Hello to all.  I am 42 years old and have been dealing with CH for more than 12 years (12 diagnosed-many more trying to get a diagnosis) and I can't believe I am just now finding this site.  My current active period started over 4 months ago and I'm getting hit 2 to 3 times a day.   The only relief I can get is from Imitrex injectons.  With this all being said I have a few questions:

- Has anyone noticed that the severity or length of their "active" periods increases with age?

- I have been seeing a CH specialest but my Dr. is taking a year off and with this current cycle going on for the last 4 months I'm at my wits end trying to find something to break the cylce.  Any ideas?

- I've been through 2 rounds of steroid therapy and other than gaining 10 pounds I received no benefit from this treatment.  What can I try next?

- I am already on 480 mg of Verapamil daily and it does not seem to be helping the CH.  I also have high BP so I take this to treat both conditions.  Is there something else I should ask for?

- I have an O2 supply but this works only sporadically and will never eliminate the CH pain but my help moderate it but I am limited by the flow my regulator will allow.  How do others administer their O2?

I'm sure I will come up with more questions but this is a start.  I'm going to keep examining this site to see what more I can discover.  Thanks in advance.

Hi Mike,

Spend some serious time reading this board and you will find a LOT of things to try.

On your O2 question: check out the link on the left side of your screen. For me, O2 is the magic abort treatment ONLY if I breath 100% at very high flow rates. At 25LPM, I've never had a "hit" last longer than 15 minutes and typically it kills them in 5-7 minutes.

I've been chronic for about 12 years and I'm one of those people who said that "oxygen doesn't work for me" for many years. When I bumped up the flow rate, my whole world changed. No, it's not a preventative so the CH's will return, but at least I'm no longer in the agony of yesteryear!

You can buy a high flow regulator online for $50-$75.

Marc

Verapamil alone doesn't work for some, but combining it with lithium carbonate sometimes produces better results. Probably in the 600-900mg range (along with your 480mg of verapamil). Did wonders for me for a few years. Now all I take is the lithium, at least for now. Seems Mr. Verapamil and Little Elvis didn't play well together, if you get my drift.

Edited to add: If that doesn't work, you might try getting a script for methysergide maleate (2-10mg/day). It's known by the brand name Sansert and is a derivative of LSD. You get most of the benefits without the hallucinations.

If you do get a script, you'll either have to get it from a Canadian pharmacy or have a compounding pharmacy make it for you. Can be expensive without insurance.

 
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 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]
===================

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

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:

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


 

Welcome to the board. You've already received some great info on the 02 therapy. Do read the link on the left, "Oxygen Info". Used correctly it's damned near miraculous how fast it chases the beast.

I'm one that lithium works great as a prevent for. At 1200 mg a day, it'll block 70-80% of my attacks. Between that and 02 I've almost eliminated the use of imitrex.

Steroids are the same for me. While I'm on it, no hits at all. As soon as I go off of it, they're back with a vengeance. As to age, I'm almost 49, been battling the beast about 30 years. I used to get 2 cycles a year, Spring and Fall, 8-12 week cycles, 2 hits a day, late morning and early evening. I hit my 40's they went all over the board. Skipping cycles, getting cycles that stretched 8 months. I don't know if they've gotten less painful or I just have such an arsenal to fight them with I rarely have to ride out a full hit.

Joe

O2  O2  O2

Go to the Medical section and see the PROPER way to use it.  High flow rate  and with the right mask - it's a lifesaver for a lot of us...

I can abort a hit in no time flat without meds.  Sometimes with the "high hits" (over a 6-7) I throw in a Red Bull, but most of the time I hit the O2 at the first sign of a hit and it works great.

Hugs BD

I am new to this board. Just found the site.  I am also a 42 year old male.  I thought I had migraines but this site has described my headaches exactly.  Imitrex kills my head aches, but my insurance will only fill 9 100mg tablets a month.  I am lucky to make a week on 9 100 mg tablets and that is just taking bites off the tablets.  I am on 120mg of verapamil and 10mg of amytriptalyne.  I am getting to where I am afraid to goto sleep, I fear running out of Imitrex and the doctors don't seem to understand.  I am going to ask my doctor for an 02 presciption.  These headaches are are taking a toll on every aspect of my life.  People at work do not understand.  

Mike,
    See my post below, yes I feel my cycles are getting longer, I'm 53  and my periods of remission have been getting longer as well. I was HA free for three years prior to this cycle, my longest remission period in 15 years.
     They still suck, pure and simple.
     O2 delivered at 15LPM knock mine out faster than Imitex injections, I will have a demand valve and be going to a higher delivery rate in place for the next cycle. Get a good non-rebreather mask, Lifegas offers the one I use and it helps greatly. Check into it. Great product and great people to work with, I have no affiliation to Lifegas, just personal experience. Good luck and keep up the fight.
Melatonin 12mg. an hour before bed helps me get through the nights pretty well, and you'll find a lot of info. regarding it's use. My Neuro. suggested changing brands as I was not getting the desired results, and I'll be darned if it didn't work. Sometimes they do throw out an idea that actually works ;)

O2 use for CH. No. 1. NON-REABREATHER mask the one with a bag. (nasal canula and rebreather are no good)

No. 2. Regulator of 10-15 LPM. Current research shows 15lpm to be the minimum suggested. Less can be affective but even more is producing faster results. 25 LPM is now quite common.

It is common that Doctors and Oxygen suppliers are not aware of the needs of CH patients, you may have to educate both. In many cases you will have to get what is needed on your own. This can be done by personal puchase with no prescription and no laws broken.

Mike, I'm '53 and all I can say is they have changed in my 21 years of CH. Your current cycle sounds alot like my last several. They last for around 6 mnths. Update that O2 and it will help a lot.

Don

gman11 -

While still very new to this board I have been dealing with CH for more years than I care to remember.  First - it sounds like you need to find another doctor.  It took me years to find a good one who actually knew what cluster CH is.  A doctor with some knowledge of this condition will give you a lager script for Imitrx but, more importantly, will reccomend other prevents like a higher does of verapmill, a steroid burst, lithium, etc.  Lastly - definitely get the script for the O2.  I am looking for the right mask and regulater based on all the positive comments I've received.  

Keep up the fight!

MikeCincy wrote on Feb 27^th, 2009 at 7:58pm:

A doctor with some knowledge of this condition will give you a lager script...

Now THAT'S my kind of doc!

I had my first steroid shot today....WHOOOOO.!
.....still afraid to sleep tho-