My husband has suffered from CH for approximately six years.  Meds and remedies have all been tried to no avail.  Recently his usual cycle is completely out of wack.  His bouts are more frequent, coming all times of the day or night.  The one thing that has me concerned now is that his eyelid is remaining droopy all the time.  Has anyone had or heard of a permanent  residual involving the eye?

Hi,
Has your husband had a definite diagnosis. Tell us where you live as the availability of treatments differ from place to place. Also, tell us what meds you have tried and what doses etc.
Maz.

Hi WenJ,
Sorry to read you two are going through a cycle. 

Have your husband and you each read (self educate) as much as you can from this website as it has more credible  information than anywhere worldwide. 

Medical professionals come to this website looking for answers from us, so we can steer you in many directions; hopefully one direction works well for him.

I recommend reading the oxygen info (yellow tab to the left side of the screen) and getting o2 for aborting attacks.

I also recommend reading a thread in the medications, treatments section called "123 days pain free" which details an anti-inflammatory vitamin regimen that has proven effective for most who've followed protocol.

Where do you currently live?

-Gregg in Las Vegas

You have two difficult medical issues to handle and it will require two medical specialists to work collaboratively to handle them.

The difficultly getting control over the Cluster suggests finding a headache specialist--not a general neurologist--to both confirm the diagnose and help find a better treatment plan. Then how that plan interacts with the CA will be an important issue requring the collaboration of two docs.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. 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.

5. 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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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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Please stay in touch...

Cancer is definitely your biggest concern,  but I understand how the clusters can be the bigger immediate problem. The D3 regimen may be able to help, as could oxygen if done correctly. There are threads on this forum that provide very accurate detail in how to go about these methods of treatment.

You asked about the drooping eyelid. You know it is not unusual during an attack to find the affected eye drooping. I am chronic and at high chronic cycle (yes, we have cycles too) my eye would not return to normal before the next attack. I think it was more a product of one attack after another and not fully recovering in between. You really should get high flow O2. It is the best all 'round abortive especially coupled with Monster or Red Bull. blessings. lance