I had my first ever cluster headache episode 2 weeks ago. I have never experienced such agony in my life. The only thing that comes close were the earaches I had at age 4-5 which most of my older male siblings had as well. I started another episode 2 days ago and I thought it was passing but it/they keep coming back. It has changed from one side to both sides and it's a 1-2-3 punch that I cannot take much more of. I don't think I've passed out from the pain, sometimes wishing I would. I'm 62 and not a smoker and haven't had a drink in 3 years now. It's coming on again now. Is this story bringing any help or advice please. Thank you.
@kgking101 - welcome to Mayo Clinic Connect. Sorry to hear your cluster headaches are such that you have never experienced such agony in your life. Having it be so bad you wish you would pass out is intense pain.
I had my first ever cluster headache episode 2 weeks ago. I have never experienced such agony in my life. The only thing that comes close were the earaches I had at age 4-5 which most of my older male siblings had as well. I started another episode 2 days ago and I thought it was passing but it/they keep coming back. It has changed from one side to both sides and it's a 1-2-3 punch that I cannot take much more of. I don't think I've passed out from the pain, sometimes wishing I would. I'm 62 and not a smoker and haven't had a drink in 3 years now. It's coming on again now. Is this story bringing any help or advice please. Thank you.
@kgking101 I am so sorry you are being stricken by these vicious headaches. Please keep a diary/journal noting as to when (time of day) they "start," how long each lasts, and any activities, food/drinks/meds injested, environmental triggers (light, temperature, barametric pressure, etc) or other triggers (stress) that might be involved. Have you discussed wth your MD or neurologist? Have you tried any acute meds or other measures? I don't think mine are the same as yours so I'm not sure my preventatives would help you. Mine start during REM sleep, and awaken me each of 4 REM sleep intervals nightly. Extreme pain, can't sit or lay down, have to pace for hours holding my ears and eyes in place as they feel like they are doing to explode. Ends up with vomiting and diarrhea if 3 hours or more. No migraine meds helped, and no other meds or measures helped until a headache specialist (neuro) identified the pattern as Hypnic headaches, but with Cluster headache symptoms. My only relief is preventative Indomethacin nightly plus Melatonin, and taking a med to prevent gastric bleeding from the Indo. (Protonix, generic is pantoprazole). I used to also drink a cup of coffee (then later 1/2 cup) prior to bedtime which also helped. But I can't be sure what you are experiencing would respond to these treatments. I hope you can see a specialist as your headaches are extremely painful and disabling. Praying you can get help and relief.
Hi. I have suffered and I say suffered from cluster headaches since 1976. It has been 50 years this year. They came every 3 years when I was younger and in my teens and started coming every 2 years thereafter. I was not diagnosed with them until I was 27 in 1994. I have to taken everything and then some in forms of medication and the only what I call miracle drug was the imetrex injections. But you can only use them sparingly. And when you get 3 or 4 in a 24 hour period it will help with one but you are screwed for the others. They stopped when I was 47 for 8 years and I thought they were gone for good but they came back in 2024 with a vengeance. And now I am going through another bout 2026. These ones really hurt. I am taking verapamil daily 250 mg and have sumatripan tablets for when I feel a cloud but some are only 15 min and some are 1-2 hours long so I dont even know if the sumatripan is working. For me the bouts usually last 90 days. 90 excruciating days. I am now 59 and am halfway 45 days in. They do not have the injections for me anymore and so I am stuck just having to suffer through them everyday. 50 years of uncertainty is a lot on a person. I can't work during the episodes and the government does not recognize it as a disability. I have 4 daughters and two of them are only 11 and 12 and my wife gets 28 regular migraines a month so we are struggling to make ends meet when I am down. All I can say is I would not wish these on my worst enemy and hope others find the relief they need as these are the worst sort of pain imaginable. I even asked my doctor in the 99s if we could take my right eye out if it would stop the pain but sigh, no.
Sorry to hear what your going through as I have suffered from the same issues for the past 10 years and tried so many different drugs, scans until recently when I went to the doctors as I couldn’t cope anymore and this doctor who I’ve not seen before suggested I drop all the drugs and do neck exercises 3-4 times a day and wow! I’ve not had a migraine for the past 6 weeks, there are plenty of videos on YouTube to get you started good luck!
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@kgking101 - welcome to Mayo Clinic Connect. Sorry to hear your cluster headaches are such that you have never experienced such agony in your life. Having it be so bad you wish you would pass out is intense pain.
I'm hoping others who've talked about cluster headaches here such as @mnvo96 @jennieb @robertklauscher @slefman @taterjoy @joeratliff @sonofpicard @chipshot will chime in with any help or advice for controlling the pain from cluster headaches.
kgking101, have you encountered anything that brings you relief, even temporarily?
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3 Reactions@kgking101 I am so sorry you are being stricken by these vicious headaches. Please keep a diary/journal noting as to when (time of day) they "start," how long each lasts, and any activities, food/drinks/meds injested, environmental triggers (light, temperature, barametric pressure, etc) or other triggers (stress) that might be involved. Have you discussed wth your MD or neurologist? Have you tried any acute meds or other measures? I don't think mine are the same as yours so I'm not sure my preventatives would help you. Mine start during REM sleep, and awaken me each of 4 REM sleep intervals nightly. Extreme pain, can't sit or lay down, have to pace for hours holding my ears and eyes in place as they feel like they are doing to explode. Ends up with vomiting and diarrhea if 3 hours or more. No migraine meds helped, and no other meds or measures helped until a headache specialist (neuro) identified the pattern as Hypnic headaches, but with Cluster headache symptoms. My only relief is preventative Indomethacin nightly plus Melatonin, and taking a med to prevent gastric bleeding from the Indo. (Protonix, generic is pantoprazole). I used to also drink a cup of coffee (then later 1/2 cup) prior to bedtime which also helped. But I can't be sure what you are experiencing would respond to these treatments. I hope you can see a specialist as your headaches are extremely painful and disabling. Praying you can get help and relief.
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Hug
2 ReactionsHi. I have suffered and I say suffered from cluster headaches since 1976. It has been 50 years this year. They came every 3 years when I was younger and in my teens and started coming every 2 years thereafter. I was not diagnosed with them until I was 27 in 1994. I have to taken everything and then some in forms of medication and the only what I call miracle drug was the imetrex injections. But you can only use them sparingly. And when you get 3 or 4 in a 24 hour period it will help with one but you are screwed for the others. They stopped when I was 47 for 8 years and I thought they were gone for good but they came back in 2024 with a vengeance. And now I am going through another bout 2026. These ones really hurt. I am taking verapamil daily 250 mg and have sumatripan tablets for when I feel a cloud but some are only 15 min and some are 1-2 hours long so I dont even know if the sumatripan is working. For me the bouts usually last 90 days. 90 excruciating days. I am now 59 and am halfway 45 days in. They do not have the injections for me anymore and so I am stuck just having to suffer through them everyday. 50 years of uncertainty is a lot on a person. I can't work during the episodes and the government does not recognize it as a disability. I have 4 daughters and two of them are only 11 and 12 and my wife gets 28 regular migraines a month so we are struggling to make ends meet when I am down. All I can say is I would not wish these on my worst enemy and hope others find the relief they need as these are the worst sort of pain imaginable. I even asked my doctor in the 99s if we could take my right eye out if it would stop the pain but sigh, no.
-
Like -
Helpful -
Hug
4 ReactionsSorry to hear what your going through as I have suffered from the same issues for the past 10 years and tried so many different drugs, scans until recently when I went to the doctors as I couldn’t cope anymore and this doctor who I’ve not seen before suggested I drop all the drugs and do neck exercises 3-4 times a day and wow! I’ve not had a migraine for the past 6 weeks, there are plenty of videos on YouTube to get you started good luck!