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"Topamax advice?"

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Chick	Dec-07-09, 03:56 PM (CMT)
"Topamax advice?"
Hi I'm new to site. Long story short I've had bad migraines for last 6 years, with and without aura although I seem to have persistant migraine and aura lately. Triptans are a bit of a hit and miss for treatment. Anyway, finally seen a neurologist and he has gave me Topamax to start on 25mg a day working up to possible 100 or whatever possibly works (lower or higher). I have previously been treated for anxiety and depression and had awful experiences with anti depressants and bad medication experiences have left me nervous about meds. Generic prozac made me literally loopy and I was bed bound and don't remember a lot when was on it (apart from panic attacks) and effexor I could tolerate but had a nightmare of a withdrawal. So basically I'm terrified of trying topa as I have read so much bad stuff about it, I know we all have different experiences but any advice would be helpful as I am so wary of meds.
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Table of contents

RE: Topamax advice?, lovegia, Dec-07-09, (1)

RE: Topamax advice?, Chick, Dec-07-09, (2)

RE: Topamax advice?, lovegia, Dec-07-09, (3)

RE: Topamax advice?, Chick, Dec-07-09, (4)

RE: Topamax advice?, lovegia, Dec-07-09, (5)

RE: Topamax advice?, Chick, Dec-08-09, (15)

RE: Topamax advice?, chrissygal, Dec-07-09, (6)

RE: Topamax advice?, lovegia, Dec-07-09, (7)

RE: Topamax advice?, Chinookgrl, Dec-07-09, (8)

RE: Topamax advice?, Chinookgrl, Dec-07-09, (9)

RE: Topamax advice?, lovegia, Dec-07-09, (10)

RE: Topamax advice?, Anthony, Dec-07-09, (11)

RE: Topamax advice?, thetsarisa, Dec-08-09, (12)

RE: Topamax advice?, Chick, Dec-08-09, (13)

RE: Topamax advice?, lovegia, Dec-08-09, (14)

RE: Topamax advice?, estre004, Dec-08-09, (16)

RE: Topamax advice?, lovegia, Dec-08-09, (17)

RE: Topamax advice?, estre004, Dec-08-09, (18)

RE: Topamax advice?, Chick, Dec-08-09, (19)

RE: Topamax advice?, estre004, Dec-08-09, (20)

RE: Topamax advice?, brendaenglish, Dec-08-09, (21)

RE: Topamax advice?, Chick, Dec-08-09, (22)

RE: Topamax advice?, estre004, Dec-08-09, (23)

RE: Topamax advice?, Chick, Dec-08-09, (24)

RE: Topamax advice?, estre004, Dec-10-09, (25)

RE: Topamax advice?, AuntieBubbs, Dec-10-09, (26)

RE: Topamax advice?, lovegia, Dec-10-09, (27)

RE: Topamax advice?, AuntieBubbs, Dec-11-09, (28)

RE: Topamax advice?, lovegia, Dec-11-09, (29)

RE: Topamax advice?, brookelinn14, Dec-13-09, (30)

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Messages in this topic

lovegia Dec-07-09, 04:03 PM (CMT)

1. "RE: Topamax advice?"

i have pretty much the same experience without antidepressents, but i just started topamax. check down to introduction and questions about medication. i'm going to cronicle my side effects and experience with the drug on that forum. so far so good, i like the topamax. the side effects are annoying but worth it. good luck, and if you have questions let me know. i cant help about the antidepressants but i can help about auras and top.

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Chick Dec-07-09, 04:11 PM (CMT)

2. "RE: Topamax advice?"

OK I will check it out, not on antidepressants now and hopefully wont need them again, I kinda just mentioned that to explain why I have such a fear of 'brain meds' lol. I will prob start topa this week, take it slow and see how I go...

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lovegia Dec-07-09, 04:32 PM (CMT)

3. "RE: Topamax advice?"

it was tough for me to start too. i kept looking at the bottle like oh god what am i doing. my sister is on the stuff for epilepsy and takes a higher dose and complains of side effects. it works great for her seizures but she hates the s/e. i hear for most they go away in a couple of months or dramatically decrease but its different for everyone. you've got support from me though. i'm online all the time so if you ever have any, "do you ever feel this.." or "hey did you ever do that.." questions just shoot em my way. i know its tough starting stuff that messes with your head, it gave me a lot of stress and it didnt seem like anyone got it but its getting better now i know what to expect.

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Chick Dec-07-09, 04:41 PM (CMT)

4. "RE: Topamax advice?"

Yeah, I have been looking at the bottle for a few days now, having will i/wont i moments. I can take physical s/e it's more the mental s/e that worry me, I don't want to be bonkers over xmas :-D. In your experience do you think the s/e kick in gradually or is it more straight away?

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lovegia Dec-07-09, 05:07 PM (CMT)

5. "RE: Topamax advice?"

its definitely straight away. as soon as i took the medication i felt it immediately, along with leg cramps (which sometimes get so severe that its handy to have vicodin around as aleve, tylenol, and ibuprofen dont work..heating pads and ice work ok but only if you have time for that and your job allows it) and tingles everywhere. i just felt dazed. i guess like being stoned is an appropriate way to describe it. it comes and goes though. sometimes i catch myself saying the complete wrong thing but really it isnt so bad. people dont look at me and say, wow that girl is a retard. i think the worst for me is my keyboard abuse. i cant tell you how much love my backspace button has been getting lately. i just double check a lot of stuff. my husband has been complaining that im forgetting stuff around the house a lot too, which is inconvienent, but i can live with it. i need a blackberry, if you have one..you'll love the to do feature on it very soon. one thing i love though is its stabilizing my moods like woh. i've been noticing i'm more tolerant to a lot of things that may have set me off before.
another thing is that my period is late. i really dont think it is possible that i am pregnant i am very careful. we use condoms and birth control, and i hate to say it especially publicly but since the baby and headaches i'm not very active anyways. i do know this stuff messes with your mentrual cycles though. i also know that it makes your birth control less effective. my neurologist didnt tell me. my pharmacist didnt tell me either, but i asked my gyno because im so paranoid, and she said it can unless you have an IUD.

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Chick Dec-08-09, 06:45 AM (CMT)

15. "RE: Topamax advice?"

Thanks for all your info its really helpful. Neuro didn't tell me about it affecting the birth pill, but as it happens I can't use them as it seems to aggravate my headaches so we use barrier anyway. Just hope topa helps, as this constant pain is getting hard to bear and my personality has flipped round as I am so tired and sore all the time. I'm only 26 but I might as well be 80 the way I am restricted (no offense intended if we have any 80 somethings on here!) Plus I have a 6 y/o daughter and I feel I could give her so much more of myself if I wasnt in pain all the time...so frustrating... Will start meds Friday night as have no school run etc on wkend so I can afford to be dopey.

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chrissygal Dec-07-09, 06:12 PM (CMT)

6. "RE: Topamax advice?"

i was on this med for 3 months....up to 100 mg...i started to not being able to count money at work...i would loose my thought in the middle of a sentence...i would forget where i put my cell phone and sometimes would even forget simple things like my address and work phone number....i called my doc and he said this was normal and i said normal for whom....not me....i did notice that it did help my migraines but just a little and for me the side effects were not worth it...what would be the long term result of me being on the med?....i did not want to take that chance....

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lovegia Dec-07-09, 06:34 PM (CMT)

7. "RE: Topamax advice?"

yes counting money is very very bad for me too. you really have to figure out different ways of doing things to make it easier for yourself on this drug if its worth it. so far i think its worth it for me, but we'll see.

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Chinookgrl Dec-07-09, 07:14 PM (CMT)

8. "RE: Topamax advice?"

LAST EDITED ON Dec-07-09 AT 07:16 PM (CMT)
I just started it about 3 weeks ago and I am just up to 45 mg now. Going very slow with it 15 mgs up a week. I have noticed very few side effects so far but i am still at a very low dose.
I have had some tingling in my feet, but I can still exercise with just a little bit of cramping type sensation in the muscle. Also a little bit of fatigue.
I haven't noticed much in the way of forgetfulness yet, keeping my fingers crossed on that one. (Thats all I need ;) )
I have noticed a distinct loss of appetite, lack of desire to finish a meal, for me this is Ok because i am losing the weight the last medication put on me ))) Back in my old jeans!! I am being very watchful of nutrition though using supplemental drinks, recommended by neurologist.
I believe even at this low dose it is helping a little with migraines. I am aware it is not an abortive but if I have a low grade head pain it has calmed it when I take my dose at night.
I debated a long time on this one to. But my quality of life suffers so much when I am not on a preventative I had to at least try it. Good luck to you.
Jo

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Chinookgrl Dec-07-09, 07:17 PM (CMT)

9. "RE: Topamax advice?"

I think the key is to go as slow as possible with the dose. We are doing only 15 mg at a time.
Jo

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lovegia Dec-07-09, 07:29 PM (CMT)

10. "RE: Topamax advice?"

I am
>aware it is not an
>abortive but if I have
>a low grade head pain
>it has calmed it when
>I take my dose at
>night.

Agreed!

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Anthony Dec-07-09, 11:24 PM (CMT)

11. "RE: Topamax advice?"

I tried topomax for about 3 months. The more I took the dumber I was and the tingling in the hands in feet daily was more that it was worth.
It seems that the side effects need to be LESS often than the migraine or else it doesnt seem to be worth it to me.
The tingling was a daily occurrence and the dopeyness was even more.
As soon as I couldnt deal with the side effects any more I stopped. It did seem to lessen the frequency of the migraines though.
You need to pick your poison. I am sure some on here stick with the topomax and some dont. It would be a nice feature on the new site to have polls that people are able to use.
Good luck and I hope that it works out for you.
BTW I am currently on 20mg of pamelor daily as a preventative and it works pretty good, it seems to lower the intensity when I do get them. I take treximet as needed as well which does absolutely nothing for the pain.

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thetsarisa Dec-08-09, 02:43 AM (CMT)

12. "RE: Topamax advice?"

So basically I'm terrified of trying topa as I have read so much bad stuff about it, I know we all have different experiences but any advice would be helpful as I am so wary of meds.
I was terrified too and now I am sorry I didn't took it sooner.
I think the key is to increase slowly.
Do 25 mg increments, no more often than every three to four weeks or until you'll feel the side effects on the actual dose has lessened or have passed completely.
Then when you reach your final dose i.e 100mg - give it time - about two months for it to start REALLY working, and for the s/e to pass.
Risa

You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.

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Chick Dec-08-09, 04:48 AM (CMT)

13. "RE: Topamax advice?"

Thanks for the info, everyone on here seems very helpful and friendly. It's lovely to be able to share the misery these migraines cause!
My neuro said going slow with topa would definitely help with s/e unless I'm going to be highly sensitive to them. It's 25mg pills I have and I'm thinking I might even half them and start at 12.5 as an introduction for a few weeks then progress on from there.
Prob going to start at weekend just so I can avoid driving if I'm dopey lol. Although driving with migraine symptoms prob far worse as I have seen me having to pull car over due to muscle tightening in arms or aura obscuring vision! What a fun time we sufferers have eh

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lovegia Dec-08-09, 06:38 AM (CMT)

14. "RE: Topamax advice?"

yes, i don't drive anymore. i'm sure i will start again once i get used to the meds but i have a young daughter i couldn't imagine life without and i feel dopey a lot so i dont risk anything behind the wheel. its a pain in the ##### but at least for now my migraines are less frequent and my god i will take the side effects for the benefits i'm getting any day.

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estre004 Dec-08-09, 08:09 AM (CMT)

16. "RE: Topamax advice?"

My experience was like Chrissgal and Anthony. The side effects (mental ones, not the physical), were not worth it. I could not tolerate the forgetfulness, loss of finding the right words to use (sounded so stupid), actually getting lost while driving (you may not be able to drive). Also they made me emotional, not calm.
It was too scary for me. I stopped cold turkey. I found the drug just plain freaky, not to mention the long term effects it may have on the brain. I lost a lot of weight fast (not good for me since I only way 100 lbs as it is). Food was of no interest (this could be a positive though if you wanted to lose weight).
They did curb the migraines for maybe 2 weeks and then I had the worst one ever like they were all catching up. My abortives did not even work for that one. That was the turning point for me. I quit cold turkey. I probably sound dramatic but I can't believe they would even prescribe something that has such dopey side effect when you drive or have to work.
On the other hand, I can abort my migraines (very very grateful for that). If I could not, living in la la land would be preferable "if" the Topamax was actually helping a lot.
I do wish you luck. Some people seem to have success with it. I know I sound negative--just giving you the heads up. I was totally unprepared which probably didn't help matters.
Keep us informed of your (hopefully successful) experience.

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lovegia Dec-08-09, 08:32 AM (CMT)

17. "RE: Topamax advice?"

estre did you find a preventative that did work for you? i dont like la-la-land lol, but i'll take it for what its worth because i can't abort mine with triptans.
i don't work and i don't have to drive much because i'm a stay at home mom which is why topamax is an okay option for me but sometimes i feel like i'm at a slightly higher level than my daughter is thought wise. not all the time, but definitely in waves lol. thankfully not too many other people notice this

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estre004 Dec-08-09, 10:45 AM (CMT)

18. "RE: Topamax advice?"

No preventative so far. That is my goal. My abortives do work though so if a preventative (such as Topamax for me) has uncomfortable side effects it isn't worth it for me. I know I really sound negative about Topamax and if I couldn't abort my migraines may feel differently about it if it worked at all. In my case though I would rather just abort the migraines as they come instead of living in lala land in hopes of reducing them. I do wish you luck with it though.

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Chick Dec-08-09, 11:21 AM (CMT)

19. "RE: Topamax advice?"

LAST EDITED ON Dec-08-09 AT 11:48 AM (CMT)
Ive just read another side effect of topa is hair loss, has anyone had this s/e?

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estre004 Dec-08-09, 01:09 PM (CMT)

20. "RE: Topamax advice?"

I didn't experience it myself but while researching this drug, a lot of people do suffer hair loss.

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brendaenglish Dec-08-09, 02:32 PM (CMT)

21. "RE: Topamax advice?"

I was on it for awhile. It helped the migraines somewhat. I had severe memory problems on it so my dosage had to be reduced (I forgot where I was supposed to be going while driving.) My new neurologist took me off of it when she heard that I had a kidney stone a few weeks ago because she said they can cause or make kidney stones worse. I also had tingling hands and feet on it and I had a terrible metallic taste in my mouth. I couldn't drink my beloved Coke anymore because it made it taste so nasty.

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Chick Dec-08-09, 03:01 PM (CMT)

22. "RE: Topamax advice?"

Do you think you would have stayed on it if you hadn't got kidney stones? What do you use now?
I'm going to try it as that's the only way to find out if it will work for me, either going to be a a big help or a big disaster lol

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estre004 Dec-08-09, 03:08 PM (CMT)

23. "RE: Topamax advice?"

The good news is although it was a disaster for me, I did return to normal as soon as I quit taking it and I quit cold turkey. I don't think you are suppose to do that so don't try it yourself. I didn't have any adverse side effects from doing it. I hated the drug so bad I didn't want to wean myself down slowly. I just flushed them down the toilet.

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Chick Dec-08-09, 03:26 PM (CMT)

24. "RE: Topamax advice?"

No if I need to stop I will try and do it gradual but I can understand you wanting to get straight off it if the effects were that bad for you. what dose were you on just before you stopped?

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estre004 Dec-10-09, 08:51 AM (CMT)

25. "RE: Topamax advice?"

100 mg

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AuntieBubbs Dec-10-09, 04:27 PM (CMT)

26. "RE: Topamax advice?"

I was on Topomax for a long time, and went off (cold turkey) to see if I could handle my migraines without preventatives. I was off all preventatives for a couple of years and just restarted Topomax again about 2 months ago.
I've already noticed my migraines are better. Less frequent and less severe. I had forgotten that the Topomax worked as well as it did for me.
I don't experience the same kind of side effects described here. I don't get disoriented, have problems processing information, counting, driving, etc. I have felt that wierd tingling in my feet and, oddly, in my face, but that's it.
I didn't know hair loss was a possible side effect, though. If I notice any significant hair loss, I will go off it. I'd rather put up with the migraines I had without preventatives than the less severe ones I have with it. I know that sounds bad, but my hair is the one thing I'm vain about. I have really nice hair. When you have only one thing about yourself that you like, and the migraines to some extent have helped rob you of a somewhat normal life, you want to hang on to the one thing about yourself you love, you know?
Anyway, for what it's worth, that's my experience with Topomax. I take 100mg a day. Never had any severe side effects, I tolerate it really well.
I used to take it in combination with Nuerontin, and the two together made me very sleepy. I prefer it on its own.

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lovegia Dec-10-09, 04:40 PM (CMT)

27. "RE: Topamax advice?"

love the hair comment. i know exactly what you mean, but it totally made me laugh i'm like that about my lips, although not much could compromise that. if anything did though, i'd be pissed. thanks for the chuckle, and hope you have much success with topamax

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AuntieBubbs Dec-11-09, 05:28 PM (CMT)

28. "RE: Topamax advice?"

It's totally true though, you know? I hate the migraines, but I hate what I've given up because of them too. I'm not gonna give up my hair, too!

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lovegia Dec-11-09, 05:38 PM (CMT)

29. "RE: Topamax advice?"

then no matter what, never give up your hair never ever give it up

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brookelinn14 Dec-13-09, 11:40 AM (CMT)

30. "RE: Topamax advice?"

My advice is give it time. It is a tough medication to be on because of the side effects but it can work wonders so set a time line for yourself and stick to it, that's what I did. I decided that I would try it for 6 months and if it worked great, and if not then I would go off of it. But my doctor said that 6 months would be a good amount of time to see if it really is the right medication for me. Within 2 months it had cut my migraines down by 25%, by 4 months 50% which is where I'm at now.
I do recommend taking the name brand because the fillers that they put in the generic can make the s/e's worse. I just switched about a month ago and it's a huge difference. No more numbness!
I also have just made adjustments to my life. I let my clients at work know that I am on a medication that may make me work a little slower and let my friends know that I may need a little help filling in the blanks with conversations. But the alternative is being locked in a dark room with ice packs on my head 6 times a week. Now I only have to do that 3 times a week. At least I can live a little, even if I am dumber. Plus I love that I'm 30 lbs. lighter
My new motto is "I might be dumb but I'm dumb and skinny!"

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lovegia	Dec-07-09, 04:03 PM (CMT)
1. "RE: Topamax advice?"
i have pretty much the same experience without antidepressents, but i just started topamax. check down to introduction and questions about medication. i'm going to cronicle my side effects and experience with the drug on that forum. so far so good, i like the topamax. the side effects are annoying but worth it. good luck, and if you have questions let me know. i cant help about the antidepressants but i can help about auras and top.
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	Chick	Dec-07-09, 04:11 PM (CMT)
	2. "RE: Topamax advice?"
	OK I will check it out, not on antidepressants now and hopefully wont need them again, I kinda just mentioned that to explain why I have such a fear of 'brain meds' lol. I will prob start topa this week, take it slow and see how I go...
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	lovegia	Dec-07-09, 04:32 PM (CMT)
	3. "RE: Topamax advice?"
	it was tough for me to start too. i kept looking at the bottle like oh god what am i doing. my sister is on the stuff for epilepsy and takes a higher dose and complains of side effects. it works great for her seizures but she hates the s/e. i hear for most they go away in a couple of months or dramatically decrease but its different for everyone. you've got support from me though. i'm online all the time so if you ever have any, "do you ever feel this.." or "hey did you ever do that.." questions just shoot em my way. i know its tough starting stuff that messes with your head, it gave me a lot of stress and it didnt seem like anyone got it but its getting better now i know what to expect.
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	Chick	Dec-07-09, 04:41 PM (CMT)
	4. "RE: Topamax advice?"
	Yeah, I have been looking at the bottle for a few days now, having will i/wont i moments. I can take physical s/e it's more the mental s/e that worry me, I don't want to be bonkers over xmas :-D. In your experience do you think the s/e kick in gradually or is it more straight away?
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	lovegia	Dec-07-09, 05:07 PM (CMT)
	5. "RE: Topamax advice?"
	its definitely straight away. as soon as i took the medication i felt it immediately, along with leg cramps (which sometimes get so severe that its handy to have vicodin around as aleve, tylenol, and ibuprofen dont work..heating pads and ice work ok but only if you have time for that and your job allows it) and tingles everywhere. i just felt dazed. i guess like being stoned is an appropriate way to describe it. it comes and goes though. sometimes i catch myself saying the complete wrong thing but really it isnt so bad. people dont look at me and say, wow that girl is a retard. i think the worst for me is my keyboard abuse. i cant tell you how much love my backspace button has been getting lately. i just double check a lot of stuff. my husband has been complaining that im forgetting stuff around the house a lot too, which is inconvienent, but i can live with it. i need a blackberry, if you have one..you'll love the to do feature on it very soon. one thing i love though is its stabilizing my moods like woh. i've been noticing i'm more tolerant to a lot of things that may have set me off before. another thing is that my period is late. i really dont think it is possible that i am pregnant i am very careful. we use condoms and birth control, and i hate to say it especially publicly but since the baby and headaches i'm not very active anyways. i do know this stuff messes with your mentrual cycles though. i also know that it makes your birth control less effective. my neurologist didnt tell me. my pharmacist didnt tell me either, but i asked my gyno because im so paranoid, and she said it can unless you have an IUD.
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	Chick	Dec-08-09, 06:45 AM (CMT)
	15. "RE: Topamax advice?"
	Thanks for all your info its really helpful. Neuro didn't tell me about it affecting the birth pill, but as it happens I can't use them as it seems to aggravate my headaches so we use barrier anyway. Just hope topa helps, as this constant pain is getting hard to bear and my personality has flipped round as I am so tired and sore all the time. I'm only 26 but I might as well be 80 the way I am restricted (no offense intended if we have any 80 somethings on here!) Plus I have a 6 y/o daughter and I feel I could give her so much more of myself if I wasnt in pain all the time...so frustrating... Will start meds Friday night as have no school run etc on wkend so I can afford to be dopey.
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chrissygal	Dec-07-09, 06:12 PM (CMT)
6. "RE: Topamax advice?"
i was on this med for 3 months....up to 100 mg...i started to not being able to count money at work...i would loose my thought in the middle of a sentence...i would forget where i put my cell phone and sometimes would even forget simple things like my address and work phone number....i called my doc and he said this was normal and i said normal for whom....not me....i did notice that it did help my migraines but just a little and for me the side effects were not worth it...what would be the long term result of me being on the med?....i did not want to take that chance....
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	lovegia	Dec-07-09, 06:34 PM (CMT)
	7. "RE: Topamax advice?"
	yes counting money is very very bad for me too. you really have to figure out different ways of doing things to make it easier for yourself on this drug if its worth it. so far i think its worth it for me, but we'll see.
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	Chinookgrl	Dec-07-09, 07:14 PM (CMT)
	8. "RE: Topamax advice?"
	LAST EDITED ON Dec-07-09 AT 07:16 PM (CMT) I just started it about 3 weeks ago and I am just up to 45 mg now. Going very slow with it 15 mgs up a week. I have noticed very few side effects so far but i am still at a very low dose. I have had some tingling in my feet, but I can still exercise with just a little bit of cramping type sensation in the muscle. Also a little bit of fatigue. I haven't noticed much in the way of forgetfulness yet, keeping my fingers crossed on that one. (Thats all I need ;) ) I have noticed a distinct loss of appetite, lack of desire to finish a meal, for me this is Ok because i am losing the weight the last medication put on me ))) Back in my old jeans!! I am being very watchful of nutrition though using supplemental drinks, recommended by neurologist. I believe even at this low dose it is helping a little with migraines. I am aware it is not an abortive but if I have a low grade head pain it has calmed it when I take my dose at night. I debated a long time on this one to. But my quality of life suffers so much when I am not on a preventative I had to at least try it. Good luck to you. Jo
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	Chinookgrl	Dec-07-09, 07:17 PM (CMT)
	9. "RE: Topamax advice?"
	I think the key is to go as slow as possible with the dose. We are doing only 15 mg at a time. Jo
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	lovegia	Dec-07-09, 07:29 PM (CMT)
	10. "RE: Topamax advice?"
	I am >aware it is not an >abortive but if I have >a low grade head pain >it has calmed it when >I take my dose at >night. Agreed!
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	Anthony	Dec-07-09, 11:24 PM (CMT)
	11. "RE: Topamax advice?"
	I tried topomax for about 3 months. The more I took the dumber I was and the tingling in the hands in feet daily was more that it was worth. It seems that the side effects need to be LESS often than the migraine or else it doesnt seem to be worth it to me. The tingling was a daily occurrence and the dopeyness was even more. As soon as I couldnt deal with the side effects any more I stopped. It did seem to lessen the frequency of the migraines though. You need to pick your poison. I am sure some on here stick with the topomax and some dont. It would be a nice feature on the new site to have polls that people are able to use. Good luck and I hope that it works out for you. BTW I am currently on 20mg of pamelor daily as a preventative and it works pretty good, it seems to lower the intensity when I do get them. I take treximet as needed as well which does absolutely nothing for the pain.
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	thetsarisa	Dec-08-09, 02:43 AM (CMT)
	12. "RE: Topamax advice?"
	So basically I'm terrified of trying topa as I have read so much bad stuff about it, I know we all have different experiences but any advice would be helpful as I am so wary of meds. I was terrified too and now I am sorry I didn't took it sooner. I think the key is to increase slowly. Do 25 mg increments, no more often than every three to four weeks or until you'll feel the side effects on the actual dose has lessened or have passed completely. Then when you reach your final dose i.e 100mg - give it time - about two months for it to start REALLY working, and for the s/e to pass. Risa You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
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	Chick	Dec-08-09, 04:48 AM (CMT)
	13. "RE: Topamax advice?"
	Thanks for the info, everyone on here seems very helpful and friendly. It's lovely to be able to share the misery these migraines cause! My neuro said going slow with topa would definitely help with s/e unless I'm going to be highly sensitive to them. It's 25mg pills I have and I'm thinking I might even half them and start at 12.5 as an introduction for a few weeks then progress on from there. Prob going to start at weekend just so I can avoid driving if I'm dopey lol. Although driving with migraine symptoms prob far worse as I have seen me having to pull car over due to muscle tightening in arms or aura obscuring vision! What a fun time we sufferers have eh
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	lovegia	Dec-08-09, 06:38 AM (CMT)
	14. "RE: Topamax advice?"
	yes, i don't drive anymore. i'm sure i will start again once i get used to the meds but i have a young daughter i couldn't imagine life without and i feel dopey a lot so i dont risk anything behind the wheel. its a pain in the ##### but at least for now my migraines are less frequent and my god i will take the side effects for the benefits i'm getting any day.
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	estre004	Dec-08-09, 08:09 AM (CMT)
	16. "RE: Topamax advice?"
	My experience was like Chrissgal and Anthony. The side effects (mental ones, not the physical), were not worth it. I could not tolerate the forgetfulness, loss of finding the right words to use (sounded so stupid), actually getting lost while driving (you may not be able to drive). Also they made me emotional, not calm. It was too scary for me. I stopped cold turkey. I found the drug just plain freaky, not to mention the long term effects it may have on the brain. I lost a lot of weight fast (not good for me since I only way 100 lbs as it is). Food was of no interest (this could be a positive though if you wanted to lose weight). They did curb the migraines for maybe 2 weeks and then I had the worst one ever like they were all catching up. My abortives did not even work for that one. That was the turning point for me. I quit cold turkey. I probably sound dramatic but I can't believe they would even prescribe something that has such dopey side effect when you drive or have to work. On the other hand, I can abort my migraines (very very grateful for that). If I could not, living in la la land would be preferable "if" the Topamax was actually helping a lot. I do wish you luck. Some people seem to have success with it. I know I sound negative--just giving you the heads up. I was totally unprepared which probably didn't help matters. Keep us informed of your (hopefully successful) experience.
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	lovegia	Dec-08-09, 08:32 AM (CMT)
	17. "RE: Topamax advice?"
	estre did you find a preventative that did work for you? i dont like la-la-land lol, but i'll take it for what its worth because i can't abort mine with triptans. i don't work and i don't have to drive much because i'm a stay at home mom which is why topamax is an okay option for me but sometimes i feel like i'm at a slightly higher level than my daughter is thought wise. not all the time, but definitely in waves lol. thankfully not too many other people notice this
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	estre004	Dec-08-09, 10:45 AM (CMT)
	18. "RE: Topamax advice?"
	No preventative so far. That is my goal. My abortives do work though so if a preventative (such as Topamax for me) has uncomfortable side effects it isn't worth it for me. I know I really sound negative about Topamax and if I couldn't abort my migraines may feel differently about it if it worked at all. In my case though I would rather just abort the migraines as they come instead of living in lala land in hopes of reducing them. I do wish you luck with it though.
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	Chick	Dec-08-09, 11:21 AM (CMT)
	19. "RE: Topamax advice?"
	LAST EDITED ON Dec-08-09 AT 11:48 AM (CMT) Ive just read another side effect of topa is hair loss, has anyone had this s/e?
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	estre004	Dec-08-09, 01:09 PM (CMT)
	20. "RE: Topamax advice?"
	I didn't experience it myself but while researching this drug, a lot of people do suffer hair loss.
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	brendaenglish	Dec-08-09, 02:32 PM (CMT)
	21. "RE: Topamax advice?"
	I was on it for awhile. It helped the migraines somewhat. I had severe memory problems on it so my dosage had to be reduced (I forgot where I was supposed to be going while driving.) My new neurologist took me off of it when she heard that I had a kidney stone a few weeks ago because she said they can cause or make kidney stones worse. I also had tingling hands and feet on it and I had a terrible metallic taste in my mouth. I couldn't drink my beloved Coke anymore because it made it taste so nasty.
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	Chick	Dec-08-09, 03:01 PM (CMT)
	22. "RE: Topamax advice?"
	Do you think you would have stayed on it if you hadn't got kidney stones? What do you use now? I'm going to try it as that's the only way to find out if it will work for me, either going to be a a big help or a big disaster lol
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	estre004	Dec-08-09, 03:08 PM (CMT)
	23. "RE: Topamax advice?"
	The good news is although it was a disaster for me, I did return to normal as soon as I quit taking it and I quit cold turkey. I don't think you are suppose to do that so don't try it yourself. I didn't have any adverse side effects from doing it. I hated the drug so bad I didn't want to wean myself down slowly. I just flushed them down the toilet.
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	Chick	Dec-08-09, 03:26 PM (CMT)
	24. "RE: Topamax advice?"
	No if I need to stop I will try and do it gradual but I can understand you wanting to get straight off it if the effects were that bad for you. what dose were you on just before you stopped?
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	estre004	Dec-10-09, 08:51 AM (CMT)
	25. "RE: Topamax advice?"
	100 mg
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	AuntieBubbs	Dec-10-09, 04:27 PM (CMT)
	26. "RE: Topamax advice?"
	I was on Topomax for a long time, and went off (cold turkey) to see if I could handle my migraines without preventatives. I was off all preventatives for a couple of years and just restarted Topomax again about 2 months ago. I've already noticed my migraines are better. Less frequent and less severe. I had forgotten that the Topomax worked as well as it did for me. I don't experience the same kind of side effects described here. I don't get disoriented, have problems processing information, counting, driving, etc. I have felt that wierd tingling in my feet and, oddly, in my face, but that's it. I didn't know hair loss was a possible side effect, though. If I notice any significant hair loss, I will go off it. I'd rather put up with the migraines I had without preventatives than the less severe ones I have with it. I know that sounds bad, but my hair is the one thing I'm vain about. I have really nice hair. When you have only one thing about yourself that you like, and the migraines to some extent have helped rob you of a somewhat normal life, you want to hang on to the one thing about yourself you love, you know? Anyway, for what it's worth, that's my experience with Topomax. I take 100mg a day. Never had any severe side effects, I tolerate it really well. I used to take it in combination with Nuerontin, and the two together made me very sleepy. I prefer it on its own.
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	lovegia	Dec-10-09, 04:40 PM (CMT)
	27. "RE: Topamax advice?"
	love the hair comment. i know exactly what you mean, but it totally made me laugh i'm like that about my lips, although not much could compromise that. if anything did though, i'd be pissed. thanks for the chuckle, and hope you have much success with topamax
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	AuntieBubbs	Dec-11-09, 05:28 PM (CMT)
	28. "RE: Topamax advice?"
	It's totally true though, you know? I hate the migraines, but I hate what I've given up because of them too. I'm not gonna give up my hair, too!
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	lovegia	Dec-11-09, 05:38 PM (CMT)
	29. "RE: Topamax advice?"
	then no matter what, never give up your hair never ever give it up
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	brookelinn14	Dec-13-09, 11:40 AM (CMT)
	30. "RE: Topamax advice?"
	My advice is give it time. It is a tough medication to be on because of the side effects but it can work wonders so set a time line for yourself and stick to it, that's what I did. I decided that I would try it for 6 months and if it worked great, and if not then I would go off of it. But my doctor said that 6 months would be a good amount of time to see if it really is the right medication for me. Within 2 months it had cut my migraines down by 25%, by 4 months 50% which is where I'm at now. I do recommend taking the name brand because the fillers that they put in the generic can make the s/e's worse. I just switched about a month ago and it's a huge difference. No more numbness! I also have just made adjustments to my life. I let my clients at work know that I am on a medication that may make me work a little slower and let my friends know that I may need a little help filling in the blanks with conversations. But the alternative is being locked in a dark room with ice packs on my head 6 times a week. Now I only have to do that 3 times a week. At least I can live a little, even if I am dumber. Plus I love that I'm 30 lbs. lighter My new motto is "I might be dumb but I'm dumb and skinny!"
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