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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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I assume you have a medical Dx of Cluster? Seeing a headache specialist or ?

Predicting the outcome/development of Cluster is so impossible that the only outcome of trying to divine the future is to increase your anxiety & disability. See:
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Developing your knowledge of how to treat yourself, gaining confidence in your abilities to manage your life with Cluster--these are skills which will give more comfort than any brooding about the future.
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With a new Cluster situation, changes in your experience is very common before a stable picture develops. This is the period where working with your doc closely & often is needed to try varying doses and meds to find the combination which works well for you. This is a frustrating reality but that's the reality for most folks.

Your present Verap dose is rather low, as you will have seen from reading other messages. So, suggest you print out the PDF file, below, and use it as a tool to discuss options with the doc. (Since this is from a solid medical source, it should give you some leverage in the discussion.)
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Trust you have explored the buttons, left, starting with OUCH for some basic learning. Also see,




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]
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Strongly encourage you to avoid the temptation to move from "cure" to "cure" quickly, seeking a fix. Most of us have our favorites but it's a barrier to make quick decisions about changes without some rational decision making worked out with your doc. (And if you don't trust your doc's knowledge/skill now--it's time to make a change.)
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At some point, it would be helpful for you and us to work on specific questions/issues.

Patience!

Ok, I updated my profile.  I live in Miami, Florida.  I am currently seeing the same neurologist that previously treated me for migraines for the past 10 years.  I like the familiarity and the fact that he knows my history.  He was the one who recognized the change in my symptoms and diagnosed me with CH.  I find him to be a good and open-minded doctor, though I would not necessarily classify him as a CH specialist.  He is a life-long migraine sufferer, and he does not shy away from trying anything and everything because he feels he understands pain and the fact that everyone responds differently to different treatments.

I appreciate all of the information you provided, and it seems to me the answer is that everyone is different and that I should stay the course until it seems the course is not working, keep in contact with my neuro, and basically come to terms with the fact that this is a part of my life now and I have to be patient while I learn the best treatment for me.

Thanks again.  I have a follow-up in a few days with my neuro anyway, so we'll see how it goes.  Perhaps an upping of my Verapamil dosage is in order.

Quote:

I think that he can only imagine the pain of clusters.
If you dont have them...you dont know.
My best advice besides listen to Bob is study. You are your own best judge. Knowledge is power when battling CH. Study up on 02, and basic known information.
Here are the traditional treatments.
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For alternatives...study first!
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National Headache Foundation
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Here's another good one...Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
That is just the tip of the iceburg. There is much more.
the more you know the better the fight.
the bb