Posted by verygood on November 16, 2003, at 14:33:04
In reply to Re: Topamax Experiences?, posted by chik on November 16, 2003, at 9:24:11
> > This is my first post here. I am taking 150 mg of topamax, split 50 at am and 100 at pm. So far it is doing a good job dealing with my issues of BP. Have been on it since the 15th of October and have to say that I have lost weight even though I wasn't really overweight to begin with. All of the other medicines I tried just didn't do that well with respect to my rapid cycling problem. This is a test. LOL.
> > Anyway, with respect to the question posted above, I have been told...prolonged use of antiseizure medication interferes with the production of biotin, choline and PABA.
> > Biotin deficiency syptoms can include fatigue, lack of appetite, dermititis, hair loss, anemia, nausea, depression and brittle nails.
> > Choline is a neurotransmitter of the brain and a deficiency there can alter your alert status a bit causing you to become a somewhat stupid. DUH??? PABA plays an important role in determining skin health , hair pigmentation and health of the intestines.
> > So...what I am doing is supplementing my diet with a dose of 2,500mcg of biotin, 500mg of PABA and 250mg of Choline once a day. In additon, I take 500mg of Magnesium for fatigue and maintenence of glucose function, coral calcium and ultra mega vitamins for woman. I know, it is a lot. But...what the heck. I didn't ask for a life of medication and if I have to swallow a few vitamins to keep the nasty side effects away, I guess I will. Hope it is the right combination. So far I haven't lost much hair at all, but it is still early. And my sentences are still complete. Sex is still good and...well need I say more?
> > Thank you all for sharing your experiences.I have appreciated it.
> > Yours in the fight against stigma,
> > VeryGood
> I'm glad you're doing so good. I'm doing very good on Topa too. I'm just pretty tired all the time..but it deffinitely beats how I was feeling before...Who told you all that info on prolonged use of anti-seizure meds? I find it very interesting and I would deffinitely consider taking those supplements but I just wanted to make sure it came from a credible source..no offense to you..but you never know these days what to believe..thanks for the infoHi Chic,
Thank you for your post. I am glad to hear Topamax is doing a good job for you as well.
Please don't take what I posted previously to be construed as fact. It was as I said, what I had been told.
Topamax for persons with bp was not it's intended use and yet I am trusting some unknown entity who decided it was alright for me to use it for that purpose and now I am trusting some people I have met professionally and publications to help me deal with the nasty side effects. LOL, It feels like being part of a research study.
Please stay with me here, I have a lot to say today. :)
I am Executive Director for an advocacy organization that works on behalf of people who are in recovery from psychiatric and co-occuring disabilities.
In addition to our legislative advocacy work we have a 16 week college level course that graduates people to become advocates and a 6 month internship program following graduation.
It is very exciting work.
We have been instrumental in making significant change within the mental health system on behalf of people who have psychiatric disabilities but still have a lot of work to do.
Realizing that a persons life encompasses the full spectrum of lifes color, when we educate we focus on the full measure of a persons well being, regardless of whether that person makes the choice to take or not take medication. After all choice is a fundamental right of every citizen and it should be no different for a person who has a psychiatric disability.
Information is simply that, an offering of ideas and suggestions to help one maintain the quality of life they would like to have including such things as: safe affordable housing, a way to get around, a career and loving relationships to name a few.
Medication side effects can sometimes rob us of that ability as much as the illness itself. For that reason our Doctors should always take the time to educate us about the side effects and help us to understand completely what we may be facing. Then they should allow us to make the decision as to whether we want to take that medication or not. If we choose the latter it would be incumbent upon them to work with us until we found a suitable option. A lot of doctors do not do that. Some just don't think we are capable of making that decision or just don't want to take the time. I know we are very capable of making that choice and in fact want very much to be involved in our own treatment plans.
It is my opinion that this is why so many of us end up in medication hell. The doctor prescribes, doesn't educate, doesn't listen to our concerns....side effects cause our quality of life to decline...we stop taking it, recovery regresses, or we end up in the hospital, the doctor then adds more meds or trys new meds... and the horrible cycle starts again.
It is a nightmare. LMAO!!! We need to start insisting on participation at all levels of our treatment planning, making sure our doctors listen to us and letting them know that only when we fully understand the options before us will we then make an educated choice. Remember this, Noah built the arc. He was an amatuer. Professionals, built the TITANIC.
Anyway Chic, thank you for allowing me to blow off some steam. I feel much better. :)
The information I offered in my post yesterday was quoted from the "Nutriton Almanac," fith edition. This information has also been taught to my advanced education classes over the years by a very good nutritionist pal of mine who referred me to this resource. When I was prescribed Topamax I subsequently tried to confirm what I had been hearing with some research through the internet and compared what I was hearing with the contraindications in the topamax studies.
To make a very, very long story short....I am still not sure if all of this is going to make a difference in dealing with the nasty side effects of this medicine, but it is a start.
Topamax does seem to be working for me so far but as I said, it is still very early. I have nothing but hope and without hope there is nothing.
Sorry this post was so dang long. I am fired up today. One of my students died in four point restraint, after going in for a physical complaint. She had diabetes. All they focused on was her psychiatric disability. She was allergic to the antipsychotic injection they gave her which caused her death and now we are left to wonder why.
Once again thank you all for the postings and take care.
Yours in the fight for our rights,
VeryGood
poster:verygood
thread:50878
URL: http://www.dr-bob.org/babble/20031116/msgs/280299.html