Welcome, and yes, here is a home for support, understanding and a venue where you can vent. Tell us some about yourself. Have you been diagnosed by a headache specialist? What treatments have you found successful or not? What do you mean about your regulators? We'd love to hear more. Blessings. lance

Welcome to the site. There's more CH info here than most Doctors will ever have. Read all you can. Especially the O2 link below.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Be sure to see the pictures. We need 100% O2 for the best CH aborts.

Don

I absolutely hate that someone so young has these headaches.  Welcome to this site and we will all try to help you in whatever way we can.

You are not alone anymore.  We all understand.

Linda

Well I appreciate all the help here. Its amazing how much can be done in such short time. I am currently trying to get 100% O2 but the doc convinced my insurance Concentrators were more reliable and cheap. HA.. I DONT THINKS SO! at 500$ per machine each month. Not to mention tubing. Its insane.Im having a hard time finding a doc to take my situation seriously. In fact it was a pediactric male nurse who first found my symptoms to be CH. so you see why i have problems with moving forward in treatment. and as i mentioned. medicaid Only supplys me 9 Sumatriptan a month. and there gone by the 6th of every month.so its almost pointless. And having no actual support from my relationship or my parents its even tougher. this beast is really starting to tear away my life. Ive lost my last 3 jobs. and its destroying my relationship. and even at that im too young for disability but medicaid runs out in months. So any info on sources of help and support would be greatly appreciated. Thank much guys. gotta cut this short ive been strugglin with a kip4 for about 2 hrs. just about got him tamed. but you never know with this guy.

Your story is why we suggest a headache specialist vs. a general neurologist. If you have this option--

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. 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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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If you need some specifc information, start asking questions. This will sharpen our conversation with you.
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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 better overview articles I've seen. Suggest printing the full length article--link, line above--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]
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See the PDF file, below, for latest evaluation of commonly used meds. This is technical stuff but print it out, give to any doc you see, as use it as a tool to discuss treatment options. Basically, these are the kinds of meds a good doc should be considering for you.

Explore the buttons, left, starting with the OUCH site.
and,

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"

Welcome to the board Aaron. Knowledge is power when it comes to CH. An educated CH'er hurts a whole lot less. We'll help you any way we can.

Joe

Welcome Home Aaron

  So very glad you found us.   Been chronic since 1/01 . . . wife found this site for me 2/02, and like you, was having multiple attacks . . . 6-8 daily, sometimes 3-5 at night . . . this place gave me the info to take to my doc, start a working preventative and get a script for 02.

  DO look into the D3 regimen . . . seems to be greatly reducing my attacks and those that I do get are easily killed with a combination of Rock Star orange energy drink, plus 02 . . . and if not killed quickly, I'll add an icepack to finish him well before I have to dance.

  Read. read, read  . . . ask any questions you may have.  The answers you get here come from folks who TRULY know your pain.

    Be Safe,    PFDANs

      Richard

Propanalol has been around for awhile but there's a reason verapamil is the front line abortive, with lithium and others running closely behind. Glad you still have the O2. You've tried the energy drink/O2 combo, right? And the melatonin? And the D3 regimen? Actually, though, as was hinted at previously, it sounds like it's time for a new doc. I'm assuming this is the same one who diagnosed you as having CHs to begin with? If so, then why the changes? blessings. lance

Seriously!!, consider finding a headache specialist.

The Prop just given you is 30+ years out of date for Cluster.

Any doc you see should be working from the group of meds listed in the PDF file, below.

While it wil take some time to explore, look at these groups which offer help with medication $.

On this site, follow this chain:
Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources

Welcome to the one place where people actually get it.
I haven't been suffering quite as long as you, I had my first hit when I was in ninth grade.  I know what it is like to deal with peoples bullshit when it comes to being young with an obscure medical condition.  My advice to you?  Fight like hell.  Kick, bite, bear teeth.  Do what you have to.  If you are restricted to one doctor, pester him until he does something.  He will hate you for it. oh the f%#k well.  I know from
experience that people will eventually do almost anything to
get somebody out of their face if they are bugged enough. 
And even if he won't help you, he will eventually refer you to
somebody else.  Gather information, educate yourself, and go
in armed to the teeth.  In the mean time, find as many
possible treatments for yourself that don't requiere a doctors
visit.  Melatonin can stop the night hits, energy drinks can
abort attacks if you down them fast enough at the first sign
of attack.  If you don't handle carbonation well, get sugar free
energy drinks and pour them into an empty bottle.  Shake it up, let it settle, and open it to release the co2.  Once it is flat you can put it in the fridge and have it ready for your next attack.  I do this often, without sugar they keep for quite a while, even for a couple of days in a hot desert.  Any mix of tuarine and caffiene, I even take tuarine and caffeine tablets when I cannot carry bottles on my kit.  Try to get welding oxygen, just tell them you want to use it to keep fish alive if they ask, just dont tell them it is for human consumption.  Look in the forum for treatments for the thread titled "123 days pain free and I think I know why".  While I had access to it, the treatment regime presented there by Batch helped immensely, and I will be starting it back ip when I get back home.  Myself and a few others here are often able to abort an attack by breaking into an all out sprint. 
Don't worry too much if you find yourself standing alone, because even when you are alone, you will be found standing.  That knowledge alone has kept me alive through a lot of shit.   Peace, but until then, fight.