My name is Brian and I've been reading this board and other information about cluster headaches for some time now. I was diagnosed with "transformed migraine" (now called "chronic migraine") in 2004 and experience cycles and symptoms that seem cherrypicked from the entire buffet of TAC's and migraine without neatly fitting into any one category. I am not sure if I experience cluster headaches or am likely to experience them (I'm 38), but either way, I'm interested in learning more especially from the people who know them best. I'm happy to be here. Below is my headache background:
As an early teen, I was 20 lbs overweight and had around a dozen classic right-side migraines with aura (blind spot, excruciating bizarre headache, nausea, vomiting, mild euphoria when it ended). At 16, I got in shape, became a smoker and heavy coffee drinker and they ended. But around age 19, I started having strange sensations like the presence of something in my throat and a thick intrusive numbness around the right side of my head, behind the eye and back of skull. It would come and go and there'd be an awful feeling that something was "off" that I couldn't put into words. It would take on a dry wooden quality at times and become painful but only to a moderate degree at most. I felt disconnected and unnatural, sometimes emotionless. I was put on Nortriptyline for two months at 24 but ended it due to it making life feel creepy. I had severe insomnia before events and exams from 23-25. I took a micro-dose of 5HTP a few times at 25 to sleep with success, and one time it briefly brought forth full migraine pain, which relieved me in some way cause I felt alive, real, and connected in ways that were rare during the constant dull pain discomfort and disconnection. Right before I turned 26, I started having migraine episodes every morning and finally succumbed to agreeing to try another antidepressant. So I started 10 mg of Lexapro which improved things on many vectors, sleep, stomach issues, feeling more real/alive, and headache. Been on it ever since.
For five years, I had no migraine level pain and the dull background pain and discomfort either vanished or mitigated. Then at age 30, I had the first of four headache "phases" with the following features:
-Each followed a major sleep schedule disturbance (trip overseas, death of best friend, getting very little sleep for days to accomplish something)
-Lasted 5-8 weeks.
-Migraine level pain lasting 30 minutes to 2.5 hours every day (sometimes twice) or every other day.
-Centered behind right eye.
-Often responsive to coffee.
-Vomiting, and feeling better after vomiting.
A couple of times the pain was so bad that I remember taking solace in the idea that one day I would die and there'd be a release. However, I was laying down most of the time, never paced, and the pain at its worst was still more undulating and pulsing. (I have heard cluster pain is relentless and without variation--is this true?).
I'm six weeks into the most recent phase, now on 7.5 mg of Lexapro and 100 mg of Lamictal since early 2017. The headaches are shorter and responsive to caffeine. But on November 20th, I took an Ibuprofren and the next day, I had the return of the more constant "moderate" version of the stiffness which hadn't really bothered me since the mid 2000's. Back then, I believed it constipated me and made things worse (I've often felt a lot better after going to the bathroom). I was scared that it came back, and noticed that when I drink coffee while it's flared, it makes my eyes roll around involuntarily as if they were in REM sleep. Additionally, I would wince or move my eyebrows around voluntarily to try to relieve discomfort and that has gradually become involuntary muscle spasms again, usually after having coffee. In general, my first cup of coffee doesn't hurt--it usually aborts the morning headache or oncoming morning headache. But later in the day, it leads to facial spasms and involuntary eye movement for the first 3-5 minutes. I've been doing more half-caffeine and decaf later in the day.
In contrast to the other headache phases, I'm having phonophobia this time which I've never had much of before. Have also had weakness, lots of yawning, and getting faint/lightheaded after talking too much. I could feel my heart pounding after I eat sometimes and have gotten a sense the room is shaking. At one point I was scared I was going to have a seizure (never had one before, but migraine and epilepsy are close relatives and can have symptom overlap).
Things have slowly started to improve as I've been able to sleep more fully at night. For two weeks, I would be awoken 1-2 hours after falling asleep by a bestial headache and have to abuse myself by chugging a can of Starbucks Doubleshot Espresso which did kill the pain. Then I'd feel not quite fully rested when I woke up and had to have real coffee to fend off the morning headache. Anxiety throughout the day, though that is also improving. Magnesium citrate helped once as constipation seems to aggravate my head.
During the non-acute pain phases, I have some symptoms associated with TAC's. Stuffy nose on the right side, mild sense of ear fullness, minor eyelid swelling, pupil constriction and awakening with "red-eye" in the right eye if not rested enough (tends to turn white again after coffee).
It feels like this "phase" is on its way towards resolving, though I had a set back last night because my cat woke me up in the middle of the night demanding food (he doesn't usually do that). Luckily after 45 minutes I was able to grab another 2 hours of sleep. The morning headache today was a bit worse than yesterday but not tragic and it resolved not long after vomiting.
So that is my story and where I'm at. It doesn't fully match cluster because I haven't had pain that makes me pace, but there's enough here I can easily envision that happening and believe I can appreciate what it would feel like from experience. They may have already been on their way to that level but as a coffee addict knowing it interacts in some way, I've never had a headache that I didn't attempt to abate with caffeine.
Either way, I think that "something's going on here" at an intersection of chronic migraine and TAC's even it's not manifesting in the tidiest package. Any insight would be appreciated and I look forward to learning more. Best to everyone and thank you for reading,