Hi everyone, hope you get some sleep. I can't, so I decided to finally start checking out this web site and join the forum. I guess I should have done this 5 years ago when I married the devil, or at least seems like I did. I live in a remote, fly in community, with less than 700 people and no doctors, which even makes it harder to controll this thing. I am unable to purchace oxygen because of location, which makes it very inconvenient, I would love to try it.

I am not one to talk or share things about myself, but I am getting close to the end. If someone ever asks , "Whats wrong with you, and I say , Oh I have been up for a few years with headaches, they respond. Oh I get headaches as well, I Could Scream, No You Dont, This Is Different, but they dont understand.  I am a chronic sufferer for 5 years, remissions so few and short, i don't really remember them. I usually have 2-3 level on a scale of 6 or 7 a night, with 2-3 level 9+ a week. We have a doctor  visit our community 3 times a year, so you can imagine how hard it is to get proper medical attention for this. I did take over 5000.00 and flew myselft to a hospital last year for a CAT scan, which proved fine. I have only been able to try Imitrex spray with no success, and Verapamil, with no success. I think my only cure, well we won't go there. Anyways I am alone up here, and am now reaching my darkest moments with these #$%& things. I bang, I rock , I scream, I cry, over and over angain, every night. How is someone supposed to live like this. I guess I found a good place to vent, in my eyes anyways, and hopefully not offend anyone. Anyways enough of about me.

I would just like to know if anyone knows first hand or through research if there are any side effects of the measures we use to controll the pain. Like, can you damage your eye sockit from rubbing too much, or what about Tennis Elbow from rubbing your scalp. I always had long hair, but since this #$%^ happened, I keep myself almost bauld, much easier on the head, but my elbow now feels like it has arthritis in it.

Thanks for listening and God Bless those in the same mess as I.

Bill, You are right, i can't believe how dedicated members are here. The time others take out of their day to answer questions like mine is amazing. The wealth of knowledge, uncomparable. I think I found my new home.

Welders Oxygen I even have in stock, but am unable to get any help regarding it use. When I mention what I want to do with it, no medical proffesional will give me any information, they think I am nuts and refuse to help. From what I am reading my regulator and torch heads won't cut it. No pun intended.

Thanks for the recommendation, and I am still searching this site for answers,

I am able to get the necessary equipment to go along with the oxygen if I knew exactly what to get and how to measure/mix whatever you do with the oxygen.

Thanks again

welcome, im new to this site myself, but when i read your post i could feel your pain, i only suffer in cycles now, so im very fortunant, but i remember whats it was like to go months on end with no relief, and i grew up in a very small town so everyone thought i was just crazy, and when they told me about how they get headaches too, i felt the same way!!!! i wish i could be more helpful to you, but all ive ever tried was the imitrex injections, they work like a miracle for me, but i know you have a lot of obsticles to deal with. i wish you the best of luck, and hope that you find the relief you need

Your isolation screams for you to learn quickly about how to treat yourself. You could spend hours exploring the buttons (left), following the internal links.

Second, now that you are a member, look at the members section and find someone who lives close to you. Might be useful to gain some nearby support, someone to talk to.

Going to list a number of resources for you to buy/read/explore:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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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 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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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)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
===========

Finally, you will surely stay in touch! Ask your questions and mine our collective experience. (I only ask that you keep question list, in any single message, brief [2-3ish]. I've noticed that folks who ask a dozen at a time tend to get few responses.)

I'm new too and I know where you're coming from. I went through years of pain, until someone (not my doctor) said hey you sound like cluster headaches. My biggest saver has been oxygen and when I travel by plane for my job I have the imitrex injection. There's a lot of support here, it can keep you sane to know you're not alone. Hang in there.

Hi and Welcome to Clusterville

  You said you had welder's 02 available. 

  Go to ebay and type in "medical oxygen regulators" . . . I think there are 23 listed.  Most are the type we use on the medical "E" tanks.  There are three that will fit your welding tank.  Two look similar to a welder's regulator (as they have two gauges), and one is a medical regulator with a flo-meter (you've seen in hospitals).  . . important part is that they have a 540 fitting . . . totally different from the "E" tank regulators.

  Then you'll want to acquire a non-rebreather mask (the one with the bag).  Have a fire dept. or EMTs in your community? . . . if so, go tell them of your plight and they'll probably give you one. . . . til you can acquire one of the more effective clustermasks being made available to us now.  I use the Sea-Long and there are at least two others available.

  For right now . . . if you can get a mask local . . . go see them now . . . take them some info . . or have them come here and read our 02 info if they need convincing to part with a $3.00 mask . . . . then come home and attach a small welding tip to your torch . . . the end of the hose will fit snugly over the tip . . . adjust the flow so the bag will inflate in about four seconds (or less).  The non-rebreather mask the EMTs will have has exhalation ports on either side of the mask . . .remove the rubber valve(s) and tape these holes up.   When you inhale, hold the mask tight to your face, then slightly crack the bottom of the mask for the exhales . . . repeat till he's gone.   

  Hope this helps . . . you really need the 02 . . . a real miracle for most of us.

  Keep reading . . . keep asking.

    Be Safe,   PFDANs


      Richard

Welcome to the family.

In my twenties I worked at a well paying job in remote fly-in communities and suffered from clusters....I quit that wonderful high paying job to be near medical facilities in the city of Toronto....BIG MISTAKE!

The medical system failed me....
You have already been offered excellent O2 advice....there is collectively alot of experience here.

Please stay in touch.

Paul

See if your doc will let you try lithium? I am also chronic for over 5 yrs and the lithium is the only thing so far that has made any difference in the pain. Down from constant K10's to K8's and shorter hit times also. I can only tolerate 450mg a day but it helps allot to me.

Get the welder O2 and you will be rockin!!! Buy your own mask and regulator and you’ll be set for the fight.

Best,

Rolo.

Add; as a bush pilot you should have O2 available through the air port supply service.

I tried shrooms, for the headaches, twice. The first time I never got to feel anything from the schrooms, so i didnt expect anything, the second time I think I reached the level that clusterbusters recommends( 1.5 probably, but no more), never noticed any change though, exept there are more scratches now on my Pink Floyd album.

I know this is only a small thing.
When I have been up against it in the past and still sometimes today when nothing seems to stop the extreme end of the pain, I put 2 or 3 tea towels in the oven on about a 100c. Then when they have heated up  I put them on my face in rotation until the pain subsides. It's hard to do it when the pain is at it's highest but I keep moving around while I am doing it and then the rotation is continuous. Be careful not to burn your face though and be safe aware about cloth in the oven . In other words make sure you take them out or switch the thing off if it doesn't help or you have finished using them.

It doesn't break it  but it gives some sense of relief and a little comfort in that lonely place.

Be careful though initially. Heat doesn't work for everyone. If not then cold compress.

Take care, you will get there.

Ellick.