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Dr. Bob is Robert Hsiung, MD,
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Posted by Karen_kay on December 30, 2003, at 15:34:49
In reply to Re: bridgey » headachequeen, posted by dragonfly25 on December 28, 2003, at 16:22:34
Hello!! I just have to respond to your post....
i hadn't read one positive one yet
**I beg to differ... I think that my posts have been quite positive. While I did have a problem with some cognition difficulties on Topamax, I consider Topamax to be my "Wonder Drug" of sorts... I have nothing bad to say about it. I take it for Bipolar Disorder and it ahs been the only medication that has been able to effectively stabilize my mood. And the side effects do eventually go away! That is the point I was trying to make in my posts. It took a few months for my cognition problems to work out but they did. And I couldn't be happier!!! Good luck with your decision, but I did want you to know, there were positive posts out there! :) Karen
Posted by headachequeen on December 30, 2003, at 16:10:58
In reply to Re: bridgey » dragonfly25, posted by Karen_kay on December 30, 2003, at 15:34:49
> Hello!! I just have to respond to your post....
>
> i hadn't read one positive one yet
>
> **I beg to differ...
I have to agree... I think that I have been all but a cheerleader for Topomax - especially having had to live with the side effects of its competition so to speak.. the one that does not have the weight loss side effect for those of you who are using it to lose weight <g>right now, my hands are tingling and making it awkward to do anything that requires hands or fingers to connect with anything else as I am not really sure what it is I am touching or for which I am reaching...
I have a buzzing/tingling effect in my ears...
and for these lovely experiences I can thank Tegretol... don't you wish you were me???
think of the fun you are missing...
oh, and did I mention that the so-called tingling in my toes is such a complete numbness that if the weather were not so mild I would think that I had achieved frostbite while indoors and be panicking enough to head for emerge....add to this the pain in my eyes that is similar to the effect of someone driving a railway spike into the area between the bridge of my nose and my eye... and the pain in my right eye that is as if someone had another railway spike and were driving it through my skull into the middle of my eye...
not topomax and I am not sure if it is Tegretol or the eye thing...Topomax is really not as bad as everyone seems to assume...
hey.. I am seizure-free for four days now... Topomax is great... and if you don't believe me, just ask me LOL
kat
Posted by SLS on December 30, 2003, at 16:31:04
In reply to Re: bridgey » dragonfly25, posted by Karen_kay on December 30, 2003, at 15:34:49
> I take it for Bipolar Disorder and it ahs been the only medication that has been able to effectively stabilize my mood.
Hi.Do you think Topamax would work for bipolar depression? In what ways does it improve your condition?
Thanks.
- Scott
Posted by Karen_kay on December 30, 2003, at 17:45:41
In reply to Re: bridgey » Karen_kay, posted by SLS on December 30, 2003, at 16:31:04
I am dx Bipolar I Disorder (which means I have manic episodes as well as depressive) but at the time I started Topamax, I had been having a depressive episode which lasted about 3 years in duration (Good Grief!!!)... Now, I tried Lithium, Lamictal, and Depakote. Lithium helped for a while, but then the depression returned so my pdoc added Lamictal. The depression returned again so he added Lexapro (an AD). I decided to quit all meds except Lexapro, so I went into a manic state for a while (what fun!)... I discontinued all meds, tried a different Pdoc, who put my back on lithium. It didn't work the second time around, which is common. I heard about Topamax, from here. I asked him about it and he said, Well, we'll try it, but chances are it won't help control manic episodes. But, it has worked for me! I feel WONDERFUL!!!!!!! I'd do a commercial if they'd let me!!!!
From what he tells me, Topamax is better for depressive episodes than manic episodes. He says there isn't much research to show that it helps control manic episodes, but it has stabilized my moods perfectly!!! I mean I was to the point that I couldn't shower or leave my house! Now, my grades are up (and I was failing my classes before!) and I shower sometimes 2 x a day :) Topamax is my wonderdrug!
So, in short, my main problem at the time was Bipolar depression. I wasn't concerned with a manic episode when I began Topamax. And I know the signs, as does my boyfriend, and therapist and pdoc. So, I'll worry about that when I get there. It has worked wonders for me. I'm no longer depressed. I'm onlly sleeping between 6-8 hours a night (before I'd sleep 10-18 hours), I wouldn't leave my house. Now, I can't wait to do things. Topamax has changed my life completely! Therapy has helped as well, but Topamax is the main reason I'm back to my regular self. And even with the side effects, I didn't once think for a second of stopping Topamax, because I'd already begun to see results. And my stable mood is more important than having to work harder to remember things for a few months. My doctor reassured me that it would go away in time. And it did. It was frustrating, but I made it through. And I'm so very happy :)
Posted by headachequeen on December 30, 2003, at 18:02:52
In reply to Re: bridgey » SLS, posted by Karen_kay on December 30, 2003, at 17:45:41
But, it has worked for me! I feel WONDERFUL!!!!!!! I'd do a commercial if they'd let me!!!!
>
Oh but I know the feeling LOL
I was put on Topomax, instead of an increased dosage of Tegretol (THANK HEAVEN) when I asked about migraine control... now that was an inspired move on my part... as I am epileptic...I am also diagnosed as being not depressed, but hypomanic, then why, she asks, do I go through these bouts of depression, but that is another board I guess...
I have had some side effects with the Topomax... weight loss and migraine control being two of them and I can certainly live with those...
60 plus pounds and no migraines for almost a year... now that is something -- migraine-free... oh what a thought... no trips to emergency on that count anyway... it is like being suddenly freed from a prison...there are other side effects that had to be dealt with and with the advice I found here, there were no warnings from doctors or pharmacist which really give me cause for annoyance to put it mildly, I have been able to handle them... vitamins and supplements, water, and so on...
the cognitive effect problems are gone and done with...
the blurred vision well that was a minor thing in comparison to the vision problems my own eyelids cause... and I was born with that but no one caught it until I complained about the Topomax side effects... and they discovered that I have myosthenia gravis and also an eyelid condition similar to one my dogs sometimes have which can be corrected with surgery... hmmm another redhead thing maybe ?? LOL
the blurred vision thing went its way in a short time...
and again, as long as one takes the increases in a slow order it is easy to adjust I found...
some people seem to be on a fast track... and that is going to increase the side effects...
I talked to one woman at the pharmacy the other day, we were picking up our Topomax refills and she was having an awful time... I suggested this site to her but she does not think she is staying on the drug...already kicked tegretol so I don't know what is left for her...
and the seizures she gets are really awful so I fear for her...
but she started at 100 mg and is increasing at three day intervals by 50 mg because she didn't see any sense in following that chart the doctor gave her...
guess he spent all that time in med school for nothing...
As I said earlier sometimes I feel like a cheerleader on the Topomax squad and I think cheerleaders are such , well let us not go there...<G> but I tried so hard to make her see that starting at 100 and heading to 400 a day in a few days was not the way to do it...
and if she is not taking anything she is headed for disaster...
and she has my neuro.. he is arrogant and with reason... he is good but he will simply dump her for non-compliance and then where is she???
She sees no reason for joining psychobabble because none of us knows anything...
it's all right, friends, I thanked her for all of you and told her that she needed to re-think her attitude toward herself and her safety and toward other people...
<evil grin>but Topomax is not as bad as people seem to think... they just have to take it slowly and give it a chance...
it really helps...
oh I was rather down on things after a seizure the other day when i had been without any for so long... but things happen... it could have been so much worse without Topomax....
now if it would kick this depression that comes and lives with me too.......
kat
Posted by dragonfly25 on December 30, 2003, at 18:08:09
In reply to Re: bridgey » dragonfly25, posted by Karen_kay on December 30, 2003, at 15:34:49
hi karen
i am glad you are having such a great experience with topamax. it has helped my mood as well, but after coming on this site i read alot of scary things. and what someone may mean to express as positive may be interpreted totally differently by the reader. b/c i was more turned off it than on.
just thought id point something out- i said i hadn't seen a positive comment YET. i might not have read yours. or any of the other positive comments...i was drawn to the negative subjects.
dragonfly> Hello!! I just have to respond to your post....
>
> i hadn't read one positive one yet
>
> **I beg to differ... I think that my posts have been quite positive. While I did have a problem with some cognition difficulties on Topamax, I consider Topamax to be my "Wonder Drug" of sorts... I have nothing bad to say about it. I take it for Bipolar Disorder and it ahs been the only medication that has been able to effectively stabilize my mood. And the side effects do eventually go away! That is the point I was trying to make in my posts. It took a few months for my cognition problems to work out but they did. And I couldn't be happier!!! Good luck with your decision, but I did want you to know, there were positive posts out there! :) Karen
Posted by headachequeen on December 30, 2003, at 18:43:52
In reply to Re: bridgey » Karen_kay, posted by dragonfly25 on December 30, 2003, at 18:08:09
b/c i was more turned off it than on.
> just thought id point something out- i said i hadn't seen a positive comment YET. i might not have read yours. or any of the other positive comments...i was drawn to the negative subjects.
Dragonfly, could it be that you prefer to be drawn to the negative and turned off the drug rather than be drawn to the positive and given a positive opinion of it?
kat
Posted by Karen_kay on December 30, 2003, at 20:48:07
In reply to Topomax is really not such a bad thing » dragonfly25, posted by headachequeen on December 30, 2003, at 18:43:52
Hmmm.. interesting theory! :) I originally wanted to try Topamax because I read it may help dump some extra weight and Lithium as well as depression caused me to gain a few pounds so I figured I would try Topamax and see if it worked. And I lost some weight in the meantime. And it stabilized my mood! It's like two drugs in one! PERFECTO!!!!
Posted by SLS on December 30, 2003, at 20:49:39
In reply to Re: bridgey » SLS, posted by Karen_kay on December 30, 2003, at 17:45:41
Hi Karen_kay!
In re: Topamax
> > > I take it for Bipolar Disorder and it ahs been the only medication that has been able to effectively stabilize my mood.
> > Do you think Topamax would work for bipolar depression? In what ways does it improve your condition?
> I am dx Bipolar I Disorder (which means I have manic episodes as well as depressive) but at the time I started Topamax, I had been having a depressive episode which lasted about 3 years in duration
> From what he tells me, Topamax is better for depressive episodes than manic episodes.
> So, in short, my main problem at the time was Bipolar depression. I wasn't concerned with a manic episode when I began Topamax.
Thank you! Thank you! Thank you!Thanks for taking the time to respond. I have been stuck in an unremitting state of severe depression for 25 years. I am only minimally responsive to Lamictal + tricyclic. I'm going to put Topamax on my list of things to try.
Thanks again.
- Scott
Posted by headachequeen on December 30, 2003, at 21:04:15
In reply to Re: Topamax is really not such a bad thing » headachequeen, posted by Karen_kay on December 30, 2003, at 20:48:07
> Hmmm.. interesting theory! :) I originally wanted to try Topamax because I read it may help dump some extra weight and Lithium as well as depression caused me to gain a few pounds so I figured I would try Topamax and see if it worked. And I lost some weight in the meantime. And it stabilized my mood! It's like two drugs in one! PERFECTO!!!!
I had never heard of it. I hadn't even heard of it when it was prescribed for me... the neuro simply said that he was prescribing an alternate anti-seizure med that was known to deal with migraines and as an aside said it had one serious side effect.. it hadn't occurred to me that the migraine bit was a side effect (dumb or what?)... it caused weight loss...when he handed me the schedule I saw the name...
now to see if it stabilizes MY mood
kat
Posted by dragonfly25 on December 30, 2003, at 21:34:22
In reply to Topomax is really not such a bad thing » dragonfly25, posted by headachequeen on December 30, 2003, at 18:43:52
>
> Dragonfly, could it be that you prefer to be drawn to the negative and turned off the drug rather than be drawn to the positive and given a positive opinion of it?
> kathi kat
i think that is a very good possibility ... i found this site searching for the side effects i was having from the drug, so obviously i would be drawn to those topics (which i don't find esp pleasant). but no, generally i am not drawn to negative things, and i really wanted to find someone to say my side effects were from something else. but what i discovered is that they are from the drug and people just get used to them.
anyway i notice a difference since lowering my dose, not in my hair loss but in thinking. hopefully my mood doesn't change.
dragonfly
Posted by Emme on December 30, 2003, at 21:41:36
In reply to Re: Topomax is really not such a bad thing » headachequeen, posted by dragonfly25 on December 30, 2003, at 21:34:22
Lamictal plus topomax? Whaddaya think? Problem: refractory bipolar depression. And what about the hair loss thing? I missed that somewhere. Is it common to have hair loss with topomax?
Thanks.
Emme
Posted by SLS on December 30, 2003, at 21:45:57
In reply to Re: Topomax is really not such a bad thing, posted by Emme on December 30, 2003, at 21:41:36
> Lamictal plus topomax? Whaddaya think? Problem: refractory bipolar depression. And what about the hair loss thing? I missed that somewhere. Is it common to have hair loss with topomax?
Sounds intriguing. How much Lamictal are you taking? I'm in the same boat you are.
- Scott
Posted by dragonfly25 on December 30, 2003, at 21:54:12
In reply to Re: Topomax is really not such a bad thing, posted by Emme on December 30, 2003, at 21:41:36
topamax can cause hairloss
Posted by headachequeen on December 30, 2003, at 23:00:49
In reply to Re: Topomax is really not such a bad thing » headachequeen, posted by dragonfly25 on December 30, 2003, at 21:34:22
not in my hair loss but in thinking. hopefully my mood doesn't change.
> dragonflyDragonfly....
I am a redhead, and if you are acquainted with any redheada, then you will know how frightfully arrogantly vain we are about our hair... I see a lot of nodding heads out there, especially among the redheads who are among us <g>
My hair is one of my two major vanities, and I find no shame in so admitting. However, I am also dependent upon two medications (why is that the word 'drug' is so abhorrent in this society?) that are hard on the hair, both of them can lead to hair loss, dry hair.
Tegretol is really the worst thing I can think of for the hair, short of using Nair instead of shampoo. (Do they still make that stuff?) Apparently Topomax does much the same to the hair. Murphia when she was present on the list told us that we could fight the damage by taking Biotin (2400 mg a day was the suggested dosage)
As I have mentioned, all too frequently for the old-stagers, I am sure, I breed, show and train dogs, a breed with coat and skin problems. Because of these problems, we include biotin and vitamin c in megadoses, along with vitamin E and zinc so the E is metabolized properly, Evening Primrose Oil or Borage Oil, fish oil, CLA, and I am trying to remember the routine... it is natural to do when I am preparing the meals for the dogs, but hard to remember... I hear the murmurs about cognitive problems... no, it is just that I am in the office and the prep area for the dog food is in another part of the house... for that matter as I left the dogs at the training centre rather than fly them back and forth at huge expense in order to complete the training courses I want to finish, I am out of practice... kelp, and a couple of other supplements and vitamins...
It never occurred to me until Murphia mentioned the damage to hair (familiar to Tegretol users) and that Topomax leeches the vitamins from Topomax users, that it might be a healthy thing to use vitamins and supplements myself...
even without Topomax, given the diet of today's society it might be a wise idea... oh vitamin D comes to mind...but the C, E, zinc and Evening Primrose Oil and the other oil whose name eludes me with the biotin will help with dry hair or hair loss...
and if it works for my hair it will work for anyone... trust me...
there is no hair in the little strainer thing-y in the drain after a shower and shampoo and I am really paranoid about that...
I have very thick hair ... when it was long it took me an hour to dry it using a dryer... if I left it to dry itself it could take as long as six hours; now that it is excessively short it air dries in three hours...
and I do not want it thinning let alone falling out...
as I said, I am extremely vain about my hair and my voice
oh, and I am not really excited about wrinkles either...
Topomax would truly be the wonder drug if it prevented wrinkles...
kat
Posted by dragonfly25 on December 30, 2003, at 23:15:33
In reply to Topomax is really not such a bad thing HAIR LOSS » dragonfly25, posted by headachequeen on December 30, 2003, at 23:00:49
hi kat
i feel like i just read a description of my hair! how weird. i haev really thick, redish hair and it is falling out at a crazy pace. :( i am soo vain about my hair as well. and i have been on all the drugs that cause your hair to fall out. the worst was valproic acid. i took zinc and selenium, but i went off that and stopped teh vitimans and didn't have a problem with my hair for a long time. i used those sudless shampoos which i hated, and i have bottles of vitamins, but i am not good with remembering things (must be the topamax :))
but i hadn't heard about some of the things you listed so i am going to check them out.
but i wasn't clear- did u say your hair stopped falling out? was it from using all that u mentioned or what was your combo?
thx
dragonfly
Posted by Murphia on December 31, 2003, at 7:45:37
In reply to Re: Topamax for bipolar depression » Karen_kay, posted by SLS on December 30, 2003, at 20:49:39
Hi, I am a researcher and have been researching Topamax for about 7 years. In all clinical tests, topamax was more effective on mania, and not very effective for depression. In many documented tests, topamax actually exacerbated depression. However, topa can have varying effects on different people. If it helps your depression, that is great! But clinically, it has tested to go straight to the manic side of depression. As is zonegran, the new ms out of Japan, and very similar to topa. Hugs. Murph
> Hi Karen_kay!
>
> In re: Topamax
>
> > > > I take it for Bipolar Disorder and it ahs been the only medication that has been able to effectively stabilize my mood.
>
> > > Do you think Topamax would work for bipolar depression? In what ways does it improve your condition?
>
> > I am dx Bipolar I Disorder (which means I have manic episodes as well as depressive) but at the time I started Topamax, I had been having a depressive episode which lasted about 3 years in duration
>
> > From what he tells me, Topamax is better for depressive episodes than manic episodes.
>
> > So, in short, my main problem at the time was Bipolar depression. I wasn't concerned with a manic episode when I began Topamax.
>
>
> Thank you! Thank you! Thank you!
>
> Thanks for taking the time to respond. I have been stuck in an unremitting state of severe depression for 25 years. I am only minimally responsive to Lamictal + tricyclic. I'm going to put Topamax on my list of things to try.
>
> Thanks again.
>
>
> - Scott
Posted by SLS on December 31, 2003, at 7:57:11
In reply to re: the benefits of topamax, posted by Murphia on December 31, 2003, at 7:45:37
> Hi, I am a researcher and have been researching Topamax for about 7 years. In all clinical tests, topamax was more effective on mania, and not very effective for depression. In many documented tests, topamax actually exacerbated depression. However, topa can have varying effects on different people. If it helps your depression, that is great! But clinically, it has tested to go straight to the manic side of depression. As is zonegran, the new ms out of Japan, and very similar to topa. Hugs. Murph
Hi Murph.Thanks for the input.
Have you seen Zonegran be effective for any kind of depression?
Which mood stabilizers do you feel have the best chance of treating bipolar depression?
Thank you.
- Scott
Posted by headachequeen on December 31, 2003, at 14:53:47
In reply to Re: Topomax is really not such a bad thing HAIR LOSS » headachequeen, posted by dragonfly25 on December 30, 2003, at 23:15:33
> but i hadn't heard about some of the things you listed so i am going to check them out.
> but i wasn't clear- did u say your hair stopped falling out? was it from using all that u mentioned or what was your combo?
> thx
> dragonflyAAARRGGGHHHH
Watch the selenium
in fact take it ONLY, I repeat ONLY in miniscule quantities and then ONLY and again I repeat ONLY as directd by a doctor I almost wrote vet...
selenium is one of the trace elements and has such a wild effect...
it can cause sterility if absent in the mix... but it can also cause spontaneous abortion and terrible birth defects if ingested at the wromg time and does nothing for the hair...
it is only effective for the thyroid....
so it is not really linked to a Topomax side effect...
kat
Posted by headachequeen on December 31, 2003, at 15:00:06
In reply to re: the benefits of topamax, posted by Murphia on December 31, 2003, at 7:45:37
> Hi, I am a researcher and have been researching Topamax for about 7 years. In all clinical tests, topamax was more effective on mania, and not very effective for depression. In many documented tests, topamax actually exacerbated depression. However, topa can have varying effects on different people. If it helps your depression, that is great! But clinically, it has tested to go straight to the manic side of depression. As is zonegran, the new ms out of Japan, and very similar to topa. Hugs. Murph
MURPH!!! Happy New Year...
and so glad to see a post from you...
now, some information, please...
does this mean that Topomax is going to kill the 'artistic temperament' that is the manic in me????
SOB....
and what is an 'ms"?
and as topomax is really making a difference with these silly and annoying and at times devastating not to mention embarrassing seizures, does this mean that I am going to have to go back on anti-depressants to deal with the depression that, as of today, is officially recognised?
While I do not want to spend the rest of my life with these times of blackness, neither do I want the joys (oh yeah) of zyprexa and its relatives... I know, picky picky...
but there has to be something better...
kat who is never satisfied....
Posted by Emme on December 31, 2003, at 17:32:59
In reply to Re: Topomax is really not such a bad thing, posted by SLS on December 30, 2003, at 21:45:57
> > Lamictal plus topomax? Whaddaya think? Problem: refractory bipolar depression. And what about the hair loss thing? I missed that somewhere. Is it common to have hair loss with topomax?
>
> Sounds intriguing. How much Lamictal are you taking? I'm in the same boat you are.
>
>
> - Scotthi Scott,
350 mg Lamictal. Are you taking it? How much? Any sustained positive effects? I did not do well with topomax the first time I tried it, but I wasn't taking Lamcictal then. I'd like to keep my brain able to think, but if the cognitive problems wear off, that would make it less scary.
Emme
Posted by Emme on December 31, 2003, at 17:40:37
In reply to re: the benefits of topamax, posted by Murphia on December 31, 2003, at 7:45:37
Hi. Has anyone tried zonegran and found it worsened their depression? Is there mention in literature of zonegran exacerbating depression? I could swear Zonegran made me more depressed and interfered with sleep to the point of exhaustion in a very short time.
Emme
Posted by Sooshi on December 31, 2003, at 17:48:16
In reply to re: the benefits of topamax » Murphia, posted by SLS on December 31, 2003, at 7:57:11
Scott-I also take take Topamax for bipolar depression (BPII), and did some research of my own (and with my pdoc)and found out that Topa can actually aggravate depression, so I take an antidepressant with it (Effexor XR), but many take Topa with Lamictal, which has great antidepressant properties. I think it's great that some can get good ms (mood stabilization) on Topa alone (wish it was me!), but most can't. Good luck to you!
Posted by Karen_kay on December 31, 2003, at 20:02:22
In reply to re: the benefits of topamax, posted by Murphia on December 31, 2003, at 7:45:37
Hmmmm.. Proof positive my doctor really is a dumb ass. But, I've always had a suspicion anyway. Yeah, Topamax has worked wonderfully for my depression. I saw results almost immedietely. It took some fine tuning to get to the correct dose, but I'm pretty happy with Topamax. My Pdoc wanted to keep me on Abilify for ever because research indicates it also helps control manic episodes. I finally quit taking it on my own and told him several months later. He wasn't too happy, but he can't hold me down and shove pills down my throat. Not that I wouldn't mind him holding me down :)
Posted by Karen_kay on December 31, 2003, at 20:09:58
In reply to Topomax is really not such a bad thing HAIR LOSS » dragonfly25, posted by headachequeen on December 30, 2003, at 23:00:49
Yeah girl, I hear you about the hair thing. And the wrinkles too. Good grief, I'm only 24 and I'm going grey :( ICK! But, My hair is SO dry from Topamax. But, I buy expensive products and use Paul Mitchell's The Conditioner and that helps. And when I get my hair done, you can get a protein treatment and that helps a lot as well. Also, if you don't blow dry your hair (I know, it sucks!!!!!) it helps to keep it from drying out. And only wash it every other day or every three days. It keeps the natural oils in and keeps it from drying out as well. My problem is that my hair is color treated as well (with a lot of color! Red, with blonde streaks and brown chunks! It's cute :) I say, I'm young, have fun!!) so, that tends to dry it out even more. My hair has always fallen out a bit, but not much more than usual. Thank goodness. I'd stop my medication if I began to lose hair. Well, I guess I'd talk to my Pdoc first. He did say that he could give me meds to counteract that if it happened. Crossing my fingers, Karen
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