Apologies, @eastbaydave. You will be able to add images to your posts in a few days. There is a brief period where new members can't upload images. We do this to deter spammers and keep the community safe. I look forward to seeing the images when you can post later this month.
In the meantime, you mentioned a few self-management techniques, such as an ice bag, a dark room, a pillow over your head and your arms squeezing a pillow to your chest, while in the fetal position if really bad. Are there specific aspects of the cluster headache incidents that these help you with?
hi after being out. Hangover headache still but when I was hit, out and down like this was, it just seems to be grinding me out and getting worse. I see people tho I don’t know how they go on but they do. I just don’t know… I have to find a way to cut this pain… even now and it is nothing compared to what it was. I’m concentratrating too much now… it’ll ease! Guitar 🎶
hi after being out. Hangover headache still but when I was hit, out and down like this was, it just seems to be grinding me out and getting worse. I see people tho I don’t know how they go on but they do. I just don’t know… I have to find a way to cut this pain… even now and it is nothing compared to what it was. I’m concentratrating too much now… it’ll ease! Guitar 🎶
Hi Lisa, what follows the most intense is another (part of the same ) headache, just never thought of it that way, the hangover. Usually the worst is over but if it drags on long enough, has its own horrible end too. 😂. All of this does… till that rollercoaster finally reaches the top and starts going down again. I’m so used to dealing on my own it’s the only way I can think of it. Of course I could be all wrong and picked it up reading all I could.
Time limit to posst my getting worse in my head😂 painting?
Thank you mtucker. I have a big box of imitrex, ubrevny, sitting unused. Darkness and quiet are good… and an ice bag. It’s nice just hearing from others. I try and often keep the best attitude I can including laughing at myself 🤔in a positive way, I think😂. Then I slip, fall back into that hole and the worst… feeling sorry for myself. I hate that. I really gotta figure that out. I always come out of it!👍
The longest I spent in a dark room was weeks. I was headed to a really bad place, worse than I was. I’m also bi-polar. Never said that before. I had to find something positive in it all or break. I started drawing. It changed my focus. I didn’t get up and leave but it helped. I eventually did a painting from those drawings. I wouldn’t usually show it… also, I meant it to be much darker and not so cheery… me lost, trying to get out…. Hard but here goes
1 more painting
Locked in by cluster headaches.
I’d been trying to find and see things differently only to get my ass kicked back to what do I do? Yesterday was so bad. Normally I can’t leave the house.
Today, I went out to lunch w my wife! 1. 2, 3 steps forward, then who knows how many back and keep going (and some whining too) but last night night, I glad is past!🤓
I appreciate @eastbaydave . Thank you for sharing your art with us! If I could paint, it would be a self-portrait: my left side “normal”, my right in hellfire. I’ve had them for 3 1/2 years now. There was no help, even from Mayo, in 2022. Now, I am seeing the scene has some new life in research and treatments. Mine have a perfectly timed arrival: 3-5pm, daily; and once to twice a week, an hour or two after going to sleep. I have tried a lot of things; but what helps me the most is a hot towel over the right side of my face and head, and using a fascia tool to increase blood flow. I also include breathing exercises, to increase oxygenation naturally. I’ve had a few clusters that lasted beyond 30-60 minutes… some of those lasted 3+ hours.
I appreciate everyone’s input here. This is the first conversation I’ve entered; and mostly thanks to @eastbaydave . My husband, too, is at wit’s end watching me in agony every evening. Thank you for pulling me into this conversation.
Hi all,
Fellow chronic cluster sufferer since 2003. After multiple meds and efforts to help,nothing worked. Then I tried Verapamil,120 mg,2X a day,after 6 years of suffering.
To my wonderful surprise it worked. I’ve been cluster free since I started the medication.
I’m a 62 year old male,the clusters began after a cervical fusion of C6-7.
It takes a few days for the verapamil to begin working in your system,it’s not an abortive medication.
I currently take 120 mg once a day,and have been cluster free. I do not miss a dose,I never want another cluster. It’s very understandable why they can be referred to as ‘suicide headaches’.
I encourage all sufferers to try it,in my opinion.
Can anyone tell me what your symptoms are? Few years back I was dx with cluster migraines by one MD and he wanted to try oxygen the next time I had one. I didn’t have one and then had to see different neurologist and this one keeps saying not cluster. I experience severe pain on right side behind eye ( eyes use to get blood shot and pus would come out but hasn’t happened now couple year since I have gotten dry eyes), nose on one side becomes plugged, cannot sit still in like in dark room, lasts couple hrs or so and get really irritable (cannot stand noise n lights ect), and will come n go. Get it to dull pain but will come full blown again next day. Nothing I take will get rid of them. I am already on ajovy 3 injections every 3 months, namenda and Qulipita. I have been dx with migraines last 25+ years and tried everything and anything. Tired of living like this everyday and being a Ginny pig!
Noise and light sensitivity are generally associated with migraines. Cluster sufferers don’t experience that,according to everything I've learned about them.
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hi after being out. Hangover headache still but when I was hit, out and down like this was, it just seems to be grinding me out and getting worse. I see people tho I don’t know how they go on but they do. I just don’t know… I have to find a way to cut this pain… even now and it is nothing compared to what it was. I’m concentratrating too much now… it’ll ease! Guitar 🎶
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1 ReactionHi, @eastbaydave - are you referring to a literal hangover headache, or are you using this term for another type of headache?
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2 ReactionsHi Lisa, what follows the most intense is another (part of the same ) headache, just never thought of it that way, the hangover. Usually the worst is over but if it drags on long enough, has its own horrible end too. 😂. All of this does… till that rollercoaster finally reaches the top and starts going down again. I’m so used to dealing on my own it’s the only way I can think of it. Of course I could be all wrong and picked it up reading all I could.
Time limit to posst my getting worse in my head😂 painting?
-
Like -
Helpful -
Hug
1 ReactionThank you mtucker. I have a big box of imitrex, ubrevny, sitting unused. Darkness and quiet are good… and an ice bag. It’s nice just hearing from others. I try and often keep the best attitude I can including laughing at myself 🤔in a positive way, I think😂. Then I slip, fall back into that hole and the worst… feeling sorry for myself. I hate that. I really gotta figure that out. I always come out of it!👍
The longest I spent in a dark room was weeks. I was headed to a really bad place, worse than I was. I’m also bi-polar. Never said that before. I had to find something positive in it all or break. I started drawing. It changed my focus. I didn’t get up and leave but it helped. I eventually did a painting from those drawings. I wouldn’t usually show it… also, I meant it to be much darker and not so cheery… me lost, trying to get out…. Hard but here goes
-
Like -
Helpful -
Hug
1 Reaction1 more painting
Locked in by cluster headaches.
I’d been trying to find and see things differently only to get my ass kicked back to what do I do? Yesterday was so bad. Normally I can’t leave the house.
Today, I went out to lunch w my wife! 1. 2, 3 steps forward, then who knows how many back and keep going (and some whining too) but last night night, I glad is past!🤓
-
Like -
Helpful -
Hug
1 ReactionI appreciate @eastbaydave . Thank you for sharing your art with us! If I could paint, it would be a self-portrait: my left side “normal”, my right in hellfire. I’ve had them for 3 1/2 years now. There was no help, even from Mayo, in 2022. Now, I am seeing the scene has some new life in research and treatments. Mine have a perfectly timed arrival: 3-5pm, daily; and once to twice a week, an hour or two after going to sleep. I have tried a lot of things; but what helps me the most is a hot towel over the right side of my face and head, and using a fascia tool to increase blood flow. I also include breathing exercises, to increase oxygenation naturally. I’ve had a few clusters that lasted beyond 30-60 minutes… some of those lasted 3+ hours.
I appreciate everyone’s input here. This is the first conversation I’ve entered; and mostly thanks to @eastbaydave . My husband, too, is at wit’s end watching me in agony every evening. Thank you for pulling me into this conversation.
-
Like -
Helpful -
Hug
1 ReactionHi all,
Fellow chronic cluster sufferer since 2003. After multiple meds and efforts to help,nothing worked. Then I tried Verapamil,120 mg,2X a day,after 6 years of suffering.
To my wonderful surprise it worked. I’ve been cluster free since I started the medication.
I’m a 62 year old male,the clusters began after a cervical fusion of C6-7.
It takes a few days for the verapamil to begin working in your system,it’s not an abortive medication.
I currently take 120 mg once a day,and have been cluster free. I do not miss a dose,I never want another cluster. It’s very understandable why they can be referred to as ‘suicide headaches’.
I encourage all sufferers to try it,in my opinion.
-
Like -
Helpful -
Hug
1 ReactionCan anyone tell me what your symptoms are? Few years back I was dx with cluster migraines by one MD and he wanted to try oxygen the next time I had one. I didn’t have one and then had to see different neurologist and this one keeps saying not cluster. I experience severe pain on right side behind eye ( eyes use to get blood shot and pus would come out but hasn’t happened now couple year since I have gotten dry eyes), nose on one side becomes plugged, cannot sit still in like in dark room, lasts couple hrs or so and get really irritable (cannot stand noise n lights ect), and will come n go. Get it to dull pain but will come full blown again next day. Nothing I take will get rid of them. I am already on ajovy 3 injections every 3 months, namenda and Qulipita. I have been dx with migraines last 25+ years and tried everything and anything. Tired of living like this everyday and being a Ginny pig!
-
Like -
Helpful -
Hug
1 ReactionNoise and light sensitivity are generally associated with migraines. Cluster sufferers don’t experience that,according to everything I've learned about them.
-
Like -
Helpful -
Hug
1 Reaction