Hi, my first post here
Here is my story...
Since 2012 I am suffering from weird headaches. It started with occasional pain in my left eye and it increased in both intensity and frequency until 2021. I started to consult in 2021 because I could not tolerate it anymore. I had all kind of test done like scans, eyes exam, blood test etc.. nothing is wrong I am 100% healty.
I have read many post here and many articles on internet and I feel like I have CH but I am not 100% sure. When I get an attack it start around 1pm or sooner and can last until 9 or 10pm. When I read about CH, it should last only like 1 hour. When you guys describe the pain, you say it is like a pike behind the eye. I am really bad at describing what I feel but it is more like a constant pressure behind and around the eye and larger that build up slowly over the hours until it reach its peak. I have these attack all year around, it never stop (the number of attack increased between 2012 and now). I am now at around 6 attacks per month. When it happens I have often my left eye running and my nose is congested but runny at the same time.. very weird. At its peak, I end up in the bed banging my eye and wiggling in the bed trying to think and do something else to forget about the pain until I finally fall asleep from the pain and exhaustion. I am not thinking about suicide, I am ok on this side. But I would say I am, on a pain level, at 80% before I think about killing myself. I am not sure if this last sentence means anything since my first language is french, but let's just say I can take a little more before I would act. So this is about what I live with since a couple years...
When I consulted about 1 year ago, they said I had migraine and gave me some rizatriptan and almotriptan. I tried both, rizatriptan worked but makes my left arm numb. Almotriptan do work and I am taking this for 1 year. So everytime I start to feel the pain coming, I take almotriptan and the pain stop after 1 hour. Only once I had to take 3 doses to finally have a relief but at the same time it was the WORST attack I had even with the meds.
One thing I really hate is that even if almotriptan is very helpfull because it makes the pain stop instead of building up, I still feel bad most of the time between the attacks. From what I read here, I think you call this shadow but I am not sure if it is what I feel. What I feel is like if I was depressed with a small pain in the eye like if I was looking through a box. I don't want/can't do anything. All I want to do is stay on the couch. It is really bad for my life because I feel like i am useless and like if I am a depresed person. But aside from that "pain", all my life is a dream. I love my job, I love my family, I have no money problem, everything is awesome, I have no reason to feel depressed. Sometimes, maybe 3-4 times per year I get a couple days without attack and without any symptoms. When those days happen I am a totally different person ! I have no pain so life is beautifull and I can do all I want until the next attack ! So considering this, I am pretty sure that it is this pain that makes me depressed like that and without pain, life would be awesome.
I talked about CH to my doctor and he said I had a couple of the symptom to say I do have CH and when I told him I had 6 attacks per month, he gave me verapamil at 3 dose of 80mg per day. I am taking this for 2 weeks now and still had 3 attacks since, so I am really wondering if I really have CH or something else...
Sorry for the long post...
From your experiences, do I have an atypical form of CH or not CH at all or... I don't know ?
What about the feeling I keep between the attacks ? That is what kills me the most.
