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New Script for Topomax - I'm Scared!!!

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Jangel
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Tamsha101
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Post  Tamsha101 Fri Jan 28, 2011 3:07 pm

I just went to the doctor because my migraines have increased to daily over the past week. I tried Amitryptaline without success a couple of months ago - the neuro's next recommendation was Topomax. Start at 25mg and increase weekly to 100mg. I am SO scared to take this medication. I've heard awful stories.

Sleep disturbance/lack of and stress have always been my triggers and I have never had to use any type of preventative med all the years I've had migraine. it's just recently that they have become worse. The doctor gave me a script for a different sleeping pill to try as well. I wonder if I got my sleep and stress under control if I could avoid the Topomax.

I dont know what to do!!!! HELP!!!

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Post  CluelessKitty Fri Jan 28, 2011 5:34 pm

I am on Topamax and it's not as scary as it sounds.

But my advice is wait longer than a week before increasing the dose - wait at least THREE weeks,

best wait until you will feel confident the side effects from the initial 25 mg have passed.
It may take even longer than that for YOU.

Do it with every next 25 mg increments, and getting used to to the medication will not be half as bad as it would be otherwise.

Remember, you haven't been taking it at all before, so what's the rush? And Topamax can be real lifesaver
for some.

Risa
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Post  Migrainegirl Fri Jan 28, 2011 7:18 pm

The downside of this website is that we share all our horror stories. It's great for support and knowing you are not the only one with these problems. But it can make others afraid to try things.

Clueless is right. Just take it slow and be on the look out for side effects. Most are not that bad. If you do get something that is bad or does not resolve, call your doctor and get instructions for tapering off. Maybe you will be lucky and it will work for you. You really won't know until you try it.
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Post  stephgood Fri Jan 28, 2011 9:30 pm

I never really noticed side effects with Topomax myself. It didn't work for me, but really all I noticed was it changed the flavors of some food/drinks. Any pop tasted flat, and peanut butter and a few other things just tasted off. That was the only issue I ever had with it. Everyone responds differently to different medications. Until you try it you won't know how you respond. Maybe this will work for you and the only problem you have is peanut butter tastes funny. If it helps the pain I would be willing to give up the peanut butter forever!!! LOL I am sure it will work out, one way or another. I don't think you should be so worried though, that in itself can trigger you, and I figure you have enough on your plate! Good Luck!
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Post  Tamsha101 Sat Jan 29, 2011 2:39 pm

Thank you for your replies. For those on Topomax, have you noticed it interfere or aid with your sleep? Sleep and/or lack of is a huge trigger for me so all I need is for something else to distrupt it.

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Post  Jangel Sat Jan 29, 2011 6:40 pm

Hi Tamsha~
I too was very scared to try the Topamax but am glad I did and it wasn't nearly as scary as I thought it would be - at all.

I titrated up VERY SLOWLY and started at 15mg, going up by very small increments every 1-2 months at my insistence. Boy, am I glad I did. It gave my body time to get used to the side effects and made it so much easier to deal with them. This allows your body/brain an appropriate adjustment period. There is no rush.

As far as sleep, Topamax has actually helped my sleep. I too have problems with non-restorative sleep and insomnia, but I have noticed that I wake up much less frequently during the night and sleep more soundly since being on Topamax. It is subtle - it doesn't knock you out or anything, but my husband really notices it; he can see that I am sleeping much more soundly and I don't wake up as easily as I used to.

In general, the most noticable side effects are the cognitive slowness, word retrieval problems, hand and foot tingling. The cognitive side effects are there but diminish a few weeks after titrating up in dosage and have become much more tolerable.

Why I decided to try Topamax? - I was having mostly low-moderate level constant head pain daily with frequent moderate to severe full blown migraines on top of that 3-5 x a week. Now, I actually have some days without any head pain and have had the migraines reduced to 2-3 x a week (the menstrual ones are still the worst) and they are much more responsive to meds (though triptans only work 50% of the time for me....) in general.


The down side - I have had to up my dosage Topamax, as it stopped working at the lower dosage and the migraines were getting bad once again. I would have preferred to stay at 50 or 75mg, but I just wasn't working anymore. I will probably not go over 100mg. Heck, at this point I will take any help I can get, as long as it helps and gives me some of my life back.

Try to be brave and don't worry about trying Topamax. Insist to your Dr that you start low and go slow! The worst that will happen is that you cannot tolerate it and you will stop taking it. Please let us know how it goes for you. I hope it helps you!!

cat Jane
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Post  greent Sun Jan 30, 2011 10:38 am

I also did not have bad side effects from topamax. I was pretty scared to try it too, but my doctor reminded me that most people don't have bad side effects- those people don't often post about it though as often as people with bad side effects do! You could also ask your doctor about zonegran- a cousin to topamax. Topamax never really worked for my migraines, but zonegran seems to be making a difference!

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Post  Sara79 Sun Jan 30, 2011 11:18 am

Even though I did have a bad time with it, I would still advise you to cautiously give it a try.


As others have said, taper VERY slowly, and if you begin noticing that your emotional state had changed (depression, suicidal thoughts, panic attacks), be very descriptive in telling your doctor this. Part of my trouble was I thought the panic attacks were related to the memory and being a student; looking back, the panic attacks were me beginning down the slope of mental instability. Since I didn't go into detail about the attacks, they continued to have me taper, until I had suicidal thoughts, and I began to self taper over the weekend.


As I've said to others here, I did badly with it, but I personally know a couple of people who refer to topamax as a miracle drug. After I finished my quick taper down, I gave my remaining topamax pills to my co-worker, who was without insurance, and needed topamax, but was struggling to afford it. She was so grateful.



Final words: Cautiously try it, but keep yourself open to the possibilities that it may be heaven or hell, and watch out for signs of either. Best Wishes that it will be your Heaven!

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Post  mslibra Mon Feb 07, 2011 1:35 am

Topomox works very well for most people. I take 200mg daily. It keeps me awake, so I take it in the morning. I haven't noticed any side effects. It's reduced the number of migraines from once a week to once a month. Where formerly a migraine lasted three days, it now lasts less than one day when I take relpax. The nightmare is getting to be manageable.

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Post  gopher7252 Mon Feb 07, 2011 2:31 am

I take 150 mg of topamax every day. 75 in the morning, and 75 at night. I started at 50 daily and worked up slowly like a lot of people. It has really helped decrease the frequency of my migraines to once a month (down from every day) and I've never noticed any side effects except for two. That being that it's really hard to focus on a lot of stuff and I'm semi-OCD now, nothing too terrible compared with waking up every morning and not knowing who my mom was, or anyone for that matter, and having solid hour long periods of my memory during school simply disappear. don't be afraid of the topomax!

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