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        New Message Board Archives >> 2002 Posts >> First Time Writer Long Time Sufferer
        
(Message started by: Ted Pounder on Oct 25^th, 2002, 12:14pm)

Title: First Time Writer Long Time Sufferer
Post by Ted Pounder on Oct 25^th, 2002, 12:14pm

Hello Everyone-
My wife found this site, and it is the most informative I have found to date. Ive had CHs for about 3 years and Im in the middle of a spell now. (it took a couple of days off but it was back last night at 3:20 just like a bus that is ALWAYS on time.) I seem to get 2 cycles a year, 1 in Spring, 1 in Autumn. This one has lasted for 6 weeks now and counting. My wife suffers from Migraines and ive taken so many of her Imitrex shots that she now only has 3 left. Imitrex works but only for about 12-24 hrs. Ive been trying lots of things to prevent them from recurring i.e. cut back on smoking and drink about 3 liters of water a day.
I went to the E.R. last year and there was a Dr. that put a shot of Cortizone in my head. It took the headache away immediately and it didnt re-occur until about 6 months. NOW I CANT FIND A DOCTOR TO DO IT! :'( Its pretty bad when you hate needles as much as I do and you're asking every doctor you see to please stick A BIG FRIGGIN NEEDLE IN THE MOST PAINFUL SPOT IN MY HEAD. All of them so far have given me meds to have a "doped up headache" Demarol, Promethazine, Valium, and I take Vicodin ES for a broken back. I am used to chronic back pain now but the CHs make it look like a paper-cut. I have a very supporting family and it tears them apart to see me in such pain. I try to hide it but theres no use, it just hurts too much. :-[
Is there anyone out there that has had a nerve block? and if so did it work like it did for me? Im about to drive to Seattle and pay cash (no insurance) for some overpriced DR to just kill it with a nerve block.
If you have any suggestions or comments please respond. (ANYTHING AT THIS POINT WOULD BE GOOD)

Thanx, and hoping for all of us to be pain free
Ted

Title: Re: First Time Writer Long Time Sufferer
Post by echo on Oct 25^th, 2002, 12:28pm

The nerve block scares the hell out of me. I personally would not go that direction. The cortizone shot is something I'm not familiar with either. I probably have read something on this somewhere but cannot honestly remember right now.
I do feel for what you are going through. I too am expecting my fall dance. Weather change, time change, temperature change normally bring the SOB out of hiding.
I hope you are able to find the preventative drug combo platter that will keep the beast at bay without having to go the the drastic nerve block method.
Welcome aboard.

Title: Re: First Time Writer Long Time Sufferer
Post by Margi on Oct 25^th, 2002, 12:45pm

I agree with Echo - those nerve blocks are scary. And usually not that effective, long term.
Are you using oxygen as an abortive? If not, you really should. There are some here (my husband included) who use welder's oxygen. I'm also a migrainer and it helps me too - might help YOUR wife as well.
Also, what about using ice when you're having an attack? Frozen peas or corn work well, too - just lay the ice bag (or whatever) on the back of your neck when you feel an attack coming on...and you can also mold it to the shape of your face and apply it directly on the pain. It fools the brain into thinking your body is cooling down, and therefore lowers your pulse rate.
Hope you find some relief, Ted. Glad you found us.
And try some Dramamine (generic works too) OR Benadryl before bed. Might get you thru the night without an attack.

Title: Re: First Time Writer Long Time Sufferer
Post by StanTheMan on Oct 25^th, 2002, 12:55pm

Glad you found us Ted, but sorry to hear you're suffering...

I'm assuming (from reading your post) that you have already been seen by a neurologist for a proper diagnosis -- preferably one who has some experience treating this disorder -- not just a regular doc.

Ditto on what Margi said -- try O2. (I intend to try it the next time I go through a cycle). From what I've heard, it does *wonders* for some sufferers, but not all, of course.

Prayers for pain free days and nights.

StanTheMan

Title: Re: First Time Writer Long Time Sufferer
Post by Jim R on Oct 25^th, 2002, 1:49pm

Ted,

I echo the O2 suggestions above - it can be a real relief. Also, if you're not on any preventatives: verapamil. It's THE standard preventative here and relatively benign as far as side effects. There are a plethora of other drugs, most of which are discussed on this MB and which at least a few have tried...

Good luck to you Ted and pain free days and nights (PFDAN's)

Jim R

Title: Re: First Time Writer Long Time Sufferer
Post by pjbgravely on Oct 25^th, 2002, 3:21pm

Ted,
Becareful of cutting back on smoking and make sure you get plenty of black coffee. I have aborted a ch by chain smoking and Imitrex won't do much for me without caffine. Imitrex is only suppose to stay effective for 2 to 3 hours(someone correct me if if I am wrong). It should only stop 1 ch, if you can stop a whole days of attacks with one shot then you are blessed. Check out the imitrex tip to the left. PJB

Title: Re: First Time Writer Long Time Sufferer
Post by domm on Oct 25^th, 2002, 3:49pm

Ted - sorry to hear that you're in pain, but you've found the right place for cluster headache sufferers.
I'm sure you've read all the info on medications (buttons on the left) and visited the OUCH site. There is tons of information on dealing with this damn horrid condition and you're already getting the best advise. (Oxygen)
good luck on finding some PF days and nights
domm

Title: Re: First Time Writer Long Time Sufferer
Post by Svenn on Oct 25^th, 2002, 5:27pm

Hi Ted
I has a clusterbud here in Norway that did the nerve block,but it only made the clusterattacks twice as hard for him after.

Hi advice to everybody who is thinking of doing that is to think again twice.

There is NO guarantees

I like to add my miraclecure for breaking out of cycle:

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 seconds 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

Really hope that you can get some help soon

Svenn

Title: Re: First Time Writer Long Time Sufferer
Post by 2late on Oct 25^th, 2002, 5:34pm

welcome to the board ted! take the advice of these fine people! ...............2late

Title: Re: First Time Writer Long Time Sufferer
Post by Charlie on Oct 25^th, 2002, 6:19pm

Welcome to the madhouse Ted. There are lots of good ideas here and if you stick around, I promise you'll find something to help or make this horror more manageable. Here is something to try. It did me a world of good:

Dr. Wright's Circulatory Technique

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: First Time Writer Long Time Sufferer
Post by Ted Pounder on Oct 26^th, 2002, 2:24am

thank you all so much for the posts-
I totally feel not so alone when i describe the fish-hook in the back of my eye. You have all given me alot of info. (as i drink my third liter of water and a pack of peas on my neck ;D) I am going to get my doc to prescribe the O2 and I will go from there. Thanx again all of you for making me and my wife, Rain feel welcome.
Ted

Title: Re: First Time Writer Long Time Sufferer
Post by Georgia on Oct 26^th, 2002, 3:42am

Ted, I would say you have abortives pretty much under control...you have the Imitrex that works for you, and now the O2 and ice to help as well.

I think your next big goal should be to get to a neurologist who is familiar with clusters. Check out the Ouch link on your left, there you will find a list of clsuterhead approved dr's by area. And once you get yourself to a dr that can help you, get on a medication that will either stop your cycle or prevent the headaches from coming....some suggestions; prednisone amd/or verapamil. Check out the medications link to the left.

Please let us know how things work out. Sorry for your pain, but glad you found us.

Peace and love,
Georgia