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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Verapamil... Neurontin... what next?
        
(Message started by: simpson1974 on May 22^nd, 2002, 8:52am)

Title: Verapamil... Neurontin... what next?
Post by simpson1974 on May 22^nd, 2002, 8:52am

I have suffered with cluster headaches for about 12 years now. Once I finally found out what they were through a doctor who knew his stuff, I was placed on verapamil & prednisone. Prednisone helped abort the cycle the first time I took it and verapamil kept them under control. Verapamil worked for me through two cycles but stopped working, even with increased dosage, later on. Prednisone also lost its effectiveness. This was two years ago when I had the worst cycle I ever had. A neurontin/inderal combo knocked the headaches two years ago cold. I mostly took the neurontin alone, and it seemed to be effective.

Now, two years later, I'm taking the same combination at the same dosage, and it's not working anymore. I am taking imitrex injections now, but I, too, am in a hard place with my insurance, who will only pay for 2 every 10 days. I'm down to one injection with a full week to go before I get another prescription.

I'm going to my doctor tomorrow, and I'm wondering... what should I try next? I seem to know more about clusters than my current doctor, which is usually the case, so I can usually talk her into prescribing something for me. Where should I go from here?

I also tried oxygen early on, and that has never helped me. I must have something to block these, as I don't want to rely on imitrex. Any suggestions?

Thanks in advance!

Title: Re: Verapamil... Neurontin... what next?
Post by Karla on May 22^nd, 2002, 3:01pm

You may want to try zomig or amerge instead or imitrix. They are in the same class of family. Or you could try migranol ns. As a preventative Maybe try topamax or depakote, lithium, Sansert, there are other beta blockers and calcium channel blockers you can try besides vepramil and propranol such as Procardia, Nimotop. Some people have had luck with antidepressents also and tried zoloft, paxil, effexor, celexa, amitriptaline etc. Where you start is up to you. Good luck and praying for you to have pain free days.

Title: Re: Verapamil... Neurontin... what next?
Post by kim on May 22^nd, 2002, 5:11pm

Hi Simpson,

You say you tried the o2 early on. Early on in THIS instance or just early on like years ago........?

look through the info on the buttons to the left and find CURRENT 02 treatments. 02 was delivered to my house about ten years ago with this plug thing that DID NOT WORK!!! Better ways to use o2. Need non-rebreather mask and specific flow rates....Check it out.
also, for preventative many folks here use a combo of verapimil and lithium...gotta find the right dose for YOU.
I used (only for this past cycle) Neurontin. Cycle was SHORTER......I really don't know why and am not askin too many questions right now cuz cycle is over....BUT, from past experience and also from talking to the folks around here,I can tell ya what works sometimes don't always work the next....
Hang in and best of luck to you.
Kim

Title: Re: Verapamil... Neurontin... what next?
Post by simpson1974 on May 22^nd, 2002, 9:53pm

Thank you for your replies. I am going tomorrow to discuss this with my doctor. I hope I can find something... I just don't know what else to do.

As for the oxygen, I might check into it again. It has been... let's see... about 7 years or so.

Title: Re: Verapamil... Neurontin... what next?
Post by tommyD on May 23^rd, 2002, 7:41am

For my money, and I'm a cheap SOB, the best preventative is one your doctor probably doesn't know about and certainly won't prescribe.

Check out the current thread in this forum "shroom update."
These folks are describing the effect of psilocybin mushrooms on stubborn cases of CH. For some lucky clusterheads they work like magic...a small dose or two can wipe out an entire cycle.

Try these these links:
http://www.headachesupportgroups.com/shrooms/index.htm
- for lots of information on using psilocybin mushrooms to treat clusters, and:
http://www.headachesupportgroups.com/shrooms/2000.htm
- posts to the old message board where folks relate their experiences with using "shrooms."

Do all the reading and research - there are things to know, and shrooms aren't to be taken lightly. Some common CH meds can interfere with their effectiveness; others will enhance the psychoactive effects :o Those with mental instability should probably avoid psychedelic drugs.

And since they are illegal in most countries, there is no formal research on shrooms as treatment. So if you try them, please give us a detailed report. This message board is the only "research institute" looking into this. Everything we know has been posted here at one time or another.

Flash (who discovered this) and Pinksharkmark are our resident experts. Ask a question and they are likely to show up to help you out.

Title: Re: Verapamil... Neurontin... what next?
Post by simpson1974 on May 23^rd, 2002, 8:46am

I found it kind of ironic when I logged onto the board and found the threads on mushroom therapy. I just told my wife the previous day that I would snort cocaine if it would get rid of them, and I've never consumed an illegal drug in my life. Those who don't understand the pain of cluster headaches cannot understand the temptation to do ANYTHING to get rid of them.

Even though I'm in the middle of a bad cycle, I've had worse. If I can get my insurance company to give me more imitrex and if I can find something to block these, then I should be all right. However, mushroom therapy is something I can't say I wouldn't consider looking into if things were much worse.

I feel for those of you who have more attacks and worse pain than I do. I don't know how you live with it. If mine were much worse, I don't know what I would do. If I ever have another cycle like the one from hell I had two years ago, I don't know what will happen...

Title: Re: Verapamil... Neurontin... what next?
Post by Bob_P on May 23^rd, 2002, 11:16am

Actually, cocaine is effective for some. It numbs some nerve located in the back of the schnoz. Same application as lidocaine drops or nasal spray.

Title: Re: Verapamil... Neurontin... what next?
Post by Mattso on May 23^rd, 2002, 11:50am

"what works sometimes don't always work the next.... "

Ain't that the truth!

The only drug I've tried that you haven't (and that worked) is Lithium. Who knows, could be worth a try? I think Sansert was probably one of the worst drugs I ever tried, and personally would not recommend it.

Have you tried the Imitrex tip detailed on the buttons at the left? It saved me a lot of bux last time around.

I also agree that O2 may be worth checking into again using rebreather, etc.

If you ever have another cycle like the one from hell you had two years ago.....wouldn't that be the time to consider shrooms? Actually, I guess you'd want to have a jump on it, and have the shrooms ready to go before the cycle starts. I'm not a recreational drug user either, but this approach seems to me like almost a no brainer, or at least worth some serious researching.

Title: Re: Verapamil... Neurontin... what next?
Post by simpson1974 on May 23^rd, 2002, 12:43pm

I almost suggested lithium today at the doctor's office, but thought better of it. I think that might be the next step. Today she increased my dosage of neurontin from 900 to 1200 mg daily. I am still on inderal, and she prescribed something else... I'll post it once the prescription is filled because I can't remember what it was and my wife has the prescription. It starts with an "A" but I don't remember. She also called in some Midrin (spelling?) as an abortive drug, but it's a pill and I'm a bit skeptical. She said it worked for her migraines in 15-20 minutes, but we'll see. I just had a relatively mild freakin' rebound headache from an imitrex injection this morning that a vicodin didn't even touch.

As for the imitrex tip, yes I did try it. It worked like a charm. I did it for the first time this morning... probably took 3-4 mg instead of 2, but it worked. Took care of my headache just as quickly and left me 2-3 mg for another attack.

As for shrooms, I will be looking at more and more stuff on the net. If I ever get another cycle as bad as the one two years ago, I'll do anything to take care of it.

Thanks to all who have replied so far! I really appreciate it.