I've been having headaches for years; they were suposed to be from my sinus problem. I had surgery in 2006, but the headaches continued, as well as the tooth pain. After visiting several dentists and doctors, they all agreed I was fine about my sinus and my teeth. Last week I went to a neurologist and described what I've been feeling: headaches on one side of my head, and eye and tooth pain on the same side. The headaches could last up to two weeks, until November, and disappear for months, come back again for a week or two, and so on. On November 18, the headache came back, as well as the eye pain (so much more severe), and the tooth pain, and I've been with the headches  pretty much every day since then. When the doctor told me about the Cluster Headches I started researching online and found out that I had other symptoms that were not related with the headaches, such as tearing eye, drooping eyelid, and congested nose. So, I have all the sypmtoms I've read about cluster headaches, the only thing that makes me doubt the diagnosis is that even if my heaches and eye pain are intense, not like any regular headache, they are not as instense as I have read here or in other articles.
Please advise me if there are different levels of pain, or if the typical cluster headaches are always as hard as described, so maybe I should go for a second diagnoisis.

Thanks, I would really appreciate your comments.

Martha

Hi Martha,
first of all welcome,
what you describe sounds like CH but only a qualified Dr can diagnose your condition.
as to the pain levels on the left is the kip scale wich gives a good indication of the different levels of pain we go through. allso there is the cluster quiz wich will give you a good indication of CH. I was informed from a german specialist at a seminar last year that O2 only works for CH so if O2 works to abort an attack then thats a very good indication but please dont quote me im not a Dr.
I dont allways hit the highest level allthough i have been there  :'( i mostly hit around 7+8 but since i started using O2 i abort before it gets too high within 5-10 minutes im pain free (untill the next hit). Allso keep a headache diary of you attacks this will not only help you but allso your Dr.
remember knowledge is power and the more information you can give your Dr the easier it is for him/her to diagnose your problem.
and last but not least keep your chin up and enjoy the pain free times (may there be many)

Mark (every womens dream but every mothers nightmare)

Welcome Martha!

Mark gave you some excellent info and pointers, I would only echo it.

I hope you find some relief soon!


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McGee wrote on Jan 6^th, 2011 at 3:33am:

Mark (every womens dream but every mothers nightmare)

;D ;D ;D

Quote:

So, I have all the sypmtoms I've read about cluster headaches, the only thing that makes me doubt the diagnosis is that even if my heaches and eye pain are intense, not like any regular headache, they are not as instense as I have read here or in other articles.

Way back in the beginning, when I first began having clusters, it was sporadic and mostly short lived, without all symptoms present at the same time. Sadly, over the months and years, they settled into a full blown 2x/year cycle of about 3 months in duration. Then, after awhile, became chronic. Not everyone experiences it this way. Some cycles are like seasonal clockwork, and some fade over time, some do not. The important thing is to become as knowledgable as you can (this site helps greatly) and arm yourself with effective (for you) abortives and preventatives. Good luck, and God bless. lance

Hi,
Thanks Mark and everyone for your responses. Today I got the oxygen tank and also the bill. Even if it is through my insurance, I still have to pay $115 monthly. Does anybody know if there is any place where I can get it cheaper? (I live in Florida.)
Thanks. :)

Shop around....I am positive you can get it cheaper with insurance.

happy you are have the O2, make sure its the right mask START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and the regulater goes high enough i use a setting of 25lpm although some go higher others use lower its a case of testing whats good for you. i abort in 5-10 min. im not sure about the insurance as i live in germany and its a different medical system but there are enough people to advise you about insurance and welding O2 is supposed to be cheap.

wishing you lots of PF time
mark

Especially with newly developing Cluster, the symptom picture can be quite variable, changing over weeks to years before settling down to a fairly stable pattern.

Your best posture is to work with a headache specialist, if you have that option. Many docs simply lack the training/experience to work with a disorder which is really quite complex. No single treatment is THE solution and patience and a willingness to try several different treatments is essential.

You haven't mentioned how you are being treated now. See the PDF file, below, for general picture of how Clusters are treated. Print it and use as a tool to discuss options with the doc. Oxygen is not the only response, albeit a most useful one.

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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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