My husband had cluster headaches seasonally typically spring & fall for 6-8 weeks from age 22 to 57. He & I were involved with the "Cluster Busters" group which was helpful. He used oxygen & meds. Unfortunately, he was in a cluster headache cycle & died of a sudden heart attack in 2011. My heart goes out to cluster headache victims & their families. Cluster Busters has annual meetings & does advocacy work in Washington DC & with pharmaceutical companies. 🙏
My husband had cluster headaches seasonally typically spring & fall for 6-8 weeks from age 22 to 57. He & I were involved with the "Cluster Busters" group which was helpful. He used oxygen & meds. Unfortunately, he was in a cluster headache cycle & died of a sudden heart attack in 2011. My heart goes out to cluster headache victims & their families. Cluster Busters has annual meetings & does advocacy work in Washington DC & with pharmaceutical companies. 🙏
Have you tried oxygen therapy at flow rates that support hyperventilation? It may sound scary and there are a lot of old wives tales that caution you not to breathe oxygen this fast, but it is very safe. I've 3000 hours flying Navy jet fighters and all of that flight time was spent breathing 100% oxygen at flow rates well above 30 liters/minute.
I would try this method of oxygen therapy prior to DBS surgery. In addition, most cluster headache sufferers (CH'ers) are vitamin D3 deficient. Have you had a recent 25-Hydroxyvitamin D lab test? It's also known as 25(OH)D and it's the serum level metabolite of vitamin D3. Most CH'ers presenting with active CH have 25(OH)D levels ? 50 ng/mL, (125 nmoll/L).
@batch My husband is using oxygen therapy at 15 litres per minute and it is the only thing that has helped. He will still go through cycles, but they have lessened in pain and time dramatically. It was prescribed by his neurologist.
Noise and light sensitivity are generally associated with migraines. Cluster sufferers don’t experience that,according to everything I've learned about them.
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!
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.
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.
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!🤓
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
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!👍
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@nle - I am so sorry for your loss. How terribly sad. That is great you are trying to help other patients and their families with cluster headaches.
My husband had cluster headaches seasonally typically spring & fall for 6-8 weeks from age 22 to 57. He & I were involved with the "Cluster Busters" group which was helpful. He used oxygen & meds. Unfortunately, he was in a cluster headache cycle & died of a sudden heart attack in 2011. My heart goes out to cluster headache victims & their families. Cluster Busters has annual meetings & does advocacy work in Washington DC & with pharmaceutical companies. 🙏
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1 Reaction@batch My husband is using oxygen therapy at 15 litres per minute and it is the only thing that has helped. He will still go through cycles, but they have lessened in pain and time dramatically. It was prescribed by his neurologist.
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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.
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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 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 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 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 ReactionThe 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 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!👍