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.
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. 🙏
I've only had these cluster headaches 4 weeks now and it seems they are receding. Thank goodness as the pain will bring me to tears sometimes. I am 71 and have had sinus headaches in the past during allergy season but nothing quite as long lasting as this. Went to the emergency room finally and had a CT scan to be sure of no tumors and got some relevant drugs for the pain. Had to fly to my oldest friends wake which was so painful in so many ways. Think of a three-and-a-half-hour cluster headache! this was before I got the pain meds. Chewing ice cubes helped a little bit. Only getting a dull headache now where the severe headache was the past two days. We'll see.
I wish I could offer solutions to people with cluster headaches but my experience is disappointing.
I first had cluster headaches when I was nineteen. Like others, pain was extreme. I sought help, initially at my university clinic and then at my GP and with neurologists but really to no avail. The neurologists said that I’d probably “grow out of it”. More on that later.
Drugs really didn’t help. I was prescribed ergotamine which didn’t help. I don’t think imitrex is helpful with cluster headaches. Codeine, which is over the counter in Canada, sort of helped, although initially the clinicians gave me more than I needed leaving feeling kind of “washed out” post headache. One of the issues with drugs was that the duration of my headaches was relatively short, an hour or maybe two. I don’t think drugs usually took effect until after. I recall that with codeine, I often felt “stoned with a headache”.
I did suggest lidocaine nasal spray to my GP who sent me to a compounding pharmacy who made it. It did help a bit - I think.
Ice packs were helpful, virtually freezing one side of my head.
Unfortunately the neurologists were right. My headaches went away when I was in my early forties. Over twenty excruciating years.
I became aware of triggers. Some were obvious. Low barometric pressure was obvious. Glare and scent could result in immediate headaches. Alcohol, especially red wine was an issue. Chocolate too. Aspertame was a problem. Nitrates seemed to be factor - I’d sometimes get a headache while I still had a nitrate-cured food in my my mouth (smoked
oysters - wow!).
Sometimes my headaches occurred “post-stress”. And sometimes they occurred after an “aura”, in my case it was a feeling of well-being. It was pretty sad.
Sometimes, my headaches ended suddenly, with a feeling of coldness. I wonder if that was shock.
In all, it was hideously painful and I probably would have benefitted from a support group but so few people (none I knew) had cluster headache.
It’s surprising that I could be happy and functional most of the time and yet frequently stricken with immobilizing yet brief pain.
I like your attitude. Wow, can you give us the links to the videos please? I do not have this condition but do suffer migraine headaches sometimes. I think they are hereditary because one of my grandmoms used to get them also. One of my sisters gets them frequently, mine are under control and very infrequent.
@nativefloridian I agree headacks (no matter what type) runs in families. My Mom would have mirgraines. I can remember being six yrs old and she would be vomiting!!! my sister eleven months younger than myself have had MRI, scans, trying to figure out what causes hers. I have had ON headacks for many yrs, it was not until I got a good Nueraglist explaned what had I began to get help. Twenty years later they are worse when I have my flare ups however, along with the help and tips from this web sight I feel really positive. I have a pain Dr. that gives me, trigger shots, nerve blocks, every few months. I began researching exercses that help my neck muscles, purchased a cervical log pillow (so much at help sleeping) visit clincial therapy massage once a month, she works on my neck, head, should, lower back only. Got a good hot water bottle. Do my 30 min. every morning on my Gazelle Freestyle machine ( I wish I could walk, but we live in country . learned how to relaxe, quite time on my yoga mat doing 4 min. of posture exercises told by "Japans Oldes Dr. on improving your posture ( even when we are older.. Thinking as positive as I can and caring for my self and being kind to you my fellow surferers. Lets face it people who do not suffer from these terrible pain on regular basis really cannot understand so I dont talk about it. But I can in the web sight because you know eactly what we go through each day. The very best to all. Fr Northern Calif.
I've only had these cluster headaches 4 weeks now and it seems they are receding. Thank goodness as the pain will bring me to tears sometimes. I am 71 and have had sinus headaches in the past during allergy season but nothing quite as long lasting as this. Went to the emergency room finally and had a CT scan to be sure of no tumors and got some relevant drugs for the pain. Had to fly to my oldest friends wake which was so painful in so many ways. Think of a three-and-a-half-hour cluster headache! this was before I got the pain meds. Chewing ice cubes helped a little bit. Only getting a dull headache now where the severe headache was the past two days. We'll see.
@charliewheels I suffer from Occipital Neugralga the last fare up last three weeks 24/7. My Dr. were out of the country so I was unable to get Nerve Block shots (our hospital here only gave me Mingraine cocktail. It worked for about 12 hrs then wow. It finally left, but have sometype of headacks every day.
@charliewheels I suffer from Occipital Neugralga the last fare up last three weeks 24/7. My Dr. were out of the country so I was unable to get Nerve Block shots (our hospital here only gave me Mingraine cocktail. It worked for about 12 hrs then wow. It finally left, but have sometype of headacks every day.
@lisalucier Thank you for asking. I am doing good, last night I had slight acking. I began right away excerising. Took very hot shower and used my BodybackBuddy, next morning feeling very good. It is just keeping on top of my muscles. Thank goodness for U-tube Dr. Saunder, & My Cervical Log Pillow.
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.
Connect
Connect
Like
Helpful
Hug
@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.
-
Like -
Helpful -
Hug
2 ReactionsMy 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. 🙏
-
Like -
Helpful -
Hug
2 Reactions@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.
I've only had these cluster headaches 4 weeks now and it seems they are receding. Thank goodness as the pain will bring me to tears sometimes. I am 71 and have had sinus headaches in the past during allergy season but nothing quite as long lasting as this. Went to the emergency room finally and had a CT scan to be sure of no tumors and got some relevant drugs for the pain. Had to fly to my oldest friends wake which was so painful in so many ways. Think of a three-and-a-half-hour cluster headache! this was before I got the pain meds. Chewing ice cubes helped a little bit. Only getting a dull headache now where the severe headache was the past two days. We'll see.
-
Like -
Helpful -
Hug
3 ReactionsI wish I could offer solutions to people with cluster headaches but my experience is disappointing.
I first had cluster headaches when I was nineteen. Like others, pain was extreme. I sought help, initially at my university clinic and then at my GP and with neurologists but really to no avail. The neurologists said that I’d probably “grow out of it”. More on that later.
Drugs really didn’t help. I was prescribed ergotamine which didn’t help. I don’t think imitrex is helpful with cluster headaches. Codeine, which is over the counter in Canada, sort of helped, although initially the clinicians gave me more than I needed leaving feeling kind of “washed out” post headache. One of the issues with drugs was that the duration of my headaches was relatively short, an hour or maybe two. I don’t think drugs usually took effect until after. I recall that with codeine, I often felt “stoned with a headache”.
I did suggest lidocaine nasal spray to my GP who sent me to a compounding pharmacy who made it. It did help a bit - I think.
Ice packs were helpful, virtually freezing one side of my head.
Unfortunately the neurologists were right. My headaches went away when I was in my early forties. Over twenty excruciating years.
I became aware of triggers. Some were obvious. Low barometric pressure was obvious. Glare and scent could result in immediate headaches. Alcohol, especially red wine was an issue. Chocolate too. Aspertame was a problem. Nitrates seemed to be factor - I’d sometimes get a headache while I still had a nitrate-cured food in my my mouth (smoked
oysters - wow!).
Sometimes my headaches occurred “post-stress”. And sometimes they occurred after an “aura”, in my case it was a feeling of well-being. It was pretty sad.
Sometimes, my headaches ended suddenly, with a feeling of coldness. I wonder if that was shock.
In all, it was hideously painful and I probably would have benefitted from a support group but so few people (none I knew) had cluster headache.
It’s surprising that I could be happy and functional most of the time and yet frequently stricken with immobilizing yet brief pain.
-
Like -
Helpful -
Hug
2 Reactions@nativefloridian I agree headacks (no matter what type) runs in families. My Mom would have mirgraines. I can remember being six yrs old and she would be vomiting!!! my sister eleven months younger than myself have had MRI, scans, trying to figure out what causes hers. I have had ON headacks for many yrs, it was not until I got a good Nueraglist explaned what had I began to get help. Twenty years later they are worse when I have my flare ups however, along with the help and tips from this web sight I feel really positive. I have a pain Dr. that gives me, trigger shots, nerve blocks, every few months. I began researching exercses that help my neck muscles, purchased a cervical log pillow (so much at help sleeping) visit clincial therapy massage once a month, she works on my neck, head, should, lower back only. Got a good hot water bottle. Do my 30 min. every morning on my Gazelle Freestyle machine ( I wish I could walk, but we live in country . learned how to relaxe, quite time on my yoga mat doing 4 min. of posture exercises told by "Japans Oldes Dr. on improving your posture ( even when we are older.. Thinking as positive as I can and caring for my self and being kind to you my fellow surferers. Lets face it people who do not suffer from these terrible pain on regular basis really cannot understand so I dont talk about it. But I can in the web sight because you know eactly what we go through each day. The very best to all. Fr Northern Calif.
-
Like -
Helpful -
Hug
2 Reactions@charliewheels I suffer from Occipital Neugralga the last fare up last three weeks 24/7. My Dr. were out of the country so I was unable to get Nerve Block shots (our hospital here only gave me Mingraine cocktail. It worked for about 12 hrs then wow. It finally left, but have sometype of headacks every day.
-
Like -
Helpful -
Hug
1 Reaction@suszy39 - how's it going?
@lisalucier Thank you for asking. I am doing good, last night I had slight acking. I began right away excerising. Took very hot shower and used my BodybackBuddy, next morning feeling very good. It is just keeping on top of my muscles. Thank goodness for U-tube Dr. Saunder, & My Cervical Log Pillow.
Warm Regards
-
Like -
Helpful -
Hug
1 ReactionHello all,
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.
-
Like -
Helpful -
Hug
1 Reaction