Also, does anyone's vision get worst in the eye during attacks?

Please let me know.

Thanks,
campergal

Yes, and yes.

What you are describing are called phantom attacks.  They are not usual, but I get them occasionally, especially since I started hormone therapy a while back.  The occur the same time as I would normally get hit, and present all of the other symptoms including agitation, irritability, impatience, and the need to move, but without the pain.  I'll gladly take them over the full thing!

O2 still seems to be the abortive of choice for most here.

Jerry

There is a rare painless cluster. But if your experience is limited to a random experience ????

Current therapies:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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If you want a good overview to bring you up to speed:


 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

 

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.  Call 1-800-643-5552; 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.

Quote:

Zomig Nasal works well for me......but O2 is what I use 99.9% of the time.

Racer1_NC wrote on Jul 14^th, 2009 at 9:23pm:



Same here.  Zomig nasal spray is effective as long as I don't delay too long before using it - and I stay on the O2 to help the process. IMHO, it works better with O2 than without.

I will also repeat that it is very rare to have to need it now that I've discovered high flow O2, thanks to the folks here.

Marc

What has been going on in my head is like a precursor of whats to come...full blown attacks. Last cycle it started off like this as to tease.

The eye drooping and the pain is mild yet.

I did do more reading about Zoming and found it is used for clusters. I was  pretty ticked it said migraines!!

It's very expensive. Out of pocket was over $65 for 6 doses! That would be a 3 day or 6 day supply! 

Thanks guys you have been great.

Yeah Joe,

hubby saw the eye drooping and redness.

Hi Campergal. 

I was tested for sleep Apnea (actually have hypopnea) and given a CPAP machine.  I was told by specialists that there is no possibility the apnea would be a Cause of the CH, but that getting a good night's sleep would better prepare me to deal with the attacks!!  Was also told that the CPAP might help control the higher blood pressure that I have had with the CH, as well as the lack of concentration, the anxiety, etc.  Who knows?   
I understand not thinking straight.     But it was a good question!  no cause in Apnea/ Hypopnea...

Val

Campergal, you might want to PM Brew, he uses a CPAP machine too. Doesn't help his CH but has done wonders for him in other areas. Be worth yaking with him.

Joe

Went to the reg doc 2day and he said 02 right away!    Knew about high flow rate.  Also an open MRI. I can't take a closed. Not that I can take the open either, but he said it's been awhile since one.

Neuro and other med if needed...anything he said.

He seemed to know about it and said he has treated others.