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?

It sounds as though your husband would benefit from an appointment with his neurologist.  It is possible that there is something else going on in addition to the clusters.  Whenever there is a change in cycle, it is a good idea to see the doctor...

He also might benefit from the D3 regimen, after he finds out what is going on!

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.

Yes he was diagnosed by his Neurologist were we used to live.  He has been on Prednisone about 4-5 times over the past 5 years.  Lithium was suggested but he declined using it.  He has been on Verapamil, toprimate, as well as Tramodol(for pain. We have not tried the O2...it's frustrating that even practitioners don't know fully what CH's are.  Pain killers don't work and when you have to work and drive (salesman) those just are not  even a consideration. He has begun taking Melatonin after reading numerous positive results...and for those with CH's, he has even tried his head in the freezer, drinking Red Bull at one shot etc.  The neuro he began with basically told him there is no magic pill. They don't know why or how with regards to CH's.  Just have to find what works...wow, now that's encouraging.   We now have another issue to deal with and that is a recent diagnosis of stage 3 malignant melanoma.  Yes, they have have done an MRI of the brain and it showed nothing.  However with his upcoming appointment with the surgical oncologist, this is going to be readdressed and I plan to get a referral to another neuro to have the MRI re-evaluated.   

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

Thank you Greg for that information, I will look at it. We moved to Columbus, Ohio.....he sees all his oncologists at the James Cancer Institute, which is part of OSU Medical Center.  I am hoping that a referral to a neurologist can be obtained when he sees the doctor.

WenJ

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.
===
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.
=====================================================================
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.
======

Please stay in touch...

Hi WenJ,
Not all neurologists are familiar with effective CH treatment.

The following doctors in the Columbus area have all been recently suggested from others on this website who suffer from CH's.

Canal Winchester: Dr. Miles E. Drake, Jr.
Columbus: Dr. Miles Drake
Dublin: Dr. Abdelhakim A. Hussein
Upper Arlington: Dr. Daniel Jones

Hopefully this helps! ;)

-Gregg in Las Vegas

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.

Thank you so much for your help. We will be bringing all the information to the doctor on his upcoming visit.  Although with it coming in cycles (this one has lasted three weeks now) it may be that he will be out of cycle on his visit.  I have photograph's that I took to show her as well. 

Again, thank you all so much

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

Be careful, Adam. I know you are only trying to help but to assign one cause and one cause only to ptosis can be misleading. Ptosis is also present sometimes following a stroke. I'm not saying that is what has happened in this case but I am saying a persistent drooping eyelid is something a doctor should be consulted on. blessings. lance