Well thank goodness you found us. We hear far too many stories like yours of doctors throwing darts against the wall trying to "discover" something that will work.

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First off, read this link, then get oxygen prescribed. I went from 90-120 minute rides, to 6-8 minute abort times huffing 02. I feel that familiar tingling in my neck, pressure in my ear, and the beasty starts to creep in. I fire off the oxygen, 6-8 miinutes later I am pain free. Should absolutely be your first line of defense. Been a real life saver for so many on the board. It's cheap, fast, and no side effects. Hopefully some of your canadian brothers and sisters on the board will chime in with area specific advice to get you hooked up.

Imitrex injectables and nasal sprays help many, I use the injectables if I get caught away from my 02. They're expensive and I don't like how they make me feel but they sure whoop the beast quickly.

For now go pick up some energy drinks. Red Bull, Monster, any witht he combo of caffiene and taurine. Chug it down as fast as you can when you feel an attack starting. Will abort or reduce attacks for many.

Are you working with a headache specialist neuro yet? GP's don't know squat about CH, garden variety neuro's aren't much better. We've seen the best results from headache specialist neuros who have the specific training on our "disorder!"

So glad you found us, let's see if we can help you not hurt so much.

Joe

First, start to learn about CH. Knowledge is your best defense, especially since it's difficult to find competent docs.

First, I'd suggest the first title:

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This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
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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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See the PDF file, below. Will give you a tool to discuss treatment options with your doc. What you are on is NOT for Cluster.
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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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If it's possible, suggest you find a headache specialist. Most doc have very little training/direct experience with complex headache disorders leading to poor diagnoses and out of date treatments.

What follows is for the U.S. market but most are tools you can use.
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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.

Hi Jen,
WE understand you and a very warm welcome to you!
I am very glad you have found this place so soon in your young life....
I have suffered for 11 yrs before finding this place, many have suffered 20-30 years,
and some a lot longer....

We will make sure you dont suffer as long.
There is all the info you need and all the support we can give you here...

You have just joined a Great TEAM Jen.

Best Wishes and Respect

Gary

Thanks everyone!

I started researching a few months ago but it is indeed hard to find reliable information on CH.

I have read up on O2 and will definitely make a point to mention it later this week at my appointment!

It is frustrating when your friends/family don't understand (or believe) the degree of pain involved but at the same time I don't think I'd want anyone to be able to understand because they would have to feel it to fully understand.

Thanks again for the warm welcomes; made my day less depressing for sure

Agreed with QNheart above - well except for one little thing - in my experience it's not entirely accurate to say that O2 is faster to stop pain than an imitrex injection. It certainly trumps every pharmaceutical abortive in the nontoxic-ness dept. though. 

Hi ther Jen I'm a newbie here too, but many years into the CH cycle. I, like you, came here seeking advice and just people who truely understood. I cvan only say that this is, without question, the place to be. 
I see my Neuro in a week or so and, thanks to these guys, I have a lot to discuss with him.
If you haven't had a look yet, the clusterbusters site is also informative and may well get you thinking slightly outside the box. 
Any how, all the very best of luck and I hope things get better for you. I'm certainly making the most of my current CH free period, even with the intermittent background headaches.

JenElizabeth wrote on Feb 18^th, 2011 at 12:20pm:

   Bag the Percocets and demand Oxygen at 25lpm+.

hey jen
i know whatyou been going through. After 10 years of headaches i have just found out i have ch. most doctors dont know about ch so they normally diagnose migrains. I have found that verapamil helps, but only if taken before an attack it does not abort attacks. i am new to this board too so my advice is from a pure novice view.This site has also become part of my coping with this curse, as you share with people who have been through this.
cood luck and keep strong
suresh

coach_bill wrote on Feb 18^th, 2011 at 9:19pm:


If you're on a good prevent and avoid your known triggers you're doing about as much as you can to prevent the next hit. So have things to abort the next hit when it does arrive and get on with life. You need to make the most of life between the hits.

Topamax has helped some others...didn't help me, but I did lose weight! All the other stuff seems to work the opposite. Oh yeah, there's also that thing about memory and word retrieval becoming difficult, hence its nickname dopamax. I do pray it works for you, though. And if your doc won't prescribe O2 you may have to pursue an alternative nonmedical O2 source...like welding tanks. If you search this site for welder's O2 you'll find a bunch of info to help. Blessings. lance