Ok, I'm new here. Self diagnosed a little over a week ago, went to doctor, explained symptoms and cycles, he agreed. Been going on for 6 years episodic, twice a year and being treated as migraines until now. Supposed to see neuro soon, waiting on the appointment date now. Until recently all I had available was Rizatriptan or Sumitriptan tablets. I now have nasal spray as well though I havent used it yet and doctor gave me verapamil (which despite my objections he insisted should be extended release. I'm waiting for neuro to hopefully fix that but for now taking it a few hours before bed time.) I had a cycle start about 3 weeks ago: one headache, every night, approximately midnight, hits whether I go to bed beforehand or stay up. This lasted for 2 weeks, while I started googling and figuring out what it was finally. I quit drinking, started verapamil, got a steroid injection in doctor office (normal dose of IM steroids) and an absurdly low course of prednisone (20mg a day for 5 days). I also started taking vitamin D, magnesium and vitamin K supplements and 5mg of melatonin to help me get to sleep at night. The headaches stopped Sunday and I went all week with only shadows.
I woke up today with a "minor" CH. It wasnt bad as CH go but it was outside of my usual cycle timing. I've never had one wake me up at 8AM and now I'm stressed cause if that starts happening I'm gonna start missing work. I'm hoping it is just a fluke because of taking the verapamil, vitamin D and magnesium.
Anyway, when I woke up I decided to take pics because I am supposed to see a Neuro soon. I got to the bathroom to look in the mirror and these are my symptoms:
Obviously pain. This is in the temple, and behind the eye mostly but also goes up the forehead a little and the back of my head at the base of my skull is tight and tender as well. If I had to put a number on this one I would say Kip 7~
Autonomic Symptoms:
Left eye watering/Right Eye dry.
Left Sinus feels congested/swollen shut and yet it feels like the air is burning inside. Right sinus clear.
Pupils seem to be similar in size. Left eye has difficulty opening. I am not sure if this is swelling or muscles spasming in response to the pain. Trying to open it fully hurts more. Not sure if because if because of pain or a sensitivity to light. If I leave the left eye shut, i have no sensitivity to light at all while using my right eye to navigate. But trying to open the left eye seems less painful in the dark. I know photophobia isnt really a CH thing but the fact that it is unilateral? Idk. Also, both eyes bloodshot. That symptom is the only one that seems to be on the right side as well. There is zero pain, watering, drooping etc on the right. Sometimes I try to focus on compartmentalizing in my head and escaping into the right side to get away from the pain. Sometimes it helps, sometimes it doesnt. This morning I just wanted to sleep. Putting a cold wet washcloth on my eye used to help a little, now it helps, then feels like it hurts more so i decided to try the whole ice to the carotid deal. Frozen vegetables in a pillow case, wrapped around the neck, surpringly helped a bit. After about half an hour the pain subsided again and I fell asleep, waking up around noon with my shirt soaked from the condensation of the thawing vegetables lmao. Still had some shadow type pain but it was mostly gone and without using any actual medicine this time.
My questions:
Is the red eye on both sides a little weird? I mean my right eye doesnt hurt at all. Autonomic symptoms are supposed to be unilateral, but from what I understand it varies a little.
Unilateral photophobia? Is that even a thing? Anyone else experience anything like that?
Is it normal for the meds to throw off your cycle temporarily like that when you start? I'm thinking, the quitting drinking, prednisone and influx of verapamil and vitamins maybe just raised the threshold temporarily, because I have been having shadows every evening but they never materialized into anything until this one woke me up out of the blue in the morning.
I know, I know. Go to a doctor. I'm crossing my fingers that I will get to the neuro soon, but I'm not holding my breath that he will be competent. My little corner of Texas is famous for doctors that know very little about anything. While I know that you all are not doctors, I am pretty sure a lot of you know more about CH than any doctor within 300 miles of me so I would value your input tremendously.