Hi, I am wondering if someone can help me out.  I have been suffering from headaches since Afghanistan in 2011.  For the past three years, I've been dealing with military doctors and the VA to try and get some help.  I've been through treatment for TBI and PTSD, but when I explain these headache "episodes", I am met with a puzzled look.  I'll spare you the hardships and agonies of the military and veteran programs themselves and try to explain.

I was an infantryman 11c which specializes in mortars.  These are big cannons that knock you around a bit every time you fire.  Moreover, I had a couple instances where I caught a backblast (head above the tube as round comes out) and for certainty had at least one knock-out lasting <1min.  We fired a lot during my deployment as we were taking contact constantly. 

I remember towards the last 2 or 3 months of deployment getting very bad headaches after we would fire and a constant headache that wouldn't go away.  From my memory the very bad headaches only happened when we would fire.  I would become dizzy, disoriented, and lie in my cot with my face down covering the back portion of my head (left side only)

This spot felt the same pain 24/7.  For over a year after deployment, (until 2013) I would get "episodes" similar to when we would fire, but worse.  I could almost sense that I would feel it coming because my "constant" headache would change and get worse, but then out of nowhere something would spark and the pain was like an icy cold screwdriver being hammered into my skull from the inside out.  Not a pulsating effect, but imagine the pain of when the hammer strikes the back of a screwdriver for up to an hour or more.  I was kicking, screaming, rolling, trying to tuck my head into the couch while holding the back of my head.  I would have killed myself if I could but the pain was too horrible to do anything but toss, kick, and scream. 

I was given an MRI, which showed a healthy brain.  The neurologist who examined the MRI talked to me for about 15 minutes and told me the constant headaches were not from TBI but from a very common condition that many soldiers incur from wearing their helmets and bobbing back and forth.
I didn't argue this to her, but even in combat or the military I hardly ever actually wore a helmet, but ok.  She was not able to understand the "episodes" I told her about.  The pain area and effect from the constant and the episode are very similar.  However, the constant ranges from a 3-7 in intensity and the episode is beyond measure. 

Never once with all the PA's I went to, makeshift Army docs, Polytrauma teams, clinics, etc. did I ever hear reference to a "cluster headache".  I understand that these are normally in the face or eyes but the pain, cycles, intensity, and function are the same.  I would not get nauseated, the symptoms seemed very different from a Migrane.... lying with a warm washcloth lights out and a bed helps migranes.  My former PA told me that it was a "head pain" and not a headache.  There are a variety of other symptoms understandably that would make my situation different, but as far as "type of headache"  I feel a cluster headache is the closest definition.

I was given an entire pharmacy of drugs before they started giving me injections.  I noticed on this site that Imitrex seems to help the best.  If that is the same as Maxalt, then I'm allergic to it.  However, I believe it was Botox injected to the c2 nerve that actually helped me out.  Things were also starting to go away on their own at that time so I'm not sure if it really was the botox that did the trick.  I still get headaches very often, but in different areas.  I get migranes about 1-4 times a month, but most of the time it is my fault.  (nitrates, caffeine, cigarettes, grape juice, alcohol)  I'm extremely intolerant to alcohol so I can only have one drink before I realize it was a mistake.  (still try every few months, lol) 

Of course, I'm starting to have similar headache issues again (haven't had an injection in 9+months) and the same constant is recurring.  This is why I've begun to research this time instead of letting the VA handle it (it takes years to get anything done there anyways, and I'm not someone looking for compensation) 

Nevermind trying to diagnose me, in fact I don't have the time to sit here and tell you the whole story.. There's a lot to it.  But ANYWAYS, have there been any links found between TBI and clusters?  Is there another type of headache similar to a cluster that is not called a migrane or simple headache?  Thank you.

Headaches are horrible, horrible things, AceHigh. We know this truly.

On the top left of your screen is a button for the Cluster Quiz. Click on it, take it serious, and let us know the result.

Regardless the outcome we'll help you every inch of the way because headaches are horrible, horrible things.

It's unfortunate that neurologists receive very little education in dealing with complex headache disorders. The situation is more complex given the history which you have outlined.

Since you are nowhere near having a solid, accurate diagnosis do not try to treat yourself. You'll get a handful of "my favorite" fixes here but starting to try this and that will only delay the medical treatment you need and will mislead any doctor you see.

Avoid general neurologists unless they can demonstrate a good background in diasnosis/treating headache. If at all possible----
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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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

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Given your history, I'm pushing you on finding a good doc because there are a number of disorders which mimic Cluster headache but which are NOT headache disorders. So, without a skilled doc, it's possible to end up trying to deal with the wrong disorder.
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If you think that you'll be staying with us:

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Please, keep us informed...

Ace - Yes as Bob said - see a Headache specialist as quickly as possible.  Be relentless - most likely the good ones will have a month or more waiting list - call everyday for cancellations.  I had to go through this and it was the best decision I ever made.  You need a clear diag and proper medical care ASAP.

But as Bob said as well - we have favorite tricks that we recommend.  Of course do not delay getting a proper diagnosis, but this doesn't hurt to get started.  First one on my list is the Vitamin D3 regiment.  Its all over the counter stuff - very in expensive, and pretty healthy for most folks.  Follow this link for the details. 

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Batch is the "creator" of this regiment it has a good success rate of helping folks deal with CH/ Migraines.  When you do get in to a see a Specialist, ask them to get your blood drawn for Vitamin D3 levels.  This will help you see where you are starting from.

Also, do the episodes seem to come at the same time during the day / night?  Do they seem to wake you from sleep?  That is a clear pattern of CH.

Ace,

Welcome to CH.com and thank you for your service. I'm familiar with your MOS and indirect fires although I spent most of my time working with Army 13F and USMC 0861 FOs developing and fielding a lightweight hand-held targeting system that fed digital call for fire messages to AFATDS over SINCGARS.

You've come to the right place.  We can offer thousands of years first hand experience dealing with cluster headache, what works best for most of us to control and prevent the terrible pain and what doesn't. 

Unfortunately, we cannot and will not diagnose.  That said... amongst us, we've found a number of excellent headache specialists who have proven experience diagnosing and treating cluster headache and other trigeminal autonomic cephalagias (TACs)... we just need to know where you live so we can point you in the right direction.

It appears you've run the gauntlet of military physicians and neurologists with all the neuro-imaging and still come up wanting...  That's not surprising.  At least there are no apparent abnormalities... 

Cluster headache is an orphan disorder with less than 1 tenth of 1 percent prevalence... Most neurologists have never treated a cluster headache sufferer (CH'er) much less observed a CH'er present with a classic CH...

The next time you have the opportunity, ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3.  The normal reference range is 30 to 100 ng/mL, but most knowlegible endocrinologists say anything less than 50 ng/mL is deficient.

I realize the following may sound like it's coming off the wall in left field, but it's not bum gouge...  The odds are very high you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches...

As CH'ers we need to keep our 25(OH)D serum concentration close to 80 ng/mL. You can read more about treating a vitamin D3 deficiency and how it prevents CH at the following links:

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

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

We've also found this treatment helps prevent migraine headaches.

Take care and please keep us posted.

V/R, Batch