Hi people
My name is Sueanne I am a 46 year old who has been suffering since I was 16. I was diagnosed with Migraines and have used Imitrix for years.( although I never have enough to get through a cycle) :D I have been living in Puerto Vallarta Mexico for the last 6 years and have recently moved backed to the States and am trying to readjust to the U.S.. While in Mexico the Drs there love to prescribe massive amounts of narcotics but they never worked unless it was enough to knock me out.

I have spent more time in the ER then anyone I know. I have had pain so bad that they only way out seems like death. I am a Psychologist and I have thought I was crazy. When I returned to the U.S. ,I had the insurance to see a new neurologist and he is has been practicing for like 3 months at a University Hospital. He recently told me he thought I had CH, so I started to research what that was. I can't believe how accurately this described my pain. Like most of you I have seen 100's of MD's and no one has ever mentioned that.

He has prescribed Oxygen and Imitrex and Morphine. Well, no big revelation the Morphine doesn't really work, the Imitrex helps. But my problem now is I cant don't know how to get the oxygen. I have Medicare . Any suggestions? I am just starting a new cycle and feeling   crazy!

Hi again Sueanne!  Your story is an all too familiar one.

It sounds like you've found a Dr with a clue.  That's a great thing.

Oxygen is my main abortive.  There are a couple of threads on the Medications board which should help you understand what it is, how to get it and how to use it.

Look for:
       Help in getting OXYGEN prescribed
and
       OXYGEN terms explained

Remember, stickied threads are your friend  ;)

The knowledge on this board is 2nd to none.  So read everything and then ask any questions you still have...

-Dennis-

Hi Sueanne glad you found us and sorry you are suffering so.  :'( Batch is our resident O2 expert so hopefully he can offer better advise.  You stated you were on Medicare so I don't know if your query about obtaining O2 pertained to that or getting O2 in general.  I did not see where in the States you are located, but check and see if there is a LifeGas provider in your area.  You could check the internet or maybe the yellow pages.  If not check for other providers of medical gases.  You can obtain with your prescription one of two ways 1. they can deliver the tanks to your home or 2. you can pick up at their location.  Obviously the later is cheaper.  The provider will provide the tanks free to you and you pay for the refills.  You will need a regulator (a minimum of 15lpm, but 25lpm is better) and a non-rebreather mask).  Most likely the O2 distributor will not have a regulator higher than 15lpm.  They will either sell it to you or you can buy it.  You can also buy one from the internet.  Many people here buy them from the internet.  You can buy a good or a cheap non-rebreather mask, but take it from experience, if you can afford it the better ones are worth the money (check our the one I believe shown at OUCH website). How many tanks you need will of course depend on how often you get hit and how long it takes to abort.  With O2 the key for me is to attack at the first sign of a hit coming on and not to wait until the beast is roaring.  The sooner I attack the less time it takes to abort.  Also, if possible try and stay calm (I know easier said than done) because this can keep your CO2 down and help with the O2.  Again, I know if Batch sees this he can dispell anything I have said wrong, but in the meantime I think you can at least start looking for a O2 supplier and ask them about prices, regulators etc.  Most people on the average I think get about 3 hits from an E Tank unless the hits are really bad. I hope this is of some help and here wishing you PF days soon.  Wishbone.

First, educate yourself. Print this whole article.
Second, locate experienced doc.

 
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]
--------------

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.

Hello Sue, welcome to our little village on the edge of sanity.

Great to see you finally are diagnosed properly. This is really important, as I and people much smarter than me will tell you time and time gain.

PF vibes to you from Pascal.

Hello Sueanne,

Welcome to the site for the herd of clusterheads, and welcome to the US.  What part of the US did you land.

I am in Gainesville Florida!