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.
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> 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.
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> 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.
poster:LilyB
thread:50878
URL: http://www.dr-bob.org/babble/20021012/msgs/123624.html