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        New Message Board Archives >> 2002 Posts >> Headaches for years...
        
(Message started by: lifeless on Nov 4^th, 2002, 1:11am)

Title: Headaches for years...
Post by lifeless on Nov 4^th, 2002, 1:11am

My name is Sherri. I am 32yrs old. I am married and have to sons ages 8 and 11. I have been having these cluster headaches for about 9 yrs. I have been on every medicine made I think. Nothing is working (so far). Besides the headaches, I have been loosing me eye sight from time to time in my left eye where a lot of the pain is. My doctor just put me on cortgard ( a blood pressure med.) I have only beenon it for 4 days and O2 for the same amount. So far nothing. But, the medical supply people gave me a regular mask on the O2. I just read about the other mask, I should me using. Everyone I know believes that migraines are worst than cluster's. I told them they are nuts. They all respond to medicine and one of them just goes to sleep and the pain is gone. They make me feel ALL alone. My headache will last for weeks and months at a time. Why is it that many people and dr's have no clue on cluster's??

Title: Re: Headaches for years...
Post by lifeless on Nov 4^th, 2002, 1:27am

Is there a medicine that is more responsive to the headaches than any other?

Title: Re: Headaches for years...
Post by Mark C on Nov 4^th, 2002, 1:53am

Welcome Sherri,
Sorry you are getting kicked in the head. This is a good place to find others with boot prints on their head also, and what we do about it.
I suggest you surf the links here and on the OUCH site to bring your CH knowledge up to par. Print this stuff out and take with you to your Dr. Unfortunatly most Dr's dont have a clue about CH, but with your help yours can.
Educate yourself, it gives you power. You are not alone and you dont have to hurt always, some of this stuff works for a lot of us.
Good luck and let us know how you do.
Thanks,
Mark

http://www.emedicine.com/emerg/topic229.htm

Title: Re: Headaches for years...
Post by David Shea on Nov 4^th, 2002, 4:07am

Hi Sherri- Welcome to the chat, Albeit a shitty subject.
Mark has given you the best advice you will find.
But, I wanted to ask. Did you mean you will get A- HA
that will last weeks, Or are you getting cluster's of HA's
lasting weeks or months. CH is still not widely know to
the medicial field. Maybe because the medicial field does
not have the answers. CH.com is trying to change that
thru the media and puplic. And is top piority in the fight
against this curse. I cannot help you with the Med, ??
But there are many expert's here who can.
Hope you are feeling better. If you are wondering what
i'm doing typeing this at 3:30 in the morning, My dance
with the beast has just ended.
There is a reserch center in Houston studing CH, iF YOU
are close maybe you can contact them.
Hope your felling better.
David

Title: Re: Headaches for years...
Post by OneEyeBlind on Nov 4^th, 2002, 5:25am

Welcome to the board. Imitrex shots and O2 are my lifeline when the beast is attaching. You might want to give the imitrex a shot and see if it works for you. Also verapamil is another blood pressure med that is used by a lot of people on this board as a preventative. Check that out with your doc. Read, Read, Read and then go educate your doctor !!! Have you been to a neuro to rule out any other diseases that might have similar symptoms. Have you had an MRI ? Have you tried anything other than the O2? Let us know. The more we know about you the better we might be able to help.

Title: Re: Headaches for years...
Post by RevDeFord on Nov 4^th, 2002, 6:57am

Some of the things in your post I think need to be addressed.

#1 - Do you have a headache that last months as I read in your post?

#2 - Have you been to an eye doctor?

My father in law had glaucoma and the pain he described was very similar to what I feel with clusters. Since you say that you are losing your eyesight on that side, I would have the pressure checked in your eye.

Sorry to hear you are having such headaches. You are right.....as a meegraine sufferer, and a cluster sufferer, there is no comparison. Clusters hurt 10 times more.....fortunately it is not a continuous pain for hours and days at a time for me. I couldn't take it if it were.

Title: Re: Headaches for years...
Post by domm on Nov 4^th, 2002, 5:47pm

lifeless - welcome. I hope you've clicked through this site and the OUCH wbsite (both buttons to the left). Have you taken the quiz? A correct diagnosis is the first step to relief and there are several other conditions that seem to mimic CHs. Get to a good neuro. There are quite a few docs listed on the OUCH website. I'm sure you can find one close.
Imitrex, Oxygen and calcium channel blockers are the first line of defense for CHs.
Good luck in finding what works for you
domm

Title: Re: Headaches for years...
Post by Charlie on Nov 4^th, 2002, 6:15pm

Welcome Sherri. We've all been there. The other members here are good with meds. Keep asking and reading. You'll get lots of email and replies: Here are two things from me: The first is a link to a letter which you can print that does a great job in explaining to others what this horror is like. It's worth looking at:

The second is a technique that helped me.

http://www.ouch-uk.org/ch/note_colleagues.cfm

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: Headaches for years...
Post by eyes_afire on Nov 4^th, 2002, 6:30pm

Hi Lifeless, I'm sorry you're in pain. After reading your post, I would strongly recommend that you see a neurologist or opthamologist ASAP because:

1. Losing eyesight is not a symptom of CH.
2. Your headaches are lasting for weeks or months.
3. Meds are not giving you any relief.

I'm not saying that you don't have CH, because I don't know your whole situation, but when you said that you lose your eyesight from time to time, that scared the crap out of me. You probably should have a specialist check that out ASAP. Don't delay.

Title: [img]URL[/img][glow=red,Re: Headaches for years...
Post by lifeless on Nov 4^th, 2002, 11:32pm

This is lifeless. I went to the two different eye doctors in the past. They both say "Your eye is fine". I went to a neuro. He said, hmmmmmmm take these pills. Elavil and Tegrotol. Nothing, except making me sooooo sleepy. I am on O2 now. With the right mask and regulator.(12) They had me with a tank with a regulator going has high as 6 and it wasn't working. I kinda have a small break with the headache right now so I haven't used the O2. I read somewhere on the net that a benign tumor in the blood vessel that can trigger clusters. Has anyone ever heard of that? I had an MRI about 2 1/2 yrs. ago and nothing on it. Thank you all for the advice you sent. It means a lot to me.

Title: Re: Headaches for years...
Post by Drk^Angel on Nov 5^th, 2002, 11:33am

Welcome to the board! Sorry that the beast is using an industrial sized, rusty branding iron on your cranium. Good luck!

PFDAN........................ Drk^Angel