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        New Message Board Archives >> 2002 Posts >> Anything working that I haven't tried?
        
(Message started by: nutty2chat on Aug 12^th, 2002, 5:13am)

Title: Anything working that I haven't tried?
Post by nutty2chat on Aug 12^th, 2002, 5:13am

I need some advice. Here is my situation. I have been chronic for about 5 or 6 years. Verapmil worked for me until about 6 months ago. We (my nuero and myself) have been trying lots of different meds. Here is a list: Verapamil 720 mg a day, Indomethicin, elavil, depakote, topamax, lithium, prednisone taper, and lortab 7.5 for abortive. I am also using ice packs and relaxation. I am trying to get the o2 script filled, but insurance is giving flack. Is there anything out there that I haven't tried yet that is working for you? My doc is pretty good for taking suggestions. I have an appointment Wednesday morning. Has anyone seen a chiropractor? What about massage therapy? I feel like something in my neck may be triggering my ch. Any thoughts?

Title: Re: Anything working that I haven't tried?
Post by Charlie on Aug 12^th, 2002, 5:30am

Here is Dr. Wright's technique which was very helpful to me and some others. Because of its simplicity, there isn't more to it. It isn't perfect but that's par for the course when dealing with clusters:

Dr. Wright's Circulatory Feedback

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Anything working that I haven't tried?
Post by Svenn on Aug 12^th, 2002, 5:40am

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

I also have a bad heartcondition.Had a heartattack Nov 12.But quitting the shots is no option for me.I think that the shots is Gods gift to us clusterheads.
The thing that i don`t understand or found the answer to is how i after the attack has had only 9 light clusterattacks."singleattacks"And before i was diagnosed as a cronical.
But so it has been said."I do not reccomend heartattacks as a treatment for cluster".Its a bit extreme for that.Dont you think?
Take care my friend

Svenn

Title: Re: Anything working that I haven't tried?
Post by nutty2chat on Aug 12^th, 2002, 6:09am

Charlie, how do you redirect the blood flow? Do I rub my hands, just think about them, or what? I don't understand.

Oh, and I forgot to add imetrex shots and nasal spray to my list of things that don't work for me.

Title: Re: Anything working that I haven't tried?
Post by Charlie on Aug 12^th, 2002, 6:56am

For me, I just hold my arm still at my side and concentrate on making my arm and hand warm. For me, it's second nature but it's a kind of internal "push." I don't recommend rubbing your hands or warming them externally. That would be counter-productive. If anything, cold water would be more effective. This is an internal process. The idea is to make your body send blood to extremities. I suspect cold feet would have similar effect but my interal "push" works for me.

I can think of no simple way to describe this. I and others can do it. All I can say is that once you get the idea, you have to keep this up. It may take quite awhile but once it works, it will become easier. Of course you have to not give up. It may take 15 minutes or even more at first. I know that sounds impossible but I've never not tried. It usually works and now and then, very quickly.

Good luck

Charlie

Title: Re: Anything working that I haven't tried?
Post by Elaine on Aug 12^th, 2002, 7:08am

There are so many drugs out there now. Here is a link for you and when your there check the site out and joing OUCH if you have not all ready its free doesn't cost a dime to join.

http://www.clusterheadaches.org/medications.htm

Title: Re: Anything working that I haven't tried?
Post by markdavid on Aug 12^th, 2002, 7:32am

Zonegran (zonisamiide) 100mg 3 times a day . This drug takes a few days to fully set so I also use Oxygen . The results have been great to say the least. My nero. has tried this drug on one other person who WAS a 7 year chronic and he said it WORKED like magic, so I think if you can stand some goofy side effects it is worth it. It has not broken my cycle I still feel I am in it but damn near PF full nights sleep etc..........................

best of luck
mark david

Title: Re: Anything working that I haven't tried?
Post by Ted on Aug 12^th, 2002, 7:42am

on 08/12/02 at 05:13:32, nutty2chat wrote:

I am trying to get the o2 script filled, but insurance is giving flack.

Click here for my post from the old board to see how I got by my old insurance company's flack when trying to get them to cover O2. If the problems are the same as I had mail or fax them the medical information.

http://www.clusterheadaches.com/wwwboard/messages/81233.html

Title: Re: Anything working that I haven't tried?
Post by don on Aug 12^th, 2002, 8:14am

you seemed to have missed one of the most effective meds on the market;

imitrex injections

Title: Re: Anything working that I haven't tried?
Post by NotH20 on Aug 12^th, 2002, 8:38am

Hey Nutty - sorry that you are having such a rough time right now. We ALL know how frustrating the Med Game is all too well >:(

You may want to try Zomig and Maxalt as abortives. In addition do some research on a DHE IV treatment. That stopped my last cycle in January and I've been pain free since that time! ;D But again - do some research - this medication is not for everyone and as with any meds that you come across - what works for some doesn't work for others.

Good luck getting the O2 - it will be extremely helpful to you in reducing your pain quickly....

NotH20

Title: Re: Anything working that I haven't tried?
Post by 2late on Aug 12^th, 2002, 12:47pm

Neuontin seemed to help me with my last cycle,along with verapamil & 3mg melatonin before bed.the best abortives for me are immitrex injections & 02.neurontin is a anti-sezure med, see what your doc has to say about it, let us know. .................2late