I'm new here. My 21 year old daughter is the CH sufferer. She has an autoimmune disorder that is very debilitating. Six months ago she started getting the headaches at 10pm every night. I took me until now to figure out what they were. One of the most crippling symptoms for her is that for 4 days out of every 9 she falls into a psychosis with ugly hallucinations. The 4 day psychosis is very timely. She's been going through this for over two years. When the headaches started that was yet another very timely symptom. I'm wondering if any CH sufferers also get severe anxiety or psychosis that last for several days goes away and then returns on a schedule.

Anxiety is common with Cluster but not more serious mental symptoms. I'd encourage you to find, if all possible, a headache specialist who can guide thru this most unusual and complex situation.
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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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These may or may not be related problems but only careful, skilled diagnostic doctors can resolve the issue.

Before I got control of my CH with a combination of an effective preventive and abortives I dreaded CHs, especially when they were arriving like clockwork at precise times. I doubt there is anyone here who when in cycle isn't at least apprehensive about getting a CH at the wrong time.

However I've not heard of the combination that you mention, so this is not a straightforward case. You'll need to work with the appropriate doctors with the right skills and experience in each area, plus get them talking to each other so that the treatment plans for each area work together.

I'm sorry to read about your daughter's medical situation - you must be so worried for her!

I hope that she gets a headache specialist's advice, as recommended above.

There is some thinking that both auto-immune conditions and cluster headaches are caused by low Vitamin D status.


Quote:

Low D affects all the blood cells and can cause ane­mia, autoim­mune dis­ease and cancer: There are D hor­mone recep­tors on the red and white blood cells. When the white blood cells don’t have enough D they get con­fused, they start attack­ing our body by mis­take. All of the autoim­mune dis­eases: mul­ti­ple scle­ro­sis, lupus, rheuma­toid arthri­tis, pso­ri­a­sis, and ulcer­a­tive col­i­tis, are related to low D hor­mone. Our own white blood cells travel through our bod­ies at night seek­ing out and killing can­cer cells. Thus, increases in breast, colon and prostate can­cer are also believed to be related to low D. Women with breast can­cer who are told they “can’t take hor­mones”, (mean­ing estro­gen), should still take D hor­mone. The right D level (in addi­tion to nor­mal sleep) helps the body’s own immune sys­tem fight cancer.

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More info -
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The proper supplement regimen of D3 and cofactors is here (scroll down):
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I would advise doing this under medical supervision.

Best to you.