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?
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 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've just come across this page today I, I started having headaches in 2007 just after matric an dit would be after two year but now I'm only getting like months of pain free like just 2 months and they start again. Somedays I used to want to die and think I'm gonna die, how do you carry living with this condition please help give me some advise what help.. What pain killer to take I'm 38 and really suffering I want to just die... I've prayed used muti since from my sangoma but nothing works... I'm at a loss I glade I'm note alone... Please help if you can
I had a consult with a physiatrist and am going to do a facet injection with lidocaine and a steroid. If it helps but not for long enough then I could consider PRP (Platelet Rich Plasma) which is a little more experimental but there is evidence for it in the neck. Has anyone had PRP? Has it helped their neck or head?!
I have done PT 9 times for my neck! By nine times, I mean with 9 different PTs over 9 different times, full courses over 12 years or so. I do find the exercises help, but only somewhat and I have to be very careful or they can make things worse.
What was wrong at your C5-6 level that you had a fusion for, if I may ask? My neuro has cautioned me against surgery.....
@sanderson23 I had a ruptured disc at C5/C6 which initially wasn't so bad. I know when it ruptured because I was turning my head when it happened and heard the pop and my head suddenly turned farther. When that jelly like nucleus inside a disc spills out, it causes inflammation which causes bone spurs to grow as the spine tries to stabilize itself. The bone spurs and disc contents were pressing 5 mm into the spinal canal causing a little bit of spinal cord compression and a lot of pain symptoms everywhere in my body. I lost the coordination in my arms and lost muscle in my shoulder as well as had an uneven gait.
That was progressing and I saw the amount of bone spurs double in 9 months time on MRIs. The disc lost half it's height and I lost a quarter inch in height. I also had 2 mm of retrolisthesis which is slipping backwards at that level. I had a choice of fusion or artificial disc, but the artificial disc was not a great choice because of the 2mm of movement. I also opted for the fusion because I could do it with no hardware and only a bone disc spacer. With only one level fused, my neck movement is about the same as before except that I can't touch my chin to my chest anymore. This surgery was a good thing, and it gave me my life back, stopped all the pain, and prevented disability from happening. I have also done a lot of myofascial release to loosen scar tissue and keep my neck mobile. That helps a lot after surgery and on an ongoing basis to prevent spasms.
@sanderson23 I'm sorry about your migraines, but you may want to consider what part your cervical disc disease may be playing in generating pain. Typicality, cervical spine issues cause muscles spasms that pull the spine out of normal alihgnmemnet. With lots of muscles attached to the vertebrae and connecting to the skull, that can generate pain when the muscles are stressed by a spasm that adds tension to them. You may want to see if physical therapy can help. If your spine degeneration is advanced, you may want to consider seeking a spine surgeon's opinion.
Injections don't fix problems, and just possibly mask dome symptoms. I don't have experience with ablations, but that may be a temporary solution or it may not give relief. You would need other opinions on that. I am a cervical spine surgery patient, and spine surgery calmed down the muscle spasms a lot. I can still have some spasms. but they are correctable with stretching. My surgery was a C5/C6 fusion which made my life better.
I have done PT 9 times for my neck! By nine times, I mean with 9 different PTs over 9 different times, full courses over 12 years or so. I do find the exercises help, but only somewhat and I have to be very careful or they can make things worse.
What was wrong at your C5-6 level that you had a fusion for, if I may ask? My neuro has cautioned me against surgery.....
I have chronic migraine and probable cluster headache that is doing very poorly in the last year or so but especially the last several weeks. I also have lots of degenerative changes in my C-spine, facet arthritis and degenerative disk disease. I am very very VERY cautious with procedures, but I think I finally need to consider the spine injections they are recomending as I feel like the pain in my head and in my neck are in a feedback loop. Has anyone else had either MBB (medial branch blocks) or facet steroid injections? What level and how did it go as far as decreasing headaches? (I a not so worried about the neck pain, I am worried about how it triggers the migraine). Has anyone had a (RFA) radio frequency ablation? Again, what level and did it help headaches? Did anyone have the RFA flare up their migraine and for how long?
Last question, and I don't know if there are any rules about this in this foru. If this question isn't allowed, I retract it! I really need to go to someone I know is really good, I need that confidence and trust to move forward. Does anyone have a doctor they have had these types of injections with in Oregon that was exceptional and if so, can you give me their name and tell me why you think so highly of them?
@sanderson23 I'm sorry about your migraines, but you may want to consider what part your cervical disc disease may be playing in generating pain. Typicality, cervical spine issues cause muscles spasms that pull the spine out of normal alihgnmemnet. With lots of muscles attached to the vertebrae and connecting to the skull, that can generate pain when the muscles are stressed by a spasm that adds tension to them. You may want to see if physical therapy can help. If your spine degeneration is advanced, you may want to consider seeking a spine surgeon's opinion.
Injections don't fix problems, and just possibly mask dome symptoms. I don't have experience with ablations, but that may be a temporary solution or it may not give relief. You would need other opinions on that. I am a cervical spine surgery patient, and spine surgery calmed down the muscle spasms a lot. I can still have some spasms. but they are correctable with stretching. My surgery was a C5/C6 fusion which made my life better.
I have chronic migraine and probable cluster headache that is doing very poorly in the last year or so but especially the last several weeks. I also have lots of degenerative changes in my C-spine, facet arthritis and degenerative disk disease. I am very very VERY cautious with procedures, but I think I finally need to consider the spine injections they are recomending as I feel like the pain in my head and in my neck are in a feedback loop. Has anyone else had either MBB (medial branch blocks) or facet steroid injections? What level and how did it go as far as decreasing headaches? (I a not so worried about the neck pain, I am worried about how it triggers the migraine). Has anyone had a (RFA) radio frequency ablation? Again, what level and did it help headaches? Did anyone have the RFA flare up their migraine and for how long?
Last question, and I don't know if there are any rules about this in this foru. If this question isn't allowed, I retract it! I really need to go to someone I know is really good, I need that confidence and trust to move forward. Does anyone have a doctor they have had these types of injections with in Oregon that was exceptional and if so, can you give me their name and tell me why you think so highly of them?
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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 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?
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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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Helpful -
Hug
2 ReactionsHi 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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Like -
Helpful -
Hug
1 ReactionI've just come across this page today I, I started having headaches in 2007 just after matric an dit would be after two year but now I'm only getting like months of pain free like just 2 months and they start again. Somedays I used to want to die and think I'm gonna die, how do you carry living with this condition please help give me some advise what help.. What pain killer to take I'm 38 and really suffering I want to just die... I've prayed used muti since from my sangoma but nothing works... I'm at a loss I glade I'm note alone... Please help if you can
I had a consult with a physiatrist and am going to do a facet injection with lidocaine and a steroid. If it helps but not for long enough then I could consider PRP (Platelet Rich Plasma) which is a little more experimental but there is evidence for it in the neck. Has anyone had PRP? Has it helped their neck or head?!
Thanks for sharing your story. I’m glad that the surgery helped you!
@sanderson23 I had a ruptured disc at C5/C6 which initially wasn't so bad. I know when it ruptured because I was turning my head when it happened and heard the pop and my head suddenly turned farther. When that jelly like nucleus inside a disc spills out, it causes inflammation which causes bone spurs to grow as the spine tries to stabilize itself. The bone spurs and disc contents were pressing 5 mm into the spinal canal causing a little bit of spinal cord compression and a lot of pain symptoms everywhere in my body. I lost the coordination in my arms and lost muscle in my shoulder as well as had an uneven gait.
That was progressing and I saw the amount of bone spurs double in 9 months time on MRIs. The disc lost half it's height and I lost a quarter inch in height. I also had 2 mm of retrolisthesis which is slipping backwards at that level. I had a choice of fusion or artificial disc, but the artificial disc was not a great choice because of the 2mm of movement. I also opted for the fusion because I could do it with no hardware and only a bone disc spacer. With only one level fused, my neck movement is about the same as before except that I can't touch my chin to my chest anymore. This surgery was a good thing, and it gave me my life back, stopped all the pain, and prevented disability from happening. I have also done a lot of myofascial release to loosen scar tissue and keep my neck mobile. That helps a lot after surgery and on an ongoing basis to prevent spasms.
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1 ReactionThank you, this is helpful!
I have done PT 9 times for my neck! By nine times, I mean with 9 different PTs over 9 different times, full courses over 12 years or so. I do find the exercises help, but only somewhat and I have to be very careful or they can make things worse.
What was wrong at your C5-6 level that you had a fusion for, if I may ask? My neuro has cautioned me against surgery.....
@sanderson23 I'm sorry about your migraines, but you may want to consider what part your cervical disc disease may be playing in generating pain. Typicality, cervical spine issues cause muscles spasms that pull the spine out of normal alihgnmemnet. With lots of muscles attached to the vertebrae and connecting to the skull, that can generate pain when the muscles are stressed by a spasm that adds tension to them. You may want to see if physical therapy can help. If your spine degeneration is advanced, you may want to consider seeking a spine surgeon's opinion.
Injections don't fix problems, and just possibly mask dome symptoms. I don't have experience with ablations, but that may be a temporary solution or it may not give relief. You would need other opinions on that. I am a cervical spine surgery patient, and spine surgery calmed down the muscle spasms a lot. I can still have some spasms. but they are correctable with stretching. My surgery was a C5/C6 fusion which made my life better.
-
Like -
Helpful -
Hug
3 ReactionsI have chronic migraine and probable cluster headache that is doing very poorly in the last year or so but especially the last several weeks. I also have lots of degenerative changes in my C-spine, facet arthritis and degenerative disk disease. I am very very VERY cautious with procedures, but I think I finally need to consider the spine injections they are recomending as I feel like the pain in my head and in my neck are in a feedback loop. Has anyone else had either MBB (medial branch blocks) or facet steroid injections? What level and how did it go as far as decreasing headaches? (I a not so worried about the neck pain, I am worried about how it triggers the migraine). Has anyone had a (RFA) radio frequency ablation? Again, what level and did it help headaches? Did anyone have the RFA flare up their migraine and for how long?
Last question, and I don't know if there are any rules about this in this foru. If this question isn't allowed, I retract it! I really need to go to someone I know is really good, I need that confidence and trust to move forward. Does anyone have a doctor they have had these types of injections with in Oregon that was exceptional and if so, can you give me their name and tell me why you think so highly of them?
Thanks so much for your help!!