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(Message started by: svelletta on Jun 17^th, 2003, 3:46pm)

Title: New to this board
Post by svelletta on Jun 17^th, 2003, 3:46pm

???New to this site and this message board. Husband has CH for past 3-4 years. Has tried so many things. Will be admitted to hospital this week for I.V. DHE, Lithium, and Melatonin. Anyone familiar with the course of treatmment? All replies would be apprecitated.

Title: Re: New to this board
Post by gene on Jun 17^th, 2003, 3:53pm

Not at all familiar, but welcome and good luck.
Is he chronic? what about imitrex etc.?
Gene

Title: Re: New to this board
Post by svelletta on Jun 17^th, 2003, 4:06pm

Yes, chronic would be putting it mildly. He's tried everything. Been to neurologist after neurologist, no real reflief. We live in OKC and are now seeing a Dr. in Dallas. He is the first to suggest any type of aggressive or different treatment. We are really hopeful.

Title: Re: New to this board
Post by gene on Jun 17^th, 2003, 4:08pm

What do you mean putting it mildly? If you feel like it I would be interested in his history. Cycle length attacks per cycle etc.
Gene

Title: Re: New to this board
Post by Kenzie60 on Jun 17^th, 2003, 4:16pm

I was in the hospital at the end of April and the begining of May on IV DHE. Nothing else worked for me. The DHE was a god send. It stopped my cycle and I have just had minor shadows since. I was not on Lithum and Melaton. I am on 480mg of Verapamil and 100mg of Topamax and 40mg of Elavil. This seems to work. Good luck to your husband. Let us know how it works out.

Roseanne

Title: Re: New to this board
Post by svelletta on Jun 17^th, 2003, 4:20pm

Thanks for your reply. Hope you continued releif. We are hoping for the best.

Title: Re: New to this board
Post by svelletta on Jun 17^th, 2003, 4:21pm

Sorry for the spelling error. Third time is the charm. Hope you continue to have relief.

Title: Re: New to this board
Post by Mark C on Jun 17^th, 2003, 4:36pm

WELCOME

Look Here. (http://www.clusterheadaches.org/library/general/index.htm)

Title: Re: New to this board
Post by svelletta on Jun 17^th, 2003, 4:38pm

Gene-thanks for your interest. Would take me a day or two to give the full history. Started about 3-4 years ago. The onset on one side of head, pain so severe he passed out at work. Trips to the E.R. NUMEROUS medications, MRI, CAT scans, EEG, you name it, he's had all the test. Been to neurolgist, ENT docs, family physcian, etc. Dr. says that he does not have the typical CH, because they do not come in "clusters" with periods of relief they have been ongoing over the years. The only thing that breaks the cycle is steroids. We all know you can't stay on those forever. He does have a day or two, sometimes 3 with no headache, but no long term "headache free" periods. Often has the classic waking from sleep with the pounding headache. We have tried oxygen, pain medication, etc. Nothing works. Found this Dr. in Dallas and he is the first to suggest this type of treatment. The one thing that makes us so hopeful is that my father also suffered from these headaches back in the 60's. He spent 6 months in the hospital at Lackland AFB in San Antonio, Tx. Came home on the weekends. They called them "Horton Headaches" back then. Anyway, after 6 months of monitoring and having injections of ergotamine he was cured. Never experienced the headaches again. So, apparently this is not a new drug. His history and that of my husbands are so alike.
My father had them almost daily for 8 years. So, hope I provided you with some history.

Title: Re: New to this board
Post by Karla on Jun 17^th, 2003, 5:15pm

Yes, your husband is definetly chronic. So am I. I have had these headaches for over 5 straight years non stop. Goodluck with the DHE treatment. I have heard good things about melatonin being used. Last year at the OUCH convention we had a speaker who spoke about melatonin in treating cluster headaches. I tried lithium for a few years it reduced the number of headaches I was having and then it lost its effectivness. Hopefully he will have a good report when this is done. Keep us posted.

Title: Re: New to this board
Post by BlackDog on Jun 17^th, 2003, 5:33pm

Just wanted to say hi and wlecome. ;D
Darren

Title: Re: New to this board
Post by katethecelt on Jun 17^th, 2003, 10:52pm

I don't have much to add, but wanted to say Welcome & I hope you find the help you need for your husband soon.

I'm not familiar with the treatment he's getting now.

I take Verapamil, Imitrex, and tried Prednisone. I was able to take Medrol - had an allergic reaction to the Pred. I've been using the water treatment, the method Charlie suggests, ice on my head and such.

Sending prayers to both of you, Kate

Title: Re: New to this board
Post by KingOfPain on Jun 18^th, 2003, 1:23am

Hi, Welcome to Clusterville.

I was admitted to the hospital & I had a three day run of DHE IV's.

Have not had any episodes as bad as I was having since.

Contact this Dr. if you want a caring, compassionate, well versed in CH, Dr.

Oklahoma

Neurological Associates of Tulsa, Inc.
Tulsa, Oklahoma, United States
Contact: Harvey Blumenthal, MD
Lori Neuendorf
Telephone: 918-481-7802
Email: neurotwo@aol.com

Tell him clusterheadaches.com Message Board sent you. ;)

Good luck.

KingOfPain

Title: Re: New to this board
Post by Charlie on Jun 18^th, 2003, 6:46am

Welcome to our ward and please stick around. We like hearing histories and all that goes with this horror. You'll find some good things here to help you cope with this thing as well. Here is the technique I used very successfully and others as well. It costs nothing but a little work, and it can't hurt ya:

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 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. Often, 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 but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on 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. Don’t let up until you are sure the attack has ended.

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: New to this board
Post by Mccarke on Jun 18^th, 2003, 7:19am

WELCOME WELCOME WELCOME

Dihydroergotamine
(DHE) rarely fails to about the episode within 5 minutes
I have a friend here in austin texas thats had this treatment and it worked great for him he still has CH but not chronic. There is a lot of info on the net about the drug. GOOD LUCK!!!!!!

Title: Re: New to this board
Post by MarkHW on Jun 18^th, 2003, 7:45am

Welcome!

I'm chronic too... I've had cluster for 15 years been chronic for almost 10.

DHE only stopped my attacks for a few days, but it did give me some relief. Last time I went in they gave me propafol (not sure if that's spelled right). It's actually an anisthetic. They don't know why it works, but it does.... I was cluster free for 10 days and then have only had one every few days since... That was over 2 weeks ago.

Good luck!
Mark