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        Cluster Headache Help and Support >> Cluster Headache Specific >> dont think topamax is working!!
        
(Message started by: bigred on Jan 12^th, 2007, 8:26pm)

Title: dont think topamax is working!!
Post by bigred on Jan 12^th, 2007, 8:26pm

Ive been on it a year and it does not seem to work.
Is there another daily med I could sub for It?
Im taking Verapimil daily also!
150 mlg topamax daily
720 mlg verapimil
I am at my wits end trying to stay out of cycle!
The Verapamil did a good job bringing my blood pressure into check so that stays!!!
It seems like every time I take the topamax it almost starts the ufora of the beast, you Know what I mean!!

Title: Re: dont think topamax is working!!
Post by Guiseppi on Jan 13^th, 2007, 1:29am

I use lithium as a prevent. I'm 47, weigh about 190 and use 1200 mg a day lithium a day when on cycle. Blocks the majority of my hits. Oxygen with cafergot nails the majority of my break thrus with the rare imitrez jab when I'm in trouble. Never tried the topomax, found lithium first and so far it's been great. Good luck.

Guiseppi

Title: Re: dont think topamax is working!!
Post by froggy on Jan 13^th, 2007, 3:40am

My hubby tried Topamax this past year and it looked like it was going to work. He was also on a lighter dose than most (from what I've been reading) of Verapamil (spelling?), just 240mg/day. But after about 2 weeks the Topamax slide into a downward slump.

Sansert used to be the one that worked the best for him but it looks like they took it off of the American market or stopped making it (tough on the liver after a while and you have to get checked every 6 months). We've been scrambling ever since. Maybey you can find it on line.

He used to take Cafergot about 15 years ago. After awhile, we figured he was rebounding from it. So, we moved on to imitrex (that was about the time that came to the U. S. from the Netherlands) and boy was that the dream come true.

Oxygen didn't work for him. Tried that with the Clustermasx even.

Guiseppi would you elaborate more on the lithium. That is one thing we haven't tried. I've been avoiding it cuz I thought it might be mind altering. But I've been reading good things about it lately on the site.

Bigred, is your Neurologist someone who will work with you on new treatment options? Maybey he/she can go down the line to help find you the right cocktail.

Best of luck,
michelle

Title: Re: dont think topamax is working!!
Post by E-Double on Jan 13^th, 2007, 8:23am

There are certainly plenty of options.....

http://www.brightok.net/~mnjday/chtherapy.pdf

I personally got fed up with meds and go about it med free.

Good luck!

E

Title: Re: dont think topamax is working!!
Post by bigred on Jan 13^th, 2007, 8:47am

Thanks for the help my freinds, Yes my Doc is a nuerosurgen that has a headache clinic in omaha that specialzes in our problem, so he is working with me.
I would also like to know more about the lythium if anyone has had good-bad results and is it a daily med I could use??
I have the Trex injex, but Im trying to weed myself off my regular abort usage,
I have great insuranse. But what happens someday if that coverage ever gets altered so I dont get the amont I need!!!! And am used to.
Im trying to be proactive and bring my hits down, using no meds at all IS NOT AN OPTION< I tried that and it almost KILLED ME!!!
Thanks guys
BIGRED ::)

Title: Re: dont think topamax is working!!
Post by BarbaraD on Jan 13^th, 2007, 9:13am

Red,'

I was on topamax for years and the dosage had to be adjusted - depending on whether I was in high cycle or low cycle (I'm chronic). It was my miracle drug. Ask your doc about increasing the dosage when it's not working real well. (And take the whole dose at night before bed to keep down the side effects).

Have you tried Melatonin at night (give it a few weeks to start working properly)? It's helped me a LOT to sleep at night and be rested for the day hits.

We're all different and react to meds differently. Hope you find the right combo soon and get some PF time.

Hugs BD

Title: Re: dont think topamax is working!!
Post by bigred on Jan 13^th, 2007, 9:32am

E-Double thanks for the link that was a great Read, and it gave me stuff to take to my doc>
Barb, I have tried mix and matching my doses up and down, taking them morning and night, all at once at night, in the morning, The Topamax just seems to have worn out its welcome.(ive added vitamin b12 and a vitamin c every day just to keep the body in check)
Im going to add the melatonin to the mix at night, and stick with it until my next doc app.
In that link E-Double has they are very sold on the melatonin as a prevent.
Thanks
BIGRED ;)

Title: Re: dont think topamax is working!!
Post by E-Double on Jan 13^th, 2007, 9:41am

There is a lot of meds that work for us but of course at different dosages and with different levels of efficacy.

I have tried all of the big ones and honestly the only thing that seemed to make a difference was verapamil standard release and lithium, however I developed toxicity and then decided that I was through with meds.

I went over a decade without any treatment and cycles were devestatingly painful but brief.
I introduced medication and my 1 month cycle is now into its 3rd year.
I detoxed completely in March '06 and though my chronic cycle never broke as defined by the criteria put forth by IHS, life has become easier.

Whatever it is you choose to do , make sure that you are comfortable with it and that your doctor works with you.

In addition I like your gum ;;D

Title: Re: dont think topamax is working!!
Post by bigred on Jan 13^th, 2007, 10:57am

This time of year is the worst for me,hear in the midwest, you fight chest and sinus infection, so you using Nyquil, and sinus decon on top of your daily meds and that just is not a good mix,
But if you dont keep the head clear its a gaurentead
CH, sinus infection=bad HA for me anyway!!
Alergies is also a problem for some people ive heard , I noticed when I kicked on the heater the first time this year, I got a sinus infection, of course I changed the filter, but I believe that dust , and small particals inside the vents from the sping and summer came out on that inital startup, And got me!
Darn Farmers around hear anyway!! ;;D
BIGRED

Title: Re: dont think topamax is working!!
Post by froggy on Jan 13^th, 2007, 3:17pm

Guiseppi has talked about Lithium, he might be a good start.

Title: Re: dont think topamax is working!!
Post by Jonny on Jan 13^th, 2007, 3:27pm

I took Lithium and Verapamil every day for 14 years (its called the chronics cocktail, which I was) and it prevented 85-90% of all HA's.

Can you imagine a chronic getting their life back?

Title: Re: dont think topamax is working!!
Post by froggy on Jan 13^th, 2007, 5:13pm

What was the dosage amount that you took? And what times of the day?

Title: Re: dont think topamax is working!!
Post by bigred on Jan 14^th, 2007, 10:15am

Jonny I got a couple qeustions? Im a smoker, would that be a problem.My doc hates it, ive tried to quit , just cant yet!
Does the lythium efect sleep,or is there any bad side affects, also how much follow up care does he have to have with me, I cant miss alot of work to have to see the doc every two weeks!!
Whats the best daily dosege to go with my 760 mg verapamil.
Thanks
BIGRED!!

Title: Re: dont think topamax is working!!
Post by Bond007 on Jan 15^th, 2007, 1:52pm

I tried Topamax and was up to 300mg a day for several months. It never worked for long and I eventually stopped the drug because I had the WORST kidney stones. (I'd still rather pass a stone than have a CH mind you.) Now, I'm on verapamil alone and it worked rather well for the first several weeks until recently. Hopefully, my neuro will have some suggestions when I see him on 1/29.

As for the lithium, I was on that when I was in college for bipolar disorder. The worst side I had with it was feeling just "blah" about almost everything. No more highs and no more lows. My mood regulated and stayed very consistent just below feeling "good". I was on it for 4 years and never had any problems with toxicity.

Good luck, bro!

Title: Re: dont think topamax is working!!
Post by rbmb on Jan 16^th, 2007, 1:36pm

I took Topomax during my cycle last year and thought it was a wonder drug until it stopped working. Took it during this current cycle which has been going on since August and it didn't seem to do anything. My neuro then put me on a prednsone taper with 1200mg of lithium. HAs went from 3 or 4 a night to either none or one mild HA a night. They haven't completely disappeared, but are much less intense and I'm actually getting something resembling a normal night's sleep. Other than a slight metalic taste in my mouth, I'm not really noticing any side affects. I would really recommend trying lithium as a preventative.
Rich