Topomax-I want to hear your stories!!!

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

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

Hi, nrs2b

 

(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.) 

   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!!!!!!!!!!!!!

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

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!   

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!)

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!

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!   

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!  I am glad for your sake you're divorcing him, abuse should never be tolerateed, no matter the circumstances.

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

I, too, am originally from Kansas. We used to refer to Topeka as "Topuka."

Back from the knee surgery and - gasp - walking!

Shannon - 

thanks for the support & fun comments.  Kansas City is large enough that there's a good mix of viewpoints & greater level of tolerance for such.  My sister lives in Austin.  I love their winters but the summers . . . even hotter than here?  I dunno.  That was one thing I loved about San Diego.  Even the heat wasn't humid, and the temps topped-out about 1 p.m., so it was pretty nice by early evening.  The divorce is almost over (dancin' with a limp!). 

Dobson -

Topuka?  I missed that one (don't know how) but sorry to say it hits the spot! (Apologies to any Topeka fans)

Hope you're all doing as well as possible.  I'm coming out of a nasty depression & better in that sense but emotions right at the surface (you should see all the things I cry at that I see on tv, many are happy tears at least!).

Trish

Shannon2, I was ton topamax 200mg and did loose weight but that is about the only benefit I got from it. I had the side effects you get building up, tingly and headache, that sort of thing, but that all went away after a short time. But, I did get a llittle dumber!! And god knows I can't afford that! Now I'm on Abilify and I sing it's praises. I am able to control my eating and I'm not as dumb as a brick. Good luck to you whatever you choose. Sandra