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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> My "Treatment"
        
(Message started by: tsachs on Mar 25^th, 2008, 3:27pm)

Title: My "Treatment"
Post by tsachs on Mar 25^th, 2008, 3:27pm

To Anyone whose life is lived between headaches,

I got my first headache in the spring of my junior year in college. I was 20. It started with a Horner's Syndrome (dilated pupil on one side), ptosis (droopy eyelid) and a small headache. I got a CT scan. Saw an ophthalmologist, and then a neurologist. I got them for a few weeks and didn't see them again until the following spring. Then the Horner's Syndrome was less prevalent and the headaches much worse. I saw my next neurologist (one of many to follow) who was appalled that my insurance only approved 5 Zoming tablets a month when I got headahces twice a day. He gave me some free samples. As summer came, they went away again. The next year there was no more Horner's Syndrome and the headaches were awful. Worst pain I ever had experienced. I would wake up in the middle of the night, banging and rocking my head for 45 minutes to an hour before they would slowly abate. And then within five minutes they were gone. Leaving me spent and fearful for the next one. I was afraid to go to sleep. With each year I moved and saw a new neurologist. This one started me on Verapamil and gave me imitrex injections. Wonderful stuff Imitrex. That's when I first visited this site. I tried all of it. Water therapy, halving the dose of the imitrex with a qtip (I still use that one! Fantastic advice). But the headaches went from seasonal to chronic. By year four I was maxed out on 480 mg of verapamil and taking shots once or twice a day. I was lucky. My father is a physician and could write for and approve large amounts of imitrex each month, and he would fill out the voluminous amounts of paperwork involved each 6 month period. And so thats how I lived for the next three years.

No alcohol. No caffiene. Lots of Zomig and Imitrex. But the headaches kept getting worse. I saw another neurologist and then another. I got an oxygen tank at home. I tried melatonin, amitryptiline, aspirin, everything. Then I was in greece after graduation. I was on a remote island, and I ran out of my imitrex. I was having three headaches a day. I was in agony. I remember running, scaling these stairs, hoping the exercise would help. And then I was sitting high atop a cliff, rocking back and forth, pressing my thumbs into my temples and crying. I thought about jumping off...

I still don't know if I was serious or not. At the time I thought I was. As it turned out this island with one grocery store had one pharmacy too. And on this greek island you could buy Zomig for a tenth the price of the US. I got enough tabs for thirty bucks to last another month. It got me home.

Back home I saw neurologist number 10 or so who suggested a new regimen and then told me to consider surgery - a craniotomy (open my head!) - and isolating and obliterating the nerves in my head causing the pain. Thats how far I had gotten. Chronic Clusters...two or three a day...for the rest of my life OR surgery - dangerous surgery - with debatable outcome.

Then I spoke to yet another neurologist I knew. Not my doctor. Not a headache specialist at all. But a smart guy. I tell him what I am going through as an aside and he tells me to go up on my verapamil. I tell him I am maxed out. I am taking 480mg a day. The most you can take safely. He tells me, "So?" Verapamil worked for a while, and continued to until I maxed out in year three. Now it doesn't. Why not try upping the dose? So I went back to the other neurologist and told him. He said we could try but wasn't hopeful. Chronic sufferers don't get better he said. So I get an EKG and a full physical. And we go up on the dose.

I am now on 180 mg of extended release verapamil. I take two tabs twice a day. Thats 720mg a day. Enough, they say, to stop a horse's heart. But because I increased it slowly, I have no problems. I'll admit it, I am healthy, without any medical problems other than clusters and a bad knee. I am in moderate shape and exercise sometimes. I eat ok. But here's the kicker:

Its been two years. No headaches. I may have one or two a year when I miss a dose or two. But thats it. Only if I miss my verapamil a couple times in a row. And I have wine with dinner or a beer or two on a saturday. I drink coffee when I want to. I don't have to go to bed and wake up on a strict schedule anymore. No headaches. I mean NO HEADACHES. Two years.

My blood pressure is about 110/65. My pulse is 55 at baseline. If I raise my arm above my head for too long it gets tingly and numb. I can't run as fast as I used to, but at 30 I am older too, so who knows what the reason is. But these things are trifles. TRIFLES...

I have no headaches and I have my life back. I don't worry about my next headache. I am thirty years old and if I had tried this five years ago I would have had my life back three years earlier.

I haven't been on this site for many years. I should have told this to everyone earlier. Of course, I don't know if it will work for everyone. And if you have other medical problems, it may be dangerous. But Verapamil is about as cheap a drug as there is. I urge you to see your doctors, especially if you are chronic sufferers. It may take a few months to get to a good basal level. It may take time, but it is worth it. Nothing has made more of a difference in my life.

Anyhow, I am going to talk to my neurologist to get him to try a large study on this. Maybe it can help more than just me.

Good luck everyone.

If you have questions for me, email me at ts7766@yahoo.com. I probably won't be checking this post. It sounds silly, and I certainly don't mean to be rude, but the simple fact is, I don't need to check it...I don't get clusters anymore.

All the best.

- t

Title: Re: My Cure
Post by brewcrew on Mar 25^th, 2008, 3:49pm

Thanks for that.

Any kind of chemical that needs to be ingested on a regular basis is not, in my book, a cure. It is a treatment.

I hope you never get another one. Seriously.

Title: Re: My Cure
Post by Guiseppi on Mar 25^th, 2008, 4:12pm

I tried verapamil at what I now realize was too low a doseage for CH. I have since stumbled onto lithium, which at 1200 mg a day is my silver bullet.

We're a little testy about the word "cure" on this board! We'd all love to find one mind you, it just hasn't arrived on scene yet. I'm glad verapamil is working so well. Please consider sticking around though. The most consistent trait about CH is its ability to morph, what has worked for 10 years will suddenly become ineffective. It wouldn't hurt to have something else in your arsenal!

Please get your dad to check out the board also. The more physicians we educate, the fewer the number of people who will suffer through mis diagnosis!

Guiseppi

Title: Re: My "Treatment"
Post by thebbz on Mar 25^th, 2008, 10:07pm

cool for you, That type of drug therapy helps many. There is no cure. Still good for you. 2 years rocks
thebb

Title: Re: My "Treatment"
Post by sandie99 on Mar 26^th, 2008, 4:16am

So you keep on taking verapamil? Even you've been PF for two years?

When I was taking it, I wanted to stop taking it (and, any kinds of meds!) as soon as it would be safe to do so.

Sanna

Title: Re: My "Treatment"
Post by Qazpur on Mar 26^th, 2008, 5:36am

i'm currently up to 480mg, still waiting for this cycle to break - my neuro has other CH's on up to 1000mg but personally i'd be rather wary of trying that, even for short periods of time.

guiseppi, good to hear that lithium is working for you, that will be my next strategy should the current continue to be ineffective.

Title: Re: My "Treatment"
Post by Bob P on Mar 26^th, 2008, 7:08am

Some cluster sufferers are up as high as 1200 mg/day on the verapamil.

Title: Re: My "Treatment"
Post by DennisM1045 on Mar 26^th, 2008, 3:51pm

Congrats t! Always good to hear of someone finding their magic bullet.

After some initial bumps in the road I'm up to 240mg of immediate release verapamil and the beast has been quiet for the last two weeks. The only exceptions are when I ignore food triggers. Like those chicken fingers I ate Friday night... NO MSG!!!!

BP right now is 120/80. HR is 55. I think I could go up more if I needed to.

-Dennis-