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        New Message Board Archives >> 2003 Posts >> i need help
        
(Message started by: Red23 on Jul 23^rd, 2003, 3:29pm)

Title: i need help
Post by Red23 on Jul 23^rd, 2003, 3:29pm

Hi everyone. My name is danielle (23) and i am lucky peron who recently started to get cluster migranes. 4 am, like clockwork. it's taking over my life, i am getting married soon, going to nursing school & working full time. I am a zombie. Lack of sleep has made me crazy. This is my first time on any type of migrane website & i am really in need of someone who understands my pain. My fiance is grea, but really can not understand what i am going thru.

anyone out there?? please help.

Title: Re: i need help
Post by ave on Jul 23^rd, 2003, 3:50pm

Danielle, have you done the cluster quiz? (look under the buttons on the left).

If it IS clusters you are suffering from, better get used to calling them clusters. We clusterheads have suffered badly because our headaches have been called migraines and thave been treated as migraines. So we eh, dislike migraines, to say it gently.

Maybe your doctor calls them so? Then he might not be very knowledgeable about your condition.

Tell us more about yourself. If you want our help, tell us how your attacks come on, how they feel, what meds you have tried.

Read everything you find on this board and visit the OUCH site (one of the links) for more information on med-free treatments.

If your symptoms do not point to clusters, this is not the site for you and our information will not help you. Try other sites, i.e. headachesupportgroups.com

good luck

Title: Re: i need help
Post by Georgia on Jul 23^rd, 2003, 3:53pm

Welcome home, girl. I am truly sorry for your pain. Everyone here understands exactly what you are going through. We will do our best to help you.

There is a lot of misinformation and uninformed people and dr's in this world. The best advice I can give you is: Educate yourself - read all the links to the left, use the search engine on this website, read the posts, ask questions...read until you can't possibly read anymore, then read somemore.

The more details you give us, the better. Have you seen a neurologist? What medications have you tried and/or are currently on? Have you tried oxygen?

I am a chronic cluster headache sufferer. I got married on June 20th. I know the pain and I know the stress. You can and will get through this. My husband is also a sufferer, so he knows about CH and most importantly, he understands. Tell your fiance about this site. Ask him to come here - there is a message board (Supporters Corner) made especially for supporters of CH'ers. If he won't come here - print out things for him to read. Help him to understand, tell him what you need of him, show him how to not feel so completely helpless.

You aren't alone in this.

Peace and love,
Georgia

Title: Re: i need help
Post by Hooter on Jul 23^rd, 2003, 4:03pm

Danielle

Hello!

I get cluster headaches and migraines and a severe migraine can mimic a cluster headache very closely indeed.

Doing the quiz should clarify a few things r.e. what you may be suffering from and is your best first thing to do.

It might be worth letting us know exactly how the headaches are affecting you, timing, length, frequency etc and what you have tried to treat them. You can do this by private message if you prefer.

We can then suggest some things to talk to your Doctor about. I'm afraid that even though you have been told is "cluster migraines", this is a very outdated term that clued up Doctors don't use.

Lets pray it is migraine as they are much easier beasts to deal with!

Hooter

Title: Re: i need help
Post by Charlie on Jul 23^rd, 2003, 4:44pm

Sorry you had reason to find us but if you have this horror (headaches that wake you out of a sound sleep is an indication) at least you're among people who know exactly what you're going through.

Here is a link to Simon's letter that you may want to print out for friends and family. It will help others to understand these attacks are horribly different.

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

Charlie

Title: Re: i need help
Post by cootie on Jul 23^rd, 2003, 5:11pm

Hello Red23......what kind of meds are you given for your head......you mite want to check around with docs and be suprised how many GP's mite know alot about CH and be able to help diagnose you if it is that or meegraines. We found an internalist doc that knew quite a bit but is also willing to learn more and shows alot of interest. Good luck to ya. Pam that had BIG fun at the convention and can't get it outa her mind ! :D

Title: Re: i need help
Post by red13 on Jul 23^rd, 2003, 6:06pm

Hi everyone. First of all i want to say thank you all for responding so fast before. I guess i dis not give as much info as I should have, so here i go. Last august i woke up with a terrible pain above my right eye. It lasted 4 days until i took myself to the hospital & they pumped me with morphine for 6 hours. They diagnosed me right there with a CH. They came about every 3 months & lasted anywhere from 4 days to 3 week, getting them around 2 times a day always around the same time of day (4 am & 2 pm). I have been on zomig but don't like taking it that often because the side effects are pretty nasty - i get tightness in my chest & it feels like im having a heart attack. I have been 2 three doctors & they dismiss it, give me another presription for zomig & a sleeping aid & send me on my way. The only relief i have found is pressing into my eye socket or putting a frozen washcloth on my face. I have resorted to banging my head against the wall on occasion. I am only 23 and can't imagine living with this much longer. My finace read what you guys wrote after i posted this afternoon & for the really was very intrested in learning how to help me. My question is, what have other people tried & how it has helped. I have been thinking on going the holistic route. I am right in the middle of a cluster period & need some advise for tomorrow mornings wake up call at 4am. I really do appreciate the feedback, nobody i am close too suffers like this so it's nice to know you know what i am feeling.

Danielle

Title: and Re: i need help
Post by FrankF on Jul 23^rd, 2003, 7:51pm

Were you Red23 and now Red13? And email address is different too. Did you forget your login password and have to register again? I never remember passwords so I always check the "Remember me" box.

Title: Re: i need help
Post by Charlie on Jul 23^rd, 2003, 8:08pm

Hi again. This is a rewrite in progress of a technique that helped saved what little sanity I have left. Give it a try:
Dr. Wright’s Circulatory Technique

The following is not meditation, relaxation, or anything employing psychic ability. It is entirely physical and takes some serious concentration.

This technique involves concentrating on trying to direct a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” This intense concentration on circulation to an arm and hand will result in a reddening and warming. It takes some practice but with a little work, you will be able to feel this “push” and it is easier to experiment between attacks. Try to think of it as filling your arm and hand with redirected blood.

The neurologist said that by treating cluster headache attacks as a vascular problem, it allows the use of this technique to shorten them, sometimes dramatically. The difficult part is that it has to be done without interruption through the pain. You cannot let up and expect results. With hard work, every now and then, it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction on the use this method. The doctor, while holding his arm at his side, showed me that he could slightly increase his arm circulation. After several attempts, I was able to repeat this procedure and I have had about a 75% success rate shortening these attacks. While this does not always work, once I had some success dealing with this beast, I always used it as I had nothing to lose but pain.

Some of what I have described, I have drawn from my own experience, which I believe is helpful. It is not a miracle but it greatly helped me deal with intense cluster headache pain. It can be a bit exhausting but a 75% success rate was good enough for me as a cluster headache sufferer will do just about anything to end the pain.

Just what exactly what this “push,“ does is not known to me but perhaps some mechanism is triggered. Whatever it is at least indirectly kills the pain. My 20 minute attacks were often reduced to 10 minutes.

T his technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. At least this method give us a fighting chance.

I wish you the best of luck fighting this demon.

Charlie Strand