hello
I am so relieved to have found this site.I am(or was) a healthy and relatively happy 37 year old man. I was working out 5-6 times a week but thats all changed now that I have a "beast" of my very own. I have been basically house bound for the last eight weeks. I am either in excruciating pain or waiting for it to start again.I have been prescribed alot of drugs in the last eight weeks(verapimil,compazine Imitrex and some others I cant really remember)The imitrex works to take the pain away but after 6 hours I feel the Beast awakening  and It starts all over again. I am at the point where I just don't know what to do. I started to think I had something wrong inside my head but a ct scan ruled that out and I was tested for lymes disease which was negative so now I'm waiting to see a neurologist. I am at the end of my rope I haven't slept in what seems like weeks and weeks I feel like I'm going crazy. I am not usually an emotional person but lately I just start crying for no good reason.I feel like my life is over and I want to run out into traffic. I am also not a religious person but I now find myself praying to god often when the beast is with me it doesn't usually help
This illness or sickness or whatever the hell it is is taking its toll on my relationship with my wife and 6 month old son I. She just stands by helplessly and watches me turn into the shell of the person I used to be.I know these headaches are cyclical and are supposed to end but I just don't beleive it.I'm relieved to know I'm not alone (I don't mean I'm relieved to know that others  are suffering like I am just glad that I have found an outlet to turn to in the middle of the night when I feel like I'm dying) I dont know what else to say so I'll just say thanks for now

Too many people here have had bad experiences with neurologists who have little skill in treating Cluster. First, insure that you have selected a competent doc.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Start educating yourself; it's a major source of self-care. This article is excellent as a starting point. (Link shown to get the complete article.)
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best overview articles I've seen. Suggest printing the full length article if you are serious about keeping a
good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

One thing you didn't mention... Have you tried O2?  That's the first choice of most of us here.... 15-25 liters a minute with a NON-REBREATER mask. If your neuro didn't put you on that first thing - get a new neuro!!!!!  That's the first line of defense....

Also melatonin at night before bed.... start with 3-5mg and work up to 15-20mg. It helps you get thru the REM sleep (where the CH hits) and lets you get some rest at night (most of the time).

Also have you tried RED BULL (or another energy drink with caffeine and taurine - at least 1000mg of taurine -read the lable). It will sometimes abort a hit if you get to it when it starts. I use it with the O2 and it works most of the time.

Be careful with pain meds - they will cause rebound headaches and really don't help anyhow. How much verap are you taking. Most have to take a large dose for it to do any good.

Ice packs (or heat - your choice) help some. I keep frozen peas in the freezer - they fit wherever I need them and are about the easiest ice pack I know of.

Stick around, ask questions, read -- we're all here to help... and you're not alone anymore.

Hugs BD

I am a christian and I pray and pray, yet this thing still comes. so instead of praying for myself , i will pray for you.
the good people on this site will give you great information most of which works for me. what i will add is the please arm youself with knoweldge, support, and a good dr (can be hard to find). this will help reduce the anxiety and fear.

you are not alone.
maybe have your wife read here too, so she can get some info and support for her.

Dear Worst Pain Ever:

I feel your anguish.  I, too, am a Christian, and I too pray.  God is good, but never promised us a pain-free life.  Not wanting to get into a theological discussion in an open forum, you can PM me anytime you like.  If you would like to talk to someone with 21 years experience with the "beast" PM me and give me your number -- I will call you!

I have a few other things to say, off the bat.  Bob Johnson has provided EXCELLENT background material for you and your wife to read.  The OUCH websiteMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or provides additional material to read and learn.

Knowledge is a GREAT thing.

Secondly, there are 2 AWFUL life wasters that most of us (and me certainly) went through.  Please avoid these if you possibly can.  Searching for the "Holy Grail" of a "cure" for these headaches -- It lead me to seek out the "experts in the field" of Cluster Headaches.  I traveled farther then most, going to 2 countries outside the USA (but hey, I'm stubborn!).  The other life waster has been mentioned -- waiting/anticipating/fearing the next Cluster Headache.

The main thing that I try to do is to live my life to the fullest possible between hits.  I try to have my "tools" (in my case, injectable Imitrex and Oxygen) with me or near by at all times, and just go out and live life.

Please seriously consider giving me a call, as speaking with someone who's got a similar problem can be a tremendous experience.

If not me, there is a Family Services Support Team -- Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .  I have NOT taken advantage of this service, HOWEVER, I know these people through contact with them for nearly 1 1/2 years on this forum and they feel like old friends and have wonderful advice.

Lastly, read, learn, ask questions, rant, and you'll do well.  It's scary to go through this, but you can and will thrive as a father, husband, and person.

Wishing you well,

Ray

Welcome to the board, you're in a dark place right now, one we've all been in. There is no cure yet for these things but they can be manages. It just takes a lot of patience, which is hard to come by when your head is exploding.

You need to get the oxygen prescribed, that should be your first line of defense. I can kill an attack in less then 6 minutes using the oxygen.

You need to get on a good preventative medication, one that will slow down the attacks a little. The more common ones are the verapamil, lithium and topomax. See if your GP can put you on a 2 week prednisone taper to get you some immediate relief. Most of us find prednisone will offer a temporary reprieve from the beast while we wait for our preventataive medication to take effect. Not something you should stay on long term cuz it beats up yourt body but you sound like you need a "rest and recovery period" in a really bad way.

They do end, WE really do understand, hang in there.

Guiseppi

(edited for spelling..as usual!)