Hello,

For those of you who are veterans and have cluster headaches - I'm curious what rating they gave you.  I got a measly 10%, which is astounding considering that normal migraines can be rated as high as 50%.  I've tried to appeal and they keep telling me the max for CH is 10%.  I have a feeling that whoever came up with this number does not have any clue what CH's are.  If anyone can provide me with additional information, I would really appreciate it.  

Thanks!

 Hi Norm,  10% is where they start and you could get up to 50% for CH.  They will even give a 100% rating if CH makes you unemployable,  go to your local amvets and get a representative if you want your rating increased.
 You can PM me if you need more info.
   Phil 8-)

I know for sure that they can go up to 100%, my mom works for the VA. We've discussed how frequently she sees CH diagnosis, especially since this most recent thing- she doesn't know if it's just that they are getting to the right age or if all of the head injuries are increasing the number. It can even be rated as service connected if you never had CH before getting in.

The number depends a lot on how disabled you are, and you have to be incredibly thorough and include as much evidence as possible that you have a problem. Chances are if you are disabled from CH you have other diagnoses that you need to include in your application too- things like severe depression, and EVERY other health complaint you have. If you are tired all of the time because of constant CH, then chronic fatigue, insomnia, etc. My guess is that either you are not being thorough in explaining your symptoms at the VA hospital so they don't understand how your quality of life has been affected, or don't understand how bad CH is. This is not the time to be stoic or a tough guy. Educate both of you, and find another person to be an advocate for you. Perhaps a doctor at the VA or I'm less familiar with Amvets, but they may help.

Years ago I posted a bunch of info on how to determine how disabled you are. I'm sorry, at the moment I don't have enough time to look for that info. It seems to me that I got a lot of it from about.com on headache disability and another group that helps migraine sufferers prove they are disabled. Find that info and thoroughly cover EVERY aspect of your daily life that is adversely affected by CH. If you have one headache every night for four weeks one or two times a year and that's your only problem, you are not disabled. You simply need to adjust your lifestyle to work it around your CH. If like the chronics here you have 8+ attacks a day, at varying unpredictable times, you can't sleep more than 45 minutes, you are struggling with suicidal thoughts, you've lost interest in everything because it's very hard to survive, you can no longer support yourself, you are disabled.  The good thing about the VA is that as an organization they are set up to TRY and give you as many benefits as possible, but they can only do so if you prove to them that you need it. It sounds like you haven't. Try again, it's worth it.

*edited for typos and to add that I posted the links to disability rights info from About and MIDAS on my squidoo page, which I haven't updated in years: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

What they said, learn the rules, play the game.
If you have a Vets Affairs department at the county level, they are there to help in precisely this way.
Also, go to your Congressman's office, you have no idea the fear of God that strikes to bureaucrats when they see a Congressional inquirey on why they're trying to screw a constituent. I've done that a couple of times, works like magic.
I've always thought CH was part service connected, when I rode with the V/N Vets M/C, three of us had CH in a very small group, odds are staggering.
Should prob put in a disability claim, but I don't, bastards have done more than enough for me already.
Do get free Zomig from them off and on when civilian insurance doesn't want to pay.
Best of luck Bro,
Chris

The VA will go higher than 10%-up to 100% if you are not employable.  And yes, if the CH started in the service one can get service connected.  I am appealing to have my rating increased from 50% to 100% because of unemployability.  Takes meticulous paper work-descriction of how CH afects each aspect of your life and constant attempts.  Good luck-pm me if you'd like to... I am
a fellow veteran who has service-connected disability due to chronic cluser headaches.

kathy

  All the above advice is excellent. I just want to add another good organization to use. The DAV, Disabled American Veterans. Is also an excellent advocacy group.
[smiley=smokin.gif]

All great info.  I am currently serving at 19+.  I was diagnosed by a doc in Hawaii back in 04.  Really glad you brought this up.  

Good luck

Mike

Currently going through the process of trying to upgrade from current VA 10% compensation for cluster headaches. The most you can be rated for Cluster Headaches is 50%. That isn't to say you cannot be rated up to 100% for other disabilities related to your cluster headaches or caused by your cluster headaches (sleep disorder?) or the medications taken to treat them.
The VA rates CH under the same series as migraines (8100 series). A quick Google search should get you the listing of what they consider for 10%, 30% and 50%. To get 50% you have to have an economic reason like missing a lot of work.

How have they determined that CH or migraines are service related?

I was placed on disability retirement at 30% after 18 years of active service. Chronic CH
At my first reevaluation at 18 months after retirement I was reduced to 10% and discharged.  No change in medical condition, but the fact that I was gainfully employed was the factor they used to stop paying retirement and to discharge me. I was obvious the medical board was looking for an excuse to save Uncle Sam some bucks.

I struggled to stay active and with almost 21 years now, I am retiring...just went through the VA process, so we will see what happens.

Probably would not have made it in service without the insight of some of the people on site!! So a big TY!!

Mike

@ Bob P: They determined I was Service connected for CH because I went to Medical while I was in complaining of headaches and the Doctor that did my final physical got a detailed description of the CH in my record. After I got out I also went to the VA within the first year which I am told is way easier to get that initial rating. Got 10% then Dumb me never challenged it back then even though the description of my rating matched closer to 30% at the time. I was just happy to get to see a doctor as my headaches were getting worse. I didn't even know what CH was until the VA called them clusters and later CIV Doctors confirmed.

@ DetroitDrillSGT - Go to the DAV or American Legion (or other group of your choice) as soon as you get out and get and get them to help you file your claim. I did it myself and wish I had gotten some help. Do it before that first year is up. hadit.com's forums helps a lot with what to expect.

i realize i am late on this, but i got 50 then 100 permemanant,
find  a  good good service officer at the american legion and get all your ducks in a row

@on my knees: what were the exact service connections for? Was it 50% for Headache and then unable to work get you special 100%? or did you have multiple Service connected disabilities totaling 100%?

or you could just deal with your clusters, get on with life, and not worry about bliking the VA out of money for a condition that has nothing to do with your service.

Was going to delete my above post but I have no modify nor delete buttons for some reason.  I retract the above statement.

Bob P,
No worries about your post. I did exactly as you suggested. 18 years active duty in the US Navy, disability reduced from 30% to 10%, (so I didn't qualify for retirement pay), I got severence pay and a boot in the ass. Lost all military benifits. I was a very bitter guy for a while.
After I got over myself, I started life again. Went minimialist about the Clusters, stopped all medications and made sure I had O2 available always. I went as far as taking a job as a network engineer in a hospital so that O2 was available anytime I was at work. I was at that job 4 years and no one ever knew I suffered clusters!
I refuse to let them be a large part of my life. It is a minor inconvience that I deal with.
Can't say this approach is the answer for everyone, but for me it was the right path. Life is GOOD!

Thanks for the retraction. Guess I could have been more clear in how my CH are considered Service Connected besides the fact I went to medical complaining of headaches.

Never had a headache until after I returned from the Gulf (90's). I got the first one about two weeks after getting back in the states. It could have been a coincidence. It could also be a coincidence that  most of the friends I keep in touch with from back then get the same headaches.

I don't know what caused my CH to happen if anything. All I know is when they started and that there is a large group of people I know that got them that went through the same things and places I did.

It is the right of every Veteran to apply for their benefits. They are not easy to get. Their has to be documentation in your military medical records. I had enough documentation to get 10%.

Bob p ,pay attention to your monkey . Novellred hope I grow up to be just like you .

My monkey gets plenty of attention!

Hughie wrote on Apr 8^th, 2010 at 8:54pm:

more clear in how my CH are considered Service Connected there is a large group of people I know that got them that went through the same things and places I did.

This creates a curiosity, I don't think there is any other particular contingent of common experience or locality with documented affliction resulting.  A contained "large group of people" with CH would be of the rarest find from "same things and places" and should be examined for closer common factors, open also to a variety of things and places that may also confound to consider an incidence service related.

Just Google Gulf and Headache. You will be surprised how much documentation there is. Unfortunately as most CH sufferers know misdiagnosis of type of headaches are common. Headaches are lumped together in most statistics as if there was only one type. 

Hughie wrote on Apr 9^th, 2010 at 7:29pm:

Just Google Gulf and Headache. You will be surprised how much documentation there is.

Have you any sites to recommend that mention clusters documented? 

Wish I had the smoking gun for you. Unfortunately I don't have a paper that says that Veterans that went to the gulf and got exposed to....

Go to your local Vet Center (part of the VA) and they can do an initial assesment and then refer you to a local Veterans' group (DAV, etc.) and both will work to get your disability increased.  It may take a long time, but they are usually very successful.

Hughie wrote on Apr 10^th, 2010 at 11:49pm:

Wish I had the smoking gun for you. Unfortunately I don't have a paper that says that Veterans that went to the gulf and got exposed to....

After 1986, Iraq halted the manufacture of Tabun and concentrated exclusively on Sarin, later an analogue of Sarin, Cyclosarin. 

British government research from the late 40s tested the minimum dose of Sarin required to trigger miosis (pinpoint pupils).  In 1950 they began to test slightly higher doses to measure the severity of initial symptoms, which were: runny nose, headache, vomiting, miosis, and eye pain. 

A similarity of symptoms can occur with low-dose exposure.  It is fairly understood how these agents act and was looking for any comparatable data out there.  This is why I was curious.

It sounds like you have read a lot of the same stuff as I have but the Sarin Gas theory is one of many and even though headaches are on the list of ailments "Cluster Headaches" are not specifically diagnosed in any list I have seen.

Quote:

It sounds like you have read a lot of the same stuff as I have but the Sarin Gas theory

Very likely different sources, unfamiliar with the theory.



Quote:

"Cluster Headaches" are not specifically diagnosed in any list I have seen.

No, hasn't, but was interested in the acetylcholine and cholinesterase operating in a biochemical on/off switch, when the threshold of enzyme (cholinesterase) depletion is reduced to about 50% by repeated low-level exposure. Complete physiological recovery takes place only when the nervous system has restored its reservoir of this enzyme, a process that may take several months.

Despite differences, though some familiar symptoms, because of this similar duration to an episode of CH, a mechanism may be possibly working in a likewise manner.

I have been being treated for CH that started originally in 1988 while on active duty. Over the years I have had them in groups over 40 days at a time.

Due to loss of job over them the VA started paying me for non service connected injury at 60% while trying to disavow my line of duty injuries.

The funny thing is that they are saying that its not that bad or have denied that I suffer even though my neurologists at the VA have now put me on steroids and tons of other crap as well as having me carry injector syringes that if I have to inject more than two I have to go to the VA ER immediately if there is no relief.

Currently at this time I am seeking a re-evaluation but the VA is masters at denial.

Rock,

It really comes down to what was in your medical record for the VA to deny or approve. They look for a history. Check out the hadit.com forums for information on VA claims. They gave me some good advice.

hello my first time replying
ive been chronic for the past 8 years
I was rated 50% from va feb 2010
I had first cluster in 96 after I got anthrax
series I was episodic then I was discharged in 97
after 13years I had lots of problems all from the vaccine  I went chronic in 03  va couldn't find some of my med records
I found several treatment records in my stuff
it showed the air force doc thought I had clusters lucky I found those couple of papers I went from 50% to 80%
but I'd trade all the money in the world for my life back!!!!!!!!
good luck.

PMH,

Welcome aboard...  You've come to the right place.  We know what you're going through with the cluster headaches...

Please check your PM inbox at the upper left corner of this window by clicking on "1 New Message."  I've sent you some information that just might help...  no trade needed.

Take care brother,

V/R, Batch

Hello,
I'm at 23 years in the Navy and will finish out with 25+. I had migraines as a kid and young adult in the Navy and they slowed down to maybe 2 a year. About 36 months ago I started getting these crazy headaches that I swore were sinus headaches. They would come on about once every 3-4 weeks and last for about 5 days. I would practically OD on sinus meds to get rid of them and it still didn't work. After suffering for about 2 years..I finally went to medical. There I argued with my PCM..I was convinced I had sinus troubles and she was telling me I was having migraines. After an hour I started to believe her. She didn't do anything for me except keep trying different meds..none of which worked. Another year goes by and I said..screw that idiot PCM..and went to the emergency room..that doc set me up with neurology who in turn diagnosed me with CH. Especially when I told her of the unbelievable pain and there is absolutely no relief or way to get comfortable when I tried to sleep. Since my diagnosis..I have noticed my headache never really goes away..it's just a matter of the level of pain. I take the Imatrex shots, varapamil, and O2. The shots seem to help the pain subside..but not really make the headache go away. So, needless to say..I worry about finding a job that will understand when I can't work 10-12 days a month because of these frigg'n headaches! If I understand everyone on here correctly..If I can show that I could be unemployable..I could get 100%??? So, what does 100% mean? Any help is more than I know now!
"Elvis"

How in the world did any of you get the VA to even acknowledge cluster headaches?  My psychiatrist at my VA clinic is the only, ONLY, member of the VA Health(?) care system that seems to believe they even exist.  Every time I suggest cluster headaches to my doctors, I can see their eyeballs roll back in their head!  Unfortunately, the civilian emergency rooms I have gone to simple Perform a CT scan, charge me, and send me home with nothin!  I have been to my local VA Clinic and two VA health Care(?) centers (ie hospitals) neurology and general practitioners.
I have been suffering for 5 and a half years and have been basically laughed at, and brushed aside at every turn.  According to the Mayo clinic website, and WebMD, I definitely have 9 of 10 symptoms!

Welcome to the board Harold. I can't answer questions about the VA, no experience. CH is sadly an orphan condition, it's so rare most GP's will never see it. That's why we stress getting to a headache specialist neurologist, as that's your best bet at an accurate diagnosis, and an effective treatment regimen.

Hopefully someone with more experience at navigating the VA will chime in. For now, start reading everything on this board. The more you learn about CH and its treatments, the better the chance you'll recognize a doctor who has  clue! ;) What part of the world are you in???

Joe

Im not sure if I have paradoxical hemocrania or CH. I have gotten a good CT scan and have an MRI tomorrow. All I can say is that I wasnt like this before the military. I got out in 2009, and never got a final physical and I actually have the brown folder with all medical records. After my MRI tomorrow, I was thinking of putting in a claim for disability. Sleep, constant tiredness and these headache are going to make it hard to be employed full time. I heard that going to your local DAV is the best bet.

VA form 21-0960C-8. This form is something the VA Nero fills out im assuming. Im going to try for this and have my local DAV help fill out all the paper work.

Just wantes to update...stoppes taking all meds ( indomethcin)  for the past three days.... no headaches. Seems ti be gettinf better everyday. Must be sonething else.

Woah, spelling errors.  But I hope y'all are having pain free days!

Jamasses....glad to hear you're pain free. When you find out what type headache, clusters or not, you have please came here and let us know. Many people come here with headaches that are not clusters. You experience and knowledge can help us guide other non-cluster sufferers.