![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 629 to 653 of 1085. Go back in thread:
Posted by headachequeen on November 13, 2003, at 9:39:04
In reply to re: thank you... » headachequeen, posted by Sabina on November 12, 2003, at 14:47:52
> ...for sticking up for me. you didn't have to do that. it means more to me than you can know. i was feeling a little rattled and ready to run away there for a minute.
>
> binaI think we all find things tend to rattle us, perhaps more than they would bother other people... if that were not the case, then we would not be here...We are a little extra sensitive
we would not need the extra help of the pdocs and the meds... I am still adjusting to the reality of having a personality disorder that needs to be treated so that I can live a normal life, although my psychologist tells me there is really no such thing as a normal life, that each of us defines normal within ourselves -- then why do I need to see him in the first place <g>
Anyway, you are most welcome...
and who knows when it will be you helping me through the rocky places
kat
Posted by jhlsgirl on November 13, 2003, at 13:46:31
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
I mean does Topamax REALLY help with depression? Thats what my doc is rx for primarly.
Posted by Murphia on November 13, 2003, at 13:52:34
In reply to Re: Topamax Experiences?, posted by jhlsgirl on November 13, 2003, at 13:46:31
No, topamax is not recommended for and doesn't do much for depression. Topamax can cause depression, as it is increased in dosage. Sorry, wish I had better news. Murph
Posted by TexasChic on November 13, 2003, at 14:16:03
In reply to Re: Topamax Side Affects!, posted by Sunny-Dee on November 12, 2003, at 18:16:14
I had a weird side effect this morning, at least I'm assuming it was from the Topamax. For about the first 5 minutes after I got up I saw tracers! At first I thought I walked through a spiderweb, but as I turned and moved my hands around I realized I was seeing tracers! It only lasted a few minutes, but it was pretty trippy. I did have a few beers last night, but I've had a few before with no consequences (I'm taking 75 mg). I'm thinking this may be tied to the other eye related side effects Topamax has. Or else I'm flashing back to the single time in my life I tried acid when I was a teenager...
...surely not.
Posted by Murphia on November 13, 2003, at 14:56:53
In reply to Re: Topamax Side Affects!, posted by TexasChic on November 13, 2003, at 14:16:03
Tracers are a side effect of topamax. Tracers are a common side effect with depakote also. Tracers in and of themselves aren't harmful to your eyes, but you do need to see an opthomologist regularly on topa, as sudden changes in eyesight and glaucoma are side effects of topa.
> I had a weird side effect this morning, at least I'm assuming it was from the Topamax. For about the first 5 minutes after I got up I saw tracers! At first I thought I walked through a spiderweb, but as I turned and moved my hands around I realized I was seeing tracers! It only lasted a few minutes, but it was pretty trippy. I did have a few beers last night, but I've had a few before with no consequences (I'm taking 75 mg). I'm thinking this may be tied to the other eye related side effects Topamax has. Or else I'm flashing back to the single time in my life I tried acid when I was a teenager...
> ...surely not.
Posted by headachequeen on November 13, 2003, at 16:46:34
In reply to Re: Topamax Side Affects!, posted by TexasChic on November 13, 2003, at 14:16:03
> I had a weird side effect this morning, at least I'm assuming it was from the Topamax. For about the first 5 minutes after I got up I saw tracers! At first I thought I walked through a spiderweb, but as I turned and moved my hands around I realized I was seeing tracers! It only lasted a few minutes, but it was pretty trippy. I did have a few beers last night, but I've had a few before with no consequences (I'm taking 75 mg). I'm thinking this may be tied to the other eye related side effects Topamax has. Or else I'm flashing back to the single time in my life I tried acid when I was a teenager...
> ...surely not.Okay, question time again, can you describe these 'tracers'. It is really important, especially given the comment that you first thought you had walked through a spider web.
Posted by Sunny-Dee on November 13, 2003, at 17:35:34
In reply to Re: Topamax Side Affects! » TexasChic, posted by headachequeen on November 13, 2003, at 16:46:34
Thanks for your responses. It helps to know that I'm not alone in some of these side effects for which they don't describe in their liturature. I can understand why my other doctors weren't having any luck finding the cause of my hairloss.
Someone mentioned "tracers".....your description of walking into a spider web was EXACTLY how I kept feeling, but never thought of it as "tracers" or from the Topomax. Thanks and I'll make my eye exam appt., SOON!
Posted by TexasChic on November 14, 2003, at 8:29:17
In reply to Re: Topamax Side Affects! » TexasChic, posted by headachequeen on November 13, 2003, at 16:46:34
> Okay, question time again, can you describe these 'tracers'. It is really important, especially given the comment that you first thought you had walked through a spider web.
>
Well, I had just woke up and was walking to the bathroom, and I saw something white and fuzzy out of the corner of my eye, I was still half asleep and my first thought was 'spider web', even though I've never seen one in the middle of my bathroom before, I turned around and put my hand up, and that's when I noticed the tracers; ghost-like after-images of everything that moves. Like I said earlier, it only lasted a few minutes, and I was never really awake enough to really analyze the whole thing (I also take 50 mg Trazodone (sp?) at night to sleep, so I'm pretty groggy in the mornings), but the experience was weird enough to leave a pretty vivid impression on me. Why do you say this is really important?
Posted by Headachequeen on November 14, 2003, at 10:15:02
In reply to Re: Topamax Side Affects! Headachequeen, posted by TexasChic on November 14, 2003, at 8:29:17
> and that's when I noticed the tracers; ghost-like after-images of everything that moves. Like I said earlier, it only lasted a few minutes, and I was never really awake enough to really analyze the whole thing (I also take 50 mg Trazodone (sp?) at night to sleep, so I'm pretty groggy in the mornings), but the experience was weird enough to leave a pretty vivid impression on me. Why do you say this is really important?
>At times I actually see cobwebs in front of my eyes and at other times I have this double vision effect -- the ghost-like after images that you describe, above sometimes and other times below, the things I am looking at... and hard to describe to the doctors... apparently the cobweb effect is linked to cataract and the opthamologist who diagnosed them tells me I am very young to have them... well not my fault after all, he diagnosed them...
but the other ghost images he is unable to link to anything and I think they think I am out of my mind entirely; it does not happen all the time and does not link to the MG ... and I begin to think sometimes that I am losing it entirely...
Is this another side effect of anti-convulsants???
or just of Topomax? and why can I find nothing about Tegretol? or do they just assume that having been around for so long it has no side effects....
so blame it all on Topomax???
meanwhile, thanks for the added help...
Posted by sarita0001 on November 14, 2003, at 10:17:09
In reply to Re: Topamax Side Affects! Headachequeen » TexasChic, posted by Headachequeen on November 14, 2003, at 10:15:02
Hi
My friend was on tegretol and told me that she used to see lines all the time and stuff like you described in front of her. Like when she would talk to people there would be lines over their face, etc.
Sara
Posted by headachequeen on November 14, 2003, at 11:28:38
In reply to Re: Topamax Side Affects! Headachequeen, posted by sarita0001 on November 14, 2003, at 10:17:09
> Hi
>
> My friend was on tegretol and told me that she used to see lines all the time and stuff like you described in front of her. Like when she would talk to people there would be lines over their face, etc.
>
> SaraWell I guess it is a case of be careful what you wish for... I just found a site about Tegretol... and found out all sorts of things about it that I think makes Topomax seem easy to live with... and makes the whole thing confusing...
there is weight gain with Tegretol... everyone on the list complained of weight gain... many complained of nausea, dizziness, poor memory, poor speech, loss of fluid speech, inability to remember words and names, inability to recognise words when reading, hard to concentrate when reading... and I forget what else shall have to go back and read the list again... found out more about the types of epilepsy... and that Tegretol is not advised for anyone over 60 it would seem... and on and on...
one person stated she had been through all the horrors of Tegretol and that certainly got my attention... shall read her posts when I get back in :(...
so I guess the older drugs are not sainted after all... some of these posts go back to a time when Topomax was just coming on stream...
One person was on a dosage of 1600 mg of Tegretol... scary stuff that...
so here I am on a cocktail of drugs: one that causes weight gain and I remember the pharamacist warning me that Tegretol would cause weight gain now that I think of it... and one that causes weight loss... thank heaven the weight loss is winning!!!
I was better off not knowing about Tegretol!!!!!!!
Posted by TexasChic on November 14, 2003, at 13:59:54
In reply to Re: Topamax Side Affects! Headachequeen » TexasChic, posted by Headachequeen on November 14, 2003, at 10:15:02
> but the other ghost images he is unable to link to anything and I think they think I am out of my mind entirely; it does not happen all the time and does not link to the MG ... and I begin to think sometimes that I am losing it entirely...
At least now you know you aren't out of your mind! Its a real SE. Its amazing how doctors can look at you like you're crazy just because something is new to them. They have to learn about things sometime – they don't just pop out of medical school "all knowing". But yet I think a whole lot of people have gotten the old "oh, no, it couldn't be connected to that" brush off, or worse, that disbelieving look that tells you they think you're nuts. I think they have to put up a front because if everybody really knew how much they were winging it, nobody would listen to them!
Posted by headachequeen on November 14, 2003, at 16:59:24
In reply to Re: Topamax Side Affects! Headachequeen, posted by TexasChic on November 14, 2003, at 13:59:54
> At least now you know you aren't out of your mind! Its a real SE. Its amazing how doctors can look at you like you're crazy just because something is new to them. They have to learn about things sometime – they don't just pop out of medical school "all knowing". But yet I think a whole lot of people have gotten the old "oh, no, it couldn't be connected to that" brush off, or worse, that disbelieving look that tells you they think you're nuts. I think they have to put up a front because if everybody really knew how much they were winging it, nobody would listen to them!<<
I have an appointment with the neuro a couple of days after I get home from here... going to run it all by him and make him listen... should be interesting experience trying to make him listen.. but shall give that a shot... and then the eye guy next..these people have to get together I think and work things out for my benefit... here I have been so concerned about the SEs of Topomax and there are all these SEs with Tegretol and they sound just as scary... I feel like a walking mine field...and if I stop taking either let alone both all the mines blow up!
Posted by chik on November 14, 2003, at 21:03:25
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
Just a question...Has anybody not experienced hair loss with this drug. If you haven't what kind of dosage were you on? Also, has anybody found a vitamin or supplement that counteracts the hairloss SE? I read some of you guys are taking Biotin..is that working for any of you guys? I just started taking Topamax and I'm a little nervous about the hairloss SE..Let me know of any helpful information or personal experiences..thanks
Posted by verygood on November 14, 2003, at 22:51:08
In reply to Re: Topamax Experiences?, posted by chik on November 14, 2003, at 21:03:25
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
Posted by oh my achin' head! on November 15, 2003, at 15:32:34
In reply to Re: Topamax Experiences?, posted by verygood on November 14, 2003, at 22:51:08
Oh, how I wish I had found this site sooner, it would have saved me a lot of money, visits to specialists and a lot of unnecessary worries. I have been taking Topamax for about 6 months. I have gone from 25mg to 50mg to 75mg dosage. I am taking the drug for constant daily, severe migraines and am finally seeing results at this dosage. I was prescribed by my Primary Care physician who admitted he really knew nothing about the drug so when the side effects began he didn’t recognize them and started sending me off to specialists! The main problems that I can now attribute to the Topamax, thanks to your helpful site are; extreme thirst, dry sore mouth and tongue, decreased cognitive skills (getting “stupider” by the day!!), constant tingling and pins and needle feeling in my hands and feet, and blurry eyesight. I would love to know if and when some of these side effects might dwindle?
Also, what I would like to ask you kind folks about is: I noticed kidney stones were mentioned as a side effect of Topamax.... I have been experiencing constant, severe, pelvic and groin area pain and frequent urinating but with no pain while urinating. Nothing abnormal shows up on CT or abdomen or pelvic ultra sound. I was wondering if anyone else out there has experienced anything similar or has any advice. I have seen an urologist, general surgeon (checked for hernias), gynecologist, (did endometrial biopsy). Any ideas? Could this pain be Topamax related? Thanks so much!
Posted by chik on November 16, 2003, at 9:24:11
In reply to Re: Topamax Experiences?, posted by verygood on November 14, 2003, at 22:51:08
> 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 info
Posted by headcase on November 16, 2003, at 13:25:30
In reply to Re: Topamax Experiences?, posted by chik on November 16, 2003, at 9:24:11
I have been on Topamax just a few months now. 50 mg at night. No weight loss yet. I'm on it for migraines only. This month is the first month I've seen any real relief. I've had tingling and dry mouth. I can live with all that. Woozy at times. I can live with that too. And now my period is a week late, and I've been pretty regular lately. Anybody find that Topamax is affecting your cycle?
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
Posted by oh my achin' head! on November 16, 2003, at 20:28:27
In reply to Topamax and Severe Abdomin Pain, posted by DarcyP on November 1, 2003, at 3:50:41
Posted by Bear on November 16, 2003, at 22:12:14
In reply to Topamax and Severe Abdomin Pain, posted by DarcyP on November 1, 2003, at 3:50:41
> I have lost about 75 Pounds over the last year taking Topamax,but now I am faced with severe abdominal pain,I have been tested for everything,from Urinary Tract Infections,Kidney Stones to STD'S everything comes back clean(Thank-God)but my Doctor is totally baffled as to whats causing my pain,I see that one of the side effects is severe abdominal pain does anyone know if a person could start getting this after a year of taking it with no problems?Oh and the pain started on the right side and has spread to the left and doesnt leave even with painkillers it's a constant pain...Thanks for your help
First congrats on the weight! WOW! I am not losing anything near that! I havent weighed myself, but Im losing some inches, but I KNOW I havent lost antyhing near even 20 lbs., probably not even 10, Ive been on it about 2 months now.
But since Wednesday I have unexplained severe abdominal pain along with diarrhea, which thankfully stopped now, but the abdominal pain is still here. I didnt know that was a side effect! I didnt read that anywhere! It's only on my left side. I dont have ANY symptoms of kidney stones (I drink 64+ ounces of water a day), mine isnt even constant, only in certain positions. How long have you have had it?
And please tell me more about the weight loss
Posted by Murphia on November 17, 2003, at 7:41:09
In reply to Re: Topamax Experiences?, posted by verygood on November 16, 2003, at 14:33:04
I would like to ask you your sources for this information, and also if you could cite the sources. As I am researcher, continuing research on topamax, I like to check sources. Thanks much!
> > > 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 info
>
> Hi 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
>
>
>
Posted by TexasChic on November 17, 2003, at 8:39:52
In reply to Re: Topamax Experiences?, posted by headcase on November 16, 2003, at 13:25:30
I'm on birth control and the Topamax is disrupting my cycle, so maybe it effects your cycle without the BC's in the same way. I have the dry mouth and the tingling too. The wooziness went away, but the annoying things that are lingering for me are tiredness and the short term memory loss. I was leaving work last week all ready to go to my therapist, I got in the car, drove straight home, and never gave it another thought until the next day (I guess that qualifies as 'short term'). I'm at 75 mg.
Posted by headachequeen on November 17, 2003, at 11:18:44
In reply to Re: Topamax Experiences?, posted by verygood on November 16, 2003, at 14:33:04
> > > 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
I am sorry.. sorry that you have to deal with the loss and frustration at the lack of sensitivity and understanding she met... and sorry that she met such a lack of care when she went into hospital for help...
why is it that the physical ailments are so overruled by the psychiatric ones?
and at the moment my sense of frustration for you in your grief and pain for your student and your loss is huge... our system takes the easy way out every time...no matter the cost to its victims
Posted by TexasChic on November 17, 2003, at 13:03:03
In reply to Re: Topamax Experiences?, posted by TexasChic on November 17, 2003, at 8:39:52
This isn't really a reply to anything, it was something I was just wondering. I started Topamax and Lexapro at the same time. I'm beginning to think this was not such a bright idea. For one thing, I've read Topamax can cause depression, as well as anxiety, tingling in limbs, tiredness, and cognitive impairment; then I read Lexapro can cause anxiety, tiredness, tingling in limbs, confusion, ect. How am I supposed to know what is causing what S/E? Or what's working, and what's not?! It's crazy! I have no idea if the Lexapro is working for the depression, because the Topamax could be causing the depression I feel, and I have no idea if the Topamax or the Lexapro is causing the anxiety I feel. The Topamax is helping me curb my appetite during the day, but not helping my night binges, which is why I was prescribed it. Plus I have that interference with my BC's (described in previous posts), so I'm thinking of dropping it altogether. I go to see my doc today, so I'll see what she says.
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