I’ve just started a cluster period about two weeks ago. Been dealing with them for 6 years now. I had the idea of getting an oxygen concentrator and sleeping on it for the whole night with the hope of preventing the headaches before they even start. I usually have at least one per night and sometimes two. Using the concentrator I went four nights in a row with no headache. The fifth night I tried to sleep without it to see if they would return and I had two cluster headaches about two hours apart. I’ve been sleeping on the concentrator for the last three nights now with no headaches again. I’m going to continue using it and consult with my neurologist about it also. Not sure if this will work for everyone but it has certainly given me a ton of relief.
It all makes sense now... 10 years later I finally put it all together with this last bit of crucial info here. Protips for clusterheads are A:) More oxygen faster with better flow and proper intake hardware to maximize delivery efficiency for best effect, and B:) Screw prescription requirements, you just became an honorary wielder and you need to get you a nice tank of wielding O2, attach 40lpm+ regulator and splurge on that Cadillac demand valve to hook to it to use that tank the best and make it last long as possible between swaps. This is the way... and medical science has no damn clue about any of it or any impetus to get informed and pass it on as standard knowledge with your shiny new Episodic Cluster Headache, Intractible diagnosis. Doctors are just shit for this. Actual obstacles to care 99% of the time in my experience. Even Mayo only suggested hot pepper nasal spray at first. Unless there's profit in it there's no reason to make it accepted treatment as standard. Funny how that works. This video is certified gold. Thank you for sharing it.
I used a welding regulator with a piece of hose hooked to it for many years,just cracking the reg and taking a breath then shutting it off and holding the breath,the need to fill the lungs as quickly as possible to increase efficacy. I have since bought a demand valve it is the best you can do imo.
That was a great informative video I'd love to learn more I've been dealing with these migraines except mine don't go away I've had them for the past almost 3 years as soon as I run out of my sumatriptan shots or my oxygen at home stops working it's nightly trips in an ambulance to the hospital
Thank you for the video! When using demand valve tube does it make sense to close the nose to avoid air getting in? Or maybe use a tight mask together with demand valve?
Yes it's best practice to eliminate any outside room air. There are special facemasks for cluster 02 treatments that can be found online. You can google "O2 masks for cluster headaches."
Well your nose will close automatically close when you breathe in your mouth. Test it, just breathe in through your mouth and then cover it with your hand while you keep trying to breath in. Your nose will be closed unless you switch to your nose.
Hello I have the same type of non breather mask that I purchased from clusterbusters. Quick question, when I'm breathing in with the mask on and my strictly breathing air in through my nose only or through my mouth also? I then proceeded to take the mask off to Exhale slowly correct?
I would suggest breathing in through your mouth and nose. The more O2 the better and as quickly as possible. Deep breaths. you can just ease up on the pressure keeping the mask close to your face and sealed to surrounding air and just breath out. You don't need to remove the mask to exhale. Best of luck< Bob Wold
Bill - thank you. Where can I purchase an Oxygen Demand Valve? I live in CA and cannot find anything online or Oxygen supply stores that are familiar with them.
@@jamieregan5006 I was never able to find a demand valve online or anywhere. However, as crazy as this sounds, I was told to eat at least one persimmon per day. Either fresh or dried during my cluster headache cycles. I have since completely skipped two of my cycles with only very light regular person headaches. Persimmons have manganese and other super qualities that cured my cluster headaches... (so far).
Typically it's 15 minutes, but I will range 10-20 minutes depending on the headache. I believe the recommendation is to stay on the oxygen for 5 min after the pain goes away, but ideally don't exceed 20 mins total per session. Also do 5 min break at least between sessions (per my neurologist)
This unit does not come with a pediatric sized mask. Also, it doesn't work with a mouthpiece. Virtually no oxygen is delivered through this thing. Breathing it in that way also doesn't work. This breathing method and mask unit does not get oxygen into you fast enough. I have no idea why anyone would waste so much time in trying to kill a CLuster. You must not be in pain or something. Use a taped up non-rebreather mask and huff it in fast. That's what kills the headache. I wasted money on this junk unit. Don't bother.
Hot strong coffee and a vary hot shower on the back of your head neck helps mine I get them bad in my sleep ALLWAYS around 3 am or 6 am I ALLWAYS run to shower when I get out ice cold pack on my temple mine normal go away after 15 mins no point of pain meds by the time they kick in headaches are gone but coffee and hot ass shower really work
I’ve just started a cluster period about two weeks ago. Been dealing with them for 6 years now. I had the idea of getting an oxygen concentrator and sleeping on it for the whole night with the hope of preventing the headaches before they even start. I usually have at least one per night and sometimes two. Using the concentrator I went four nights in a row with no headache. The fifth night I tried to sleep without it to see if they would return and I had two cluster headaches about two hours apart. I’ve been sleeping on the concentrator for the last three nights now with no headaches again. I’m going to continue using it and consult with my neurologist about it also. Not sure if this will work for everyone but it has certainly given me a ton of relief.
What flow rate do you sleep at?
I have the exact same advise from my experience he is 100% correct on all of this. Great video
Thanks. Big help for me this video!
It all makes sense now... 10 years later I finally put it all together with this last bit of crucial info here. Protips for clusterheads are A:) More oxygen faster with better flow and proper intake hardware to maximize delivery efficiency for best effect, and B:) Screw prescription requirements, you just became an honorary wielder and you need to get you a nice tank of wielding O2, attach 40lpm+ regulator and splurge on that Cadillac demand valve to hook to it to use that tank the best and make it last long as possible between swaps.
This is the way... and medical science has no damn clue about any of it or any impetus to get informed and pass it on as standard knowledge with your shiny new Episodic Cluster Headache, Intractible diagnosis. Doctors are just shit for this. Actual obstacles to care 99% of the time in my experience. Even Mayo only suggested hot pepper nasal spray at first. Unless there's profit in it there's no reason to make it accepted treatment as standard. Funny how that works.
This video is certified gold. Thank you for sharing it.
Thank you for sharing 👍
I used a welding regulator with a piece of hose hooked to it for many years,just cracking the reg and taking a breath then shutting it off and holding the breath,the need to fill the lungs as quickly as possible to increase efficacy. I have since bought a demand valve it is the best you can do imo.
Thanks for sharing
This was very helpful, really thanks!
That was a great informative video I'd love to learn more I've been dealing with these migraines except mine don't go away I've had them for the past almost 3 years as soon as I run out of my sumatriptan shots or my oxygen at home stops working it's nightly trips in an ambulance to the hospital
thanks Bill!
Shoutout to the homie in the Carnifex shirt
Very informative, thank you. Been using a cheap rebreather for years, time to try something different.
Thanks for this. Waiting for insurance, pharmacy and my neurologist to quit their bureaucractics & get me my stuff…
Thank you for the video!
When using demand valve tube does it make sense to close the nose to avoid air getting in?
Or maybe use a tight mask together with demand valve?
Yes it's best practice to eliminate any outside room air. There are special facemasks for cluster 02 treatments that can be found online.
You can google "O2 masks for cluster headaches."
Well your nose will close automatically close when you breathe in your mouth. Test it, just breathe in through your mouth and then cover it with your hand while you keep trying to breath in. Your nose will be closed unless you switch to your nose.
Hello I have the same type of non breather mask that I purchased from clusterbusters. Quick question, when I'm breathing in with the mask on and my strictly breathing air in through my nose only or through my mouth also? I then proceeded to take the mask off to Exhale slowly correct?
I would suggest breathing in through your mouth and nose. The more O2 the better and as quickly as possible. Deep breaths.
you can just ease up on the pressure keeping the mask close to your face and sealed to surrounding air and just breath out. You don't need to remove the mask to exhale.
Best of luck<
Bob Wold
Where an I purchase an oxygen demand valve?
Bill - thank you. Where can I purchase an Oxygen Demand Valve? I live in CA and cannot find anything online or Oxygen supply stores that are familiar with them.
@Brian - I'm curious if you were able to find the Oxygen Demand Valve options? I live in NJ and also struggling to find options here... Thanks!
Also currently looking for the demand valve/regulator. Anyone find it online?
@@jamieregan5006 I was never able to find a demand valve online or anywhere. However, as crazy as this sounds, I was told to eat at least one persimmon per day. Either fresh or dried during my cluster headache cycles. I have since completely skipped two of my cycles with only very light regular person headaches. Persimmons have manganese and other super qualities that cured my cluster headaches... (so far).
@@brianbruschke6637 wow! That’s definitely easy and worth a try!
@@brianbruschke6637 someone on the clusterheads discord just suggested trying eBay or aliexpress. I’m going to look into it.
I've been getting a lot of trouble to find the oxygen demand valve, can anyone help?
What is the mouth piece called?
Would this help phantom pain?
You need to change the wall art!?
How long such session?
Typically it's 15 minutes, but I will range 10-20 minutes depending on the headache. I believe the recommendation is to stay on the oxygen for 5 min after the pain goes away, but ideally don't exceed 20 mins total per session. Also do 5 min break at least between sessions (per my neurologist)
@@alyssabaldwin5526
Perfect. THX
This unit does not come with a pediatric sized mask. Also, it doesn't work with a mouthpiece. Virtually no oxygen is delivered through this thing. Breathing it in that way also doesn't work. This breathing method and mask unit does not get oxygen into you fast enough. I have no idea why anyone would waste so much time in trying to kill a CLuster. You must not be in pain or something. Use a taped up non-rebreather mask and huff it in fast. That's what kills the headache. I wasted money on this junk unit. Don't bother.
Hot strong coffee and a vary hot shower on the back of your head neck helps mine I get them bad in my sleep ALLWAYS around 3 am or 6 am I ALLWAYS run to shower when I get out ice cold pack on my temple mine normal go away after 15 mins no point of pain meds by the time they kick in headaches are gone but coffee and hot ass shower really work