell the word. I mean, easy words. It was horrible. I took it for about 2 1/2 months before I said, no more. Hope you have better luck!
Posted by Yosemi on October 23, 2002, at 4:29:23
In reply to Topomax-Should I or shouldn't I????, posted by LilyB on October 12, 2002, at 12:06:36
I have been taking Paxil (on and off) for about three years, and have gained more than 50lbs.
My doc prescribed Topamax to help me lose weight.
At the lower doses (25 mg to 100 mg), I experienced minor side effects such as lethargy, drowsiness, etc., for three to four days after each dose increase.
At 100 mg, I began having problems searching for words/names, and noticed some disorientation at night.
Other side effects included: thirst, swollen tongue, dry eyes, visual effects, dry mucous membranes, and lack of appetite.
I felt nonspecifically "ill", like I had been sitting in a cramped car on a long road trip: tired, not quite headachy, not quite nauseous, etc.
HOWEVER...When I increased to 150mg, I started to notice bleeding gums, morning "film" in my mouth, sore throat, watery diarrhea.
Eventually, I came down with a 10 day "cold".
The drug also seemed to, after time, counteract the antidepressant effects of the Paxil.
In addition, I started experiencing muscle/bone pain in one arm (extending down into palm of hand, thumb, and middle finger--and my shoulder has frozen up.
No significant weight loss either, despite lack of appetite (probably because I felt too lousy to do anything except sleep or read, watch videos, etc.)
Reduced dose to 75 mg but began having strange sensation in my foot--pulsating zap from heel to arch. Is this the tingling people mention, perhaps? I also experienced cold hand (one hand only), dry throat, and sinusitis.
Have since stopped Topamax entirely.
I felt "better" almost immediately, but still am feeling stupid/foggy, and I tire easily.
My shoulder is very painful and keeps me awake at night. The muscles in my arm tense up too. I can now lift my arm up and out to the side, but not behind me or across my chest. The foot symptoms are almost gone.
I feel like I have been poisoned, though. Maybe I will feel better in a week or so, if/when my head clears and my body heals.
I don't think Topamax is for me. Your mileage may vary. If you try it, take it slowly.
Posted by Bill1888 on October 24, 2002, at 2:39:39
In reply to Re: Topomax-I like it...But....., posted by ROO on October 17, 2002, at 8:24:50
> I like it....but I'm just discovering it has
> sexual side effects....anyone else have a problem
> with this? Weird...I thought this was only supposed
> to happen with the ssri's....disappointing...I have had the same experience. I have been taking Topamax for about a month 25mg in the AM and 50mg in the PM so far and have noticed this side effect - no others - but this one. I got off SSRI's and am also taking 150 mg of Welbutrin primarily for this reason. So yes I found it disappointing too.
I found these threads tonight while just looking for general information and started reading and found it riveting (I should be asleep but...) I just thought so little was being said on this subject I would atleast let you know that you are not the only one experiencing this.
Posted by ROO on October 24, 2002, at 8:15:29
In reply to Re: Topomax-I like it...But..... » ROO, posted by Bill1888 on October 24, 2002, at 2:39:39
Bill...
Hang in there...I think it may get a little better
with time...and it's STILL not as bad as with the
ssri's...and I think it may be a matter of timing too...
you've got to find the right time of day and it's not as bad...
you may have already figured all this out already...there are
always other mood stabilizers to try too, and I may do that...sticking
with this one for now though because I have just come off a 5 month trial of
trying about 4 different drugs in a row and my body and mind is worn out from
it...good luck...
Posted by livy on November 3, 2002, at 9:46:29
In reply to Re: Topomax-I like it...But.....Bill, posted by ROO on October 24, 2002, at 8:15:29
I just started Topamax a couple of days ago. I had been on Zyprexa for a few months and was pleased was everything except the weight gain. I next tried Seroquel but was very sleepy all the time. I am now trying Zyprexa with Topamax to counteract the hunger. Question: how long does it take for the sedated feeling to wear off with Topamax? I have a very demanding full-time job that requires me to be mentally sharp. Zyprexa by itself didn't seem to interfere with that but I was outgrowing my wardrobe.
Posted by Bill1888 on November 4, 2002, at 15:37:14
In reply to Re: Topomax-I like it...But.....Bill, posted by livy on November 3, 2002, at 9:46:29
I am a senior level computer programmer for a high profile software firm. I spend almost all my time at customer sites so I too have a very high pressure job that I have to be always "on" for but I have to say I did not feel much in the way of strong side effects.
I cannot say I noticed any pronounced feelings of drowsiness over the drug so I guess I cannot help much but then I am only taking 75mg/day. I have had a reduction in appetite or maybe the anxiety that drives my appetite but it seems to be helping me deal with a life long compulsive eating habit.
My emotions might be a little steadier but it is hard to tell. The sexual side effect is there and I will live wih it for now at least till I get to my weight goals. One of the things I felt the SSRI's did was rob me of the drive to (among other things) work out I do not have that problem with Wellbutrin and Topomax. I am working out regularly. This, in turn, helps with the energy level I expect.
Posted by art1 on November 16, 2002, at 11:48:21
In reply to Re: Topomax-I like it...But.....Bill, posted by livy on November 3, 2002, at 9:46:29
I have bipolar disorder, but funtion at a fairly high level. It's not easy for me, with difficulty concentrating, irritability, and confusion. Not features conducive (sp) to my job. I have just started taking topomax at a dose of 25 mg in the am and will be titering up to 200 mg a day over the course of 2 months. I'm on quite a cocktail: Zyprexa, neurontin, and lamictal. I recently discontinued lithium and wellbutrin due to drug interactions. I'm hoping the topomax will help with my voracious appetite once I get to the full dose. The only side effect I've noticed is a dry mouth. I have good and bad days and am a rapid cycler. Has anyone heard of adding ritilin to the mix? My shrink has eluded to adding this to my regiment as I have problems initiating activity, have mostly depressive symptoms, and am quite apathic about almost everything. Responses would be appreciated.
sincerely, art1
Posted by jellybean on November 16, 2002, at 17:36:18
In reply to oh, the combinations, posted by art1 on November 16, 2002, at 11:48:21
> I have bipolar disorder, but funtion at a fairly high level. It's not easy for me, with difficulty concentrating, irritability, and confusion. Not features conducive (sp) to my job. I have just started taking topomax at a dose of 25 mg in the am and will be titering up to 200 mg a day over the course of 2 months. I'm on quite a cocktail: Zyprexa, neurontin, and lamictal. I recently discontinued lithium and wellbutrin due to drug interactions. I'm hoping the topomax will help with my voracious appetite once I get to the full dose. The only side effect I've noticed is a dry mouth. I have good and bad days and am a rapid cycler. Has anyone heard of adding ritilin to the mix? My shrink has eluded to adding this to my regiment as I have problems initiating activity, have mostly depressive symptoms, and am quite apathic about almost everything. Responses would be appreciated.
> sincerely, art1Hi - I'm a (taking a professional break for now) counselor-with mostly forensic experience- so your post caught my eye! Well - if it helps, I had good luck with adding Adderall(same idea) to the mix - Ritalin didn't agree with me. Adderall brought me into focus. At that point in my drug journey I was taking topamax and celexa with adderall. A good combination at the time. Unfortunately, nothing seems to work "forever" for me - although topamax is still good. I now take topamax 150 mg (night to avoid drowsiness during day), lithium And- I am d/c-ing my anti-depressant (now it's paxil) for the first time in 10? years (I too lean HEAVILY towards the depressive) and I actually feel energized and happier than when I was on them. Not a side effect I expected. So, maybe they should not be taken 365 days a year? don't know. I was not able to curb my appetite or notice pounds slipping away with topamax and paxil in combo, but now that paxil is about out of the picture it's beginning to happen. I lost 50 pounds of drug weight(gained on depakote)while on topamax two years ago if that's any encouragement. Good luck to you. I know how hard it is to keep things going professionally when you're battling bipolar d/o symptoms as well as med side effects. I've been afraid to jump back on the horse professionally for the last 4 years. Just got sick of trying to deal with all the juggling of symptoms and side effects. But I am working and I'll do something professional again at some point soon I think. Take care and I hope Ritalin helps. -j
Posted by Jaycee on November 18, 2002, at 5:17:27
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by mendy on October 20, 2002, at 23:24:28
This is my third week on topamax for migraines, I have not had one since I started on it! The only side effect I noticed was alot of agitation/anxiety, that subsided within a week. I also started on lexapro about 2 months ago. Never felt better!!!
Posted by shar30906 on November 20, 2002, at 22:34:58
In reply to Re: Starting on Topomax for Migraines. Advice anyone?, posted by Jaycee on November 18, 2002, at 5:17:27
I suffered from debilating migranes from three car accidents for 6 years and had taken every mediaction out without much luck. the ony thing i had i has found that helped was chiropractic adjudustments, but their only as good as the dr. the dr. i had found had to move so i was left in the same boat, most of the meds i had taken left me with rebound headaches, that were worse then the migranes, so it didn't matter what i did. I had exactly the same prob with the agitation with the topamax as you did, i had to keep the dosage low at 100mg, and add depakote. they are treating migrane headaces with other anti seizure meds like neurotin, but I found the side effects of that med to be very severe, everey, med effect each of us differenty, so don't give up hope, and you might want to look into chiropractic a few shots, it is not pleasant at first but i was in so much pain at first that i coulndn't turn my head to the left for three years, and now i can, and i can't give credit for that to a med. good luck
shar309906
Posted by stampin_up_gal on November 24, 2002, at 18:24:50
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Hi, I just started taking Topamax two months ago for weight loss and migraines, I was having two a month. The first month was great, I was gradually upped to 100 mg and no migraines, with a 14 lb weight loss. The second month I was upped to 150 mg and I started getting severe headaches in the evening, every night. Now it has turned into one continuous migraine. I thought at first it was stress but since it didn't go away over the weekend I think it is related to Topamax. I have lowered the Topamax to 100 mg but it hasn't helped. Has anyone else had this problem? I am also on Synthroid and was wondering about an interaction causing the migraine. Can anyone help me?
Posted by beachblond on December 2, 2002, at 12:47:18
In reply to Re: Topomax-I like it...But.....Bill, posted by Bill1888 on November 4, 2002, at 15:37:14
I'm taking Topomax for bi-polar II and it definitely helps the mood swings (along with 500mg of Serazone). My issues with it are loss of concentration and ability to remember in short-term. I had to back off of 200mg a day to 100 mg and that got a little better. The worst problem now is tingling and numbness in my fingers, toes and lips. It's better at the lower dosage but still a bother. Anybody else?? P.S. I've had no weight loss. For all of this, I could at least drop a few pounds.
Posted by sjb on December 2, 2002, at 13:35:47
In reply to Topomax woes, posted by beachblond on December 2, 2002, at 12:47:18
You are not alone. The weight loss effects of Topomax, I believe, are overstated in the long run. Every time I see someone post about how they just started and are losing weight, I want to ask, hey, check back in 2-3 months. I lost weight when I went on it intially, but the weight returned after 3 months.
I did not have all the symptoms you described but I know others have. It definately is, "Dopamax" and dulls cognition. As an athlete, I found it made me noticably weaker, also.
Good Luck.
Posted by ROO on December 2, 2002, at 14:08:59
In reply to Re: Topomax woes, posted by sjb on December 2, 2002, at 13:35:47
Yeah, I have the tingly toes, fingers and lips too...
I also have sexual side effects from it....it makes me
numb "down there" too...
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