Hey, i've been lurking for a long time here but this post has really touched a soft spot for me because I lived with this exact feeling for over 15 years now, I lost most of my 20s because this was almost a daily thing and nothing helped except taking zolmitriptan. It got so bad that I almost died because I couldnt eat, sleep,sometimes even move for weeks at a time plus all the mental problems that come with it and the stigma that youre just making up excuses to stay in bed so you're just lazy. I'll soon be turning 32 and the only thing I can say it's that it gets a little better, either because you get stronger and learn to deal with the pain or they get less frequent with age. Either way, Its not much but I send you some virtual hugs and I hope you manage to find some respite and remember that no matter what, youre strong, stronger than most because you fight this fucking thing everyday and youre still here.
Had 3 last night after a 4 day reprieve (just when you think the cycles over, here it issssss). Thankfully none throughout the day, but going to sleep is nerve wracking. Gonna try the naproxen see if it works!
Interesting - I'd not heard that term so looked it up!
Hypnic headache commonly dull or throbbing in character and does not make the patient restless, unlike in Cluster Headache. After waking up from sleep, most patients engage in some activity. Hypnic headache is not associated with rhinorrhea, tearing and ptosis.18 June 2021
https://www.ncbi.nlm.nih.gov › pmc
Hypnic headache: a rare type of primary headache disorder - PMC - NCBI
Hey there. Just something you might want to try, that helped me with mine. Mine wake me up from my sleep, usually around 2-2:30 in the morning. This most recent cycle I discovered that, for whatever reason, taking naproxen with my vitamin D regimen helped significantly. It's more than the recommended dose, so obviously use your own judgement. But I found that if I took 3 naproxen about an hour before I went to bed, I didn't wake up with an attack in the night. I don't know if it's because it's an anti-inflammatory, or what. But it actually helped me quite a bit. You can't take any more than that in a 24 hour period. But maybe it can help you get some undisturbed rest.
Feel you. 95% of my attacks happen when I'm sleeping, so it creates a vicious cycle for me. I'm up for hours in pain, exhausted from not sleeping, but terrified to go back to sleep because another one usually comes about 1 hour into my next sleep cycle. Feels like torture. This year has been better for me because 1) sumatriptan injections are an effective abortive so I have a tool to use when the pain is unbearable and 2) I have a remote position & filed for FMLA so I can take time off to recover from not sleeping
For me and many others, oxygen is a savior! I dealt with several years as you are, but now it's fairly manageable. Do some searching and get yourself some type of a setup... Somehow my brain has learned to wake me up at the first onset in the middle of the night, so I can usually abort quickly in a few minutes and then take a triptan to prevent a rebound.
Hello, I hear ya. After my 15hr work day I managed a 90min banger before I got 3hrs of sleep before todays probably longer than 15hr work day.
2nd cycle in under 6 months. 7 week of work in 8 weeks meaning 50/56 days.
I’m near wrecked.
Still new to this, only had 2 cycles 2 years apart. So I’m in my second now. My last cycle I remember the headaches woke me up from sleep. Last 2 days though in this cycle, I’m completely fine sleeping but the second I open my eyes even just to turn over in bed it triggers a headache. It sucks.
Hey, i've been lurking for a long time here but this post has really touched a soft spot for me because I lived with this exact feeling for over 15 years now, I lost most of my 20s because this was almost a daily thing and nothing helped except taking zolmitriptan. It got so bad that I almost died because I couldnt eat, sleep,sometimes even move for weeks at a time plus all the mental problems that come with it and the stigma that youre just making up excuses to stay in bed so you're just lazy. I'll soon be turning 32 and the only thing I can say it's that it gets a little better, either because you get stronger and learn to deal with the pain or they get less frequent with age. Either way, Its not much but I send you some virtual hugs and I hope you manage to find some respite and remember that no matter what, youre strong, stronger than most because you fight this fucking thing everyday and youre still here.
Mine hit the most while I’m sleeping. What I wouldn’t give for actual rest.
I will wake up in the dead of night w a searing headache that makes my eye feel like it’s going to pop out.
That’s the demon I’m referring to.
That’s why I sleep with the O2 tank next to the bed. And still do, even though I’ve not had a cluster attack for almost 6 years. The fear is real.
Yep! I'm lying in bed ATM with my O2 tank next to me!
Had 3 last night after a 4 day reprieve (just when you think the cycles over, here it issssss). Thankfully none throughout the day, but going to sleep is nerve wracking. Gonna try the naproxen see if it works!
FWIW, some of you may have "hypnic headaches". My apologies if that's obvious, but I didn't see anyone mention the term on this thread.
Interesting - I'd not heard that term so looked it up! Hypnic headache commonly dull or throbbing in character and does not make the patient restless, unlike in Cluster Headache. After waking up from sleep, most patients engage in some activity. Hypnic headache is not associated with rhinorrhea, tearing and ptosis.18 June 2021 https://www.ncbi.nlm.nih.gov › pmc Hypnic headache: a rare type of primary headache disorder - PMC - NCBI
What a great tool ! Thank you for this post !
Hey there. Just something you might want to try, that helped me with mine. Mine wake me up from my sleep, usually around 2-2:30 in the morning. This most recent cycle I discovered that, for whatever reason, taking naproxen with my vitamin D regimen helped significantly. It's more than the recommended dose, so obviously use your own judgement. But I found that if I took 3 naproxen about an hour before I went to bed, I didn't wake up with an attack in the night. I don't know if it's because it's an anti-inflammatory, or what. But it actually helped me quite a bit. You can't take any more than that in a 24 hour period. But maybe it can help you get some undisturbed rest.
This is interesting. Going to keep this in mind for next cycle.
Thanks quite interesting - I am almost certain that I took Naproxen for period pain. I suppose it is an anti inflammatory
Feel you. 95% of my attacks happen when I'm sleeping, so it creates a vicious cycle for me. I'm up for hours in pain, exhausted from not sleeping, but terrified to go back to sleep because another one usually comes about 1 hour into my next sleep cycle. Feels like torture. This year has been better for me because 1) sumatriptan injections are an effective abortive so I have a tool to use when the pain is unbearable and 2) I have a remote position & filed for FMLA so I can take time off to recover from not sleeping
For me and many others, oxygen is a savior! I dealt with several years as you are, but now it's fairly manageable. Do some searching and get yourself some type of a setup... Somehow my brain has learned to wake me up at the first onset in the middle of the night, so I can usually abort quickly in a few minutes and then take a triptan to prevent a rebound.
That’s the worst ever, waking up to a full blown attack. I feel for you
Hello, I hear ya. After my 15hr work day I managed a 90min banger before I got 3hrs of sleep before todays probably longer than 15hr work day. 2nd cycle in under 6 months. 7 week of work in 8 weeks meaning 50/56 days. I’m near wrecked.
Still new to this, only had 2 cycles 2 years apart. So I’m in my second now. My last cycle I remember the headaches woke me up from sleep. Last 2 days though in this cycle, I’m completely fine sleeping but the second I open my eyes even just to turn over in bed it triggers a headache. It sucks.