Hey yall…

Well, this is my first post and I need help!  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

I agree...it doesn't sound like CH to me eithor.

One little tip, though, for the eyestrain, as you said that could be a triggering factor...

While this won't really help with gaming, it will help when surfing the web...

Use the Firefox browser when surfing the web, coupled with Firefox add-ons, Stylish and Adblock Plus.

With Stylish, you can change the way websites look (I myself get eyestrain with white-sheet backgrounds).  If you know CSS code, you can re-style websites yourself.  If not, there are loads of styles you can choose from - again all free - that others have written.

Also, with adblock plus, you won't get brightly coloured flashy banner ads - again much easier on the eye.

Here's where everything is....

Firefox : Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Adblock Plus : Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Stylish : Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Userstyles (styles for websites written for the Firefox Stylish add-on) : Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

What they said!

I've been told the average med student gets a grand total of 4 hours training on headaches....4 hours total, covering ALL headache types! As Bob mentioned, there is the really really small chance it's something more sinister going on, you'd certainly want to eliminate that possibility with the diagnostic scans etc., available through a specialist. Would be bad mojo to just treat the pain while something grew!

Once you eliminate that, you can get a firm diagnosis, whether it be CH, SUNCT, Occular Migrain, or any combo of those and others, there are many treatments available. just need to get over that diagnostic hurdle. Wishing you speed and luck in that endeavor!

Joe