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Dr. Bob is Robert Hsiung, MD,
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Posted by bridgey1128 on February 3, 2004, at 8:33:14
In reply to Re: topomax » tmg, posted by headachequeen on February 2, 2004, at 19:46:41
Prozac made me bonkers! It made me very agitated. I could only take it for a week! Welbutrin I took for about 3 months and it made my mouth SOOOO dry..this was just LOVELY since I was doing a show at the time. NICE trying to sing under hot lights when you feel like your mouth already has 15 cotton balls stuffed in it! It KINDA worked but never really did much..it eventually started making me nuts too. I guess that is where my bipolar comes in. I shouldn't have been taking it to begin with. It did the same thing to my brother who was taking it to help him stop smoking. I never did black out with the Welbutrin but it never did much for me anyway. I didn't like the Effexor at all. When I was on it, it was ok, but it never did anything but boost my libido through the freaking roof. When I tried to COME OFF IT, now THAT was another story. It was the most horrid thing I have ever had to do! Brain shivers, headaches, diziness. I felt like I wanted to die. This went ON AND ON AND ON. I finally just STOPPED taking it because I realized weaning was just going to keep it going and if I was going to have side effects I might as well have them with nothing as well as something. They stopped abruptly when I took an Ativan. I dunno what it did to stop them but it helped EMMENSELY. I would lie there at night before then and listen to this ch ch ch going on in my ears every 5 secs. It's like having your own percussion section in your head at all hours. I actually STILL have that problem now although I am not sure if it's now associated with the Topomax or not. Anyway, not much to add but thought I would put my two cents in anyway.
Posted by headachequeen on February 3, 2004, at 22:46:55
In reply to Re: topomax, posted by bridgey1128 on February 3, 2004, at 8:33:14
in my ears every 5 secs. It's like having your own percussion section in your head at all hours. I actually STILL have that problem now although I am not sure if it's now associated with the Topomax or not. Anyway, not much to add but thought I would put my two cents in anyway.
I know that my doctor told me that anyone coming off Effexor has to do it slowly and while under close supervision; same with Zyprexa...
and I am not sure if it is Tegretol or Topomas but one of them sets up a ringing and clanging in my ears that makes me think that I have the entire cymbals and triangle and tambourine section of some marching band in my ears at times... other times it seems as if there is a low keyed whistle in there...
most off-putting to say the least...
since I started taking the topomax again the tingling so-called has lessened... none at all in my face.. that was AWFUL... and it is much less painful in my hands and feet...
there has to be a way to deal with this...
I need the stuff but does it have to hurt????
kat
Posted by T34 on February 4, 2004, at 3:58:16
In reply to Re: topomax » bridgey1128, posted by headachequeen on February 3, 2004, at 22:46:55
I was on Topomax for 6 weeks after having had migraines everyday for 6 months. After 3 weeks I had not had the first sign of a migraine. It was Heaven. The side effects from the Topomax were horrid. My point, though, I had decided it didn't matter if I had to put up with my teeth falling out as long as I didn't have those awful headaches everyday, but I started having that ringing (high pitched squeal) in my ears. My neuro. had me stop the Topomax immediately. He said that it could/ would cause permanent hearing damage quickly. I stopped the Topomax and two days later the squealing was gone. Now I am on Zoneqran, and having headaches everyday again. Oh well, he keeps telling me we'll find that good mix, it's trial and error, but I'm tired of the trials!
Posted by bridgey1128 on February 4, 2004, at 8:30:11
In reply to Re: topomax, posted by T34 on February 4, 2004, at 3:58:16
my tingling isn't painful for me, just ....well there. It feels like when you are getting ready to pass out and you have been hyperventilating. Other than that I haven't had any side effects other than the memory loss. I think! I can't remember! Just kidding. But seriously, I think that is starting to be on. I am only on 50mg. Should that be a side effect already? I mean I have had problems remembering things for quite some time anyway but now I can really only concentrate on one thing at a time. I get distracted pretty easily. I have told my family BE PATIENT and don't interrupt me when I am in the middle of something because I will TOTALLY lose track of what I am doing. I want to continue to take this if only for the weight loss benefit, but I can't if it means I am going to become senile. Any thoughts??
Posted by tmg on February 4, 2004, at 17:07:33
In reply to Re: topomax, posted by T34 on February 4, 2004, at 3:58:16
Sorry If you already answered this question, but what horried experiences did you have while on Topomax? Don't spare any details, I want to hear it all!
Thanks!
Posted by Ladee52 on February 4, 2004, at 18:08:27
In reply to Re: topomax, posted by tmg on February 4, 2004, at 17:07:33
> Sorry If you already answered this question, but what horried experiences did you have while on Topomax? Don't spare any details, I want to hear it all!
>
> Thanks!Thought I would add my thoughts. I've been on Topomax since the middle of December for migraine headaches. My neurologist started me out very slowly at 25 mg's and increased the dosage by 25 mg's every two weeks and I now take 100 mg's daily. I'd had a migraine for close to two months and it is now just a mild, tolerable headache that is getting weaker every day and which we think will soon go away. It is SOOO much better than what it was. Anyway, I have had little or no side effects. The first few weeks my face broke out really bad and I'm 51 years old, but it's clearing up now. I did have a bit of tingling in my feet, like when you're feet have gone to sleep on you, but it wasn't painful at all and that has gone away. Unfortunately, I haven't noticed that my appetite has been suppressed and that I was looking forward to. LOL! (I gained some weight I didn't need to gain while I was incapacited with my headache in November and December). I also take Effexor with the Topomax and don't have any ill effects from it. Just work with your doctor and find what works for you. Everything works differently with different people, but do take it slowly with the Topomax and good luck.
Ladee
Posted by T34 on February 5, 2004, at 16:03:36
In reply to Re: topomax, posted by bridgey1128 on February 4, 2004, at 8:30:11
I went through some of the short term memory loss and it was extremely frustrating. It wasn't but a week later when I had to stop taking it, so I don't know if it would have gotten better over time. I have heard that it does.
Posted by bridgey1128 on February 5, 2004, at 16:13:07
In reply to Re: topomax, posted by Ladee52 on February 4, 2004, at 18:08:27
PS: The Effexor didn't work for me because I am bipolar. I didn't have any side effects while ON it other than MASSIVELY increased libido and after taking it for 2 months I started to have a headache that wouldn't go away. It just never did anything FOR me. It was the COMING OFF of it that was so horrid. THAT I wouldn't wish on anyone! So if you ever have to come off it, do it VERY VERY slowly.
Posted by tmg on February 6, 2004, at 7:48:02
In reply to Re: topomax, posted by bridgey1128 on February 5, 2004, at 16:13:07
I am currently taking Prozac and have NO libido. Any thoughts on what Topomax does in that area?
Posted by bridgey1128 on February 6, 2004, at 9:36:34
In reply to Re: topomax, posted by tmg on February 6, 2004, at 7:48:02
I think it has decreased mine a tad and I am only taking 50mg. I think pretty much all the antidepressants do that. Effexor upped it so that my HUSBAND couldn't keep up with me. But I wouldn't recommend that drug simply because of the withdrawl. My Dr said he had never heard of that side effect but my friend said she had the same thing happen to her.
Posted by helenag on February 6, 2004, at 9:45:41
In reply to Re: topomax, posted by tmg on February 6, 2004, at 7:48:02
I've been on topamax nine months and am currently on 300mg a day. Am also on effexor at 300mg a day. So, I can't answer to the libido question of topamax since I am on both drugs.
I can say that the short term memory aspect of topamax is with me still. I do forget people's names from time to time, especially if I am stressed and tired. This is embarrassing at work. I don't forget names of people I work with closely, but other managers, etc., I have been known to completely blank out their names. Other things I blank out on are some of children's friends' names, brand names of the items I work with at work, sometimes even names of everyday items.
Still get numbness and tingling at times, too.These side effects, especially the loss of memory, are a small price to pay for the mood stabilization I have found with this drug. It has helped me where other drugs have not.
Posted by dragonfly25 on February 6, 2004, at 14:29:09
In reply to Re: topomax, posted by tmg on February 6, 2004, at 7:48:02
I have no idea how common this is...but my sex drive has decreased significantly since coming off of topamax.
Posted by Sooshi on February 7, 2004, at 9:38:52
In reply to Re: topomax, posted by tmg on February 6, 2004, at 7:48:02
Definately an increase in libido since starting Topamax for me......
Posted by dragonfly25 on February 7, 2004, at 12:36:13
In reply to Re: topomax, posted by Sooshi on February 7, 2004, at 9:38:52
So it isn't in my head? I couldn't figure it out and that was my only thought.
Posted by Sooshi on February 7, 2004, at 21:21:23
In reply to Re: topomax » Sooshi, posted by dragonfly25 on February 7, 2004, at 12:36:13
Oh no..it's not all in your head! Effexor dampened my libido, Topamax took it WAY back up. This is just my case and I doubt it's doing this for everyone. In any case, without being too graphic, I'm much more easily stimulated and reach the big "O" alot quicker! Yipee! So, it not only helped stabilize my mood and lose weight, but it increased my libido too (I swear I don't work for them.....)
Posted by aussie on February 8, 2004, at 19:47:26
In reply to Re: topomax » dragonfly25, posted by Sooshi on February 7, 2004, at 21:21:23
This is my first ever post - a bit nervous!
I've been and am on serzone and effoxor andcan vouch for loss of libido. However I can second the other reader's finding of Topomax helping out on this score! I've just been on it awhile and already I'm interested again.........
Hopefully if Topomax helps me I can get off the serzone. :(
I kind of like the Effexor.
It was nice to read about Topomax taking somepeople's headaches away. I get two-three day atypical migraines. Kind of like a hang over but wihtout any alcohol!
Posted by witchyminx on March 6, 2004, at 19:06:12
In reply to Re: topomax » Sooshi, posted by aussie on February 8, 2004, at 19:47:26
My doctor is talking about prescribing me a mood stabilizier and/or possibly an antidepressant. My moods seem to need controlled more though. I wanted to bring this med up to him. I get migraines and heard tihs would help. I also heard it is used for keeping moods from getting out of hand. Plus after being on Elavil, I would love to lose the weight seeing as I gained 44 pounds on it (which made me more depressed). May other questions concerning this though, is I have high bood pressure. Has anyone had issues of it either going up or down on Topomax? And is the rest of my understanding seemingly correct. I would really love some feedback, bcs this seems too good to be true and it would solve quite a few problems for me at one shot if it is all true.
Posted by headachequeen on March 7, 2004, at 13:03:56
In reply to Re: topomax, posted by witchyminx on March 6, 2004, at 19:06:12
> My doctor is talking about prescribing me a mood stabilizier and/or possibly an antidepressant. My moods seem to need controlled more though. I wanted to bring this med up to him. I get migraines and heard tihs would help. I also heard it is used for keeping moods from getting out of hand. Plus after being on Elavil, I would love to lose the weight seeing as I gained 44 pounds on it (which made me more depressed). May other questions concerning this though, is I have high bood pressure. Has anyone had issues of it either going up or down on Topomax? And is the rest of my understanding seemingly correct. I would really love some feedback, bcs this seems too good to be true and it would solve quite a few problems for me at one shot if it is all true.
dear heaven, I am beginning to sound like a one-woman ailment library here but I do have a problem with high blood pressure and have had for a long time...
it is controlled with meds and with the decline in my weight...
even with the new and lowered ideal numbers my blood pressure has stayed in the good numbers despite the topomax...
if this is any help to you
kat
Posted by miaorion07 on March 17, 2004, at 15:35:14
In reply to Re: topomax and voice changes » witchyminx, posted by headachequeen on March 7, 2004, at 13:03:56
I just started taking Topamax, I am starting at 25mg, and bumping it up to 50mg next week. I wonder has anyone experienced significant weight loss at this dosage. I am taking it for Migraines...but could use to lose some weight as well. Wondered if it had worked for anyone else. Please inform! Thanks! Oh by the way...does anyone else hate the way soda taste on this med, and does this fade?
Posted by Sooshi on March 17, 2004, at 16:08:21
In reply to Re: topomax and voice changes, posted by miaorion07 on March 17, 2004, at 15:35:14
Hi mia,
I didn't start losing until 100mgs, and then within a month or so I lost 16lbs, but haven't lost any since then. The weight loss tends to wear off like all the other side effects.Soda tastes absolutely horrid, and still does, even now at 50mgs as I'm coming off of Topamax! I can't wait to drink a soda again!
Good luck with Topa!
Posted by headachequeen on March 17, 2004, at 22:31:41
In reply to Re: topomax, posted by witchyminx on March 6, 2004, at 19:06:12
> My doctor is talking about prescribing me a mood stabilizier and/or possibly an antidepressant. My moods seem to need controlled more though. I wanted to bring this med up to him. I get migraines and heard tihs would help. I also heard it is used for keeping moods from getting out of hand. Plus after being on Elavil, I would love to lose the weight seeing as I gained 44 pounds on it (which made me more depressed). May other questions concerning this though, is I have high bood pressure. Has anyone had issues of it either going up or down on Topomax?
>>>
I don't know about mood stabilising... don't know if anything could stabilise my moods...
right now I am suffering cabin fever in the extreme and need to do something to change that..
had planned to be out of here and out in the field training with the dogs but have to wait until after the next eye surgery and after the stitches are out and and and... that makes it into early April...now I have to wait until I see the neuro again about the possible med change and can't see him until 21 April... mood stabiliser??? there is nothing in the world can stabilise my moods right now...
however, migraine has been a successful battle for me with Topomax... almost sixteen months since I have had a migraine or a cluster headache... and I love the peace from pain, believe me!
the weight loss, for me, started with the 25 mg dosage
it was a minor loss but it was three pounds the first week...
while there are those who claim the weight side effect wears off, I know of people who have been off the med for years who still have not changed the food response or the appetite response and I know that my own weight and appetite have not changed and I have been on Topomax since mid-January of last year...
I am now fluctuating between 145 and 148 pounds...
and able to wear size eight jeans and need to look at size small when I choose cargo pants for training work... used to wear size sixteen jeans and large sweaters instead of the small blouses and shirts and sweaters I wear now...
I no longer look at clothes with the attitude that they must be big enough, instead I choose them with the thought that I hope they are going to fit properly and look tailored not sloppy or baggy...
had to give away such a pile of dress pants and blazers and skirts... and then had to go out and find new things that appealed to me...
not easy either... although I have decided to take some blazers (the suede ones) and a couple of skirts and slacks (the suede ones again) that the dogs are used to working with in the ring, to be altered...
I will not give up on favourites...
and I do not like to waste time shopping for clothes...
I have a bizarre taste in clothing at times... either I want to be tailored or really off the wall... radical or proper and I never know which one of me is going shopping at a given time LOL --
thank heaven some of the more bizarre choices in my wardrobe are wraparound skirts...
but the change means no more of the draw string waists...
there really is a change in the weight ... all the anti-depressant gained weight is gone...
my psychologist tells me that some of it is his doing.. he helped me to re-find my self esteem and to find myself... well, to start to find me any way and he thinks that helped...
in other words, liking me again makes me hate food???? I don't understand that one...
But the topomax seems to kill the appetite and the cravings for foods...
instead in my case it has substituted other cravings... if it is true that it eats up the vitamins, then it makes me crave fruit and green vegetables to replace them... and I eat gallons of yoghurt... and no protein is safe within a yard of me...
a couple of ounces of nuts substitutes for the chocolate and chips that used to be consumed by the carload...
strange...
but the other stuff I just don't want...I hope it helps you too
kat
Posted by Maggie-VA on March 30, 2004, at 9:59:32
In reply to Re: topomax and voice changes » witchyminx, posted by headachequeen on March 7, 2004, at 13:03:56
I have been on Topomax for over 5 months and lost 37 pounds. I take it for seizures along with 600 mgs of Trileptal. I started out on 25 mgs a day and went up to 100 over the course of about 8 weeks. I had to reduce the dosage due to asthmatic symptoms, rare at best. I still have the hand/feet tingling and the word loss and loss of concentration, but alot less with the decrease in dosage and I am feeling more and more "normal" for the first time in 2 years.
At first, I hated all foods except eggs of all silly things. Eggs and water. I still can't stand sodas of any type. I don't eat sweets like I did, just don't have the craving for them. I can go with out eating everything on my plate and be satisfied. I don't hate the food any more, I just don't crave it. It is wonderful.
I am seizure free now for more than 7 months and looking better and feeling better about myself. The depression is lifting, but I can't say that it is strictly medication related or just that I feel better, who knows.
Posted by headachequeen on March 30, 2004, at 11:44:58
In reply to Re: topomax and voice changes, posted by Maggie-VA on March 30, 2004, at 9:59:32
> I have been on Topomax for over 5 months and lost 37 pounds. I take it for seizures along with 600 mgs of Trileptal. I started out on 25 mgs a day and went up to 100 over the course of about 8 weeks. I had to reduce the dosage due to asthmatic symptoms, rare at best. I still have the hand/feet tingling and the word loss and loss of concentration, but alot less with the decrease in dosage and I am feeling more and more "normal" for the first time in 2 years.
>
> At first, I hated all foods except eggs of all silly things. Eggs and water. I still can't stand sodas of any type. I don't eat sweets like I did, just don't have the craving for them. I can go with out eating everything on my plate and be satisfied. I don't hate the food any more, I just don't crave it. It is wonderful.
>
> I am seizure free now for more than 7 months and looking better and feeling better about myself. The depression is lifting, but I can't say that it is strictly medication related or just that I feel better, who knows.Isn't it wonderful to be seizure-free...
I guess I cannot claim to be seizure-free actually... although I have gone several months at a time without the wretched experience...
and have this time been over a week without one...
oh joy and expect when Tegretol is out of my life to experience the pleasure again...Topomax certainly moderated the seizure experience once I started taking it...
no more two or three a night and no more two or three a week... for a while I had eight months with no seizures and thought I had found paradise...
no migraines for over a year... that is wondrous indeed...the weight loss is wonderful too...
and has certainly affected the manner in which I view myself...
I am not close to the size I was before the negative self-image and the depression entered into it.. well, I guess the negative self-image and the depression led to the weight increase, let's not put the cart before the horse, but the weight certainly increased both the self-loathing and the depression...
at the moment I almost like myself...
in fact there are days when I like myself almost all day!!!
Last night a friend I had not seen for several months dropped by and was amazed...
new hairstyle different clothing styles and new style me...
her daughter (a ten-year-old) was quite vocal in her admiration of the new me... and it was wonderful...
today I feel amazingly good about being me although for the past week I have had doubts about whether or not I liked me and being me...as for the effect of Tegretol on food likes and dislikes...
I find no difference in the taste of soda (we call it pop up here <g>) but I do find that it doesn't have much appeal to me... it certainly did before...
but I am drawn to the protein foods, so much so that I asked several times if others found themselves craving protein....
eggs... I could eat them by the chicken factory...
scrambled, poached, fried... you name it....
I wanted to eat eggs...
chicken too, for that matter...I no longer want sweets at all... I look at chocolate in stores and it has no appeal... even the Laura Secord chocolates and those wonderful Laura Secord Easter eggs with the yellow centres... and their butter mallow bars...
now that is incredible, sports fans!!!! I could never walk past a Laura Secord display without serious cravings... and never walk past without buying!!! I have not bought or eaten chocolate in months... and don't want any either...and I, like you, can leave food on the plate, despite those starving children that were always haunting my childhood ... we were taught to clean our plates because of starving children somewhere and I was always offering to mail them the foods I did not like...
but now, not only do I not finish things that I do not like, I do not finish things I do like because I am not hungry enough to finish... and seldom ask for seconds of anything... and seldom if ever want or eat desserts...life is changed indeed... and so am I...
no head-aches
few and milder seizures
less weight
and this weekend I am going into Ottawa to buy some new clothes for the summer because nothing fits...
kat
Posted by headachequeen on March 30, 2004, at 11:56:24
In reply to Re: topomax and voice changes » Maggie-VA, posted by headachequeen on March 30, 2004, at 11:44:58
> life is changed indeed... and so am I...
> no head-aches
> few and milder seizures
> less weight
forgot to add that I feel more confident now
and since the Topomax am no longer afraid to do things, to go away for instance - used to be afraid that one of the seizures might occur while we were visiting or spending a weekend in a hotel...
and am also no longer afraid to be alone in my own home -- that was a serious problem that began to sort itself over the months in conversations with people on this list as I applied their advice and ideas to how I approached life...
and as the Topomax changed my sense of self...it is not the miracle drug for all things...
hasn't cleared up my freckles or eliminated my asthma, and I am still scheduled for surgery tomorrow...
but hey! It does make a huge (no pun intended) difference in my life
kat
and sorry about the mistake in sending the empty message before
Posted by JPS on April 5, 2004, at 4:46:36
In reply to topomax, posted by Ellen Brodie on April 19, 1999, at 15:58:40
I was sent to a neurologist with severe back pain and had an MRI and was diagnosed with a ruptured disc, pinched nerve and 2 more buldging disc about to rupture. I also suffer from chronic pelvic pain.
I was prescribed Topamax 2 weeks ago, 25 mg. the 1st week, went to 100 mg. the 2nd week and I can't tell I am even taking it. I have lost 8 lbs. and but I have gained alot of weight the last few years from not being able to excercise from the chronic pelvic pain so that was good I lost some weight. I also take 150mg. of Zoloft.
My question is, I see most on this site taking Topomax for depression,weightloss, etc., but don't see many taking it for pain other than migraine pain, just wondering how effective others have found it to be on pain? Maybe I need a stronger dose. He is giving it to me for pain and won't give me anything else for pain.
I found this warning on Topomax on another site and worry about taking too strong of a dose. I wonder if this is rare of is common. Here was the warning I found below:
TOPOMAX WARNING
A warning for those Topomax users who are having trouble with eye pain and blurriness;
Your eye pain and blurred vision is a reaction from the Topomax. Your eye pressure is high and if it stays high for a short period of time you will damage your optic nerve and become blind! I am not joking. Last week my husband started using Topomax. 1 week later he almost lost his eyesight as a reaction to it. The Topomax raised his eye pressure to the high fifties (normal is around 10) and no one knew how to treat it. Fortunately he was sent to the Mass Eye and Ear Infirmary in Boston who is currently researching this side effect. His still cannot see and they are hoping he will regain his ability to see within 2 weeks.
If you start using Topomax and feel irritation in your eyes no matter how minor stop using and go to your doctors immediately!!! Not many doctors are aware of this newly discovered problem so refer them to the Mass Eye and Ear Infirmary's research.
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