My name is Gene. I am 42 and live in the Fort Lauderdale, Florida area. I just found out that I am a clusterhead. Last night, as my pain was backing off, I decided to google "migraine headaches" and stumbled across "cluster headaches" on a link from the mayo clinic. In a way, it was like Christmas morning for me and I had just received an awesome present. I called my wife to the computer and said, "read this" and went outside to get some fresh air. We both agreed that what we had just read, described my symptoms to the t. Only took me 6 years to diagnose myself  8-)

I remember very specifically when I had my first attack in July of 2004. I was in Las Vegas with my wife, before she was my wife, and we were in the front row of the Hollywood Theater at MGM Grand watching George Carlin perform. About half way through the show, it hit and he wasn't funny anymore. Now I know why my left eye is so red in the picture that we had taken of us inside the theater.

My latest bout started around the end of September. After all I've read in the last few hours, I'm hopeful that it will be ending soon. It's been about a year and a half since I had my last bout. During that one, I went to see an ENT. He sent me for a CT scan and told me that other than a slightly deviated septum, there was nothing wrong with me and suggested that it could be some type of air borne allergy. He gave me a sample of nasonex and suggested that I take claratin clear. Seemed to do the trick then, but I now know that it was just the end of that cluster.  ;D

My wife made an appointment with my cardiologist thinking that it might be blood pressure related, but it's not until December 11th. Hopefully, I can get in to see a Neurologist sooner than that. With my luck, my symptoms will be gone by then and they'll just think I'm crazy. If anyone can suggest a Neurologist that specializes in these things that is local to my area, I would be forever grateful.

Thank you to whoever started this board. I'm looking forward to learning more about these darn things and how I can help myself.

Kindest regards,

Gene

Hi Gene,

It's very important to seek out a headache specialist Neurologist for a proper diagnosis.  Even though you find the symptoms to be a match, there are other (sometimes very sinister) conditions that have very similar symptoms to Cluster Headaches.  A good firm diagnosis is essential to proper treatment.

If it ends up you are indeed a clusterhead, you have found the best place for support and information.  There is literally thousands of collective years of expert sufferer and supporter advice here.

The best advice I can give. From personal experience is when the cycle starts, and you call your doctor. Usually a neurologist that specializes in headaches is pretty busy. So your appt may be a few weeks out. So once your in get stocked up on O2 and what ever meds you doc prescribes. Once the cycle is over, don't get complacent. This has been my mistake for years. Scrambling at the last minute to get my scripts in and tanks delivered.  Yelling at nurses over the phone to get me in right away. I understand the crazy part.  Usually by the time I see the doctor my cycle is almost over. It will literally save you many nights of agony. There is allot of info here to read and can be life changing.

All the best to you. PFD to all
Jrcox

Hi Gene.   welcome
  Look around in here, there are lots of things you can print off, and take to your doctor...it helps to go armed with info, as not many doctors know about CH.

  Did you take the cluster quiz on the left yet?

Oxygen is the best                     Lorac

 
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]
===========
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.
=========
Your experience is not unique!

Headache. 2000 Oct;40(9):730-5.
 
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291 
_________________________________________________________________________
Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.

Bahra A, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk

OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14763953 [PubMed]

It helps me to keep my blood pressure down (normal) during cycle which is when it goes up.  I got that tip from my internist and daughter (med field) and didn't believe it at first, but it did help!  At least that might help until you get to a doctor.

Thank for for the welcome.

My wife was able to get me an appointment with a nuerologist by the name of Adrianna Rodriguez at the Cleveland Clinic in Weston. I'm a little nervous, but glad that I got an appointment so quickly.

lorac wrote on Nov 19^th, 2009 at 10:24am:

Hi Gene.   welcome   Look around in here, there are lots of things you can print off, and take to your doctor...it helps to go armed with info, as not many doctors know about CH.   Did you take the cluster quiz on the left yet? Oxygen is the best                     Lorac

Yes, I took the quiz before I joined the forum and passed with flying colors......However, I do not see the menu on the left anymore.

Use this and you will:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Marc

Marc wrote on Nov 24^th, 2009 at 9:44am:

Use this and you will: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Marc

Thanks Marc

My appointment with the neurologist went very well. She listened to everything that I had to say and answered all of my questions. She prescribed Imitrex 100mg pills. She said that my insurance might only cover the generic, but said that would be ok. She instructed me to start with only a half a pill when I feel an attack coming on. She also is working on getting me some oxygen. Her exact words were....."I guess I should hook you up with some oxygen." Made me feel like she knew exactly what I was dealing with. She also scheduled me for an MRI, with and without contrast and an MRA.

I only wish that I had found out that I was having clusters sooner. Yesterday was the first time that I haven't had an attack since this cycle started. Not sure if that means anything. I will update as necessary.

Good you got a doctor that gets it. Their tough to find.  About the  imitrex pills. Pills are rarley effective with CH. You should try and get vials of liquid trex. This way you can give youself about a half dose. But be carefull some people including myself get nasty rebounds. I was also told it is not realy how much you take that is dangerous it's how often. But you should never exceed 12 mg in 24 hours or two 6mg doses.   A typical vial is 6 mg. If you break it up into thirds you 
get to abort 6 attacks. The dangerous part of breaking it up is instead two 6 mg shots you now are taking 6 2mg shots. I would stick with high flow 02 and use trex as a last resort.  Again everyone is different. Something to atleast discuss with your doctor.  My thoughts are with you. I wish you PFDAN

jrcox   

Hello Gene,
Your on your feet and running now, so glad to hear it. It takes awhile to find the answer, but once you do, your right, feels like CH-ristmas  ;)

The Imitrex pills didn't really help me, but the shot does! I split it up in to 3rds (as Jrcox says), for I only need the 2mg to abort my CH's.  I always O2 first, as there is no side effects and cheaper.  And as a preventive, I use 320mg of Verapamil daily.

Welcome fellow Clusterhead and keep us posted on your progress!

Angela

Just got a call from the supplier that my doctor sent the prescription for oxygen. First thing the lady says is that she is giving me some pricing because my insurance supposedly doesn't oxygen for cluster headaches......they've pissed me off now.....wait until my wife finds out, LMAO.....don't know if that's true or not, but I will find out tomorrow. Worst case scenario is that I'll get my cardio doctor to handle it.

Hi Gene and welcome. Sorry you had to find us but very pleased to hear you have a neuro who seems to understand CH's.
My o2 is mostly covered by my wife Angie's insurance but if it wasn't I would pay out of pocket no questions asked for the relief I get from it. o2 is my savior. ;)

   Barry :)

Thanks Barry.....I'm covered by my wife's insurance as well.

Used the generic imitrex last night for the first time. Took half a pill and it worked within 20 minutes. Did not experience any side effects either. I feel very lucky to have this stuff in my back pocket now. The sticker from the pharmacy says that my insurance saved me almost $400.00. I imagine that most of that cost is in the packaging. Does the real imitrex in pill form come in elaborate packaging too?

angela.lambert wrote on Nov 24^th, 2009 at 4:38pm:

Hello Gene, Your on your feet and running now, so glad to hear it. It takes awhile to find the answer, but once you do, your right, feels like CH-ristmas  ;) The Imitrex pills didn't really help me, but the shot does! I split it up in to 3rds (as Jrcox says), for I only need the 2mg to abort my CH's.  I always O2 first, as there is no side effects and cheaper.  And as a preventive, I use 320mg of Verapamil daily. Welcome fellow Clusterhead and keep us posted on your progress! Angela

Hi Angela.....My doctor wanted me to try the pills first and last night I took half a pill and it worked.

And I support all commercial fishermen  8-) I don't fish commercially, but I'm an avid recreational fisherman....as if you couldn't tell by my avatar  :D

Gene1720 wrote on Nov 25^th, 2009 at 7:04am:

Hi Angela.....My doctor wanted me to try the pills first and last night I took half a pill and it worked. And I support all commercial fishermen  8-) I don't fish commercially, but I'm an avid recreational fisherman....as if you couldn't tell by my avatar  :D

I can see that you like the pole kinda fishing  ;)
I am gonna get back to Guesspi on the Meetings and Gatherings Forum on here in a minute about the awesome charter fishing we have around my hometown. Maybe convince some clusterheads to make a voyage up and have the first Alaska CH Convention. ;D  I think I might be the only AK attendant  :-?

Stick with what works, each cycle is different from the next.  What might trigger, what will abort, etc...
I remember the packaging, the "real" Imitrex isn't in anything better, of what I can remember from 2005.

PFD,
Angela