Let me start by saying thank you for starting and maintaining this website. In a way I'm somewhat disheartened to find myself registering here as in my stubborn ways I had been trying to convince myself that this was a temporary thing. Being in my 5th year of these debilitating headaches I'd never heard the term 'cluster headache' before two days ago, but since being diagnosed with them and doing research as well as coming across this website in between the headaches I've realized that this probably won't just disappear by ignoring it.

I'm a 31 year old male living in Surrey, BC, Canada (Vancouver area) for about 8 years. My headaches started about 5 years ago.

When it first started, it was maybe a week of headaches that would wake me out of a sound sleep and last for 30min-2hrs. The pain was like nothing I'd ever felt, but when they went away it was gone so fast and almost completely( I don't think I had much shadowing then) that I would convince myself that it was an isolated incident and could be avoided by not doing whatever I did the night before (staying up late, etc.)

I had very little experience dealing with doctors at this point as I'd never really needed to go. Eventually I did go to a very busy walk-in clinic. The experience was about what I had expected- a rushed doctor that didn't seem to take me very seriously and basically told me there wasn't much they could do for 'headaches'.

In either the first or second year I had one so bad that I ended up in the ER. I had a ct scan done while there and they said they couldn't see anything wrong.

The next year when they came back I was able to get a prescription for Maxalt which seemed to help quite a bit with the pain, but did nothing to keep them from coming back. After about 2 weeks of it my wife convinced me to try a type of acupuncture involving pressure points on the ears. It may have worked or it may have been the end of that batch of headaches, but they went away completely for nearly 2 years.

Then about 3 weeks ago I started getting the faint shadowing when I woke up every morning. Some days heavier than others, but it didn't actually turn into headaches until a few days ago. Since then they have came back full-tilt. Averaging 4 headaches a day with non-stop shadowing and a major tightness in my neck at the base of my skull down through my right shoulder. After a 3 hour excruciating headache(the longest I've ever had) with only a year and a half expired Maxalt, which didn't help, I went to the clinic. This time the doctor diagnosed it as cluster headaches. He was very helpful this time, and even told me he had a family member that was affected by them as well. He prescribed Maxalt, Naproxen as well as something else which I don't have the name at the moment. He also half jokingly suggested Oxygen, but was not able to prescribe it without a major lung condition.

Anyway, that's where I am now. Had one headache at 7pm last night which went away fast with a maxalt, I felt good when I went to sleep until I woke up 2 hours later with a bad one. I didn't want to take a maxalt as I'd already taken 4 that day so I was able to ride it out for the 30 minutes or so. Woke up today with just shadowing and the neck pain and I will be going to try the acupuncture again in a few hours.

Anyway, let me make sure to answer the questions from the newbie guidelines:


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A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

Only recently by my general practitioner. No other medical concerns.


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B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

Maxalt- Useful in cutting the duration of the headache down,
Naproxen- Hard to say, just started it.


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C. Have you used or explored any alternative treatments (and ditto)?

Ear acupuncture- Coincidence or not, the headaches stopped for a long period last time. Will be trying again today.
D3 regimen- Just started yesterday.


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D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

When the worst ones hit I am absolutely unable to do anything. I have shooting pain from my neck to behind my right eye, always on the right side, my right eye waters, my nose runs, the tendon's in the right side of my neck stand out and it seems the right eye lid droops down. I am unable to hold any one position for very long so I usually end up sitting on the floor changing positions often as my body becomes too shaky and tired to stand for long and laying down is not an option. The pain is the worst pain I have ever experienced, including broken bones, burns etc.
The only upside is so far these episodes don't usually last more than a few weeks out of a year so it doesn't affect most of my life. My social support is my wife who has been the perfect support- actually she's the one that found this website.


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E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders. (Because there are many dozens of kinds of headache, and treatment often erratic and lengthy, we would encourage you to start a headache diary.       3. On the main page is a series of buttons which you should explore. Also, read the many messages which are rolling over these pages. You will find yourself in the experience of others, learn from their experience, and appreciate that you are not alone—one of the great survival skills in coping with your headaches.

I believe I do have a good basic understanding of cluster headaches. But the condition is new to me and I am still reading as much about causes/cures, etc as I can find. Pain is a pretty good motivating factor it seems. I'm always thankful for any information that is passed my way and I'll be reading through more posts to try and draw on other people's experiences.

Anyway, if you read all of that, thank you very much for your time. It's nice to vent sometimes.

Nick H.

If at all possible, locate a headache specialist. Most docs, even neurologists, have meager education in complex headache disorders. Histsory on his site and in formal studies show folks wandering for years/multiple docs, trying to find the knowledge/skill needed.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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For basic learning re. 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]
== also,


Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Print the PDF file, below. Both for your learning and as a tool to discuss treatment options with your doc.
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The usual treatment plan: abortive to quickly stop an attack; a preventive which is used for long term suppesion/blocking of attacks
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Explore the buttons, left. Not always the most current infor but good background material.
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Drop the Naproxin or any pain med. Useless with Cluster and regular use will increase attacks.
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While you appear to have Cluster, a good diagnostic work-up essential. There ae a number of disorders, some rather serious, which mimic Cluster but which are NOT headache disorders. Not cool to treat the wrong disorder.
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If a specialist is not possible, ask any/every doc you see for recommendations re. people with practical experience and ask, diectly, any doc you see about their experience with headache.

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Hey Nick, and welcome. Here are some standard starting points for those learning to deal with the beast:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance