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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> For Rock_Lobster & HypnoticFreddy
        
(Message started by: Dave_W on Apr 28^th, 2004, 12:54pm)

Title: For Rock_Lobster & HypnoticFreddy
Post by Dave_W on Apr 28^th, 2004, 12:54pm

You guys ROCK!

Thanks for the Topamax suggestion. I called my doc yesterday and got a scrip to try. Took 50 mg last night, with only my verapamil (stopped the lithium and depakote). 50 mg again this AM.

Pain free! Only side effect is a little numbness or tingling in the face / forehead.

I should have had three bad ones since 6:00 PM last night. I'll keep ya posted.

Keep wishing good ones for me...

Old Dave

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by HypnoticFreddy on Apr 28^th, 2004, 2:52pm

Well.....thanks a lot, but it may be a little early to celebrate don't ya think?

Hope it all works in any event!

Good for you!!!

-Scott

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Karla on Apr 28^th, 2004, 3:11pm

You are on a very low dose. So low I really question weather it is the med working. I tried up to 600mg of the stuff and had no results. I have heard that 200mg is the theraputic range. Be very careful to incriment this medicine very slowely. It is recomended that you incriment it by 25 mg every 2 weeks. You are more apt to have side effects and problems if you do it faster.

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by HypnoticFreddy on Apr 28^th, 2004, 4:17pm

If Karla is talking about Topamax, which I think she is, very good advice. Usually you are told to taper up 25 mg per week. Taper up to 200 mg. If not getting relief. Stop and taper down. It ain't working. I have also head Topamax for clusters and migraines is therapeutic at 100-200 mg. For people with seizures, they usually go much higher, like what Karla described.

Good luck.

-Scott

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Rock_Lobster on Apr 28^th, 2004, 5:01pm

Great to hear, Dave!
100mg-150mg is what works for me. 300mg actually triggered more in my case, I believe.
Camping on 125mg a day right now... hoping to taper down soon.

My main side effect is the urge to nap at 1300 & 1700.

Hope you stay PF!

Good luck,
Rock

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Karla on Apr 28^th, 2004, 5:07pm

Yes I was talking about topamax. I was told at a ha clinic by a neuro that specializes in ha that just because 200mg of topamax didn't work for me that I should try it at a higher dose and I went up to 600mg. It still didn't work for me. Just made me loopy.

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by HypnoticFreddy on Apr 28^th, 2004, 7:29pm

Karla,

600 mg?!?!?! Were you coherent?

I have heard the Topamax = Dopeymax and such.

I think when I was maxed at 175 mg, I was slurring some words (a woman at work I have confided in about CHs noticed).

anyways, if the doc suggested it, and you could take the s/e's then why not.

I still feel though, and I have taken a lot of ant-convulsants/anti-seizure meds, that Topamax is quite powerful. Especially in the s/e department.

Karla. Last time I read some of your posts you were med free. How are you holding up?

-Scott

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Karla on Apr 28^th, 2004, 7:46pm

I went 6 weeks without any sign or symptom of ch. But yesterday and today I have been getting hit between kip3 and kip 6. Nothing that has turned into a full blown cluster. Just enough to make me annoid, irritated, mad, and crazy.

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Dave_W on Apr 30^th, 2004, 9:35am

OK, had a couple attacks show up yesterday after two days pain free. (still on 100 mg topamax). They were quite mild though. I'll do the taper-up that I've seen suggested, maybe add 25 this weekend with the doc's OK. Still no clusters to wake me up from sleep (yay!). I typically respond pretty quickly when something will work. The years when lithium is effective it stops them on the second day. I'm very hopeful and thankful, guys.

This is a real break-through, it's been a tough cycle and I do not want to do prednisone if I can avoid it!

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by HypnoticFreddy on Apr 30^th, 2004, 10:13am

Good luck Dave!!

Hope you find the right combo.

-Scott

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by UN_SOLVED on Apr 30^th, 2004, 11:39am

Glad to hear it's helping some of you. That shit bout killed me. Between the dumbness, clumsiness, and kidney stones ... I couldn't get a break from the headaches ! >:(

Unsolved

Title: Re: For Rock_Lobster & HypnoticFreddy
Post by Tiannia on Apr 30^th, 2004, 4:41pm

Topomax was bad mojo for me. Felt like I had food poisoning and ended up having to stop at 50mg a day. It seemed to have started helping with the HA if I could have handled the sickness and general "yuck".

Hope it works for you. Some people swear by it.

-Tia