Hi Everyone!

I just recently stumbled across this site during my research of cluster headaches. It's nice to see a support group on the web. I was beginning to wonder if I would ever come across another person that suffers from this.

I guess to start off, I have not been fully diagnosed with cluster headaches yet - waiting to go see a neurologist to confirm my diagnosis from an 'internal medicine' physician. Although I pretty much self-diagnosed myself last year, and the physician is 90% confident that's what this is. I'm curious to know what others who have been suffering with this for some time think (and I have a couple other questions too but I'll get to those later). So, some background...

I'm currently 28 years old. From 15 until about 20 I suffered from bad migraine headaches. These were completely different symptoms. I would know I was about to get one because I'd have the "aura" that would get bigger and bigger until it was blocking a lot of my vision, along with loss of peripheral vision. Then the headache would start. I had light and sound sensitivity and all I wanted to do was lay in a dark, quiet room. I would get one or two of these a year, and it would knock me out for a day or two. The pain hurt but was tolerable to a point where I could go to sleep and it was mostly on one side of my head - usually the side the aura started on.

From age 20 until last year at 26 (just turned 28 a couple weeks ago), I thought I was free. I'd occasionally get a headache slightly worse than a typical headache but not as bad as a migraine and not with the same symptoms.

That all changed in July of last year. I woke up at about 1am with this incredibly painful headache. It was on one side of my head, primarily around my eye and temple. It was horrible and I started flipping out not knowing what was happening. This only got worse when it happened the next night, and the next. I was restless when it happened. I had to get up and pace, sit on the couch and rock, or basically just cry. I wanted to bang my head against something but restrained. I went to a doctor, a typical family physician who thought I was getting migraines. He gave me a sumatriptan injection and said if this takes the pain away, we know it's a headache of some sort and not something worse. Well, the next night when I got the headache I used that injection. It worked but I didn't like the side effects (felt like my skull was flaming and my chest was compressed). Eventually I also went to the ER. The problem there is that my headaches only lasted about 30-45 minutes. So by the time I drove over there, and they finally got me in, the pain was gone and I was back to normal. They gave me pain medications and something to help me sleep but never mentioned cluster headaches.

At this point I started doing the research and found the description of clusters. I thought it seemed spot on to what I was going through. At the same time, I also realized I wasn't taking my allergy medication and that our A/C units were layered with mold (not black/toxic, just some uncommon types). I thought this was the problem and we moved to another apartment. At this point, my headaches had been happening for a month and then I had one night without a headache, then another, and soon it had been a week. Finally, I thought I had found the problem.

Well, fast forward to today and these same headaches started happening again (16 months later). Like the flip of a switch, they hit me about 1am and wake me up. The pain is horrendous and focused around my left eye. It feels sort of behind the eye and sometimes above on my forehead but never spreads anywhere else. It makes me restless and lasts about 30-45 minutes then goes away as quickly as it came. Sometimes the side of my face feels numb and my heart rate seems to go up.

This time when I went to the doctor he agreed this is cluster headaches and prescribed me with Imitrex injections for the next few days while he works out getting me oxygen from my insurance company. He is also going to have me go to a neurologist for confirmation but I'm pretty certain that's what this is.

So, my questions for the community...

Those of you who experience this more frequently (several times a day), how do you handle it?

What foods may trigger the headaches? I've seen 'food' listed as a possible cause but the example is usually chocolate with no others given. I think on this website it listed dairy products and eggs. Anything else?

Is this just a medical condition? Is it a disease? From what I'm understanding, I'm likely going to have to live with this for the rest of my life.

I hope I've provided enough information. If not, feel free to shout and I can add more. I look forward to discussing and chatting with this community as many people I know just don't seem to comprehend the amount of pain I've been going through.

Thanks!
Bill

Welcome Bill - sorry you have to be here, but you are most definitely in the right place.  Others with more experience will add their views, but it seems to me that this is a highly individualistic malady that afflicts each person in slightly different ways, and responds differently to various medical regimens.

In my own case my neuro has me on a successful combination of Verapimil and Indocin as preventatives, and Zomig spray as an abortive. It took about a month to get things under control, but over the last 3 weeks the situation seems to be tolerable.  Verapimil is pretty strong medicine, and it does knock the props out from under you at times, but it has worked wonders in reducing the incidence and severity of the attacks.  If it doesn't ever get any better than it is now, I can live with it.

Good luck to you.  Read on and ask questions.  This is your home.

owthishurts wrote on Dec 12^th, 2011 at 4:50pm:

So, my questions for the community... Those of you who experience this more frequently (several times a day), how do you handle it? We handle our attacks in three ways: first, a good abortive which incudes highflow O2, Imitrex injections or nasal sprays, energy drinks, etc.  We also include a longer term and longer lasting preventative, like verapamil, lithium, Batch's vitamin D3 regimen, or the clusterbusters method. And sometimes we use an intermediate drug like prednisone to bridge the gap between abortives and preventatives. What foods may trigger the headaches? I've seen 'food' listed as a possible cause but the example is usually chocolate with no others given. I think on this website it listed dairy products and eggs. Anything else? Is this just a medical condition? Is it a disease? From what I'm understanding, I'm likely going to have to live with this for the rest of my life. Prevailing opinion is that CHs are caused by a deformation, or malfunction, of the hypothalmus. How and why is unknown. It is, at this time, incurable but that does not mean we cannot manage them. They do have a life of their own and sometimes the Beast seems pesonally vindictive, but we wage constant war against the attacks. I hope I've provided enough information. If not, feel free to shout and I can add more. I look forward to discussing and chatting with this community as many people I know just don't seem to comprehend the amount of pain I've been going through. Read as much as you can abosorb on this site. Take notes. Make lists of everything that has worked for someone and brings all this to an appointment with your headache specialist. Keep a diary of when you get hit, how long, and what the pain feels like along with any other physical manifestations. All of this knowledge provides you with your first line of defense. God bless. lance

Treatment can be tricky when dealing with two headache types. So, if you have the option, work with 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. 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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Intro to Cluster:




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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The PDF file, below, will give you an idea of the types of meds/treatments which you should expect.

Triggers: Nothing very clear with Cluster except for alcohol and some solvents which trigger attcks when you are in an active cycle. Migraine has food triggers which don't seem to be a important issue with Cluster.

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Thanks for the welcoming replies and information, much appreciated!

Bill, welcome to CH.com. SE Mich is quite a large area. I live near Ann Arbor and see Dr James Gramprie at Greater Ann Arbor Neurology, great Neurologist, I've also seen Dr. Thomas Cheng at the U of Mich Hospital, another good CH Neuro.

As far as your insurance covering the O2, you can find out yourself, call them. Many Dr's are not up on prescribing O2 for CH so they just don't. Help them out a little. Learning all you can from here is wise, read the "oxygen info" tab at the left of this screen.

Don

Welcome to the board Bill, I cant add anything to the excellent advice already given. I will second the vote on oxygen. One imitrex stat dose will pay for a month or more of oxygen for me. I was with kaiser...the toughest people of all to get anything out of. When I finally got them to compare imitrex with oxygen, they couldn't wait to get me set up with 02! :)

Joe