Hello everyone.  I have only recently become familiar with cluster headaches.  A friend of mine told me to do some research on CH when I told him of the horrible pain I had been experiencing.  After reading tons of info on various medical sites and message boards, I am convinced that the symptoms I have been experiencing for several years are cluster headaches.  As it is the holiday weekend, I will have to wait until after Monday to see my doctor and discuss with him my findings.

I watched the video of Arthony on YouTube.  I know well the pain he exhibits in the video.  My fiancee knows it also; she has had to watch me when I have my "episodes," and I know it scares her and breaks her heart that there's nothing she can do for me.  Ibuprofen, hydrocodone, Excedrin...Nothing helps the terrible pain that I experience.  I am hoping my doctor will be able to prescribe medication and O2 to help me, if he does in fact diagnose me with CH (which I'm positive is the culprit).

I work in a wonderful restaurant, and have only been there a couple weeks.  Last night I was sent home because of the pain I was in.  I did not want to ask to leave, as I am fairly new there, but one of my co-workers talked to the manager and got me out of there.  It was embarrassing, as I pride myself on working very hard and giving my all when I am on the job.  I felt like a fool, holding my head in my hands and rocking back and forth sitting on an empty keg in the back of the restaurant.

But at least now I believe I've put a name to the affliction.  It's somewhat of a relief to have an idea of what is going on with me, rather than just cursing God and asking what I have done to deserve such a fate.  I feel armed now with knowledge to take to my doctor next week.  Thank you so much to this site and the people here for all the wonderful information.

I'm hoping to make it through the next couple of days at work unscathed.  My attacks had been occurring around 1am, when I am safely at home, but last night it came much earlier, around 7:30 while I was still working.  If I can just get past these next few days, hopefully my doctor will be able to get me some relief.

Thanks again to all who are here, and I look forward to speaking with you all in the future.

I hope that you have read enough here to know that we have serious reservations about the ability of many, many docs to treat us effectively. If you have the option of finding a headache doc....
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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. 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. 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
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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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And get the PDF file, below.

This material, once you have grasped the basics, will give you tools to discuss treatment options with your doc AND to begin to evaluate his skills.

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Welcome.  Many good ears lended here to help.   

Meantime, if you begin to feel one starting up at work, try a double espresso if available at the restaurant or carry a Red Bull or two handy to guzzle.  Caught very early, they may help with a limiting effect to function.

Welcome to the board and good luck with getting your official diagnosis. REALLY push for the oxygen. It's incredibly effective when used correctly. Read the oxygen info tab on the left for details on how to set it up and use it.

And Kevins suggestion, as weird as it sounds, is very effective for many. On cycle I have Red Bulls stashed everywhere, in my house, in all my vehicles, just in case I get caught away from my oxygen. Chug it down fast as soon as you feel the beast starting.

Joe

Thank you for the welcome and the information.

Bob Johnson, luckily I have an uncle in the surgical field who has good contacts in my area.  I plan to contact him tomorrow to discuss my condition and see if he may be able to recommend to me a good headache specialist.  Thank you for the links, as I'm sure they will be helpful as I begin this journey to try to feel "normal" once again.

Kevin M. & Guiseppie, luckily I had read on this very site that Red Bulls, if taken early enough, may help lessen the severity of an attack.  Twice at work tonight a felt the pains coming, and both times I chugged a Red Bull as fast as I could.  I think it actually helped a bit.  Hard to know without knowing how bad the attack would have been without the Red Bull, but the pain stayed at a manageable level, so I'm satisfied.  I had another attack right at the end of my shift and did not drink a Red Bull, and the severity of that attack was certainly greater than the first 2.

Again, thanks for the words, and I hope I'll be able to contribute to this site while also learning more about my likely affliction and how to live/deal with it. 

Snarf, there are fortunate ones amongst us who have found some real consistent relief from CH, assisted greatly by info and advice obtained here.

You are taking the right steps, and I believe that chances are good that you'll be very successful in your fight against the beast.

While you await more treatment options you could try, along with your red bull, blasting the car air conditioner, putting your nose right up to a vent, and deeply breathing the freezing air. That will abort an attack for some of us some of the time. Might take 10 to 15 minutes.

Well, thank God I had a relatively pain free day.  A couple of minor irritations (minor compared to the past 4 days), and I was kind of waiting for the big one to hit, but it never did.  Or it hasn't yet.  The first 2 nights, Tues and Wed, it hit around 12:00-1:00am.  The past 2 nights it's been around 8-9pm.  But there have been constant (bearable, kinda able to be in public) pains throughout the day, but the big ones put me down.  And today it's been really smooth, and I'm so thankful for that.

My headaches go back about 3 years, and have usually been in batches of 5 days to a week or so, separated by 5 or 6 months.  So about twice a year.  But I went through a 5-day attack period about 6 weeks ago, and here it is again.

I used to get tooth pain when I had my headaches, so I thought something was wrong with my tooth that was causing the pain in my head.  So I thought I needed to have a tooth pulled put the dentist said there wasn't anything wrong with it.  And then the attacks wouldn't last much longer than a week, so when they were gone, I was just thankful and didn't look into it more.  I'm glad I was told to do research on cluster headaches and look forward to speaking to the right doctor about it. 

Luckily most of my really bad attacks have been at night, so I've been able to be in another room while my fiancee is sleeping and she didn't have to witness them.  But she has seen a couple doozies, and it scares her.  People ask me if I'm having migraines, and I don't know how to explain to them that the pain is sooooo much worse.  I've broken several bones, dislocated elbows and had various other painful injuries.  Nothing comes remotely close.  When I break a bone, I think, "Get me to the damn hospital."  When the big ones hit, I think, "God, if you take my life right now, I ain't gonna be mad at you."  People ask if I need hard core narcotics and pain pills.  I tell them not to waste it on me because it won't even put a dent in the pain.  It's just something I wouldn't wish on anyone, not even as a form of torture for national security or something.  It's that bad.

Well, that's enough rambling, I reckon.  Glad I found this place and I'll keep you updated on progress on diagnoses.  And thanks for all the words and hints and resources and such.

Snarf wrote on Jul 5^th, 2010 at 12:25am:

I had a relatively pain free day.  I'll keep you updated on progress on diagnoses.

Good news. 

Yep, do so.  See the doc, get a diagnosis so you will have an arsenal to help maintain during these times. 

CH can be unpredictable in length of episodes, have something available to use for yourself as an abortive for these, or maybe a preventative also should a cycle lengthen.  Diagnosis is always best first though.      :)

Snarf wrote on Jul 5^th, 2010 at 12:25am:

I used to get tooth pain when I had my headaches, so I thought something was wrong with my tooth that was causing the pain in my head.

Wonder how many of us have had teeth pulled. Before i heard of CH's I had one pulled, it didn't help. Thought I screwed up and had the wrong one pulled so I went back and had the next one pulled. That didn't work either. In my mind that narrowed it down to sinus congestion. Used a lot of OTC sinus meds. to no avail.

One day my wife called me into the living room where she was watching TV. There was some fellow describing his experiences with headaches. He said he had had his wisdom teeth pulled, had used a lot of OTC sinus meds., and would get a bad headache about 20 minutes after having a drink. I stood there dumbfounded listening to this guy. It seemed as though he were talking about me. He said they were cluster headaches and pointed me to this site. I still don't know who that fellow was, but thank God for him.

Thanks for that, Arde.  Now I recall that I once actually did have a tooth pulled, because it had been hurting really badly and my head was also absolutely killing me.  I remember that right after it was pulled, I had absolutely no more tooth pain (the pain actually stopped before they pulled it, due to the numbing medication).  And my headache was gone as well.  But looking back, I believe that was at the end of about a 5-day pain stretch, which is about the length of my cycles.  Wish I had known about cluster headaches back then.

But I'm glad my current dentist didn't pull the other tooth I recently spoke with him about.  I have a follow-up appointment in a couple weeks, and he told me to let him know how it feels then.

I'll definitely speak with a doctor this week about my condition.  I've also found the clusterbusters site, which has some interesting alternative suggestions.  But I'll talk to a doctor familiar with cluster headaches to see what he or she may recommend. 

Arde wrote on Jul 5^th, 2010 at 10:29pm:

Snarf wrote on Jul 5th, 2010 at 12:25am: I used to get tooth pain when I had my headaches, so I thought something was wrong with my tooth that was causing the pain in my head. Wonder how many of us have had teeth pulled. Before i heard of CH's I had one pulled, it didn't help. Thought I screwed up and had the wrong one pulled so I went back and had the next one pulled. That didn't work either. In my mind that narrowed it down to sinus congestion. Used a lot of OTC sinus meds. to no avail.

Yeah, well, count me in on that, too. I didn't have it pulled cuz I thought it would stop the Clusters, although I had my fingers crossed and prayers blazing away. Tooth pulled...attacks continued. They do simulate sinus problems, and I had sinusitis from time to time. But nothing affecting them eased my clusters. I do know tooth and nasal/sinus problems can make them worse, or precipitate an attack.

Arde,

The results of the cluster headache survey many of us took in late 2008 indicate 165 or 14.55 % of the 1134 participants had teeth removed as a result of their misdiagnosed cluster headache symptoms.  Another 77 or 6.79 % had sinus surgery...

The median time to a correct cluster headache diagnosis was 6 years for the 1134 participants in this survey. 

That figure is consistent with a study by Klapper et al. that determined that the average time it takes for a cluster sufferer to be diagnosed correctly by the medical profession is 6.6 years.

Take care,

V/R, Batch

Thanks Batch
I thought it would be something like that. I hadn't been misdiagnosed as I hadn't been to a doctor. I just made the mistake of confusing the symptoms with the cause. Coming here has made all the difference.

Arde,

Take the quiz and survey at the left and print out your results to take with you when you see your neurologist.  A good diagnosis is essential in order to obtain a prescription for oxygen inhalation therapy...

Take care,

V/R, Batch

Hi Everyone,

I'm also new and relieved to find this site.  After 20 years of suffering these bizarre and excruciating headaches, I have finally found the cause and that in itself, is a little reassuring.  I was first told it was TMJ.  Then I was told it was that I needed to have my wisdom teeth removed.  So I had them removed last summer.  Well, by process of elimination and considering that I had the wisdom teeth removed and started getting the headaches again last month, I started doing a little research online and found information on the cluster headache.  I only had to read one page describing them and I KNEW without a doubt that this is what I have been suffering from for all these years.

Although knowing what it is doesn't make the pain go away, it somehow makes me feel better to know that I'm not crazy and there is a diagnosis for this hell that comes and goes with almost no warning. 

I'm sorry that you all suffer like I do, but I really am glad that there is a place that I can go where people know exactly what I'm going through.

Hi Jewels,

Welcome!  Glad you found this site, but sorry that you had to.  Read up and ask questions, there are plenty of people here who will be able to help you find ways to manage this beasty.

Wishin' you all the best,

Kate

Hey Jewel welcome to the board. When you get a mnute, please start a new thread introducing yourself. What meds you've used, what has and hasn't worked etc. You've got 10,000 years of real time CH expereince on this board dying to help you out! Glad you found us.

JOe