My story is sort of funny but messed up at the same time. Before iI tell my story I just want you all to know that I receive my medical care from the VA medical center where they tell me I cant do the O2 treatment because there is a lack of it in the VA and it needs to be reserved for older veterans with lung problems or have trouble breathing. Which really sucks for me.

It all started early 2006 where i was having a severe pain pin pointed on the bone where my eyebrow is located but no where else. My doc told me it was a sinus infection and gave me pain killers and antibiotics. The headaches went away after bout 2 weeks. I was lucky enough for the headaches didnt come back till Dec. 2008, but they came back with a very strong vengance as they were more intense than ever and was different than last time.. I went to the emergency room cause it was so bad and was yet again told I had a sinus infection, it was as if the ER doc wasnt listening when i gave my symptoms. After bout a month of 2-3 headaches a day I couldn't take it anymore and went back to the ER where I told the doc I had pain behind and above my eye, pain in my cheek and nose on the left side and even into my teeth, on top of my head and in my temple and ear. He diagnosed me with migraines and gave me some kind of migraine medicine that didnt work. I came back like 2 days later where another doctor finally noticed that one of my pupils was much smaller than the other and I was then diagnosed with CHs. She gave me some kind of pills that was mostly caffeine mixed with a pain reliever. It didnt work that well and I was given Verapamil (think thats how its spelled) and Zomig for the pain relief. The zomig worked for the CHs that were less intense but not for the intense ones. I had to stop Verapamil as my preventative because my blood pressure dropped too low. After on and off CHs for weeks at a time with 1-4 months between of no pain since Dec 2008 I am now on Valproic Acid for my preventative and 25mg Sumatriptan tabs for the pain relief. I can honestly say that at if I take the sumatriptan at the first sign of pain the headache goes away fairly quickly and generally doesnt return till the next day. I hope to one day get rid of these CHs for good and hopefully the info needed comes up on this site one day.

JasonM wrote on Oct 2^nd, 2010 at 2:47am:

I am now on Valproic Acid for my preventative and 25mg Sumatriptan tabs for the pain relief. I can honestly say that at if I take the sumatriptan at the first sign of pain the headache goes away fairly quickly and generally doesnt return till the next day

When finding something that works, it's hard considering rocking the boat, but with CH it's good to not get complacent.  Stick around, if needed, things could get even better.      

Welcome Tex.         :)

Welcome Jason!

Your story sounds similar to many others.  Stick around and read all you can.  You may be able to help someone else or find new ways to help your doc with your treatment.

Look into Welders O2 since the VA won't or can't help with that.

A Hearty Thank you for serving your country!
Wishing you many PF Days and Nights!

Ging...

Explore buttons, left, on oxygen. The "welders" approach is working for a number of folks here and I'm sure you will start to hear from thelm.

Explore the PDF file and the article below--both for overall learning about CH, but also to see options to Verap for prevention. Find a good preventive is really essential.

If the Imitrex pill is working for you, fine. Generally, it's not good for CH compared to the nasal spray and injection versions (which work more quickly).

Stick around and read, read, read. Like many of us, we need to more about CH than do our docs--just the reality, I'm afraid.
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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]

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How much Verapamil were you taking?

  some people need less than others.

Quote:

I hope to one day get rid of these CHs for good and hopefully the info needed comes up on this site one day.

Yes, this is our hope and prayer, too. Right now, no cure. But for now there are effective abortives and preventatives. Listen to the advice you've been given, explore everything, and who knows? You might be one of those lucky few who join this fellowship of suffering for just a little while and then you outgrow it. But as you've been told: do not get complacent. Be ready at all time! God bless. lance