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4 years chronic headache/facial pain. CH and ?

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Hey everyone,

First time posting here. Have some questions, but want to give my background first:

In Jan of 2016 I started getting the worst headaches I have ever had. I always had some bad headaches here and there growing up, but never too chronic and I never had to seek out any medical treatment. These headaches were something special. Always right sided, around my temple and eye and just absolutely debilitating. They started about once every 2 weeks, then once a week, then every day. The worst thing about it was there was a lingering pain between the headaches that just never went away.

Cut to almost 4 years later and I still have pain almost every moment of everyday.

In that time I have tried every class of medication for headaches, occipital blocks, SPG blocks (nasally), surgical removal of a pituitary adenoma as well as several holistic methods of treatment.

I know this is a CH forum, so I will get to that point. While my pain was always constant and fluctuating after the initial attacks, I didn't have what could be considered a cluster period till around March 2018, when I had consistent severe attacks that fit all the CH criteria. It made me think that perhaps the initial onset of the pain was somehow CH related. I was prescribed verapmil and prednesone during that time, but they did nothing to end the cluster period. It eventually ended after about a month and I was back at my usual constant fluctuating pain levels.

About 3 weeks ago, I started having the same CH type of headaches again. Always around the same time of day and I cant seem to get any relief.

What my real question relates to is the constant headache/facial pain I feel between these cluster periods. Does anyone have constant unremitting pain between cycles? Can this be explained by a diagnosis of CH? Do I have overlapping disorders?

I have seen multiple neuros and have had imaging done but I have never gotten a clear diagnosis around any of this.

Additionally, I can sporadically get headaches of a differing variety that throb intensely when I change positions (almost orthostatic) that don't respond to any medication.

I suppose I'm cutting out alot here because I have a pretty extensive medical history, but for TLDR, has anyone had, or heard of, a constant fluctuating headache/facial pain between cycles being solely attributed to a CH diagnosis?


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Given your descriptions, you might consider looking at hemicrania continua (HC) as a possibility, which would involve finding out whether the drug Indomethacin takes the pain away.  https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page    It doesn't sound like you have used the standard CH abortives, oxygen and triptans.  If you did try oxygen properly and/or triptans (Imitrex; sumatriptan; etc.) in a proper form (nasal spray or injection), and they didn't work, that would strongly support an HC diagnosis.  Some people with CH have pretty constant pain in the form of "shadows," but I think that's pretty rare, even in people with chronic CH.  That verapamil didn't address your pain doesn't say much either, unless you took it in strong-enough doses over a long-enough period of time.  Prednisone usually at least stops CH pain for a while, but not always.  So that med history doesn't really tell us much, but it does again lend itself toward at least checking into HC.

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I did an indomethicin trial in 2017 to rule out a HC diagnosis.

In 2018, I tried verapamil at a max of 480mg daily for about 3 months but it didn’t really effect the near constant pain.

appreciate the Input.


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