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Question for Topamax Users

I'm using Topamax and have been on it for about three weeks.  I'm up to 50mgs and I'm getting ready to up my dosage this week to 75mgs.  I've noticed in the past few days that I am starting to have a "revulsion" to food particularly in the morning and at lunch time.  I take my dosage at night around 8pm which is why I think I am having such a hard time.  It's not hurting my health, just curious if others are experiencing this.  Literally, I can barely eat.  I have to force myself to eat a slice of toast which is unusual for me when I am used to downing two pieces like nothing.  I'm starting to lose a little weight but nothing drastic or worrisome.  Has anyone else noticed it?  Is there a shake or drink that I can use to still get something on my stomach?  I am drinking at least five or so bottles of water a day because it makes me so thirsty.  Thanks if anyone has any info.  Other than that, I have been pain free for the past week.  Very big news since I have had migraines/headaches for the past 13 years ( 3 migraines a week, headache every day).  Yay!  BTW, I do feel the on/off numbness, tingling sensation.  Just annoying but not too bad.  Comes and goes.  Thanks.
14 Responses
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Avatar universal
I'm sorry you had a headache yesterday :(  Sometimes when I do, I don't like to take anything either, except what's necessary to get rid of it. I'm glad you like the Slim Fast! What flavor did you get? I like creamy milk chocolate. I try and get the Optima because it's supposed to keep you "fuller" longer. Not sure if it works but I'm gullible, LOL.
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Avatar universal
Okay, Slimfast is working.  I had such a bad migraine yesterday that I was afraid to take the full dosage of 75mgs so I backed off.  Taking the 75mgs tonight.  I spent the day at the beach yesterday so that explains the migraines.  I've got to get some sun though because the wedding is in four months.  LOL.  No fake baking for me.  Besides, I do live at the beach so I should look like it a little bit.  No skin damage though thanks.  I like Topamax thus far.  I've got to be more strict about my water intake and maybe start exercising again.  That seems to help.  We'll see.   Thanks for the help though!  I bought some SlimFast to have in the mornings.
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Avatar universal
Yikes! Sinus scraping......I'm with you. Sounds horrible. I had a friend who worked as an assistant for an ear, nose and throat Dr. years ago and she told me about a procedure they used to do which I believe was called a "sinus wash". She said it made grown men cry. I've never forgotten that. I've never had all the tests you've had but I'll bet they'd find the same thing with me. I wonder if you had your sinuses scraped how long it would last for? I mean, would the fluid just come back? Mine always seems to make it's way into my ear as well. And it's never on the left side, always the right. Some days, I wish I'd have a migraine (or sinus pain/pressure) on the left side just for a change!

The latest thing I'm trying is Veramyst. Not sure the spelling is correct but it's a steroid nasal spray. I think it's helping some with the sinus pressure but the migraines still come. I've been thinking about going off Topa myself lately because what chance does it have against the evil sinus monster? I do believe it's a good medicine for a lot of migraine sufferers and it did help me in the beginning. I don't know...like you I am confused now.

Yes, don't you love how you have to show your driver's license to get allergy meds at the pharmacy? Sometimes I think they look at me funny, too!
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419126 tn?1242412170
i cant believe we have the EXACT same problem!! ive had chronic sinus issues and migraines for years! ive had CT scans and MRI's which came back fine. and ive had 2 face x rays and they both showed that i had excess fluid in my sinuses and wont go away. my doctor was saying that i might had to have my sinuses "scraped" AHHHH!! that doesnt sound like fun at all!! but of course we have to wait until after september sometime after the baby is born. im frustrated about the sinus and migraine issue, but at the same time im relieved that i am not in pain right now, and havent been for months. IM DREADING SEPTEMBER!!  i could definately go back on topomax, but towards the end of being on it, i felt like it wasnt really working for me. i truly believe it is all brought on by the sinuses which in turn causes the migraine. ive been on so many medications and nasal sprays im sure the pharmacist thinks im a junkie! lol
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536122 tn?1213486475
i was on topamax for  about 4 months (it never worked for me) but while i was on it i lost 13 pounds and just had no appetite my dr. got a little woried 'cause i was losing the weight and it still was not helping my migraine. but you could try to drink the slimfast shakes (i could drink those)
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Avatar universal
It's funny that you mention sinusitis because for years I thought I had horrible allergies. I never had allergies growing up in So. Cal but after moving to Dallas/Ft. Worth area 10 years ago....WHAM! My sinuses would clog up, head was killing me...would always trigger a migraine. Sometimes when I wake up, the head clogging (it's not like when your nose is stuffy like with a cold, it's like your head is clogged) is so bad, I am sick to my stomach and it's all I can do to hold down the Imitrex and maybe some Claritin D. Everyone told me the ragweed and pollen in this part of the country is very bad. So for years my doctor has been giving me prescriptions, steroid nasal allergy sprays, steroid shot, etc. to control allergies. Well, a few weeks ago, I did a blood test for the ten most common allergies and I don't have any! Surprise! So now I think I may have that sinusitis. But not that that doesn't mean I don't have migraines as well, because any sinus headache with me triggers a full blown migraine every time. I'm just lucky that way, I guess. :)
So, when you get a headache what do you take? For me, when I know it's a migraine, I HAVE to take a triptan medicine (i.e. Imitrex). Nothing else will work. Unless I want to wait it out for a day or two in a dark room with ice on my head, throwing up and sweating. If the sinus problem accompanies it, it's that much worse. Sometimes I think the migraine "hides" behind the sinus headache. I know that sounds weird but I have thought before "oh, this is just a sinus problem" and I've taken sinus medicine. But when the sinus symptoms are relieved even slightly I am blindsided by a serious migraine that I did not really realize was coming and it's too late because I did not treat it in time. Then, even with the Imitrex, I am vomiting and down for the count for awhile.
Hopefully, yours are not migraines...that would be great! Or, if they are then hopefully after the baby, and after nursing, you can go back on Topa (if you want) and keep them under control. I don't know...I'm like you...confused. Actually, I am sick and tired of being sick and tired!
Helpful - 0
419126 tn?1242412170
if you really think my puppy is cute, i'll ship her to ya, and you can have her!! lol  i really do enjoy being pregnant. i am really not looking forward to the migraines after i give birth though. i know that perfume and scented candles really really disagree with me too!! and its funny cuz i hold my breath when i go down the chemical isle at the grocery store too!!! lol  im really hoping that my migraines dont get any worse. i feel like there is no fix for them. i feel like im getting nowhere with my doctor and dont know what to do. i am dreading them. im so relieved that i havent had 1 in a while. my prenatal doctor seems to think that they arent migraines at all, but chronic sinusitis. so i dont know whats going on. im confused. lol
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Avatar universal
Hi!
Congrats on the baby! And I love your pics. Cute puppy :) I remember I LOVED being pregnant (after the first trimester) because I never had a headache. It was pure bliss. Then, after I came home from the hospital...whamo. They started again. I had my first (and only) child when I was 30...now I'm 38 (will be 39 in a few days) and my migraines are out of control this entire decade of my life. I have been told that your 30's and after childbirth are often the worst times for migraines. It was true for my mother and now for me. At least we have better meds than they did back then. I remember her suffering so. Anyhow, I can't seem to find any one trigger for mine except I know for sure I can't drink alcohol at all. Especially wine. I call it "headache in a bottle". And I can forget walking into a store that sells perfume or lots of scented candles. Makes me sick just thinking about it. Sometimes I even hold my breath walking down the detergent aisle at the grocery store. Not always, just if I am having one of my "headache prone" days. For some reason...right after my period is worse for me..not right before. I don't know...I've about given up trying to figure it out. I am just waiting for menopause. They say it may get better! LOL.
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419126 tn?1242412170
oops.... i used that word too!! lol
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419126 tn?1242412170
hey ladies!! wow... its good to know there is others out there with the same issues!! WOOP WOOP!!  i was on topomax until i got pregnant. i had about 3 migraines a week and a headache almost everyday as well. soooo not fun!!  i lost abot 10 pounds in the first 2-3 months on topomax, and i also couldnt eat. sometimes i would be nauseus, but most of the time, i just could not eat. its hard to describe. im happy to say that i have not had a migraine in 3 months.... YAY!! which is a blessing considering there is really nothing i can take right now.
i know how you guys feel when you are in pain, it totally *****. i hope that everything works out for you!!
have you guys found the trigger to your migraines?
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Avatar universal
LOL...I have seen from reading other posts that the word s.u.c.k.s. is considered very naughty! I'll assume that's the word you used :) Don't worry, we don't think you have a potty mouth. :)

Re: the Dr. yanking you off the drug. I remember in the beginning my Dr. told me she was concerned (because I am little to begin with) that I not lose too much weight. She said if I did then she would take me off of it. Well, it worked so well for me that when I dropped like 6lbs. right away, I was afraid to go in for my follow up because I knew she would weigh me and she never actually said how much weight was too much to lose. The morning of my appt. I was actually looking around my son's room for a heavy toy or something to put in my jacket pocket to add weight to myself because I was so afraid she was going to take me off of it! I never found anything that was small  enough (or heavy enough for that matter) so I just went as is. Luckily, she barely glanced at my weight and kept me on it. I can't believe I was going to be dishonest like that because that is not my nature but I guess when I had finally found some relief from the pain, the thought of having it taken away (because of weight loss of all things) was just too much to bear.
Congrats on your upcoming nuptuals, by the way...you make a beautiful couple. My hubby and I will be married 11 years this July.
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Avatar universal
Okay, previously I didn't post a bad word up there but apparently they think it is.  Hmm.  Just wanted everyone to know that I don't use bad language.  Hmm.  Okay, anyways.
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Avatar universal
Thanks for your response!  Yes, that was exactly what my problem is.  I'm heading up today to 75mgs and solids in the morning were becoming impossible.  I wasn't nauseous or anything, I would just try to swallow and just couldn't.  I'm at the high end of the BMI because I have a more muscular build (volunteer firefighter) so if I lose a little, I am not too worried about it.  I've dropped a few pounds over the past couple weeks.  Only part that ***** with that is my wedding dress is not shrinking with me.  Ha-ha!  Thank God for alterations!  I'm glad to know I will adjust.  I did adjust to the 25mgs after two weeks so I am sure I will adjust to the 75mgs after a couple weeks.  He is giving me until the 21st of July to adjust to the medicine or he is yanking me off of it.  Thus far, we are going a few days without a serious migraine.  Yay!   Thanks again!
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Avatar universal
So glad your headaches are getting better. I have been on Topa for about a year now. 100 mg. (50 in AM...50 in PM). I remember losing my appetite for a bit in the beginning but not really to the point that I was sickened by the thought of food or anything. My appetite did come back eventually (not really sure how long it took, but I'm thinking a few weeks). I did lose weight right away as well. I'm really little anyway (5' tall 100lbs) so I didn't have much to lose, but it evened out over time and I don't continue to lose. I think I was 108-110 lbs. when I started taking it and now I'm holding steady at 100. I know that when I don't feel well enough to eat solid food (i.e. post headache or have had to take Imitrex or something) I love Slim Fast shakes. I realize they don't have a lot of calories and I don't drink them for that reason, it's just that I like the taste and they do have some vitamins and minerals (don't quote me on this). My husband is big on Carnation Instant Breakfast. Maybe you could drink something like that if you can't bring yourself to eat. Usually, if I drink some Slim Fast, then about an hour later I feel a little better (stomach wise) and I can eat some fruit or something. I also got really thirsty on it. Luckily, I've always been a big water drinker so that wasn't a big deal for me. I definately remember the tinglies! And the numbness. That should wear off in time. At least it did for me. Well, sometimes when I'm sitting at the computer, my toes will go numb but I hardly ever feel tingly in my lips and stuff like I did at the beginning. I'm glad for that! The one other thing I had (and I guess I still do) is the overheating sensation. Like your internal thermostat all of a sudden gets set on high. I don't know....maybe I'm just having hot flashes!

I really do think your body will adjust to the meds and your appetite will return. I'm just so glad to hear a fellow migraine sufferer has found some relief. I'm just happy when I have one day without a headache! Take care :)
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