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Emma_s

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Topamax and weight loss
Jun 24^th, 2010 at 3:11pm

Hello everyone, I haven't been on the board for a long while and posting but I have been lurking a lot but I do have a question.

I am coming up to a year on my first cycle. I have to say I haven't had a real CH for a good few weeks now which is incredible. I just have the constant throbbing pain (like shadows) migraines and other side effects (double vision, ringing in ears etc) so hopefully I am getting there, maybe...

Anyway, my question was - has any experienced weight loss or have gone off food with Topamax? I have been on this medication a long time and I have lost a couple of stone and really gone off eating to the point I am eating a max of 1000 calories a day and everyone I see every day is saying 'you're going to disappear soon mrs!!' as my clothes as hanging off of me. I have an appointment with the doctor in July but I only mentioned it previously, didn't really 'push' my point that I was concerned.

I guess after experiencing the pain of CH I don't see anything else being something to complain about. That's really how I feel now.

(Meds I am taking daily are: Topamax 30mg (I am very *very* sensitive to Topamax, I was taking 50mg twice a day and I couldn't speak or walk properly, 25mg I could just about remember things...), Verapamil 240mg, Diazepam 6mg, Arcoxia 60mg, The Best Stuff (02!!) and I take Maxalt Melt 10mg when I have a Migraine with Aura)

PFDAN everyone x

Edit - Missed 02 off of my med list - how could I!

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« Last Edit: Jun 24^th, 2010 at 3:17pm by Emma_s »

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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Topamax and weight loss Reply #1 - Jun 24^th, 2010 at 4:17pm if i remember well weight loss is in the side effects of topamax.take a look inside the paper that comes with it,it must be written somewhere there.
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icepick

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Re: Topamax and weight loss
Reply #2 - Jun 24^th, 2010 at 4:29pm

Hi, new to the board too, am in the middle of an attack. I HATED topamax for the same reason. Lost 13 pounds in two weeks (I'm already thin so I looked like a ghost). Plus, it made me spacy. Have you tried Lyrica? It is so much better but there's a good chance your insurance will deny it (I'm waging a holy war right now with them). Good luck!

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Emma_s

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Re: Topamax and weight loss
Reply #3 - Jun 24^th, 2010 at 5:26pm

Black - Thank you for your reply. Yes, after reading it you are right. I try not to read too much of the side effects as it does say 'it doesn't effect everyone' but on the most common it does say 'anorexia' which does surprise me. I do wonder how people 'feel' because I do not feel like I am going down a good road with food (I'll do a big meal or BBQ and just make sure everyone is fed and watered and busy myself whilst people eat but miss myself out) but this is so unlike me, I love food and stuff my face normally (been on prednislone steriods for years and years growing up for my Asthma so I know what that is like feeling hungry all the time, it's like going from one extreme to the other).

icepick - Thanks for your post. 13 pounds in 2 weeks? Crikey, I feel bad for complaining, that is serious weight loss! Did you eat normally or go off food? I haven't heard of Lyrica, I may mention it to my Dr as I live in the UK I do not have insurance so might be able to get it on the NHS. I know there was a drug my Neurologist wanted me to have from the US which we don't have ver here but I don't think it was that one as it was quite a long name!

Thank you both again

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« Last Edit: Jun 24^th, 2010 at 5:32pm by Emma_s »

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icepick

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Re: Topamax and weight loss
Reply #4 - Jun 24^th, 2010 at 5:38pm

Emma, just couldn't eat when I was on Topamax. But it was the vomiting that did it. Trust me, I'm thin but I'm not anorexic (I'm a Southern girl and like my food). But there has to be something else evil in that drug that did it because I don't think I could lose 13 pounds if I tried. When my neuro saw me for the 2 week follow-up she took me off it immediately. Plus, she said most of her patients were just complaining about the "stupidity" factor. I'm on Lyrica right now and you feel tired, but not stupid. But best of all, I'm down to one manageable headache a day (for some reason it's in the morning) which Zomig knocks out. Zomig doesn't prevent CHs but will kick the beast and give you strength enough to dread the next one. LOL! And I've tried everything -- alternative, traditional, you name it (except Botox which I'm considering).

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icepick

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Re: Topamax and weight loss
Reply #5 - Jun 24^th, 2010 at 5:38pm

Emma, just couldn't eat when I was on Topamax. But it was the vomiting that did it. Trust me, I'm thin but I'm not anorexic (I'm a Southern girl and like my food). But there has to be something else evil in that drug that did it because I don't think I could lose 13 pounds if I tried. When my neuro saw me for the 2 week follow-up she took me off it immediately. Plus, she said most of her patients were just complaining about the "stupidity" factor. I'm on Lyrica right now and you feel tired, but not stupid. But best of all, I'm down to one manageable headache a day (for some reason it's in the morning) which Zomig knocks out. Zomig doesn't prevent CHs but will kick the beast and give you strength enough to dread the next one. LOL! And I've tried everything -- alternative, traditional, you name it (except Botox which I'm considering).

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Emma_s

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Re: Topamax and weight loss
Reply #6 - Jun 24^th, 2010 at 6:04pm

icepick wrote on Jun 24^th, 2010 at 5:38pm:

Emma, just couldn't eat when I was on Topamax. But it was the vomiting that did it. Trust me, I'm thin but I'm not anorexic (I'm a Southern girl and like my food). But there has to be something else evil in that drug that did it because I don't think I could lose 13 pounds if I tried. When my neuro saw me for the 2 week follow-up she took me off it immediately. Plus, she said most of her patients were just complaining about the "stupidity" factor. I'm on Lyrica right now and you feel tired, but not stupid. But best of all, I'm down to one manageable headache a day (for some reason it's in the morning) which Zomig knocks out. Zomig doesn't prevent CHs but will kick the beast and give you strength enough to dread the next one. LOL! And I've tried everything -- alternative, traditional, you name it (except Botox which I'm considering).

That is so extreme and must have been very scary for you sorry to hear that Sad

. I am glad that you have found a medication that is working for you now and thank you very much for the information.

If I take anymore then two doses of 15mg of Topamax a day my memory just goes and this really isn't good for someone who edits for a living. When I was on 50mg twice a day I couldn't speak or walk right, I was even confused at one point who my boyfriend was! The drug is mad but it has been the only daily tablet to control the daily migraine with auras I was having (I know migraines aren't as bad as CH but the aura part often triggered a shadow and my arm and some of my face goes numb and I can't speak properly for hours and its not a good experience having this at least once a day) so I am trying to weigh up what I can handle.

Everytime I eat now I do find I feel more and more sick and it is getting worse so will just have to discuss this with the doctor in July. Thanks again for reading and replying

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JHK07 CH.com Junior Offline I Love CH.com! Posts: 98 Gender:	Re: Topamax and weight loss Reply #7 - Jun 25^th, 2010 at 7:34am I lost some weight too. I quit drinking beer daily about the same time I started the meds, so who knows..... It has been about a year, i probably lost 15 lbs. I was not over weight to begin with. still on it. 50 mg a day.
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Lettucehead

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Re: Topamax and weight loss
Reply #8 - Jun 26^th, 2010 at 11:05pm

Very common effect of Topamax - often people just aren't hungry or just seem to get full after a couple of bites or two.
You can lose quite a bit of weight on it.
For awhile, there was a movement to use it off-label as a weight loss medication, but really the other side effects such as word finding difficulties, confusion, etc, kinda squashed that idea.
The bad (or good, depending on how thin you already are) is that you will almost certainly gain the weight back once you go off the med...

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RuVa

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Re: Topamax and weight loss
Reply #9 - Jun 29^th, 2010 at 7:20am

Emma_s wrote on Jun 24^th, 2010 at 3:11pm:

(Meds I am taking daily are: Topamax 30mg (I am very *very* sensitive to Topamax, I was taking 50mg twice a day and I couldn't speak or walk properly, 25mg I could just about remember things...), Verapamil 240mg, Diazepam 6mg, Arcoxia 60mg, The Best Stuff (02!!) and I take Maxalt Melt 10mg when I have a Migraine with Aura)

I can take 2 times 50 Mg topamax a day but no longer than a week, 2 weeks at max. It has a way too huge effect on me. Speaking incoherently and such.
Usualy when things get bad I take 1 time 25Mg and 1 time 50Mg. When things calm down I start taking 2 times 25Mg topamax.

Weight loss is something I am dealing with too, however I have no loss of apetite.
I eat a LOT. At least once a week I go to a french fry bar, at home I always eat twice as much as my wife. And in the evenings I usually snack on things as chips or candybars. I'm 26 years, 178 cm and wheigh 63 kg.

I've always been slim but topamax gives me a lot more apetite than usual, but I also eat more on purpose to stay on wheight and yes... it often is a concious choise to eat more meat or greasy stuff to stay on wheight.
The doctor just tells me to keep on eating as long as I don't overdo the greasy stuff. I have my blood checked every year/ every half year and so far I don't seem to have a bad diet.

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