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.
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@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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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. 🙏
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1 Reaction@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.
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