I suffer from an underlying condition called ehlers danlos syndrome hypermobility type (EDS). this causes the ligaments and tendons to be lax, subluxations and joint pain)
I used to get migraines, but they changed into cluster headaches ( I think). i havent noticed a pattern in frequency or figured out an initial cause, (my neck is getting an MRI soon to see if there is a problem caused by the EDS.) They always are the same though. Mid-late morning I dont really have pain but i know one's coming. About lunch time/early afternoon I get pain in my neck radiating up the right side of my head on and off, getting worse each time. by about 6pm it matches the pain level of a migraine and keeps getting worse. usually kicking in properly at about 8pm-ish, i have no interest in eating dinner, my vision starts to blur and i can't tolerate wearing my glasses anymore, during this time i usually end up grabbing my neck, tilting my head to the right, pulling my hair, squishing various bits of my head including temples and across eyebrows to relieve the pain. I cant bear any light source, and somewhere between 9pm-3am I'm usually curled up in the foetal position with one hand on my neck and one on the right side of the head , the pain is excrutiating. My right eye swells a bit and waters ( i noticed the swelling in the mirror last time, mostly if i'm not lying down i'm walking around the flat with my eyes closed). the day after my memory of the day is usually patchy - not remembering saying things to people etc, i can't concentrate on anything, just thinking about moving hurts. I get that for one day, when i wake in the morning they are usually gone but i feel wierd all day. i think i've triggered them before when i've tweaked my neck.
I went to doctor the day after one where i was contemplating calling them to knock me out at 3am. I've now been prescibed ocycodone for them (i think i was told it was cluster headaches then. i tried various migraine tablets that didn't do anything, oramorph does nothing also) which work if taken early enough, when it kicks in my pain changes to a burning/stinging sensation behind my nose, eyes and forehead region. Because my doctors are throwing the word migraine around still, i get wierd looks from pain specialists when they see i'm on ocycodon for 'migraines'. I am going to see doctor for definative diagnosis.
I don't understand what people mean by cycle, and have never been told about oxygen helping, stupidly i've not been to see a doctor when i have one, as usually worst bit is 1-3am ish and i don;t want to cause a fuss, also transport to anywhere is an issue.
Thank you for reading my rambling, i feel a bit lost with them at the moment with it.
The issues u mention could be a related issue of EDS, chiari malformation, or a retroflexed odontoid.....the MRI should answer some questions.U may want a MRI of the brain w/wo contrast as well as the cervical one.....
Cycle....many conditions like Chiari and EDS the symptoms will cycle like ur monthly cycles....u get it on a reg cycle or pattern, and sometimes it can be triggered by what u do.
Sleep apnea is common in those with Chiari and similar issues....those with fatigue do not sleep deeply enuff....and a C-Pap can help aid to get to that restorative sleep and help eliminate the constant tired feelings.
Depending on the Dr or clinic u go to, some have lodging at reduced rates and there are non profit orgs that will fly u free to a Dr visit.
Good luck and know this is a safe place to ramble : )
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