Hello everyone!  I'm a cluster headache sufferer and have been one for years.  I'm sure there are many people here like myself who were misdiagnosed and a guinea pig for different medicines before finally being labeled with cluster headaches.

I'm a stay at home mom of four. I have not had insurance for years and decided today to start researching some options for treatment that I could try, rather than keep on suffering for weeks on end with these awful headaches, which is what I've been doing. That's when I found this group! I'm interested in getting to know people who deal with this as well. It's so hard when no when around you understands your pain.  I'm going to start trying the capsacin pills and I have located an oxygen bar inside a local spa around here I want to try out. If anyone here has tried either of these methods for their headaches, I would love to hear if it has helped.  I look forward to getting to know you all!

welcome mom, there is a HUGE amount of info here on ALL the things you  have mentioned. You simply have to read, read, read, then,,,,,, read some more. Its All here. Personally, I dont think the O2 bar is  gonna do you any good at all,,, you just cant get enough flow there. you need at LEAST 15 LPM.   Rest assured, EVERYONE here understands!!!!!!!!!!! you are now among friends. welcome, and I hope you soon find a weapon that helps you fight the pain!!!!!  Good luck.    Tuck

Welcome to Clusterville.

Tuck is right --- You need O2 with a regulator that goes to at LEAST 15 liters per minute (25 liters is better) and a NON REBREATHER mask (very important). We have "resident" O2 experts that can explain about that better than I can, so I'll leave it to them.

Red Bull (or other energy drinks with caffeine and at LEAST 1000mg of taurine in it) at the first sign of CH is good if chugged (I use it along with the O2).

Melatonin at night before bed helps get thru the night and for a lot of us eliminates the night hits (most of the time).

Ice packs (frozen peas works great for ice packs) on the neck or head during a hit helps a lot of us (hot showers help others).

I understand about no insurance (haven't had any in years), but you need a good doctor and neuro. That's something I think everyone on this site will tell you.

Again welcome to the family. We're here to help....

Hugs BD

Ice packs and 02 save me every time.  Unfortunately, the others here are right.  I'm not sure an 02 bar will really help you out.  We need such a high flow rate...  I tried 7LPM once, and it did absolutely nothing for me.  I know some doctors don't like to prescribe over 5LPM, so I'm sure that the 02 bar will be less than what we would want.

However, that doesn't mean you don't have weapons to fight with.  There's a ton of info around here, and everyone is more than willing to help out however they can.

Glad you're here, sorry you have to be.

I have to "ditto" what everyone has already said about the 02 bar.  The last time I was in an airport I saw one of those, and laughed.  The flow rate isn't remotely high enough, and it cost(at that time) 10.00 for 10 mins.

I spend 10.00 for an entire e-tank of 02.  

If you have a fire station near you...they will let you use their tanks.  Hard to do that in the middle of the night but try it if you get hit during the day.  It will gicve you a good idea of how well 02 works and then you can ask your primary care Dr. for a script that you can take to a medical supply place.

Linda

Suggest you download and print the full article. It's a good introduction of CH.
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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 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]

Welcome, im coach bill. I have had clusters since i was 23 now 40. I found this site about 7 months ago and it has been so amazing in terms of how much i learned from the others here. Example, i never even knew about oxygen for all these years till i found this site, now i can beat the beast down in 5 minutes!!. It took a few times and alot of posts before i got the right stuff and info to use it properly, just think of how many headaches i could have aborted with 02 instead of 8 advil, or 6 whatevers, or imetrex, yea i got that to.. But there is no doubt OXYGEN is my 1st line of defence against cluster headaches and my #1 advise tip to others. As in times past all my meds will probly expire again and i will be without the 8 advil, 6 whatevers or imetrex, but i will never ever be without my 02 again. I hope you feel better soon. Talk to your doctor about oxygen for the treatment of cluster headaches. Coach Bill

no insurance=welders oxygen

Just don;t tell then what you are using it for.  Go to a welding supply company.  You won't be sorry.  Get the big ole green tank for about $150 filled.  Can refill it each time for about $30

Wish you luck.  Read learn and ask questions.