I started getting cluster headaches around 2002, i'm 29 now and I hadn't had an episode in about 3 years up until about 4 weeks ago. This is by far the worst series of headaches I've ever had. Like most of you, I like to consider myself pretty tough and not a complainer, I've played sports all my life, I know what it's like to get pretty banged up...by these headaches literally make me want to die to make the pain stop and bring me to tears on a regular basis. It's excruciating to such a level that, well, I don't have the words, it's just ineffable. Usually I just thrash about on my bed or floor holding my head, sobbing/moaning/screaming in pain...until they go away, which lately has been around 1-2 hours.
I'm a student and I don't have health insurance, but I did get some immitrex from a low-income health clinic. This medicine can help but only if i take it as soon as I feel the precursor headache or shadow headaches. Unfortunately, more often than not, I'm asleep when I get the headache and it's full blown when I wake up, at which point the medicine seems to have little to no effect.
I'm writing this rather long response for two reasons, one is that it's simply a bit therapeutic for me, writing out my feelings and frustrations (plus it's nice to know i'm not alone with this agonizing condition). Secondly I'm just wondering if anyone has any home-remedies or techniques they've used to manage the pain. Expensive surgery and MRI's are really out of the question for me, at least for the foreseeable future. Has anyone had any experience w/ foods that caused or helped alleviate the pain? Any kind of movement, exercise, or anything else that they've found helps?
If so, please share. Unfortunately I haven't really found anything myself. This is one of the worst parts about this condition, for me, is the helplessness I feel...
Also, to Batch, I take vitamins daily, the ones I take have 100% vitamin D, I'm assuming this is a good source of D3? You seem to have some knowledge about that so I thought I'd ask.
Anyway, this turned out to be quite the reply, sorry for the length, thanks for listening.
Hi there. I’m sorry you have been struggling with the horrible headaches. Like you, mine wake me up in the middle of the night and within about 3 seconds the pain becomes so intense and unlike any migraine or headache I have ever had. It’s intense throbbing unlike anything I have ever experienced. I’m going on 2.5 weeks of this. On this forum I discovered hypnic headaches too. Look it up. I think it sounds like that’s what it is, of course I am not a Dr, just trying to survive so I jumped on the forums on here. In the last 4 nights I started to drink caffeine before bed. So far, not one episode. I have been getting them about nightly or every other night prior to the caffeine. Sure I’m tired but I’ll take it over these episodes. I also vomit a lot with these headaches. I am a chronic migraine sufferer and these are totally different. When I get one, now I try to mimic what the ER does. I take ketoralic, benedryl, promethazine for nausea, magnesium, and dig deep. Really deep to get through the pain. I had natural childbirth with both my kids, I definitely know what a true level 10 is in pain. I have also had 2 knee replacements. These headaches too are a level 10. Sometimes after I take all that I can get it back to an 8-9 and stop vomitting. Otherwise I’m in the er.
I apologize if I’ve done all this wrong…
This is my 1st post. Headaches hit me after covid at 63. Felt like I’d been hit by a 2x4. That was over 4 years ago. I didn’t know about migraines and never heard of cluster headaches. Relief? Just seeing that word… I don’t know whether to laugh or cry? Relief…. for me, almost nothing. An ice bag and a dark room. Pillow over my head and my arms squeezing a pillow to my chest. If it’s really bad I’m in the fetal position, otherwise on my back breathing slowly. I get hit regularly on a daily basis and multiple times. I never know what’ll happen. Times I haven’t left that room in over a month. The only thing that has given me any kind relief is Zavzpret. Thing is you can only get 6 per month. So, how close to dying do I feel before I take one? I’ll only have 5 left. Nothing else. I’ve had every available med to prevent, take during or help the pain. I’ve had my nerves cut. Botox made it worse. Amovig, Ajovy, Emgality. I just seem to be the one. Nothing works. MRIs. Nope. Nothing wrong. Tried off market treatments. No help.
I’ve gone crazy to the point of… I’ve got to find something positive from this hell. I started doing drawings of my torture room. I did a painting from that. I try my hardest to see things differently, find beauty around me I never saw. I try to turn this hell into something positive when I can. I’m an artist and I paint every chance I can. I’d do anything I think sometimes to stop the pain but now I just endure it. Don’t know how.
I see differently. I paint differently. Then it all comes back and starts all over again. It’s like riding a rollercoaster.
Saw that surgery helped one person. I’m happy for that person. I’d be too afraid to do it.
I’m so sorry to the person looking for relief. I’ve never put this out anywhere before. I’ve pretty much said nothing to nobody. I wish I had an answer or at least some kind of help for you. Lost friends, can’t leave home, body fading away, worst of all, well beyond any pain of my own, seeing what I’ve become in my love’s eyes.
1 thing. The times you feel happy remember to appreciate it. For me, no matter how bad this, it’s hard to imagine so many people suffering worse…. Peace N Love
I apologize if I’ve done all this wrong…
This is my 1st post. Headaches hit me after covid at 63. Felt like I’d been hit by a 2x4. That was over 4 years ago. I didn’t know about migraines and never heard of cluster headaches. Relief? Just seeing that word… I don’t know whether to laugh or cry? Relief…. for me, almost nothing. An ice bag and a dark room. Pillow over my head and my arms squeezing a pillow to my chest. If it’s really bad I’m in the fetal position, otherwise on my back breathing slowly. I get hit regularly on a daily basis and multiple times. I never know what’ll happen. Times I haven’t left that room in over a month. The only thing that has given me any kind relief is Zavzpret. Thing is you can only get 6 per month. So, how close to dying do I feel before I take one? I’ll only have 5 left. Nothing else. I’ve had every available med to prevent, take during or help the pain. I’ve had my nerves cut. Botox made it worse. Amovig, Ajovy, Emgality. I just seem to be the one. Nothing works. MRIs. Nope. Nothing wrong. Tried off market treatments. No help.
I’ve gone crazy to the point of… I’ve got to find something positive from this hell. I started doing drawings of my torture room. I did a painting from that. I try my hardest to see things differently, find beauty around me I never saw. I try to turn this hell into something positive when I can. I’m an artist and I paint every chance I can. I’d do anything I think sometimes to stop the pain but now I just endure it. Don’t know how.
I see differently. I paint differently. Then it all comes back and starts all over again. It’s like riding a rollercoaster.
Saw that surgery helped one person. I’m happy for that person. I’d be too afraid to do it.
I’m so sorry to the person looking for relief. I’ve never put this out anywhere before. I’ve pretty much said nothing to nobody. I wish I had an answer or at least some kind of help for you. Lost friends, can’t leave home, body fading away, worst of all, well beyond any pain of my own, seeing what I’ve become in my love’s eyes.
1 thing. The times you feel happy remember to appreciate it. For me, no matter how bad this, it’s hard to imagine so many people suffering worse…. Peace N Love
Hi @eastbaydave - glad you decided to post and share about how these headaches have impacted you. I'm so sorry that almost nothing brings relief and that you've had times where you don't leave your room for over a month.
You mentioned painting to try to find something positive from this hellish situation you've experienced with headache. I think this might resonate with others who have cluster headaches. If you feel comfortable, would you share photos of a painting or two?
Hi @eastbaydave - glad you decided to post and share about how these headaches have impacted you. I'm so sorry that almost nothing brings relief and that you've had times where you don't leave your room for over a month.
You mentioned painting to try to find something positive from this hellish situation you've experienced with headache. I think this might resonate with others who have cluster headaches. If you feel comfortable, would you share photos of a painting or two?
Hi Lisa… I could do that. I’m half laughing half crying and not used to sharing… anything about myself. You’d think I’d learn by now but never do… things tend to come around the same time but not so bad at the moment… I looked and saw the copy link. I’ll give it a try…
Hi Lisa… I could do that. I’m half laughing half crying and not used to sharing… anything about myself. You’d think I’d learn by now but never do… things tend to come around the same time but not so bad at the moment… I looked and saw the copy link. I’ll give it a try…
Hi @eastbaydave - glad you decided to post and share about how these headaches have impacted you. I'm so sorry that almost nothing brings relief and that you've had times where you don't leave your room for over a month.
You mentioned painting to try to find something positive from this hellish situation you've experienced with headache. I think this might resonate with others who have cluster headaches. If you feel comfortable, would you share photos of a painting or two?
Trying to share some painting photos and just can’t figure it out… without sharing all my personal info. If anyone can help I’d appreciate it. Worn myself out once again. Never learn 🙄 Thank you
Trying to share some painting photos and just can’t figure it out… without sharing all my personal info. If anyone can help I’d appreciate it. Worn myself out once again. Never learn 🙄 Thank you
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?
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?
😂I’m laughing at myself again but only at my own idiocy. I started looking to uploading annd wore my diminished head, hour? 2?Laughed thru SouthPark and then got hit. I can tell, usually, how fast and strong it’s coming and how bad it could be.. Occasionally I’ve found, tried it last night ….. have no idea how it’s possible and it doesn’t stop it, but it does slow it down enough to think, and actually, feeling better, ( Any kind of guitar players, and I’m 🤓barely even tho since a kid… shaking so bad, I pick it up and manage to keep a hold onto it. I’ll lay my head on top side and just try to strum. Horrible but that’s not the point.. my brain can’t function but for, I know my fingers, shaking so bad, have their own little brains and know what to do. Little by little, recognizable music to more to I can lift my head and actually start to think and play. I can put it down too finding a focus, stupid me never learns, …oh, I’ll go tell my wife, bam! Think I’d better go back, lay, sit, try again.. …It’s like finally making myself picking up a brush. Everything fights it but I know, somewhere inside, I have to do it. Joy!!!! I just disappear. I can only guess at times I’ve been handed this indescribable gift! Without knowing I’ve turned my focus. Im crying and think everyone here knows just what their own hell is, I go straight to a feeling of I feel like sh-t but I’m out.. I don’t even know it. Just joy…
how to describe my love affair with the ice bag
Get a good one! My old one ‘sweated’ leaked thru fabric! 😂 no fin. Read the ad print orc some capable, not me. Saw pic. Ice bag Order😂😂😂It must’ve been made for Barbie or GI Joe! Wife came thru again. You’re not supposed to keep it in one spot too long but…. I don’t care. I want to freeze anywhere to the point I can’t feel. I also move it around to anywhere on my body.
Ok Gone too far and not going any more till later?thank you all for this.
Still hear, still feel such a failure … never talk, tell, keep it inside.What people see is all that matters. Guess that’s how my dad dealt w WWII. We all have to find our own way but wish wish wish 😂 wishes were 🎶Pennie’s from heaven🎵
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Hi there. I’m sorry you have been struggling with the horrible headaches. Like you, mine wake me up in the middle of the night and within about 3 seconds the pain becomes so intense and unlike any migraine or headache I have ever had. It’s intense throbbing unlike anything I have ever experienced. I’m going on 2.5 weeks of this. On this forum I discovered hypnic headaches too. Look it up. I think it sounds like that’s what it is, of course I am not a Dr, just trying to survive so I jumped on the forums on here. In the last 4 nights I started to drink caffeine before bed. So far, not one episode. I have been getting them about nightly or every other night prior to the caffeine. Sure I’m tired but I’ll take it over these episodes. I also vomit a lot with these headaches. I am a chronic migraine sufferer and these are totally different. When I get one, now I try to mimic what the ER does. I take ketoralic, benedryl, promethazine for nausea, magnesium, and dig deep. Really deep to get through the pain. I had natural childbirth with both my kids, I definitely know what a true level 10 is in pain. I have also had 2 knee replacements. These headaches too are a level 10. Sometimes after I take all that I can get it back to an 8-9 and stop vomitting. Otherwise I’m in the er.
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Helpful -
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1 ReactionI apologize if I’ve done all this wrong…
This is my 1st post. Headaches hit me after covid at 63. Felt like I’d been hit by a 2x4. That was over 4 years ago. I didn’t know about migraines and never heard of cluster headaches. Relief? Just seeing that word… I don’t know whether to laugh or cry? Relief…. for me, almost nothing. An ice bag and a dark room. Pillow over my head and my arms squeezing a pillow to my chest. If it’s really bad I’m in the fetal position, otherwise on my back breathing slowly. I get hit regularly on a daily basis and multiple times. I never know what’ll happen. Times I haven’t left that room in over a month. The only thing that has given me any kind relief is Zavzpret. Thing is you can only get 6 per month. So, how close to dying do I feel before I take one? I’ll only have 5 left. Nothing else. I’ve had every available med to prevent, take during or help the pain. I’ve had my nerves cut. Botox made it worse. Amovig, Ajovy, Emgality. I just seem to be the one. Nothing works. MRIs. Nope. Nothing wrong. Tried off market treatments. No help.
I’ve gone crazy to the point of… I’ve got to find something positive from this hell. I started doing drawings of my torture room. I did a painting from that. I try my hardest to see things differently, find beauty around me I never saw. I try to turn this hell into something positive when I can. I’m an artist and I paint every chance I can. I’d do anything I think sometimes to stop the pain but now I just endure it. Don’t know how.
I see differently. I paint differently. Then it all comes back and starts all over again. It’s like riding a rollercoaster.
Saw that surgery helped one person. I’m happy for that person. I’d be too afraid to do it.
I’m so sorry to the person looking for relief. I’ve never put this out anywhere before. I’ve pretty much said nothing to nobody. I wish I had an answer or at least some kind of help for you. Lost friends, can’t leave home, body fading away, worst of all, well beyond any pain of my own, seeing what I’ve become in my love’s eyes.
1 thing. The times you feel happy remember to appreciate it. For me, no matter how bad this, it’s hard to imagine so many people suffering worse…. Peace N Love
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Like -
Helpful -
Hug
2 ReactionsHi @eastbaydave - glad you decided to post and share about how these headaches have impacted you. I'm so sorry that almost nothing brings relief and that you've had times where you don't leave your room for over a month.
You may or may not have seen similar information on cluster headaches, but here is some information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/cluster-headache/symptoms-causes/syc-20352080
You mentioned painting to try to find something positive from this hellish situation you've experienced with headache. I think this might resonate with others who have cluster headaches. If you feel comfortable, would you share photos of a painting or two?
-
Like -
Helpful -
Hug
1 ReactionHi Lisa… I could do that. I’m half laughing half crying and not used to sharing… anything about myself. You’d think I’d learn by now but never do… things tend to come around the same time but not so bad at the moment… I looked and saw the copy link. I’ll give it a try…
-
Like -
Helpful -
Hug
1 ReactionTrying…
Trying to share some painting photos and just can’t figure it out… without sharing all my personal info. If anyone can help I’d appreciate it. Worn myself out once again. Never learn 🙄 Thank you
-
Like -
Helpful -
Hug
1 ReactionApologies, @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?
-
Like -
Helpful -
Hug
1 Reaction😂I’m laughing at myself again but only at my own idiocy. I started looking to uploading annd wore my diminished head, hour? 2?Laughed thru SouthPark and then got hit. I can tell, usually, how fast and strong it’s coming and how bad it could be.. Occasionally I’ve found, tried it last night ….. have no idea how it’s possible and it doesn’t stop it, but it does slow it down enough to think, and actually, feeling better, ( Any kind of guitar players, and I’m 🤓barely even tho since a kid… shaking so bad, I pick it up and manage to keep a hold onto it. I’ll lay my head on top side and just try to strum. Horrible but that’s not the point.. my brain can’t function but for, I know my fingers, shaking so bad, have their own little brains and know what to do. Little by little, recognizable music to more to I can lift my head and actually start to think and play. I can put it down too finding a focus, stupid me never learns, …oh, I’ll go tell my wife, bam! Think I’d better go back, lay, sit, try again.. …It’s like finally making myself picking up a brush. Everything fights it but I know, somewhere inside, I have to do it. Joy!!!! I just disappear. I can only guess at times I’ve been handed this indescribable gift! Without knowing I’ve turned my focus. Im crying and think everyone here knows just what their own hell is, I go straight to a feeling of I feel like sh-t but I’m out.. I don’t even know it. Just joy…
how to describe my love affair with the ice bag
Get a good one! My old one ‘sweated’ leaked thru fabric! 😂 no fin. Read the ad print orc some capable, not me. Saw pic. Ice bag Order😂😂😂It must’ve been made for Barbie or GI Joe! Wife came thru again. You’re not supposed to keep it in one spot too long but…. I don’t care. I want to freeze anywhere to the point I can’t feel. I also move it around to anywhere on my body.
Ok Gone too far and not going any more till later?thank you all for this.
Still hear, still feel such a failure … never talk, tell, keep it inside.What people see is all that matters. Guess that’s how my dad dealt w WWII. We all have to find our own way but wish wish wish 😂 wishes were 🎶Pennie’s from heaven🎵
-
Like -
Helpful -
Hug
2 Reactions