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Dr. Bob is Robert Hsiung, MD,
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Posted by Murphia on November 12, 2003, at 14:11:05
In reply to Re: Topamax Experiences?, posted by jhlsgirl on November 12, 2003, at 14:03:21
Why have you been prescribed topamax and what do you mean by feel "good" again?
> Hi! I have not yet started Topamax. Just got my RX yesterday. Want to wait til the weekend to see how it effects me. Tell me has anyone lost weight on 25mg only? Does this medication really make you feel good again??
Posted by Sabina on November 12, 2003, at 14:36:14
In reply to re: the benefits of topamax » Sabina, posted by Nervz on November 12, 2003, at 9:33:31
>>> Wow. What a gruff answer. >>>Thanks for all the attitude --- just what I needed.
i'm so sorry. it wasn't at all intended to sound gruff. i was saying that i was *literally* answering your post when i started having a deja vu. (i've got short term memory loss.) then i remembered you from a couple of weeks ago. that's it.
"...i'm sorry you're still so "nervz"-ous about taking topamax that you need to keep asking the same questions."(that was supposed to be a play on words that gives a nod to both your posting name and my *sincere* concern over what you're still going through with your heightened anxiety toward topamax.)
"...maybe after you keep hearing the same answers (about increasing dosage, etc.) from enough different people you'll feel confident enough to try it?"(this was a comment expressing my *hope* that, with enough positive reinforcement, you will feel comfortable enough to take topamax)
again, i am sorry that you were hurt by my post. i was most sincere and good natured in my heart when i wrote to you, and not at all gruff or full of attitude. when i have found myself in your position before, i have always chosen to give the other person the benefit of the doubt, pending further explanation, an apology, or the chance that i had misread. i have never regretted that policy and i have never yet been on the receiving end of a post that was actually intended to be hateful. every time it was a misunderstanding. sometimes there are language barriers. sometimes people are having a bad day or feeling bad on their meds when they first read a post. maybe i should use more emoticons, or just refrain from posting altogether. anyway, i'm doing fine on topamax and i've made my apology, so i'm outtie.
Posted by Sabina on November 12, 2003, at 14:47:52
In reply to re: the benefits of topamax » Nervz, posted by headachequeen on November 12, 2003, at 13:25:23
...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.
bina
Posted by Nervz on November 12, 2003, at 15:23:05
In reply to re: hey, whoa! » Nervz, posted by Sabina on November 12, 2003, at 14:36:14
Oh, wow. I'm so sorry. I guess I should be a little less defensive about these posts. It's so hard to communicate without the use of facial expression and voice inflection. I didn't mean to put my bad mood on anyone else. My anxiety disorder makes me VERY hesitant to try new meds. I've even lied to my pdoc about meds that I never even had filled. I WORRY ABOUT EVERYTHING --- allergic reaction, permanent organ(mostly brain) damage, effects on future pregnancies. You name it, I can worry about it. Again, I am soooooooo sorry for being such a b*tch. I swear I'm a nice person --- Nervz
Posted by headachequeen on November 12, 2003, at 16:45:24
In reply to re: hey, whoa! » Sabina, posted by Nervz on November 12, 2003, at 15:23:05
>> It's so hard to communicate without the use of facial expression and voice inflection. <<
Then, when you want to communicate facial expression insert the little things that help you translate them.... like the <s> and <g> for smile and grin or <S> and <G> for bog smile and big grin...
or LOL for Laughing out Loud and there are always the :( that means a grimace I think??? and the :) that means a smile and that is the end of my fourth language...
sometimes you can invent images that help translate your facial language...
Once in a while there are people on lists who are students conducting blind studies... they need to be shot down.... arrgghhhh (one of my favourite expressions to express myself and I have added it to my outside language as well... so much for the literate person I thought I was lol)
>>I didn't mean to put my bad mood on anyone else.<<
You didn't put your bad mood on me at least... I wanted you to realise that no one to my knowledge at least and I admit I have not been here for more than a couple of months is here to hurt anyone else... the intention is to learn and to share...
and you can relax... really you can...
I have learned that...>>My anxiety disorder makes me VERY hesitant to try new meds. I've even lied to my pdoc about meds that I never even had filled.<<
Hey! Been there, did that, and may have the t-shirts made... I have all sorts of prescriptions in my purses and briefcases that are waiting to see the light of day because I am not sure they are the ones that I really want to take... or because I have not yet completed the previous doses...or in the case of the effexor, immovane, and zyprexa I had already quit taking the stuff and had not the nerve to tell him in case he quit treating me... non-compliant patients and all that :(
I really thought the anti-d's were doing more harm than good and it was time to stop, so I stopped with no idea that it was not something I could just do on my own... and I am supposed to be intelligent (sigh) -- I had also cut back on my allergy meds a few days before because he felt the dosage was much too high and potentially risky... I was originally taking 8 a day of hydroxyzine (Atarax) and had cut down to 4 a day at his suggestion and had cut down to 2 a few days before with quite a struggle... the Effexor/Zyprexa/Immovane stoppage was no problem compared to that...
When I finally told him he was not angry... and I was relieved...
so you see, we are not all that different..
you have to trust us...
we are quite a mixed group and there is a lot of help here, so I have found...
I have learned so much here...
and you will too... trust me....
and we know you are a nice person....
You just have to learn to let us be us and let you be that nice person and let all of us interact comfortably...
kat
I swear I'm a nice person --- Nervz
Posted by headachequeen on November 12, 2003, at 16:51:32
In reply to re: thank you... » headachequeen, posted by Sabina on November 12, 2003, at 14:47:52
Hi again... and more questions...
by the way... someone asked about weight loss at 25 mg... I lost 3 pounds the first week at 25 mg ...
not much but a start...My question regards protein...
I have started the vitamins and have included amino acid complex as I do for the dogs...
and am wondering if I should make meals mostly protein... I am not hungry as I mentioned but I do want protein at meal time... is this an indication that there is a need for it???
does topomax perhaps deplete protein?
and does it cause throat irritation and cought???
Posted by Sunny-Dee on November 12, 2003, at 18:16:14
In reply to Re: Topamax Side Affects! » California_Princess, posted by platinumbride on October 14, 2003, at 11:13:03
Diane,
I was interested in your remark about hairloss.
I've been on Topomax for 1 1/2 years. My once thick, wavy hair has become very thinned out and straight. Do you feel your hairloss is related to the Topomax?SD
Posted by Murphia on November 13, 2003, at 9:08:57
In reply to Re: Topamax Side Affects!, posted by Sunny-Dee on November 12, 2003, at 18:16:14
Hair loss is a very common complaint among topamax users. I have talked with Ortho, and they are aware of it. All mood stabilizers/anti-convulsants have some hair loss complaints.
As for the protein question - you do not not need more protein. That is part of the appetite suppresssion, you crave less carbs and sweets. Also, carbonated drinks will taste bad, and your taste will be affected a little overall.
> Diane,
>
> I was interested in your remark about hairloss.
> I've been on Topomax for 1 1/2 years. My once thick, wavy hair has become very thinned out and straight. Do you feel your hairloss is related to the Topomax?
>
> SD
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
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