Topomax
 

Anyone use this? Opinions please

I am on Cymbalta and Lyrica for post PCS neuropathic pain

Have gained weight so stopping Lyrica and starting Topomax instead.

I PERSONALLY did not have good luck with Topomax... it made me very glassy eyed and "out of it" It did not help ME with weightless... now I say all of this because I have heard some AWESOME things from people about Topomax... some people swear by it, I am just not one of them... sorry!

Hi there,

I'm on topamax, and I have to say, I am really enjoying it.

After almost 18 months of daily headaches and weekly migraines, I'm pretty pain free. Well-it's summer and the kids are home, so mostly.

I was on noritryptiline, and I gained a lot of weight (and I began to lactate!). I had headaches and migraines and vertigo. So there was no real relief.

I also did go gluten free, caffeine free, and adhere to a strict sleep regime to combat any brain fog that topamax is known for.

I did have the tingling in the beginning--but after the first 3 weeks--it went away, and I can taste the freedom of not having those awful headaches!

I do still get migraines easily (ie loud noises, too much reading (vision issues), if I push my threshold)-but the daily headaches are gone. Vertigo is gone. And that dullish pain throbbing is gone.

I think you should at least talk to your doctor about it-

Berkleybrain,

Glad you have found a solution, you were in the same miserable place I was in.

I already spoke to my doctor and I am starting Topomax tomorrow night instead of Lyrica which is in reserve if things don't work out.

Oh, I do hope it works well for you as well. I have found it so helpful. I'm sending you a lot of light and hope!

:)

Thankyou.

Only time will tell I suppose. The thing is I have slightly different symptoms to yourself because I have classic symptoms of neuralgia.

This is earache, toothache, headache, cheek pain and previously sinus pain. The migrainous headaches stopped long ago and when I had them I used Sumatripen.

Thankyou.

Only time will tell I suppose. The thing is I have slightly different symptoms to yourself because I have classic symptoms of neuralgia.

This is earache, toothache, headache, cheek pain and previously sinus pain. The migrainous headaches stopped long ago and when I had them I used Sumatripen.

The symptoms has been resolved with 30mg Cymbalta and 100mg/150 mg Lyrica, so it is a risk changing things. The main reason for change is weight gain from the Lyrica so I hope it works out.

I really hope it works out, starting 25mg Topomax tomorrow night.

Berkeley,

Just out of interest what is your dose and when are you taking it?

I am starting on 25mg at night for a week, moving upto 50mg after that.

I saw someone on the internet say that you might need upto 175mg to get pain relief.

I take Topamax and have been for about a year now. Up until recently I've been taking 200 mgs a day. Its not been a miracle drug for me, I've still had constant head pain for 2.5 years, but the difference its made is I no longer wake up crying from the pain, I just wake up and can go back to sleep.

A few weeks ago when I finally saw the neurologist, he set me on increasing the dose. So every two weeks, I increase by 25 mgs until either the side effects become unbearable, the head pain goes away (unlikely) or I reach the max dose of 400mgs a day.

We've tried many many different drugs over 2.5 years and surprisingly Topamax has been one of the only ones I've been able to tolerate at all, with almost no side effects or at least no real bothersome ones.

Food tastes a bit weird and there's no way I could drink soda, but I didn't drink it before anyhow, so there's no loss there... my appetite is a bit iffy at times but that's ok and I'm on the "fluffy" side anyhow ;) I think it has helped me not gain weight during my 2.5 years of inactivity. I'm the same weight as when I started, just have lost muscle tone, as I was fit and tone under my "fluffy" before.

Its unclear whether it affects my cognitive abilities or not, I had my neuropsych assessment while I was on a very small dose and scored very poorly and from what I can tell and those around me, nothing has seemed to change that much from before the Topamax to now, so if it does affect me, no one can tell.

I don't hold a lot of hope that increasing my dose will help my pain much, but I'm willing to try... I'm running out of options and fear I'm going to have to live with this head pain and I'm not sure I can. Its not a standard headache and doesn't respond as such, it seems.

Best of luck to you... I hope it works out for you!

Oh and I do occasionally get the "Topamax tingles" in my hands and feet, but drinking a glass of orange juice every morning seems to keep them under control.
Starr

Starr,

Thankyou for the report, I am sorry to hear of your troubles.

Did you ever try Lyrica? That completely erradicated my neuralgia! It is also an anticonvulsant with pain killing qualities. The draw back is it can cause weight gain, it isalso expensive.

However, if you have tried everything and Topomax is the only relief then I hope that over time your symptoms will eventually settle down.

Kind Regards.