YES!! The time has finally come. I have found aa place where i know i am not the only sufferer/ My name is aaron and i am 19 yrs old. I have been suffering from chronic CH for about 10 years and counting. i used to think god just really hated me. enough to not kill me. The pain is unbelievable (literlly on some occasions.)my family and friends have no idea of what i deal with every day. 6-8 times daily. i too am starting to feel the pressure of inconvience to others. not only does my pain interfere, but now my oxygen regulators are just as obnoxious as my ch. i hope to find this place esy to mingle into and exchnge how many of you are couping. its an incredible feeling to finally have some sort of relief center. i dont know wht i would do if something happened to my only connection to understanding Here. thank you all for letting me havethe chnce to relif my emotional stress.

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

Thank you. Well yes i was diagnosed with CH about 7 months ago by my neurologist. I had been fighting these aches for some time. Ive had numerous CT scans and Tests done. all resuling in NOTHING. absolutley nothing. DOC SAID ITS JUST SOMETHIN I HAVE TO PUT UP WITH. within the last year or so theve become dramatically increased in pain. i suffer from 3-8 per day. if im lucky...I think my first headache occured mid day at  age 8. i was in a dycare at the time. the teachers thought i was losing my mind. they called police. and through the years my mom had tried calling it a phsyciatric problem. due to me having had PTSD since age 4 due to severe emotional and physical truama. ive done therapy and all the good bull spit. my adoptive father dis-owned me saying i was crying for attention i didnt deserve. But now tht ive finally been diagnosed. they are Only  just beginning to understand the pain.even then its not nearly close enough. Ive started Oxygen regulaters ( or concentrators). 2 very loud machines that i must have running 8-10 hrs EVErY night. they concentrte air rround me to about 85% O2. the system seems to help periodically. If i catch a shadow in time and begin O2 i can abort usually 1 of every 4 headaches, WHICH IS RECORD STANDINGS in my book :). im also taking sumatriptn. but unfortunatly medicid only pays for 9 ea. month and knowing im getting ready to turn 20 yrs. my medicaid is soon to be over. SO HERE I AM.

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.

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

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

Don

The link Skyhawk gave you is important to share with your doc. You don't need the concentrators, rather pure oxygen. Will make a difference in your abort time, not to mention cost.  good luck.

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

Wow up 'til now you've been dealt a truly lousy hand.

But landing here automatically deals you a royal flush, because there's so much info and advice on how many of us have found significant relief, something that your (typically) LOUSY doctor clearly isn't going to bother himself to learn about.

The high flow 100% O2 is much more effective than O2 concentrators, and that's just for starters.

IMO Today you really oughta start on the D3 anti inflammatory regimen described here:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
which appears to have shut down the attacks for some CH'ers, and is just good for you in any case.

Also there's melatonin 9 to 18 mg before bed, which will prevent the night hits for some of us.

Lots more stuff we'll talk about that will also be worth seriously considering.

Keep us apprised of what you're doing and how it's going, and let's keep at it with the goal of finally getting you some pain free time.

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.

Well now that we've firmly established that the vast majority of doctors are complete a-holes when it comes to CH, one alternative that many here employ is to just get their O2 at a welding supply place without prescription. Way cheaper than that BS concentrator the doc is trying to limit you to.

And assuming your sumatriptan are injection form, you could potentially get 3x as many aborts from that paltry sum they allot you by following this imitrex tip:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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. 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. 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
====
If you need some specifc information, start asking questions. This will sharpen our conversation with you.
==

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--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]
=====
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.

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

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

---

Welcome aboard Aaron and I wish you didn't have to be here.  My son, Alex, also 19, suffers with CH as well.  I'm chronic, and he's episodic.  Fortunately he didn't have to go through your nightmare regarding diagnosis and finding reliable treatment. 

He only uses O2 to abort his attacks.  He can abort an attack in about 8 min. by breathing 100% O2 from a non-rebreather mask (he uses the Optimask sold here on the ch.com store from Life Gas) and typically between 15 - 20 lpm flow rate depending on the level of attack.

I think having to deal with these as a young man of 19 is a terribly difficult burden to bear, but having the support of this community will allow you to know your disorder inside and out and educate those around you so that you can make the best of your life. 

Hopefully things will start to improve dramatically for you now that you've gotten some of the info provided by the previous posts :)

Never be afraid to ask for help if you need it or if you have questions about something :)

Cat

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 Aaron,

You are amongst friends. You have def. as was said been dealt a bad hand.

I too can't imagine having these damn things at such a young age. I didn't get my first till I was in my late 30's, been dealing with them for the worst part of 20 years...

Hang in there and try to get high flow Oxygen as was suggested. It's my go to abortive and has been for many years and successfully used by many of us.

Ask questions and read as much here as you can, it's really a very infomative place with many , many years of trial , error and success.

The Beast likes to switch things up quite a bit, as we all know.

All the best,

Baer

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

Thank You all so much for everything youve done to help me better help myself. Unfortunetly my Doc threw a curve ball. He took my Sumatriptan away. He almost took the O2 but after begging and pleading he agreed to let me keep it. Hes now got me on PROPRANOLOL..(WHAT THE F***K!!??)) 80 MG tablets. 3X daily. until otherwise.  so now what. My new doc iss totally turning my CH into Vascular Problems. its plausable but Ive done more than enough testing. and have hade more than too many docs tell me Its not. but its a complete toss up at this point. on one side it may help and in turn help my ptsd..but from what ive heard about PROP doesnt settle with me well.(considering i dont even take asprin) so what to do what to do??

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

Your Doc sounds like an idiot... look for a new one, or tell him to get on that new fangled thing called the Internet and update his knowledge on CH (they love that)... well maybe not that last part... don't want to piss him off while he is all you got.
Actually... print out as much info as you can on O2, from as many sources as you can find, and give it to your doctor. You need to make him question his decisions without insulting him.
It doesn't sound like you have many resources, but if you can find a way get your own O2 equipment (welder's oxygen without prescription) it will help you now and in the future. I purchased my own equipment 30 years ago when I got tired of getting jerked around. There were many times (moving, having to find a new doctor, new job / insurance company, etc.) that I would have been left hanging if I didn't. It is relatively inexpensive compared to sumatriptan and other pharmaceuticals. Do you know any welders? If you do you can try it out for the price of a mask ($5 for a standard re-breather, $27.50 for the O2ptimask on this site). In this world of ignorant doctors and insurance companies that won't provide what you need most, always having a bottle of O2 is a lifesaver.

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

---

Thank you all for the info. Its all helping. But unfortunetly between the 4 docs ive been seeing ALL are Oblivious to the facts. they have there M.D so wh would kno better than tht? lol well the patient of course!!!but they wont admit to it lol. He refuses to change the meds. Prop is here to stay and i dnt like it. Ive done research on it its a bit scary. Considering i do have ptst and anxiety lso its become a hassle. Propranolol in long term use can cause MEMORY LOSS! not to mention my decreased motivation due to it blocking adrenaline an lowering my BP. im in remmision t the moment but waaiting for the attack is killer. and now that the remission is here the docs convinced his treatment is working despite my complaints and concerns. hes now saying all my problems including (CH, H.Pylori,GERD,Severe Diareah and vision troubles) are cused by WEED! :D haha~ive had health issues going on 12 years. ive only smoked for 5.so can some one tell me where hes getting his relevance from? ive given up. Nothing and No one is actually helping. just pointing and judging. and medical servecis are limted to none for me because of the idoit PUEBLO, CO Docs. NEVER CONE HERE FOR TREATMENT. THEY WILL MAKE YOU QUESTION YOUR OWN KNOWLEDGE ABOUT YOUR OWN HEALTH :-/. I kno when im hurt and i kno what i can tol,erate. who are they to tell me otherwise?? >:(

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.