Hi Everyone,
I stumbled upon this website after having yet another CH.
A little bit about myself:
I was properly diagnosed with CH's last year after suffering for the last 8 years. I was on zomig when I was misdiagnosed with migraines at the start as I had no idea what a CH was. Obviously zomig had no effect and was grossly expensive.  I tried numerous preventitave treatements from feverfew to massage therepy with non really helping at all.
I am currently in the second week of my second cycle of the year (luckly I am not a chronic sufferer). The medication that I am on is 20mg of Relpax.  I take 1 at night to prevent the alarm clock CH and if needed take them at noon to help prevent against an afternoon attack. Unfortunatly today, most of my co-workers witnessed a full blown attack as I had run out of my meds.  It was pretty embarassing as I was literally weeping.  The meds do work, however I find that I am ripping though alot of these.
Anyway, I am glad I found this site and don't feel so alone as no one in my area knows what a CH is or how it feels. 
I can't wait for the day when they figure these things out and have some sort of standard treatment so that if my condition gets passed onto my son he doesn't have to suffer like I have!

Hey Lilwheal

Welcome aboard.  Another Cannuk fits in real well with this diverse bunch of clusterheads... 

You might want to see your PCP for the lab test for 25(OH)D.  It a metabolite of vitamin D3 that's used to measur its status.  We've found that most CH'ers are vitamin D3 deficient and it appears this deficiency is contributing to our CH...

The normal reference range for the serum concentration of 25(OH)D is 30 to 100 ng/mL.  Any concentration over 30 ng/mL and the docs will say it's normal...

That said, we've a lot of CH'ers who have gone in for this lab test with active CH and they've all tested between 10 and 60 ng/mL.

The great news is CH'ers who have gone on the anti-inflammatory regimen with 10,000 IU/day of vitamin D3 and all the cofactors and experienced a favorable reaction with a significant reduction in the frequency and severity of their CH or gone completely pain free and then gone in for this lab test have all tested in a range between 60 ng/mL and 110 ng/mL.

Don't let the dose of vitamin D3 or the responding serum concentration of 25(OH)D spook you.  It would take a vitamin D3 dose of >40,000 IU/day for up to three months to elevate serum 25(OH)D up to the lower threshold of vitamin D3 intoxication at 200 ng/mL.

Check out the following two links and let us know your choice of treatment...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted

V/R, Batch

Do you have oxygen? Read up on the oxygen info link on the left. Miraculous stuff.

Thanks for the info.
Funny thing is my wife runs a Mineral Solutions business.
They deal with minerals mainly in liquid form.
She is meeting her supplier in the next month or so and is going to pick his brain(no pun intended lol) about CH's.
I will keep everyone posted. 

While zomig never did me much good, as one of the triptans it is indicated for CHs and has worked for some here. You don't say what you were given beyond relpax. This too is a triptan and not generally prescribed as a preventative but rather as an abortive. Just curious. blessings. lance

My doctor is very unfamiliar with these types of headaches admittedly.  ZOMIG did worked at the beginning as long as i took it at during onset . My pharmacist found it odd that I was taking relpax as preventitave. I find it works both ways.

Re. your last para: There are good treatments available and there are docs who know how to treat you.
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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. 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.

5. 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.

6. 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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See the PDF file, below.

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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]

Welcome!

Main question really do you have oxygen? And at what litre per minute?

And while it might feel unfortunate right now that they saw it happening in the long run it might be for the good so they realise you don't just have "headaches" but something quite... different.

So... Oxygen?
Oxygen... Oxygen... Oxygen... Oxygen... Oxygen...
You get the idea.

Yeah I am getting the hint lol
Now I just need to get the ol'doc to get on board.
As for meds, I am only on relpax, haven't tried anything else.  When I went to get my prescription renewed he told me if I go through these and find they don't work,  then he was going to send me to a specialist.  I'm lucky to have a good relationship with my doctor as I have known him my whole life and he is a close family friend, so I am pretty sure that I can "recommend" something as an alternative and it not fall on def ears.

So I went to the doctor today as I been ripping through Relpax prescription really fast and haven't been working.
After pulling out his giant blue book ( I almost laughed at this point ).  He put me on Maltrax.
I did bring up oxygen and surprisingly he wasn't really that receptive.  If the Maltrax doesn't work then I will get an O2 outfit on my own.
I was hoping to avoid that as I have a really good benefits.  He is retiring in May, and as much as I do like him, change might be a good thing.
I go back in 2 weeks to see him(sooner if Maltrax doesn't work). 
In the mean time I am going to start pricing out my out O2 set up.

WOW New here but have gone through all test. Just looked and my D3 is 26 and PCP said to take 5000 1 a day may help. He is doing his research as I am his first CH. I have been through all test. MRI,Cat Scan blood test. Nero, ENT thank god for insurance as This has been running the gamot. Started on anti biotics as PCP said sinus infection. That was 28 days of two antib and antifungal. 28 perscriptions in month and a half.  This site is helping.. Any idea how much feverfew and butter bur help? How much to take?  How much D3 to take? Thanks

Quote:

After pulling out his giant blue book ( I almost laughed at this point ).  He put me on Maltrax.

Lilwheal, I know you like your pcp but clearly he's out of his depth on this one. He'l treating you for migraines which is of very little use when treating clusters. I'm sure he means well and all that, but you're the one who will pay the price in pain and suffering. Get a specialist, or a referral if you need one. You'll be glad you did. blessings. lance

Well the new drugs (Maltrax) don't last when they kick in.  Not to mention they are no good when I wake up with them, like this morning.
I count myself lucky (at the moment) that I only usually suffer from 1-3 a day during my cycle, with only one of them usually being over a KIP 6.
I am hoping to be out of the cycle soon as this has been the longest one that I have had for a long time.
I have a feeling I won't be though.... 

Always assume your cycle will never end. Keep pushing your doc for a treatment plan that addresses an effective prevent and a fast abortive. Worst case scenario the cycle ends and your armed to the teeth for the next cycle. With CH, there's ALWAYS a next cycle. ;)

Joe

OK, oxygen. You can continue to suffer, or you can abort completely with oxygen in 5-10 minutes and walk away clear headed (at least it is that way for almost all of us). Any doctor you go to, whether it is your PCP that knows little about CH, or a headache specialist, they will want to start you on meds and send you home to see how well they work. It may take a long time to find what works for you. Wouldn't it be better to know that whatever they give you, works or doesn't work, makes it better or makes it worse, that you can always abort an attack quickly with oxygen and get on with your life?