With the history you have outlined I seriously doubt that you could get disability.

For your personal well being, I should think that working with a headache specialist to gain control would be the better move. (You're still on active duty, I gather. Anyway to push your system for referral to a specialist now?)

If you must wait until retirement, then:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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The improvement in treatments for Cluster over the last few years affords real hope that you can gain control. But the avery primary care doc, even many neurologists, simply lack education/skill in this complex area.

Where do you think you will be living after retirement?

Are you using any preventive med or only Imitrex?

If no preventive, your doc is not up to speed on treating Cluster.

Consider printing the PDF file, below, and use it as a tool to discuss treatment options with the doc.

The low grade headache between major hits are discussed here as "shadows". If not too strong, the usual OTC pain meds will help as long as you don't use them too often (3-5x/week).

IF the doc talks about trying Verapamil as a preventive (the first line med we use), then drop the following on hilm. This is a widely used protocol for use use.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

While the information I can give you is just advice, I will say your best bet is to locate the nearest American Legion, VFW, or DAV (Disabled American Veterans) to your home of record, and they can help you immensely with getting and receiving compensation. Also, I severely stress the importance of getting your medical records copied BEFORE leaving service, in order to make filing a VA claim easier and faster.  The military/medical records storehouse is always backlogged on requests for information.

As to your questions, I will answer to the best of my knowledge. 

From what I have seen, cluster headaches are rated the same as migraines.  So initial rating will more than likely be at  10%.  This can be appealed, and the VA will give you the paperwork if you want to appeal their decision (I would definitely appeal a 10% rating, from what I've seen my husband go through with CH's).  The highest rating you can receive for CH's is 50%.  So no 100% rating from JUST the CH's.  But if you have other medical issues, they are given their own different rating percentage, and all together you may receive a higher overall rating.

The one good thing about having been seen while still AD is that your CH's will become service-connected and you will receive free medical care at the VA for them.  To possibly include free medication and oxygen as well. 

I know I have tossed a lot of information your way, and I hope that it helps you out some.  If you need anymore help, please feel free to PM me, and I will help you out as best I can.  This is probably one of the times I would HIGHLY recommend you don't go at it alone, but get a national service group to help you out.

((And FYI, I have personal experience with the VA, American Legion, and am currently certified through the American Legion to prepare and file compensations for Veterans))

Glad you are on Verap--but the present dose is low compared to may Cluster users. Not unusual to be in the 400+ range--why I sent the protocol, should your doc be shy about an increase.