Cluster headache duration

[bison91]

Hello, new to the forum and trying to see if what I have are considered cluster headaches. I feel like what I have fits most of the criteria, they come in waves where they are frequent for a month or so, followed by a month or so without them. Pain is severe, is on one side from the neck, sinuses and behind the eye. I've had these my entire life (33 year old male)

Where I differ is that they can last for hours to a couple days. Severity does change slightly during that period but it's very painful the entire time. I used to think I had migraines, but the more I read about clusters it feels more accurate.

Thanks you in advance to anyone who can shed some light on if this sounds like cluster headaches

[CHfather]

The specific cyclic nature of these (a month or so on, a month or so off), and the very long attacks ("hours" is not particularly unusual, but "days" certainly is), suggest to me that it's not CH that you have.   When you say "Severity does change slightly during that period but it's very painful the entire time," it does make me think of a condition that is a kind of CH "look-alike," hemicrania.  There are different forms of hemicrania (hemicrania continua (https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua) and paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment). Neither one is precisely what you have described, but you might be close to episodic hemicrania continua.

Hemicrania typically (but not always) does not respond to sumatriptan injections, which you might have been prescribed for a migraine diagnosis.  Hemicrania also typically (but not always) does not respond to oxygen, which would normally be a prescription for a cluster headache diagnosis.  So if your attacks have responded to either/both of those, it would cast doubt (but not conclusively) on a hemicrania diagnosis.  It's relatively easy to test for hemicranias, since they do respond to a drug called Indomethacin (when it is properly prescribed). 

Can you say something about what you have taken to treat your condition?  You might want to consider starting on the vitamin D3 regimen, which has been an effective preventive for many severe headache conditions. https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

[bison91]

Thank you for the response. I was prescribed sumatriptan pills years ago as a migraine treatment, had no results from it.

THC will lower severity about 1/2 of the time, inhaled works better than edibles. I do take OTC migraine medicine w/caffeine and use a topical called Stop Migraine on my neck and temple when I feel it start. I also make sure to keep up on water and electrolytes. These things combined are my regimen as soon as I feel one start and do help me feel slightly less pain most of the time. Rarely do I actually stop the attack from happening.

The number one thing that guarantees relief is a hot shower. It works wonders while I'm in there and for 5-10 minutes after but symptoms return almost always at the same severity.

Also I've noticed it's usually less severe when I sit or stand vs laying down. When I lay down it feels like more pain drains into my head for lack of a better term.

[CHfather]

Sumatriptan pills are a waste of time. Only the injectable version or an inhaled triptan really work.

6 minutes ago, bison91 said:

Also I've noticed it's usually less severe when I sit or stand vs laying down. When I lay down it feels like more pain drains into my head for lack of a better term.

One symptom of CH is the absolute inability to be still during attacks -- pacing, rocking, etc. are typical.  With untreated CH, there is often more dramatic activity.  I'm sticking with my guess that you don't have CH.  

You don't seem to have received much medical attention for whatever it is.  I think virtually any competent doctor, just going "by the book" for a migraine diagnosis, would have prescribed a preventive such as verapamil and an injectable triptan (Imitrex is the brand name in the US).  Also, the new migraine meds (if that's what you have), such as Emgality, seem to be quite effective (for migraine).  The D3 regimen that I mentioned above will help you a lot if you do have migraine.