Hello Ken and welcome.

(don't be angry with me if I tell you please try to use paragraphs.  it makes it so much easier to read and respond)

It sounds to me like the Dr. you are seeing is just taking  uneducated guesses at a lot of things.  Dr.s get exactly 5 hours of taining in med. school on headaches.  ALL KINDS of headaches so it isn't a surprise that a lot of them have their head up their collective a$$es when it comes to cluster headaches.  case in point: Quote:



Uh...was he trying to tell you to diagnosis yourself?  WOW...

Mind you now, I am not a Doctor.  I've been chronic for 22 years though and I do know a lot about this condition, but it sounds like it could be CH to me. There are links to the left of where you are reading this right now. 

medical info.
cluster traits
cluster quiz...etc.

All of the best info in the world is right here as well as on the O.U.C.H site to the left.    Read read read,  til you're smarter than the docs.  JK...

There is always someone here almost 24/7 if you need to ask questions or if you want to PM someone.  For instance I am in California so when the East coast goes to sleep I'm awake.    

Again welcome to you and please know that we're all here to help anyway we can.    Linda

Your picture is sufficiently "mushy" that I would not guess a diagnosis. Print out this entire article (link, 2nd line) and, after reading it, get back with specific questions.

Have you seen "cluster traits/quiz",left?
==========

 
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 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]

Thank you all for your quick responses, I am overwhelmed. There is so much information to absorb here!!

I am working my way through specialists and I think I am getting close to an accurate diagnosis.

I am unloading my GP of many years, he was just away for 8 weeks (LOL) and have had a meet and greet with a new fellow. I am seeing him again Friday and will discuss the Neurologists assessment then.

In the meantime I will continue to search this site and help myself and my wife better understand CH.

Thanks so much.

hi ken and welcome

Just having the pain behind your left eye is not suffcient to diagnoze the CH.

however I just wanna add some points which may help you to know the CH difference in addition to the CH quiz:

1. if you notice that your headache or attack is going to be started.(this is diffenet than Sinus pain)

2. If your pain is too strong that doesnt respond to acetaminophen or such normal pain relievers.

I wish you case not be a CH.


Farzad

Welcome to the site!  I hope you find out enough information to help get a diagnosis.  But until then...

"PIPER DOWN. WE HAVE A PIPER DOWN."

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