New to Topomax - some questions please

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limbic
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted 8/3/2012 9:16 AM (GMT -6)   
I've just been prescribed Topomax by my neurologist - I've been living with constant headache 24/7 ... got it when I get up and it worsens as the day progresses.

He's given me 25mg to take for 10 days, then 50mg thereafter. I have an appointment to see him again in 6 weeks.

I saw me during the week and have taken the Topomax for about 3-4 nights now.

The first 2 nights I took it at 10pm which gave me certain syptoms like dizziness, tingling, drowsiness etc because I was still up for about 4 hours after taking it. But I wisened up and am now taking it at 1am and going to bed at 2am.

I have a few questions please .........

How long does it take to start working, if it's going to help my headaches?

I've still got 2 side effects that I'm hoping will go after I've been taking it ...... change in taste of carbonated drinks (soda water) ..... it now tastes terrible ....... and I'm sleeping a LOT more ...... will these changes go away, or do I have them for as long as I"m on the med? If they go, how long will it be before I see them go?

And the final question, on another thread in this forum I saw mentioned that Topomax has a life of 1 day

www.healingwell.com/community/default.aspx?f=31&m=2114536


If you take the Topomax at a peak time of the day - in th evening, won't it risk running low each day and so each day you're spending some of the day at a lower dosage of the med? Know what I mean?

ie. who's to say that it doesn't last 23 hours for you, so the last hour of the day you have no pain relief? Or that the last hour of the day has less intensity of pain relief that at the beginning of the day when you've already been on it since the night before? Does it gete used up evenly through the day or at a proportionate rate?

Anyway, I'd love to know a little bit about what to expect.

limbic
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted 8/3/2012 9:20 AM (GMT -6)   
Sorry - I remembered that I'd forgotten to ask something else ........ ;-)

What does it mean to wake up with a headache? It can't be tension because while you're asleep there's no tension ...... or could it be the posture you're sleeping in?

It's just that I have a neurological disease - 15 years ago I got encephalitis - so I can't help wondering if this headache comes from the part of the brain that I've had damaged ......

Can you get headaches from brain damage?

What reasons do you have to wake up with a headache?

Thanks

migrainemom1984
New Member


Date Joined Aug 2012
Total Posts : 4
   Posted Yesterday 12:48 AM (GMT -6)   
Sorry to hear you are having such a bad time :( Although Topamax takes an adjustment period and has some side effects, such as the tingling and the loss of taste, I highly recommend that you call your physician first thing in the morning. I have been on 400mg for the past five years, and lower dosages prior to that, due to migraines. I would not want to guess, especially with your medical background, as to why you are waking with headaches. It could be any number of reasons of why you are experiencing discomfort, but again, please see the doctor regarding this as it could be an underlying condition, or side effect of the medication. I am sorry if this is not really the answer you are seeking, but I am pushing you to go to your doctor, for they will treat you appropriately.

Take Care

limbic
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted Yesterday 8:35 AM (GMT -6)   
Thanks for the reply ..... you said .......

"I would not want to guess, especially with your medical background, as to why you are waking with headaches."

I'm waking with it because I grind my teeth while I sleep and that gives you a mild headache .... but it's totally unrelated to the headache that I have for the rest of the day.

2 weeks have gone by since I posted the question and the side effects have gone because I've just changed the time I take it - I just take it now right before bedtime.

Thanks for the reply - much appreciated.

migrainemom1984
New Member


Date Joined Aug 2012
Total Posts : 4
   Posted Today 12:47 AM (GMT -6)   
I am so glad to hear that you found the cause of the headaches! Grinding is such a culprit, and I wish you continued success on the meds.

Best of Everything :)

AnnaCo
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/27/2012 11:50 PM (GMT -6)   
limbic,
 
I started Topamax about 3 months ago (now at 100mg by taking 50mg twice daily... started at 50mg then doubled in two weeks... my doc went quick, yikes!) When I started it, and at the dose increase, I did experience some odd side effects, but they did taper off and disappear within about ten days. 
 
I also experienced the flat pop/carbonated beverage effect.  That one actually took quite a bit longer to go away, but I figure that was a good thing, probably better not to drink so much pop/soda anyhow! ;0) Unfortunately, it now tastes good again, so I'm back to drinking it.  I also had the tiredness, tingling, and brain fog going on, but all have subsided. 
 
about your question with the med wearing off throughout the day, I know a lot of people take it in a split dose, pressumably to avoid that.  But I've also seen people who take it at night, I guess to avoid side effects? You'd probably have to ask your doc about that.  I take the split dose.
 
The side effects were very annoying, but in my case they all went away within 10 days or so of each dose increase and it was worth the inconvenience.  I have 24/7 migraines without headache (vertigo, brain fog, numbness, tingling, light/sound sensitivity, nausea, etc) and occasional headaces and the Topamax has gotten me down to only having issues about one day a week (I take Midrin on those days) and still improving. Hope it works for you if you can be patient! I know it's not the med for everyone, but I'm pretty happy with it so far. 
 
Good luck either way! :)

Post Edited (AnnaCo) : 8/27/2012 10:54:53 PM (GMT-6)

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