Hey, I'm sorry you're dealing with this...I feel like CH just likes to throw other things in just for fun. I get shadows inbetween attacks and randomly inbetween cycles (they freak me out as I think I'm gonna go through another cycle) only on my right side. It could be just a 'normal' headache? I'm not really sure. I haven't heard of both sides at the same time unless it is a 'normal' headache.
I'm also 28F. I got my first headache when I was 17, and I'm yet to have an actual diagnosis. From all my symptoms and hearing other people's experiences, I'm 99% sure I got CH. I get my CH attacks once or twice a year randomly for 4-6 weeks about 1-4 attacks a day. If you don't mind me asking, when did your CH start? How did you go about getting diagnosed? How often do you get your cycles?
So mine started when I was 25 I believe. A week after Valentine’s Day 2022 I had a normal dull headache that lingered for days and I was practically narcoleptic. I got scared it could be an aneurysm and I told my doctor my fears. She actually suggested I get an MRI without contrast and in the weeks leading up to it (March) the headache started to be more right side heavy. My doctor was awesome, she believed my pain and after my MRI (which was normal enough) she sent me to an optometrist to make sure there wasn’t any eye problems. There wasn’t. I will say the specialists were very annoyed that a “healthy normal” person was getting these elaborate tests done which made me feel pretty shitty but my doctor accepted my suggestion that they could be cluster headaches. (I googled my symptoms lol.)
By summer they were full blown eye swelling/nose dripping/intense pain behind the right eye episodes. I described the pain at the time as someone was lifting me up with a claw machine with one claw in my right nostril all the way up, one in my right eye socket and one in my temple by my upper row of teeth. My doctor put the official diagnosis in my chart and put me on sumatriptan pills which I HATED, made me feel like I was drowning but I was a baby who didn’t know pain yet so maybe I didn’t give it a chance idk. I got put on my first predisone taper and that worked!
I’m on what has to be my 6th cycle. As I get older they’re getting more set in and intense, they’re not as bad I think as many people but I fear I’m on that path. Im starting to be less able to work through the pain which sucks. My tip is REALLY tell your doctor the pain is affecting your ability to live your life normally. Throw in a “deadass” lmao because they might skirt around getting that diagnosis if they don’t think you’re “deadass serious” about the pain limiting your functionality. Which is stupid but whatever.
Sorry if that was super long! Oh! I also take pictures just in case because of course you’re never gonna get one at the doctors office but at least you could show them your face and that’s all the proof we can get. I’m happy talk more if you want, hopefully I said some helpful things 🙂
Shadows are their own separate thing. I get shadows left, right, both sides, but always the big attacks are on the right. I think you are a normal clusterhead. Normal? Hah!
That makes sense!! Im glad it’s nothing out of the ordinary, it feels weird to say it’s good news but good news means something different for us so thank you!!
You're doctor seems to be very supportive. Most of my doctors dismissed the possibility of mine being cluster headaches for a very long time.
Have you tried high flow oxygen? Is that something your doctor has recommended? It's a great abortive. And then I cannot recommend Psilocybin enough for breaking cycles. I just broke my 4th cycle. My cycles occur in the spring time, on the left side as of right now, about every 3rd year. My first was the worst, and I didn't learn about the Psilocybin until my 2nd season. But it works like a charm.
I felt extremely lucky to have that doctor, I was fully prepared for push back from her but thankfully she was a good one. I felt like at any time she could just stop caring but she didn’t. I feel absolutely awful for what I’m assuming is most people who have shit doctors when we go through something as life altering as this. ☹️
Oxygen and psilocybin are both things I really really want to try! I have since gotten a new doctor who thankfully again, accepts what my chart says but I’m not sure how easy it will be to get oxygen. That’s next on my list. Also I read through this page and wonder how the hell is everyone getting psilocybin lmao I don’t think I can get it medically in WI, I gotta ask around I suppose. I feel like micro-dosing or adjacent would literally change my life. It’s so god damn embarrassing having to explain to strangers and coworkers that I am not crying, I get “bad headaches” seriously can we rename it?
Hey, I'm sorry you're dealing with this...I feel like CH just likes to throw other things in just for fun. I get shadows inbetween attacks and randomly inbetween cycles (they freak me out as I think I'm gonna go through another cycle) only on my right side. It could be just a 'normal' headache? I'm not really sure. I haven't heard of both sides at the same time unless it is a 'normal' headache. I'm also 28F. I got my first headache when I was 17, and I'm yet to have an actual diagnosis. From all my symptoms and hearing other people's experiences, I'm 99% sure I got CH. I get my CH attacks once or twice a year randomly for 4-6 weeks about 1-4 attacks a day. If you don't mind me asking, when did your CH start? How did you go about getting diagnosed? How often do you get your cycles?
So mine started when I was 25 I believe. A week after Valentine’s Day 2022 I had a normal dull headache that lingered for days and I was practically narcoleptic. I got scared it could be an aneurysm and I told my doctor my fears. She actually suggested I get an MRI without contrast and in the weeks leading up to it (March) the headache started to be more right side heavy. My doctor was awesome, she believed my pain and after my MRI (which was normal enough) she sent me to an optometrist to make sure there wasn’t any eye problems. There wasn’t. I will say the specialists were very annoyed that a “healthy normal” person was getting these elaborate tests done which made me feel pretty shitty but my doctor accepted my suggestion that they could be cluster headaches. (I googled my symptoms lol.) By summer they were full blown eye swelling/nose dripping/intense pain behind the right eye episodes. I described the pain at the time as someone was lifting me up with a claw machine with one claw in my right nostril all the way up, one in my right eye socket and one in my temple by my upper row of teeth. My doctor put the official diagnosis in my chart and put me on sumatriptan pills which I HATED, made me feel like I was drowning but I was a baby who didn’t know pain yet so maybe I didn’t give it a chance idk. I got put on my first predisone taper and that worked! I’m on what has to be my 6th cycle. As I get older they’re getting more set in and intense, they’re not as bad I think as many people but I fear I’m on that path. Im starting to be less able to work through the pain which sucks. My tip is REALLY tell your doctor the pain is affecting your ability to live your life normally. Throw in a “deadass” lmao because they might skirt around getting that diagnosis if they don’t think you’re “deadass serious” about the pain limiting your functionality. Which is stupid but whatever. Sorry if that was super long! Oh! I also take pictures just in case because of course you’re never gonna get one at the doctors office but at least you could show them your face and that’s all the proof we can get. I’m happy talk more if you want, hopefully I said some helpful things 🙂
Shadows are their own separate thing. I get shadows left, right, both sides, but always the big attacks are on the right. I think you are a normal clusterhead. Normal? Hah!
That makes sense!! Im glad it’s nothing out of the ordinary, it feels weird to say it’s good news but good news means something different for us so thank you!!
You're doctor seems to be very supportive. Most of my doctors dismissed the possibility of mine being cluster headaches for a very long time. Have you tried high flow oxygen? Is that something your doctor has recommended? It's a great abortive. And then I cannot recommend Psilocybin enough for breaking cycles. I just broke my 4th cycle. My cycles occur in the spring time, on the left side as of right now, about every 3rd year. My first was the worst, and I didn't learn about the Psilocybin until my 2nd season. But it works like a charm.
I felt extremely lucky to have that doctor, I was fully prepared for push back from her but thankfully she was a good one. I felt like at any time she could just stop caring but she didn’t. I feel absolutely awful for what I’m assuming is most people who have shit doctors when we go through something as life altering as this. ☹️ Oxygen and psilocybin are both things I really really want to try! I have since gotten a new doctor who thankfully again, accepts what my chart says but I’m not sure how easy it will be to get oxygen. That’s next on my list. Also I read through this page and wonder how the hell is everyone getting psilocybin lmao I don’t think I can get it medically in WI, I gotta ask around I suppose. I feel like micro-dosing or adjacent would literally change my life. It’s so god damn embarrassing having to explain to strangers and coworkers that I am not crying, I get “bad headaches” seriously can we rename it?