hi, I am new to the board but I've been reading the posts here for a few days now. My husband has been getting CH since he was 19 (he's 36 now). They are usually cyclical, happening at the end of the year. However now we are in the middle of a cycle and it's spring. He  had an cycle Nov last year so it's really unfair to be hit with them again in April/May. We are currently in the 4th week and the sleep deprivation, pain, constant shadows are really taking it's toll on him.

For what it's worth he is Australian recently living in the US. So November/December months are really summer in the southern hemisphere. He's been here in the US 3 years and this is the first time they've shifted months on him.

Has anyone encountered their cycle shifting due to moving hemispheres? And if so, why after 3 years and not in the first year?

He's been on various prescribed medications over the years which did little. In the past few years he's just managed the pain on over the counter pain killers and home remedies/ tricks. These include: heat packs (sock with rice heated in microwave), thermo heat pads, flushing of sinueses with neti pot, sniffing cold water, eating icecream, massage with tiger balm liniment, application of Head On migrain strength, sitting in steamy room, drinking hot tea. We've lately added Red Bull and eating hot spicey foods such as jalapenos, wasabi, etc. We tried ginger for the shadows but it didn't take them away, just "confused" them and gave him stomach cramps. Taking Melatonin seemed to make things worse - or do nothing - it gets really hard to tell. The preferred pain killer of choice is liquid Ibuprofen gel-caps but they only do so much.

We recently tried RC seeds, the first dose was very conservative and he had a good night's sleep with the 2am attack delayed until 5am. A 2nd dose (still conservative quantity) did nothing and he had a bad night. A 3rd dose of 30 seeds did nothing and he had a very bad night with an attack lasting 3 hours only to repeat briefly (15 mins) after an hour. So we are not doing the seeds again for a week to see if they changed anything, but I suspect the seeds were not fresh enough to be potent and the first night's relief was just a coincidence.  Unless it gets worse before it gets better? But I don't know whether to write off the seeds as just not workable for him or else he needs an even bigger dose or too stale to be effective. Too many variables to be sure.

Massaging at the onset or ending of an attacks is helpful. When I'm massaging I always find a knot in his neck or shoulder - it shifts position - can be up under the jawline, or ear, or down on the shoulder trapezoid muscle for eg - and rubbing that knot will help ease the pain. That is at the beginning or ending of an attack - during the full strength of the attack, massage of course is unbearable, and all he can do is pace up and down.  This knot can be very painful to massage - and it's not always a soothing relaxing massage. Other points are between the eyes, under the left eye, the temple, base of the skull etc.  As the attack dies down, massaging helps him to get to sleep.

I'd like him to try O2 therapy. Unfortunately he doesn't have a Dr in this country. My job today is to try and find someone to take him on as new patient quickly. How difficult is it to get a prescription for O2 or even Lidocaine?

It's very difficult at his place of work. He has no sick leave, and his work is not particularly understanding or accommodating. Colleagues have complained of the smell from the liniment and this week he's been bringing home a work phone to take after hours support calls. Luckily the phone hasn't rung once...

Add to that the general irritability from the shadows, the fatigue, the dread and fear of night time approaching, the sleep deprivation - it's all getting too much for him.

Forgive the long post, I guess I just needed to unload here.  Any replies will be appreciated.

Thanks for the reply and welcome Linda. We are living in the Dallas/Fort Worth area. My husband was given oxygen once in the ER dept many years ago when he was taken there during an attack. It did nothing for the attack and so he has been wary of it ever since. He's willing to try it again tho as he realizes the failure might have been to flow/timing etc.  From what I've read the trick is to take it at the onset of an attack, not when the attack has been going on for a while and you're screaming in desperation on the floor of the ER ward.

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

(Line 2 for link to whole article.)

 
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 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]

While I would never advocate getting a controlled substance without a prescription............

Welding oxygen and medical oxygen are identical, come out of the same filling tanks. If you can score welding oxygen, it requires some jury rigging, there are people on the board who are familiar with what's needed.......it might be worth a shot.

For oxygen to be effective you have to get on it as soon as you feel the attack starting. Your lungs must get ONLY OXYGEN,  no outside air, no exhaled air. I can abort an attack in as little as 6-8 minutes using 02. If this interests you, post a new thread asking for instructions to get set up with welding 02 and the smart guys will be right along.

Bless your heart for being a supporter...you guys rock.

joe

All righty then....we're getting closer.   Anyone in the Dallas/Ft. worth area chime in here to help her. ???????


We will try til our fingers can 't type anymore to help you sweetie.   hang in there.