So I’m new to this forum and just thought I should introduce myself:

I’m relatively new to the whole cluster headache thing.  I’ve only had one really bad cycle and it lasted for about 8 months. They started a week after my 20th birthday and continued through the following April.  Most of that time was spent bouncing between diagnoses because none of my doctors had any sort of clue.  I was at the U.S. Air Force Academy and none of my doctors had even heard of a cluster headache and the only neurologist on base was deployed to Iraq. I guess it didn’t really help them that I was one of the unfortunate few who has light sensitivity with my clusters, so every doc I got sent to diagnosed them as migraines. I was put through every imaging study they could think to rule out a tumors and other diseases.  I was poked and prodded for countless blood draws and even had the pleasure of a spinal tap.

Starting about January, halfway through my cycle, I was having attacks every 3 hours like clockwork  and it continued for weeks on end.  I was put on every drug known to mankind and they even tried oxygen (through a nasal cannula) but I got no relief.  They put me on bed rest and outright ordered me not to get out  of bed and to sleep the headaches off.  As you can probably guess that didn’t work so well.  I had started out at 6-7 on the pain scale, but after a few months I topped out the pain scale and I was flying through Tylenol and Ibuprofen so fast that I was worried I was going to kill my liver in the process. I was put on every painkiller they could think of (except morphine) and all they did was dull the pain.  My “favorite” part was when one of the nurses even suggested that I was faking my pain to get narcotics.  She thought my shaking and rocking back and forth on the gurney was withdrawal.  She simply couldn’t understand the feeling of wanting so badly to bash your head through a wall to make the pain stop.

Fortunately, the on-base neurologist returned from his deployment and recognized the symptoms as soon as I told him. He put me on high dose prednisone for 2 weeks and it broke the cycle.  For the first time in 8 months, I was pain free.  At the end of the semester, I was asked to voluntarily leave the Academy because my medical issues were interfering with my ability to keep up with my grades, military duties and physical fitness. I agreed and chose to leave for civilian school. I don’t think that the added stress of a military academy was very conducive to my cluster headaches.

I has been about 20 months since my last true cluster cycle. I’ve had a couple of bad days every now and then, but nothing to the same extent as before, in either severity or duration. However, I’m worried that I’m starting a whole new cycle again. For about a week now, I’ve been having about 2-3 hits a day at about 6-7 on the Kip scale. That’s how the first cycle started. I guess my main question is, since I’m not in the Air Force anymore, how do you break in a new doctor? Should I go to a general practitioner or a neurologist? I want to nip this in the bud before it gets really bad again. I can’t afford to lose another semester of college to these darn headaches. Any ideas?

It's so good that you have learned some important lessons about being proactive!

IF you have the option, find a headache specialist and establish a working relationship now. Avoid most neurologists, who lack the training/experience to work with complex headache disorders--unless no options.

IF need be, you may have to do what many of us have done: Teach a good open minded doc who is willing to accept medical material from you, on how to treat CH.

First step: look for a specialist:

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.
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If you have not had time to learn much about your "friend", start with this article. Then explore the buttons (left) starting with the OUCH site and the multiple internal links.

Questions will arise as you read and then you start posting them here. We have some sharp, experienced folks here who are most willing to help....

 
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]
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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.

Welcome Keeper.   
   Bob has some good advice there.
Hope your cycle is short, and you can get  some releif sooooon.          lorac

Hello Keeper-
Welcome to the CH forum.  You can find so much support here, no question is too small here. 
Get all you medical history from the base (if you can).  Bring that in, so they can see that treating migraines didn't work and treating Clusters did.  Don't let docs give you narcotics, they don't work for CH, and you can get addicted.  Not good.

Meanwhile, drink lots of water, pound a energy drink at the onset of a headache, use an ice pack at the base of the neck.  Those might bring you relief, but not for long, the beast will bore of those quickly and they stop being effective.

I see you recognize that you need O2 at a higher level than a nazal tube.  15lpm, non-rebreather mask, that is the only way to stop a headache in it's tracks.  It is a miracle, get on the wagon with us folks.  You'll see. 

So happy you made your way here.  This CH family is the only reason I was able to stop my first headache, and then to continue in a less pain cycle because of their expert knowledge and support.  I was able to request meds that worked.  I did find a great GP who was willing to work with me and my new found friends.

Talk with ya soon!

Angela

hey welcome.....    these people are just lovely here..   glad you found it....

angela.lambert wrote on Dec 14^th, 2009 at 12:50pm:

15lpm, non-rebreather mask, that is the only way to stop a headache in it's tracks.

Many of us need a liter flow higher than 15 LPM - you'll read all about that in the "oxygen info" link on the left of the forum view here.

bejeeber wrote on Dec 15^th, 2009 at 12:06am:

angela.lambert wrote on Dec 14th, 2009 at 12:50pm: 15lpm, non-rebreather mask, that is the only way to stop a headache in it's tracks.  Many of us need a liter flow higher than 15 LPM - you'll read all about that in the "oxygen info" link on the left of the forum view here.

I should of said "at least 15lpm".  Your right bejeeber.  Many need a higher flow rate.

Thanks for all the advice. I was able to find a doctor near me that I can visit over Christmas Break. I'll try the abortives you guys recommended and hopefully I can get on the O₂ train ASAP.  [smiley=thumb.gif]

keeper5689 wrote on Dec 15^th, 2009 at 5:22pm:

Thanks for all the advice. I was able to find a doctor near me that I can visit over Christmas Break. I'll try the abortives you guys recommended and hopefully I can get on the O2 train ASAP.  [smiley=thumb.gif]

Get the o2 thing going.  Not hopefully.

           Potter

It'll sound like an echo....but REALLY push for the oxygen, like Potter said, no maybe's here, be a little bit pushy.....or a LOT PUSHYYY ;D  That 02 is a miracle worker for so many, no side effects, fast acting, a real must try!

Joe