Welcome Home Barb,

Sorry you had the need to find us though.

As you stated, I am not a doctor, but it sounds like you might possibly belong here.

The thing that concerns me about your post is the O2 script.  I know that people with COPD cannot tolerate a flow of over 4 lpm.  I don't know if that applys to other types of lung damage or not but if your doctor didn't specify a high flow therapy, I would hesitate to use it just because I had the necessary delivery equipment already on hand.  Thats just my opinion and I'm not trying to circumvent your docs diag and treatment.

Hopin you find what works for you and get some painfree time soon.

Dallas Denny

Hi Barb,

I hope you're able to get that lousy charley horse outa your head! 

Sounds like you've been digging in and researching, so good on ya for that!!

Also sounds like you may have already found the info in the link I'm inserting here, but in case not, and if you're continuing on with imitrex, this info has proven to be invaluable to folks here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

What Bob said about imitrex pills. Most of us find them ineffective compared to injections/inhaler.

Given your doc's experience I think his present approach to cluster is conventional and o.k. Going to send along a couple of lists of standard treatments to use as a discussion tool with him and an article on cluster which will help you to understand the disorder.

Get back if specific questions arise.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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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--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]

Being "special" is your contribution to all of us! Medicine only learns from trials/testing and when you realize that barely 30% of all conventional treatments (for all medical problems) are deeply gounded in good scientific evidence, well, you begin to see just how much we DON'T know.

So, thanks for your participation....

Thank you Lefty. The attachment came through just fine. I will share it with my dr. I think he has already ruled out something like this because I did have an MRI, although not with the contrast they recommend. Maybe I should have it redone with contrast because it has been several years. I will ask. Also, both my CH and TN are pretty classic - I get the tearing and nasal congestion with the CH, and several things trigger the TN part of it. The weird thing is that they flare up at the same time, the TN usually preceeding the first CH by a few days. Then they settle down at the same time.

Although having something wandering about my brain is not a happy thought, it would be nice if there was a one-time surgical solution rather than the cocktail of wonder drugs I am taking now.

thanks again for the help
Barb

2behealthy wrote on Feb 4^th, 2010 at 1:26pm:

       Where's Kreskin when ya need him?

          Potter

This is very interesting to me!  Please keep up the posts here as well!  Good luck!!!

Oh, I'm so sorry!  Keep us posted!