Hi names Jarrod I have just found out i had ch a few days ago from a doctor who finally knew what he was talking about. I am 21 and lived with ch for as long as i can remember. After the doctor I found this website and read some of your descriptions and broke down instantly at work just at thought that i was not alone, crazy, or making it up. I was diagnosed with Migraines and severe depression for more than ten years. every time my head hurt the doc would say it was a migraine every time something else hurt i was depressed. I'm just glad i found this site i have had way to many missed party's and holidays and looking to start life over with my daughter. I think i am going to be fine now i have a new outlook on life recently and I would like to thank every one for being open on this site it helped me understand what is happening to me

NOw we just need to make sure you're on the right track for treatment. Does the doctor have you on a good prevent? A med you take daily to reduce number and intensity of your hits...and does he have you on an effective abortive? Hopefully you're already using oxygen, if not, read the oxygen info on the left and ask your doc about it. 31 years of the beast and oxygen is still the most effective abortive for me. I can stop an attack in 6-8 minutes using just 02.

Dang glad you got the diagnosis, that's a HUGE first step, and equally glad you found us.

Joe

The doc only put me on O2 and I am going to get that script filled during my lunch here so have not tried that yet. He never mentioned any thing about preventives I don't know if i should go to more specialized doctor or not (get another opinion). My doc just gave me pamphlets a O2 script and said good luck.

Oy VAY!!

If you like this doctor, and he is willing to work with you, he needs LOTS of training!  If not, get another doctor, as this one is severely lacking!  I give him credit, though, as he gave you the script for oxygen.

What flow rate did he prescribe?  How about the mask type?  Those are two critical points in effective oxygen therapy!

You need to try abortive medications that should lower or eliminate the hits (attacks), in both frequency and severity.

Chuck

The flow rate is 7 liters and the mask nothing specific said about that I think she said it was a standard re-breather. I am only 21 still a little scary to even have a O2 tank.

Don't be afraid of the oxygen!  It is a lot safer than a lot of people think it is.  Use a little common sense, and you will be fine.

The flow rate that was prescribed MIGHT work for you , but most of us need a higher flow rate.  We say that the minimum flow rate should be 15LPM.  A higher rate is sometimes required by some people.  Even those who have gotten results at 8 or 15LPM, are shocked at how much MORE effective 25LPM is!  Many abort hits in as little as three minutes!

A re-breather mask will not work very well.  It needs to be a non-rebreather mask.  And then, the one that they usually give you, is only marginally effective.  If you want the best mask, go to the link to the CH.com store at the left side of your screen, and order an O2PTIMASK^TM.  This is the best you will find!  WELL worth the money it costs!

If you want to talk to me via skype, or the phone, just let me know, and I would be glad to talk to you.  My skype name is ClusterChuck, and, if you want, I can PM you my phone number, or you can send me yours, as I have unlimited USA long distance calling.

Chuck

If you want a headache doc, start here:

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
==================
Whether you stick with the present doc or not, print the entire article (link line 2) and start your personal learning. Then explore the buttons (left) starting with OUCH.
-----

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better 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]
-----Also see, for current treatments:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Thanks for all the information more comfortable about it now. i guess i just need to try it next time i get one which should be any day now. then i might have questions. had one last week and one yesterday. they start slow till they are every day for week and then taper back off.

Until you get a prevent - get some RED BULL (or another energy drink with lots of caffeine and at LEAST 1000mg of TAURINE in it) Chug a lug it at the first sign of a CH. It will sometimes abort the demon.

At night before bed take Melatonin (6-18mg). It helps a lot of us NOT have night hits.

And LISTEN to Chuck about the O2 - Any questions about it CALL or PM him. He made a believer out of me with his mask at convention last year. Stopped a hit for me in 3 minutes (Batch was timing it). I went home with one of those (it was that or take Chuck home with me! ;)). Chuck and Batch are our O2 gurus around here.

Welcome to Clusterville. The people here are not totally nutz (except for a few who will remain nameless :)). We've all been right where you are and when we say we "understand" you can bet we do. Ask all the questions you want, vent, gripe, whatever you need - we're here for ya....

Hugs BD :-*