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?