30 years, I'm crying I'm so sorry, I've only had them for eight years now but it seems like a lifetime and I have aged so much it makes me extremely depressed😭 I also have CRPS you can Google it it's horrible🥲
I’ve had HC for seven years, I remember the day I woke up with a headache that never went away😢. Total misery, no life, can't work, on disability, seems like they could do more to treat this nasty disease😢. Never in my life did I think😭😩 I am prescribed prescribed emgality, Indomethacin, Botox, Percocet and Nurtec and still I get a damn headache every day ~every freaking day! nobody understands
The loneliness caused by this never-ending torture can not be over stated enough. It's almost impossible for the average person to comprehend and imagine just how awful it truly is. Literally every waking moment is poisoned by it's presence. My suffering started around the same time as yours, and I'm just so sorry you're going through this, friend. I wouldn't want to wish this on my worst enemy, so it breaks my heart to hear you're struggling with it as well. Please, stay strong. I've tried so many different migraine medications and infusions and literally the only thing that helps is marijuana. Even then, it's more of a warm blanket on top of the pain instead of any actual relief. After all of my trial and errors though, I'm 90% positive it's sleep related. After a sleep study a year ago, I was diagnosed with severe sleep apnea. I still struggle with CPAP therapy, I can't tolerate the wearing the mask barely at all. So I've started to very slowly naturally improve my sleep and my breathing by cutting down on bad habits (smoking, mainly. But also consistent sleep). Every now and then I manage to feel decently rested in the morning. And whenever that happens, without fail, my migraine pain feels significantly reduced. Have you had an in-lab sleep study done yet? Do you believe there could be other underlying issues in other systems of your body that could be causing your HC?
Du bist nicht allein ich habe auch mit dieser Krankheit zu tun und fast jeden Tag Schmerzen und jetzt wird mir auch noch grundlos mein Indometacin verweigert
@@cheezeebred thank you so much for responding, I even had the neurostimulator I know you understand and I'm sorry for your pain it's such a loss of life🥲 I'm too young to be this old🫠
@@girlnextdoor7012 "I'm too young to be this old." Damn that's a good quote and so freaking true. I feel like I relate more to old people with health problems than my own peers. Are you feeling any better nowadays? What kind of progress have you made? Learn anything new?
i don't know what lifestyle changes to make to prevent this.. but the moment I wake up and open my eyes and start to do normal things like walking, talking it starts - i have to cover my eye to feel less strain. i am always squinting my eye.
Been having symptoms for 2 years. Finally saw a neurologist today and she’s almost certain it’s HC. However after reading so many scary reviews on the indo medication, I think I’m too scared to take it
Ich habe auch die Diagnose paroxysmale Hemikranie aber auch die Diagnose chronische Migräne auf jeden Fall wirkt fast nur Indometacin. Ich vertrage nur die Indometacin Zäpfchen und die sind in Deutschland schwer zu bekommen jetzt macht man mir auch noch das Medikament streitig
Great and interesting video❤❤
I’ve had HC for over 30 years. Misery
30 years, I'm crying I'm so sorry, I've only had them for eight years now but it seems like a lifetime and I have aged so much it makes me extremely depressed😭
I also have CRPS you can Google it it's horrible🥲
I’ve had HC for seven years, I remember the day I woke up with a headache that never went away😢. Total misery, no life, can't work, on disability, seems like they could do more to treat this nasty disease😢. Never in my life did I think😭😩
I am prescribed prescribed emgality, Indomethacin, Botox, Percocet and Nurtec and still I get a damn headache every day ~every freaking day!
nobody understands
The loneliness caused by this never-ending torture can not be over stated enough. It's almost impossible for the average person to comprehend and imagine just how awful it truly is. Literally every waking moment is poisoned by it's presence. My suffering started around the same time as yours, and I'm just so sorry you're going through this, friend. I wouldn't want to wish this on my worst enemy, so it breaks my heart to hear you're struggling with it as well. Please, stay strong. I've tried so many different migraine medications and infusions and literally the only thing that helps is marijuana. Even then, it's more of a warm blanket on top of the pain instead of any actual relief.
After all of my trial and errors though, I'm 90% positive it's sleep related. After a sleep study a year ago, I was diagnosed with severe sleep apnea. I still struggle with CPAP therapy, I can't tolerate the wearing the mask barely at all. So I've started to very slowly naturally improve my sleep and my breathing by cutting down on bad habits (smoking, mainly. But also consistent sleep). Every now and then I manage to feel decently rested in the morning. And whenever that happens, without fail, my migraine pain feels significantly reduced.
Have you had an in-lab sleep study done yet? Do you believe there could be other underlying issues in other systems of your body that could be causing your HC?
Du bist nicht allein ich habe auch mit dieser Krankheit zu tun und fast jeden Tag Schmerzen und jetzt wird mir auch noch grundlos mein Indometacin verweigert
@@lisakarg6831 I think this is German and I can't read German😕
@@cheezeebred thank you so much for responding, I even had the neurostimulator
I know you understand and I'm sorry for your pain it's such a loss of life🥲
I'm too young to be this old🫠
@@girlnextdoor7012 "I'm too young to be this old." Damn that's a good quote and so freaking true. I feel like I relate more to old people with health problems than my own peers.
Are you feeling any better nowadays? What kind of progress have you made? Learn anything new?
HC started for me about 18 months ago. It is indeed awful.
Hilft dir Indometacin?
Ive had HC since 2017 anyone else out there have it?
i don't know what lifestyle changes to make to prevent this.. but the moment I wake up and open my eyes and start to do normal things like walking, talking it starts - i have to cover my eye to feel less strain. i am always squinting my eye.
Yeah 😢
Newly diagnosed
@@nextlvl7344 same here 😭
Been having symptoms for 2 years. Finally saw a neurologist today and she’s almost certain it’s HC. However after reading so many scary reviews on the indo medication, I think I’m too scared to take it
Ich habe auch die Diagnose paroxysmale Hemikranie aber auch die Diagnose chronische Migräne auf jeden Fall wirkt fast nur Indometacin. Ich vertrage nur die Indometacin Zäpfchen und die sind in Deutschland schwer zu bekommen jetzt macht man mir auch noch das Medikament streitig