Hey yall…

Well, this is my first post and I need help (posted also in the newbie section)!  Read the below and let me know if this really does sound like a cluster headache, as I am not sure I am at the right place.  I sure am lining up with most of the ‘classic cluster headache’ symptoms, but not 100%.  If I AM fitting a cluster headache, please help with advice for what to do!   This is fairly long, so thanks up front for reading it and helping!

So, that said, some history:

I am 49 years old, male.  Stay in really good shape, eat mostly a cave-man diet.  I drink wine most nights, about two glasses.

I had never had a headache in my life until 2 years ago on New Year’s eve.  I was playing a computer game (I tend to play a computer game about 1 hour per night after work) and my eyes were tired/strained, then wham.  The attack was centered on my right eye, only on one side of head.  In waves, felt like someone pushing on my eye.  Nausau, light sensitivity.  Lied down for 3 hours and it went away.  I got another one in a day or so, same thing, then another in another few days.  In between, I felt different, I call it ‘being on the edge of an attack’, like I could trigger another attack if I strain my eyes too much. 

The attacks were definitely eye strain related, specifically looking at a computer screen or reading, and I work as a computer designer, so this was a huge deal. The pain seemed to originally come from the base of the right side of my neck and then somehow get associated with my eye, and would move all over on my right side during an attack, from my neck to my eye.  My eye was literally sore during an attack.  My neck had always been stiff since football as a kid and I assumed that the headaches were originally caused by neck pain (due to my spine/neck being ‘out of alignment) which in turn caused my muscles to spasm in the right base of my neck, which in turn triggered the headache, and that somehow it downstream affected my right eye.

I would often have to go lie down during a work day for 3 hours while another attack passed, which was not good for my job!  This went on for weeks, with the ‘feeling on the edge of an attack’ in between attacks, which came every day or other day. 

I finally went to a neurologist to check for a brain tumor and a chiropractor to fix the neck stiffness and the muscle spasm feeling at the right base of my neck.  I found out I had no issues with brain tumors or aneurysms with a CAT scan.   

I also got a book about migraines and it suggested 1) don’t take the ‘rebound causing pain meds that the neurologist gives you’ and 2) get rid of dietary triggers (caffeine, chocolate, alcohol, citrus fruit, aspartame, nitrates, etc).  I went to the chiropractor and changed my diet for about 2 months, and suddenly no more headaches, yeah!!!

Then, this time the day after New Year’s (2 years later almost to the day), I had a day where I put a lot of strain on my eyes (drove a long ways), then when I got home I stayed up late and played a computer game, and drank just a little whiskey since I was out of wine (I never drink whiskey), and boom, the exact kind of headache as two years before.  Then, I got another one playing a computer game 2 nights later.  Both seemed to be related, just as two years earlier, to eye strain, but also the ‘epicenter’ of the pain seemed to be the right base of my neck in a kind of muscle spasm, then the pain goes back and forth between my right eye and right base of my neck.

These attacks last between 2-4 hours and usually occur at the very end of the night after a day of eye strain looking at computers (my job and my hobby both).  I then lie in bed for up to four hours unable to sleep and praying to God for help to know what to do.  The pain is BAD for the whole time with waves of pain going in and out and moving around between my neck and eye on my right side.

As of today, they have been going on for almost two weeks, with about 8 attacks in 14 days, usually late at night.  And that feeling of ‘being on the edge of an attack if I push it with doing things that are eye strain related’ is back in between the attacks.

AND last but not least, I now am realizing, while I feel like I need to lie down and rest my eyes in order to prevent an attack coming on, that the actual lying down is CAUSING the attack to get WORSE, as the pressure of lying my head down on something (even a pillow) triggers a full-blown attack.  So, I can’t even lie down even though I need to rest my eyes!  I have learned instead to sort of lie down in my easy chair sitting more straight up so that I don’t put any pressure on my head.  I am also learning to get LOTS of regular sleep. 

I have gone back to not eating any of the dietary triggers again, no more alcohol, etc.  I have also this time started going to a rolfer to help with 1) the twisting of my spine and being ‘out of alignment’ and the muscle spasm in my neck (which is supposedly caused by my spine being out of alignment and which then makes the muscle spasm, which is supposedly the ‘trigger’ of the headaches).

I am SCARED of having this issue forever going forward!  Since eye strain seems to be a triggering factor, it has taken away all my enjoyments (computer games, TV, reading) AND its directly affecting my job (which is to look at a computer screen all day).  I also can’t work out since hard running like I like to do is another trigger. 

AND I have no idea what exactly is the cause or the solution, I am just guessing.  If I had a broken leg, I would go to a doctor, get a cast, etc, rest for 5 weeks, then all better.  With this, I am stumbling in the dark as to what to do and everyone I go to (family, friends, chiropractor, rolfer, etc) all tell me different things.  My sister today suggested that I am displaying classic symptoms of a cluster headache, and wow, I am.  But, some questions as to whether it’s a cluster headache:

1)      Why do attacks last up to 4 hours if it’s a cluster headache?  The sites say they normally only last for no more than 2 hours.
2)      Why does it seem like tight spasming muscles in the base of my neck (right side) seem to be a focal point of the trigger.  The attacks seem to come from 1) eye strain and 2) my neck muscle spasming at the right base of my neck.  They seem to be related.  Doesn’t that point to it being a more structural thing like my spine being out of alignment causing my neck muscle to spasm, which in turn somehow causes the headache and somehow transfers to my right eye?

If it does sound like cluster headaches, where do I best go for exactly what to do?

I bought some melatonin today and will take 10mg starting tonight.  Thinking about taking Noni (I am into natural foods and diet).  Thinking about doing a ‘juice feast’ where I eat nothing but fresh juices for weeks or months as a detox program.  I know I need to drink lots of water.  I have heard about taking magnesium but don’t know how much or what kind.  The rolfer (and the chiropractor two years ago) says that I am ‘out of alignment and my spine is twisted some’, so going there could only be a good thing headaches or not, right, especially since it seems so related to neck tightness/spasm.  I also know I need to get plenty of regular sleep.

Is this a cluster headache, and if so, what to do?  My job and whole enjoyment of my life seems to be on the line!

Thanks so much for reading this far, you are truly wonderful for doing so!

Randy

You do realize that nobody here can tell you whether or not you have cluster headache syndrome. That's a medical diagnosis. You need to talk to a headache specialist M.D.

I agree with Brew..please see a head ache specialist.  But some of what you write does not seem to be consistent with CH while some of it does. 

The part that makes me want to consider tension headache instead of CH is the fact that you can lay down during an attack.

Most all of us CH sufferers are very agitated during an attack, and laying down is the LAST thing we want to do while the hit is in full swing.

That is not to say that some have "learned" to be still and fight the urge to thrash about.  We almost unanimously know the hell of our own private "head banger's"balls.

But what you describe could be the initial beginnings of CH...or it could be one of a host of other conditions that can mimic CH.

Please see a specialist to rule out anything that could be more sinister than CH.  CH hurts like a Mo-fo...but other conditions could be life threatening.

Keep us posted ok? 

Our experience has shown your best bet is a headache specialist neurologist. Heads are notoriously complex, headaches are a bear to diagnose! There are hundreds of headache types, and sadly many have a combination of headache types, making the diagnosis even tougher. Sadly, your typical GP gets about 4 hours...TOTAL.....education on headache types...all headache types. Your chances of an accurate diagnosis aren't so hot.

On top of that, there are sinister...although fortunately rare......ailments that will mask as sudden onset headache pains, which must be eliminated as part of your diagnosis.

Good luck, the diagnosis is the toughest part. If it turns out to be CH, DO NOT  lose this site! :)

Joe

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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We have medical studies which show just how poorly trained are docs--even neurologists--when it comes to the area of complex headache disorders. Other studies show that many folks require several years to get a sound diagnosis because they wander from doc to doc trying to find appropriate Dx and treatment.

Avoid that waste of time!

And you might look over this group of articles:

See by looking for this series of locations: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

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

Click here for the link Bob mentioned, it shows some maladies which can be mistaken for CH.

Joe

Thanks for the help everyone.  I will check out those links for the right doctor to go see.  I did go to a neurologist 2 years ago when i first got these same headaches for 2 months.  He said i had migraines and also ran a full CAT scan looking for aneurisms and for brain tumors, etc.  The CAT scan came back perfect.  He gave me perscription meds for the migraines, which made the headaches worse.  I then read a number of books, etc that said DO NOT take the rebound causing meds the neurologist gives you or the over the counter rebound causing migraine meds with caffeine in them.  So, was kinda digusted that the neurologist gave me those, so have been reluctant to go back to a neurologist this time.  Guessing i dont need another CAT scan, as it was perfect before and the same exact headaches now two years later.  Should i go to a neurologist again though, or to a different type of MD???  Have been thinking i would go instead to an Osteopath, since it seems so related to the neck (and both the rolfer and the chiropractor say i am twisted and 'out of alignment').

Neurologist or Osteopath or both or something else???

Thanks!
Randy

Sounds like you've eliminated the "sinister" stuff we worry about, that's a good thing. Osteopaths were recently discussed in another thread, didn't appear to be much help. Many use chiropractors to help with the associated damage we do to ourselves during an attack, but it doesn't seem to help at all with the actual mechanism of CH.

Sadly even many neuro's just don't get headaches. That's why we try for the headache specialist neuro.

Joe

I just wanted to tell you I think you're doing a good job hunting down the source of your pain, and a lot of what you are trying is recommended here. You didn't mention energy drinks, though. Try them (Red Bull, Monster, etc) as they can help abort the hit more quickly. Frankly, I'd start with a neuro/CH specialist, but whichever route you take, please let us know how you make out. In the meantime, blessings. lance