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Topic: My Story with MEDS (Read 259 times) |
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Greg_A
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Hello, my name is Greg and I have been reading the posts on this site for a long time trying to find some way to prevent or kill the pain. I figured I would post and let you know some of the things I have tried and am trying now. I was in the Air Force for 8 yrs before they medically discharged me, now all my meds and treatment are paid for for life from the VA, but I would give all the paid for stuff up in a heartbeat if they could only fix it for good. Im sure a lot of you know what I mean. ANYWAY:
I am a 33y/o male that has been suffering chronic clusters for 5 years. I get anywhere from 1 to 4 a day lasting somewhere between 30 min to an hour or longer. Some things I have tried:
Hot shower: relives the pain somewhat, (I keep the water so hot it almost burns the ol toes). I try to stay under the water for at least 6 minutes. Thats how long it takes for the body to respond to a change in the environment.
Ice: I have the bag o peas in the freezer along with 3 blue ice. They give some relief but not much. I have even tried a hot shower then jumping out and doing the cold peas; doesnt work.. I was trying to confuse the HA I guess.
Verapamil SR (calan): the doc and neurologist have me on 720mg -- Not working
Lithium: 450mg a day -- Not working yet, I have been at it for a month.
Zomig: works if I take it early enough, but I find that taking 5mg at one time is a little much and the HA comes back or I go into the rebound syndrome quicker after taking 10 to 15mg in the same day-- so I started cutting the pills in half and taking half about 30 min before the schedule pain. Sometimes I will wait to see if the HA comes and every time I do, the pain comes and gets me good. I also notice that since I started cutting the pills, they seem to have a quicker affect. Maybe since the med is not covered by the coating -- dont know
Imitrex NS: Works sometimes, usually if my nose is already clogged up it wont have any effect.
Imitrex shots: GOOD SHIT!!! PF in 5 min -- cant get enough of them tho, the VA only gives me 4 per month. I think this is what the Neuro signed me up for. I have recently been using the Imitrex tip and that works well but takes a couple of minutes longer to get PF.
Im going to ask for them (the VA) to hook me up with as many as possible.. I go back April 11. I will let you know what happens. They did mention possible oxygen.
Anyways, this is just some of the things Ive tried along with the coffee, smokes, water, ice tea, vigorous exercise, etc. Just cant seem to break the 5 yr old cycle.
I'm open to any suggestions. I really dont know what else to do.
I have been thinking about the surgical options but there is too much risk of not getting the desired results.
Ok, this is getting long so i will write more later
Thanks for listening----- Greg in Orlando Fl.
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Ann
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Annage
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Re: My Story with MEDS
« Reply #1 on: Mar 26th, 2002, 7:21am » |
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Hiya! I know where you are coming from..as does everybody else on this site! Sorry you had to find us!
Here are a few suggestions...I'm not a doctor, but I play one on tv! LOL
verapamil - you are taking the slow release type. From what I have been reading from other sufferers around here the slow release is not the best. See if you can be switched to the regular. A lot of us get relief from it..it doesn't completely get rid of the CH but it lessens the frequency.
Zomig - been there done that..didn't work for me unless I anticipated the attack..which is hard to do when you are sleeping! ha!
imitrex injections - So far the best thing I have ever tried. I have started using half doses. The first time I did it, I must not have done it right. It took longer to take effect and I was left with residual pain. Now I really stick the sucker in there and the pain is gone within 5 minutes. I don't know how you are doing it. Maybe check that out.
other meds - take a look throughout this site. There are hordes of meds that people have had success with. Jonny is our poster boy for the verapamil + lithium combo. He would be able to tell you his dosage.
oxygen - I have never tried it but a lot of people here use it and find relief with it. I think it is something worth looking into.
Good luck and I hope I have been able to help you in some small way!
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NotH20
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Re: My Story with MEDS
« Reply #2 on: Mar 26th, 2002, 8:07am » |
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Greg - I've had CH's for over 20 years and usually they come approx every 18 months and last for 4 horrific months  This last cycle (which if everything goes to plan - I'll be med-free by the middle of next month  ) was one of the worst I've ever had!!!! I just wasn't responding to ANY of the meds out there.
My neuro admitted me in the hospital for a DHE IV treatment. I never even heard of this drug in all these years. I've found thru this site that it's an abortive similar to the Imitrex injection. But what my docs theory was with the IV treatment was a short stay in the hospital TOTALLY pain free while on other meds (Keppra, Topomax and Calan - all of which I was already on) and allowing my body to respond to them. The DHE was a "wonder drug" in my book and even though I was extremely zonked outta my mind for a while - it allowed the other meds to start working.
I came home w/ 2 trays of ampules of DHE for injections and only had to take 3 shots since my discharge from the hospital in January. I've been tappering down my meds since that time - totally off the Keppra, almost off the Topomax (one more week of that) and then 2 more weeks after that of the Calan.
When you go back on April 11th ask about some of the anti-seizure meds that I mentioned above - they are helpful to some ch'ers. Also ask about DHE - since at home the shot can be taken in the leg and/or arm. Also ask for a script for O2 - it doesn't work for all ch'ers, but it is worth the time to test it out.
Just a few thoughts that may be helpful. I wish you a lot of luck and keep the faith.
NotH20
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notseinfeld
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Enough is Enough. Vote Libertarian
 
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Re: My Story with MEDS
« Reply #3 on: Mar 26th, 2002, 10:26am » |
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Greg if you've been reading this site for a long time, how is it you haven't read about psilocybin? Remember, this treatment attacks the "ROOT CAUSE" of our awful condition. In my book it's the very first method of self-medication.
There's lots of info on this site as you know and I'm certainly not recommending something anathema to your comfort. (I hope) I'm just kinda surprised why so few folks seem to use this method and expend so much time and energy making prescription drug cocktails when nature has help.
Anyway, I'll support you and all the others here any way I can. You should post more.
seizure,
nots
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