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Message started by DWilson on Oct 28th, 2009 at 12:03pm

Title: Hello
Post by DWilson on Oct 28th, 2009 at 12:03pm
I have had cluster headaches  since I was  18 years old. They were not diagnosed until about 20 years later. I went to many doctors and had been diagnosed wrong many times, to many to count. Until I found a doctor who was familiar with the symptoms of cluster headaches and he started me on oxygen and antimflammatories and a referral to a neurologist. I have been on many drugs to help prevent  these attacks but have yet to find one that does work for me . The only thing that worked were the abortive medications. I have gone from injecting myself with DHE, Maxalt tablets, cafergot suppositories. Verapimil and these other types of drugs did not really help prevent or not seem to prevent these headaches. The latest drug of choice I was given was tegretol.
  During my attacks I found going to the emergency room usless as believe it or not they did not fully understand what I was  going through. I had one nurse ask my I kept coming back as there was nothing they could do for me. It is truly a bad place to be when you are having an attack and no one understands whats going on and how to help. The pain is so intense that all you want to do is die and you are willing to do anything to make the pain  go away. You get no sleep and are exhausted by the time your cycle is at an end. I wish I had known about this support group as maybe I would not have felt all alone in what I was going through.

dAN

Title: Re: Hello
Post by vietvet2tours on Oct 28th, 2009 at 12:08pm
Oxygen at a high flow rate will make the pain go away.

           Potter

Title: Re: Hello
Post by Marc on Oct 28th, 2009 at 12:58pm

Potter wrote on Oct 28th, 2009 at 12:08pm:
Oxygen at a high flow rate will make the pain go away.

           Potter


Yep.

Marc

Title: Re: Hello
Post by Bob_Johnson on Oct 28th, 2009 at 1:47pm
Your message is a fine synthesis of years of experience among folks here!

Now we have a good picture of our life mssing only--what can we offer you? Any specific questions, issues, for which you seeking help?
====
 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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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