Topomax-I want to hear your stories!!!

Diseases & Conditions Bipolar Disorder
1
Hey all. I am exercising, eating right and sick of being bloated. My meds seem a bit screwed up and I am wanting to know how you like/didn't like Topomax. Of course we all hear about the "stupa" factor, but I have that prob with my cureent meds so....pls share your stories. it would be greatly appreciated!!! And weight loss-oh yay! Is it true?
S
2
Hello,

I was given Topamax by my regular doctor. I had gone to her when I was fed up with all my lousy psychiatrists. I had been on Lithium and gained a good amount of weight on this medicine. So my main gripe was - put me on something that isnt known to add weight. Well, Topamax was her choice.

Well, I had an allergic reaction to it. So the ER doctors thought. I got real depressed more so than I had been in a long time. I felt very confused and disoriented and almost didn't even know what I was doing. It was weird, and my husband said lets go to the ER we didnt know what was wrong - but because I was overall healthy - plus they did blood tests and they said it must have been the topamax (Im not a medical person - so I dont know what the blood tests showed and not showed!) But anyway, I quit taking it of course and have been fine since. So - I wasn't really on it long enough to notice any "weight" issues.

Just thougth Id pass along my story on Topamax. I hope it works well for you - it sounded like a miracle to me, when she said Weight gain is rarely reported. (I forget her exact words - it was medical lingo) LOL

Take Care!

Just Peachy

3
OKay , I am on topamax. Controversy everywhere with this medication. I will do my best to give you the facts. Topamax came to the US in 1996, used to teat epilepsy, migraines and weight loss. It is NOT FDA approved for the treatment of BIPOLAR. However with that there is some research that says it does show some help as a mood stabiliser in BP patients. I believe, don't quote me. I will get back to you on that. Docs (GP and Pdos) due prescribe topamax to pts with Bp. I started out at a low as you should and gradually increase. Started at 25, and now I take 200mg with my wellbutrin as my anti-d. Topamax does not work alone in BP patients. Side effects vary, nasuea, tingling in face and hands, pins and needles effect, dizziness, memory loss, forgetfulness, word recognition (not being able to think of a word or getting a word out, same with sentences or typing), also common side effects, I also believe loss of balance is one, causes blurred vision(can cause blindness),weight loss , ......these are just off the top of my head. There are more! With that said, I have had three of those side effects, weight loss, tingling (subsides ), always happens after I increase my med .  Only lasts for 2 days. I also had pins and needle effect, basically the same as tingling. Anyways, if you are going on this med due to the weight loss I would avoid it!!!!!!! I got lucky to not have all the side effects, and have heard the horror stories it has had with people. Their is not enough long term research with this med, to determine what it can do to you either. I will not go any higher than 200mg, because I don't want the stupamax effect. Honestly I like the med in conjuction with wellbutrin, because it  keeps me well most of the time, not because of the weight loss. NOT everyone gets that side effect either , just like I didn't get the other side effects like memory loss, or or the loss of word recognition. Best of luck to you . Search the word Topamax, go the the good, bad funny..... written by a person who has taken topamx, WARNING it has profanity. Let me know what you think. It tells you everthing you need to know. I read it before getting on topamax, sorry this is so long. Hey Shannon, was I diligent ? Honest, not biased was I? Gosh it was rough? lol Love to all        Nickie
4

 I started taking Topamax at 25mg once a day and now I'm up to 50mg two times a day with more to come. So far I have been told there has been a change in my moods (more stable) although I do have to be honest, I still do have some of the same old feelings just not as often. Side effects so far include tingling in feet and hands, spelling has a tendency to go out the window if I don't concentrate (I should have left this with the errors in it) and my appetite has been reduced to 1/8 of what it was which is why people lose weight. I am still in the trial and error stage of this and the doctor feels I have more than just BP so I don't know if that plays a role in how it affects me or not.

Jeff

5
Hi, nrs2b yeah
 
(partly reply & partly explanations since I'm new here & hadn't really introduced myself yet)
 
Topamax was the first mood stabilizer I was put on (after rediagnosis from anxiety/panic/atypical depression - to bipolar).  This was after I was weaned off of my primary antidepressant.  That in-between time was, well, interesting.
 
Anyway . . . I did have definite at first, & later moderate, improvement in appetite issues.  I was significantly overweight to start with, which is one of the reasons my then-pdoc put me on it.  I hit a major depression a few months later, so he added Lamictal, and the two, along with a continued small dose of Wellbutrin (left-over from seeing if it took away desire for smoking - didn't for me), and clonazepam which usually keeps me out of full-blown panic attacks, worked pretty well.  But . . . we added a small dose of Prozac when, just after I came out of the depression, my husband went into mixed-mania like I've never seen, didn't want to be hospitalized, didn't want to talk to his pdoc about med adjustments, & had decided I was most of his problem & he wanted a divorce.  The Prozac did help me function enough to deal with the situation & get out of soon-to-be-ex's emotional abuse.
 
I have a new pdoc since I moved to a different city.  I'm still under a lot of situational depression, with divorce in process, dealing with vastly decreased income & related issues, total knee replacement scheduled for next Friday . . .
 
Anyway, she's taken me off the Topamax for the time being, since it didn't have that much effect on mood, and we're going to try Depakote.
 
All of the meds, of course, have their own side effects, work for some people & not others . . . for me, Topamax, in addition to the decreased feeling of need to compulsively overeat, did give me some of the 'pins & needles' when I was very active, & which you need to report if it lasts long/gets bad, as can be a sign that dosage needs to be decreased.  When I went over 175 mg/day, I also got 'word loss' - so annoying.  It's different, over & above the memory problems I have due to several causes.
 
I hope to go back on the Topamax, to some extent, if I have weight/appetite probs. with the Depakote (quite possiblel), but we want to try me on the Depakote/Lamictal/clonazepam mix first for a while to get a feel for how it works for me.  Then we will probably tweak things some ('tinker' LOL).
 
Topamax is, according to the research, useful longer-term re. appetite, for about 30% of people using it.  So it might be worth a try, & might possibly 'bump up' the effectiveness of the meds you're on now, if tried as an addition.
 
What are you taking currently?
 
CM
(Lamictal, clonazepam, just starting Depakote; non-psych meds are Neurontin {for chronic pain, has had no effect on the bipolar}, primidone for tremor I've had since age 17, Zocor for cholesterol, Nexium for acid reflux, very small dose of amitryptiline {sp?} for combination attempt to help with breakthrough pain & to help me sleep {don't think it's helping with either, but doc doesn't want me off it yet}, going to start taking Celebrex to help with chonic arthritic pain, after my TKR {total knee replacement} scheduled for Aug. 12.) 
6
Nah, Nickie, pretty unbiased!  It's better than I can be about some things, I have to admit! eyes   I'm glad it works for you, tho.  ANYTHING that works, right?!
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   Okay Shannon, ( not psychnurse nrse2b Shannon), why are you wanting to get on topamax? I hope you are wanting to try it first for the Bipolar , second for the POSSIBLE weight loss side effect. Because the second is just a bonus, the first is what we strive for, but what the hell  you already know that. Anyways, to CLEARY ME .. . I don't know if you have ever tried depakote , I wanted to say it does work well. Wish I could of stayed on it, well I guess I could of if you wanted to roll me everywhere. What I mean is I started to gain lot of weight, it was not helping my diabetes. I took a weight training class , a walking class, got off those meds, tried many other pills, watched what I ate to loose all the weight I put on from depakote.Most people do get that side effect also. If you can tolerate the weight gain , depakote is a wonderful med. I can't remember where I started, made it to 750, doubled that , then stopped it.  However maybe if you try topamax and depakote together , maybe that could work hmm...... there's an idea. I have been on topamax well lets see, for like 7-9 months, I can't remember. I lost most of my weight in the first 3 months, and after that really nothing dramatic or unusual. I also wanted to add in case you don't go to that site, KIDNEY STONES , topamax can give you them. You have to drink plenty of water. If you are already prone to kidney stones , don't take topamax. Nickie-------Full of knowledge I never use!!!!!!!!!!!!!
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I've been on Topamax for migraine prevention for nearly a year now, currently 200 mg, and have not noticed any side effects, positive or negative. Of course, I'm diabetic, have low thyroid, and am on Carbatrol and Effexor for my bipolar, so I have a hard time losing weight anyway...

Since people have been mentioning Depakote, my psychiatrist told me back in '99 that is was being found to cause ovarian cysts in adolescent girls (which is why I got off of it), in case that's of any concern to anyone here. Of course, that was some time ago, and I haven't kept up with the drug, so I have no idea if that's been further investigated or disproven or anything...
9

OMG!!

Thank you all fro your thoughts and experinces. Kitty, yes, guilty, weight loss is my main motivator. I think in reality I must work harder, eat even better, and then start muckin' about my meds. Bp comes first right? I look at all the combinations everyone is on and it blows my mind how many c=varaitions there are!

Clealry me-I am on 600mg Seroquel (800 if that doesn't work), 0.25mg mirapex ands 900mg Lithium, and clonazapem as needed.Curently, I am not stable, but have been. Oh well, welcome to BP!!!

Thanks guys, lets chat again soon!
S

10
kittycat27,
Thanks for the info.  I'll be watching, carefully!, my body's responses to the Depakote.  Just took my first dose (250mg to start) tonight.
 
nrs2b,
I'm curious about how your Seroquel is working out for you.  I was briefly on a 50mg dose to help me get to sleep, but I know a lot of people who were on larger doses, as you are, for the bipolar.  Most of them found that it worked well at first, but then they had to keep increasing the dosage, fairly quickly, and ended up at very high doses & losing the efficacy.
 
How long have you been on it, & have you had the same probs. as these other people I knew (there weren't enough of them to be able to tell if this was a truly common reaction to it, or if I just happened to talk to only people who had this problem).
 
Best to all,
CM
11
I take it, too.  The thing about BPs is that we are always having to adjust doses of meds not because the meds don't work anymore or at a lower dose, but because our brain chemistry is always changing.   Seroquel doesn't have that tolerance effect - it's not a narcotic.   Sometimes a lower dose will do, then something will change and we need more (or just plain lots lol).  Then, we might need less after a while.  It's us, not the meds! :-)   
12
   Shannon, I think that  was put well.It's us not the meds. I was reading that , and was like ain't that te truth. I wish I would come outta whatever I am in. I am gonna attempt to take Jaylynn for a walk, depending on the humidity.I don't know. I have that, I think everyone hates me thing going on, when no one really does. Iam referring to my personal life. Jason thinks I am crazy, funny! I probably am!
13

I know how you feel!  Sometimes, you know I'm blunt, how can you forget, I think people hate me, too, I can be kinda brusque.  But, on the other hand, people love me, too, because I can be oh, so charming.  (If in a decent mood, lol).  It's genuine, I really am a nice person, but I think people either love me or hate me!  And OH,when I was manic or depressed, I thought the entire world hated me.  I had paranoia big time, I would always think if anyone was talking quietly at work, they were talking about me.  How self centered is that, LOL. 

I still worry about how I came off at any type of gathering, I obsess over every little thing I have said.  I guess that's part of the reason I don't like gatherings!  I think we're all like that, really.  Nobody hates you here, sweetie.  You are the most diplomatic BP I know.  (Which isn't many, but you are wayyyyy more than me, haha!)

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Clealry me

I love my seroquel, it helps me sleep at night and until recently managed my aggression.hypomaina, whatever. Shannon is so right-our brains are constanly changing. I know when I have to boost my dose-then, when I wake up feeling "snowed" or "drugged' I know it is time to bring it back down. Thos BP thing is a science, and not a very predictable one, although seasons, stress, PMS, alcohol seem to worsen my BP, as I am sure it may for others. By the way, I have quit drinking entirely this time, no nips, no denial, clean. That crap is toxic! My p doc wants me on it for at least a year, then we'll see how I can do without it and just the lithium/mirapex combo. Oh , I hate how expensive it is!

S

15
Oh, Dana congratulations, girl!  I think the worst thing we can possibly do is to drink, it totally messes the chemistry up.  
 
I have had to be changing the Seroquel dose like every couple of days lately, too.  Either drugged the next day, or not sleeping on too little.  (Like last night)  It's frustrating. 
 
But the main thing is keep clean, it's not really that hard after a while, and it will definitely reduce the amount of depression for sure!  Good job! yeah
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Thanks for the replies, nrs2b. Every bit of info helps!

psychnurse,
I can relate to your social anxiety problems - it can be a real *itch! I have times (a little manic, or just feeling Kansas-friendly), when I want to say hi & talk to everyone, and sometimes can't control it (that's when I know it's time for a 'tweak.'

And there are the times when I don't know what to say, think I've said everything wrong, and I isolate myself (more), and sometimes have trouble getting myself out of it.

It doesn't help that for years my really close friends were as nuts as I was, and I've finally largely cut these people loose, but at age 46 it's hard to develop new friendships of any depth with people who are 'sane.' Most of them already have close friends & have lives that keep them busy, while I'm on disability (SSDI) and have hours on end available. I'm meeting a few new people at a regular social thing, and have met pretty high-functioning people at DBSA (Depressed & Bipolar Support Alliance) and NAMI (Nat. Alliance for the Mentally Ill) meetings, and those meetings are a godsend, as are some of the people there.

I really want to keep out of messed-up/abusive relationships in the future. That's been a nearly lifelong pattern - my home during childhood was completely chaotic, raised as an only child, my mom mentally ill but not diagnosed or in treatment (she had a great fear of that), and it's affected my interactions with people.

ClearlyMe (i.e., Trish)
17

Hi, clearly me, I also understand big time about being 40 something and not having any "normal" friends.  The fact that we are childless by choice both pretty much eliminates the chance to be social or meet people because everybody has kids and can't relate (neither can we!), plus they can never do anything because they have kids, or they have to bring them along, ugh, and secondly, we don't even have an opportunity to meet anyone.  It's just the two of us, 24/7 when he's not at work, but thankfully, we never get sick or bored of each other and treasure every minute.  In fact, I don't want any friends cos I want to be with him, haha!  My therapist just doesn't get it, she keeps pushing me  to "get out there and meet people, I would be so much happier", she doesn't realize I AM happy, very happy and I don't WANT  that!  I don't even see a therapist anymore, I have nothing to talk about, thank god!

And I also understand about SSDI, I have been on for 2 years now, and have all day every day, but I keep so busy between this board and Female First, working out, plus the housework, shopping and cooking (my hobby) and the occasional painting (pictures, not the house, haha).  I'm happy, I don't even turn on the TV all day.   My pdoc keeps telling me to go to those meetings, but they are only 1 time a month and are clear across the city and in the middle of it, about a 30-40 min drive, I don't like the city, so I don't go.

Hey, I'm from Kansas, too originally, but have been here for 20 years.  I remmber "Kansas friendly", you say hi and smile and wave at everyone.  i quit doing that shortly after I got to Dalls, people looked at me like I was crazy, (little did they know, lol) never smiled back.  I felt so stupid. What part are you from?  I'm from Augusta, right outside of Witchita, rural area.  Yep, farm girl, then urban big city girl, now suburbia (the best!). 

 Oh, and call me Shannon! :-)   

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Hi Shannon,

I'm originally from Lawrence, what was just outside the city limits. Small, family retail (we delivered!) dairy farm. Then city decided to put a 4-lane divided street through 2 of our main buildings. That was the end of that! My dad was near retirement age by then, & continued working till the day of his first (bad) stroke (that was long ago, both parents died since then, each at about age 80; I was the menopause baby LOL).

Lived in K.C. area about 10 years, 1 year in San Diego (paradise), then when remarried (same husband, very serious bipolar & jerk besides), we lived in Topeka (armpit of galaxy LOL) for about 10 yrs, near VA where he got his care. When I left him due to emotional abuse, I stayed 1st with a friend in Sturgis SD (yep, home of motorcycle rally, though I was there late fall/early winter), then back to K.C., where I'm much happier & staying temp. with brother while I prepare to get my own (!!!) apt. again, & awaiting divorce court date late Sept. Going in, Friday for knee replacement surgery (had other knee done a few yrs ago, so have some idea of what I'm in for (yecchh, but will be glad, once I've recovered), so won't be around for a week or 2).

Very glad to meet everybody,
Trish
19

Wow, Lawrence is near Augusta,  have been there (when I was real little, we had some family there).

Soudns like you have been around!  San Diego sounds so nice; Paul has a brother there a dentist, so he can afford it, lol!

I would LOVE to live there, it's so much more liberal.  No offense to anyone here, but I hate living in a bible belt.

Whoa, two BPs married and twice besides.  Scary!  confused I am glad for your sake you're divorcing him, abuse should never be tolerateed, no matter the circumstances. mad

Kansas City is nice, I thnk a good place to live, esp if you like 4 seasons.  We have  two lol.

I wish you the best of luck with your knee replacement; it will be worth it when it heals. :-) Shannon

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Glad to hear it helped your son. It is FDA approved for treatment in your sons case, but not for BP. Although it is prescribed for treatment BP. However the side effects ( as all meds have them) could be potentially nasty. I currently take 200mg, and it helps. Thanks for your post. I did mention a site above if you want to look at it. It's all about Topamax.