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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topamax?/ poss. alteranatives?
        
(Message started by: pfunk on Feb 16^th, 2006, 5:06pm)

Title: Topamax?/ poss. alteranatives?
Post by pfunk on Feb 16^th, 2006, 5:06pm

I posted a message earlier about a little experience I had yesterday with kidney stones. It has come to my attention that kidney stones may actually be a side affect of topamax. Because I cannot afford any further setbacks at this point, I do not want to take the cahnce of developing the stones again. I know some of you have suggested other things than Top. But could you give me your help again let me know what else I can suggest to my doctor that I can take in stead of the Top.? ;;D

Pfunk

Title: I think Verapamil is...
Post by Richr8 on Feb 16^th, 2006, 5:20pm

...a good alternative to Topamax. I standby to be corrected. And you are right about kidney stones and Topamax although large infusions of water should minimize this problem.

Rich

Title: Re: Topamax?/ poss. alteranatives?
Post by Karla on Feb 16^th, 2006, 6:23pm

Yes, topamax will cause stones and also stupidity(memory loss).
preventatives -

verapamil(up to 960mg/day) and/or lithium(900mg), indocin(50mg), elavil (20mg), Zyprexa, neurontin, etc.

abortives -

oxygen (see link to left <== on how to use and what you need) 8-12 liters per min. for 15-20 min. etc. , imitrix injectable and/ or nasal spray(20mg) both kick in aprox at 10-15 min., if o2 and imitrix don't work try zomig nasal spray, axert, amerge, frova, migranol nasal spray, dhe, etc.

Hope this helps get you started.

Title: Re: Topamax?/ poss. alteranatives?
Post by llreed on Feb 16^th, 2006, 7:09pm

I agree with Karla,
Verapamil - has worked well for me. Topamax didn't help me much and added more symptoms than I wished to have. Give us more time and I am sure you will get a better list.
Sorry to here about the kidney stones - been there thought giving birth was bad!!!!

[smiley=bigcry.gif]

Better Days,
llreed

Title: Re: Topamax?/ poss. alteranatives?
Post by E-Double on Feb 17^th, 2006, 1:01pm

If topamax is actually helping with the exception of the damn kidney stones(sorry bud!) you may consider Zonegran.
It is similar to Topamax without the negative side effects

Title: Re: Topamax?/ poss. alteranatives?
Post by pfunk on Feb 17^th, 2006, 1:43pm

Folks, went back to the doc today b/c was very concerned about the stones. My family has a long, long hisory of kidney problems and I don't want to take any chances on my end. My great-grand mother and and grand mother both died from kidney cancer. I have two first cousins who each only have one kidney due to kidney cancer and my brother also has kidney problems. It's not that I think kidney stones may be linked to cancer or anything like that but I just don't want to take any chance with my kidneys at this point in my life. Therfore, doc has taken me off of topamax and started me back with 300 mg of verapamil to go up with time as he thinks it was not good to start at too high a dose and he wanted me on it to begin with. He also says it won't have the funky side effects the Top did.
Thanks alot for your help. I hope this works b/c the Top. was helping. :-/

Pfunk

Title: Re: Topamax?/ poss. alteranatives?
Post by Dragnlance on Feb 17^th, 2006, 2:49pm

Have you looked at Kudzu???

Major help for me

Dragn

Title: Re: Topamax?/ poss. alteranatives?
Post by pfunk on Feb 17^th, 2006, 3:07pm

Kudzu is one of the thing I have been looking at b/c I have been trying to cut out some of the prescription meds. The issue that I am having right now with the Kudzu is finding it in the stores around here. There are a few more places that I'm going to try b/c verapamil is not cheap either($50 with the co-pay on my insurance). But I definitely would like to give it a try as a non-prescription alternative.

Pfunk

Title: Re: Topamax?/ poss. alteranatives?
Post by seasonalboomer on Feb 17^th, 2006, 3:24pm

on 02/17/06 at 15:07:31, pfunk wrote:

Here, try this. They'll have it to you in a couple of days.

http://www.vitacost.com/NaturesWayKudzuRoot

I've bought it before from local herbal/vitamin stores. Never have ever found it in a GNC. Also bought it online from these guys.

Scott

Title: Re: Topamax?/ poss. alteranatives?
Post by FramCire on Feb 17^th, 2006, 3:35pm

on 02/17/06 at 15:07:31, pfunk wrote:

There are a few more places that I'm going to try b/c verapamil is not cheap either($50 with the co-pay on my insurance). But I definitely would like to give it a try as a non-prescription alternative.

Pfunk

I think there might be a problem. Verapamil is a cheap generic drug. My co-pay is $8 for it. You had better check that again, you can get Verap on the internet a ton cheaper.

I just called my local pharmacy and 60 tabs of Verapomil (240mgs) would cost $21.99 WITHOUT insurance and that is a months supply at (480mgs). Did they give you the non-generic (Calan, I think)? You can take the generic.

If you still have a problem PM me and I can ask my pharmacy if they will mail it to you with a proper perscription.

Title: Re: Topamax?/ poss. alteranatives?
Post by Dragnlance on Feb 17^th, 2006, 3:40pm

Most health food places have it. Not sure if GNC in the shopping mall does, never looked.
You can find it online fairly cheap however...

Title: Re: Topamax?/ poss. alteranatives?
Post by Kris_in_SJ on Feb 17^th, 2006, 8:29pm

As said above, if Verapamil is THAT expensive, you're taking brand instead of generic. I've never paid more than a few bucks for my supply, and that's with a 50% copay. Ask for generic, then shop around.

Kudzu is widely available on the internet at various reputable pharmacies. All you need is a credit card.

Good Luck!

Kris

Title: Re: Topamax?/ poss. alteranatives?
Post by sarahmom on Feb 21^st, 2006, 9:05pm

E-Double beat me to it (and yeah, i'm a bit behind...). Zonegran is an alternative for Topamax. It does the same thing, but w/less side effects. I switched to it, and it has been a wonderful thing for me. Best of luck!!

Title: Re: Topamax?/ poss. alteranatives?
Post by mynm156 on Mar 9^th, 2006, 2:34pm

on 02/17/06 at 13:01:57, E-Double wrote:

If topamax is actually helping with the exception of the damn kidney stones(sorry bud!) you may consider Zonegran.
It is similar to Topamax without the negative side effects

Sorry man Zonegran will do it too. I got Kidney Stones from it. Guess what once you have had kindey stones there is a high probability that you will continue to have them even after you have stopped the meds.

Title: Re: Topamax?/ poss. alteranatives?
Post by mike49 on Apr 17^th, 2006, 5:16pm

Just a note about my experience with topamax. Took it for about 6 weeks for my CH, wish I never had. Doc started me at 50mg per day, was up to 400mg per day by week 6. One nite eyes hurt so bad I couldn't stand it. Right eye also had blurred vision. Next day went to ER and also called doc. Doc tapered me off within 1 week, said blurred vision would go away. It never did. Saw eye doc a few times, he explained problem, saw eye surgeon, i have vitreous separation, need surgery to correct. Then it got worse, now I have optic neuritis and I am totally blind in my right eye. Surgeon now says I have to get optic neuritis cleared up before he can do surgery to repair the other damage. I just got an MRI and am waiting results. But I'm sitting here blind in one eye and just hoping I can still work. Anyone know a good attorney????? ugh!!!!!

Title: Re: Topamax?/ poss. alteranatives?
Post by mynm156 on Apr 19^th, 2006, 1:49pm

Zonagran is a fine alternative but it too can give you kidney stones and once you have had them your body keeps on making them.

MYNM156

Title: Re: Topamax?/ poss. alteranatives?
Post by Tom K on Apr 19^th, 2006, 11:16pm

I used Dopemax and I don't remember if I didn't get attacks or I was just too stupid to remember them. My doc perscribed Trileptal. She says it works, but I didn't get to try it, cuz my cycle is coming to an end...I hope. I spoke with my doc yesterday about kudzu and she said that at the headache conference she was at a few months ago, they weren't talking about it at all. The thing that everyone was talking about was Petadolex. It has been cleared by the German version of the FDA for headaches and seems to be working. If you do buy petadolex, go with the company of Weber. My doc says that they are the one's who have done the best job of figuring out the extract process. Have you talked to your doc about Botox or trigger point injections? I did Botox for my last cycle and it lasted for about 8 months. It's kinda spendy but seemed worth it to me.