Using oxygen

[Royster]

Good evening all, I'm asking for advice on the O2. I've been taking it for over 20 years, but in the UK can only get 15ltrs p.min. it works for me if the pain is below say a 5 or less( however when I've not had access to it it goes away on its own roughly the same speed but anything over 6 in particular 8-10 all it does is seem to prolong the attack, going from the worst pain, then you think it's going and then comes back with  avengeance, and the process repeats several times, a lot of the times switching sides from right to left and can go on for 90 mins, but without O2 tend to last half the time or 1hr max.( since being diagnosed as cch I've always had it on both sides even center of my skull). I'm not sure if it's the amount I'm having 15ltr or if it's a certain technique I'm not following,  the mask is non breathable. I've heard or read somewhere that I need to hyperventilate or something???? Can anyone tell me what this is please or where I'm going wrong as I believe most suffering can abort the attack in less than 15mins even when it's at its peak. Thank you I would welcome any help.

[Vajenna]

Do you drink caffeine at the same time? I find oxygen works best with an energy drink or I prefer a screaming hot cup of strong coffee. 
I also use a 15 lpm regulator. I have one that goes to 25, I bought it on Amazon and you might be able to do the same (I’m in the US so not sure on this). I personally am afraid to use it because my oxygen company was very clear about not using anything except what they give me and if they ever found out and I lost the tank I would be in shambles. 
I find I have to stand to get the oxygen to work well. Deep breathing using my diaphragm to empty the entire bags worth of o2 deep into my lungs and then slowly exhale trying to match the speed of the bag refilling. And at the end I lean/crunch forward to try and push as much air out of my lungs as possible. This is what I finds works for me. 
Hopefully someone on here will chime in and link the video because I do believe there is a video somewhere of a breathing technique. 
Also time is of the essence. I can almost never get rid of one past a certain point either. 

[Royster]

Thank you, Vajenna, yes I've tried all them techniques you mention and I can't fiddle about with my cylinder what so ever if I did it would probably blow my house up lol. I've seen these valves where you can up the Ltrs p. minute but look nothing like the one I have everything seems welded together. And once it peaks, there's no chance of me staying on it as I'm all over the place, banging, slamming, rocking, crawling, dunking my head in ice bucket. I'm like a possessed demon screaming and crying. I'm attending the Glasgow conference in 6 weeks I'm sure I'll get so much information and knowledge there. I'm new to this site and its been a god send I've learned more in 1 week than I have from all off my health care professionals. I wish you and all other sufferers well on our independent journeys to find what works for us all.

[BoscoPiko]

15 LPM's can be insufficient for some but generally decent if  you are not outrunning the bag on your non rebreather. Hyperventilating is just one method amongst many so don't get caught up on one method. Try many.. deep and hold, short, quick and hold, etc. I also experience better success at lower thresholds of pain/intensity. That's not to say that you can't abort a thunder striker. Caffeine is a helpful tool however at a scorching temp you are setting yourself back in the abort process with the inability to get the caffeine into your system quick . Try making strong coffee and placing in the fridge so that it's cool enough to down and get back to the 02.  The trifecta experience you have with left, rt and center is rare but not impossible. As far as what hyperventilating is ...think of the kid with the brown paper bag breathing as fast and hard as he can until on the verge of passing out or puking. (Not suggesting that you do this but trying to paint a pick).  Sorry you are battling the  cluster bunny but hopeful you can slay him.. 

[Vajenna]

1 hour ago, BoscoPiko said:

at a scorching temp you are setting yourself back in the abort process with the inability to get the caffeine into your system quick

Woo not me  I take the pain of the hot coffee as a great distraction.

[CHfather]

7 hours ago, Royster said:

I've heard or read somewhere that I need to hyperventilate or something???? Can anyone tell me what this is please 

A description of hyperventilation from an O2 expert (the ex fighter pilot you mention in another post, who is indeed a hero in this battle) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

In essence, it's fast, deep inhales and exhales (each inhale/exhale taking three seconds).  The recommended process in the file is 10 3-second inhale/exhales (30 seconds total) of room air, with a forceful "crunch" of the abdominal muscles at each exhale.  The author of the file writes, "The exhale part of this procedure is important.  Exhale rapidly until it feels like your lungs are empty...  They're not.  At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion."  After the 30 seconds of hyperventilation with room air, take a deep inhale of O2.  Hold the O2 for 30 seconds, exhale forcibly, and do another 30-second cycle of 10 inhales/exhales.  You should read the file so you fully recognize what's going on there.

Are you able to post a photo of your mask?  It has a bag that fills up with O2 before you inhale?  It has two circles of holes, one or both of which have a white or green gasket on the inside of the mask, but the other is just open holes?  (One thing you can do that might help a little is to cover those open holes with tape or with your thumb, because they let room air mix with the O2 you are inhaling.)  Your O2 is in a canister/tank/cylinder?

So glad you're going to the conference!  Wish it was sooner. 

Have you tried any other strategies to manage the pain of your attacks?  Can't even imagine having it on both sides.  Some people find that standing in very hot water helps, with some variations from there (for example, some walk out into a cold room and the back into the tub, some get more immersed than just standing, some simultaneously put an ice pack on the head).   

Edited March 20, 2023 by CHfather

[Royster]

Thanks CHFATHER,  seems a bit complicated I think i will try and get a demo of someone at Glasgow (will you be going?). Another thing is I've noticed the 3ltr mask(green) is better I've tried to order of clusterheadaches.com but they haven't any in stock, they don't sell them on amazon in the u.k but do in other countries but works out with shipping to be about 75 dollars and I'm unsure whether the tubing,  connections are different ( I've attached some photos of mine).So I'm going to phone ouch uk today. Also I would like to increase the flow to 25 or more but I don't think I could fit a regulator on these. I haven't tried the shower thing as mine peak within minutes if I don't take sumatriptan. I do however have at the ready a large bucket filled with water and at the onset empty ice into it and dip my head in until my head is at the point of freezing, which does counter act the pain of the cluster some what, but honestly I don't think it changes the duration time, or actually does anything it's something I've always done in a bad cluster as my head and body gets awfully hot. I've managed to plead and get a small course of prednisone and what a difference less than a day has made, I almost feel human again. Also I've started the D3 regime that batch(fighter pilot) discovered,  such a clever man. But going to hold back for now until this cycle isn't so bad, because I believe its the same as vit m & vit L in that you can't take preventative or abortive. Thank you for all your help & advice and I hope I will see you in Glasgow.

[Royster]

[Royster]

I do like that idea of a trash bag and coke bottle, I'm on that hopefully today, this sites full of tricks and advice, I love it.

[Dallas Denny]

@Roysterin my experience over the years, they will be available soon...usually not out of stock for long albeit they are quite expensive when going to other countries but even at $75, it would be worth it for me....been using them for close to 15 years...just retired my 1st a couple years ago!! The best feature for me is it comes with a mouthpiece....having anything touch my face during a hit just adds to the pain but the mouthpiece works great!

One tip about O2 efficacy.....myself, Spiny and many others have found that incorporating caffeine into the mix enhances the efficacy of O2...I keep cup in the microwave, nuke it as soon as a hit starts, get on the O2 for a min then sip coffee and blow the steam on my affected eye for 30 secs and back on the O2....that coupled with years of busting have resulted in my being able to dispatch the vast majority of my hits to 5 min when a cycle does break thru!

DD

[BoscoPiko]

11 hours ago, Vajenna said:

Woo not me  I take the pain of the hot coffee as a great distraction.

I get it! Distractions are welcomed in the CH world but I'm a sissy when it comes to molten lava coffee (the kind that leaves your taste buds dead anyway) 

[CHfather]

3 hours ago, Royster said:

 Also I've started the D3 regime that batch(fighter pilot) discovered,  such a clever man. But going to hold back for now until this cycle isn't so bad, because I believe its the same as vit m & vit L in that you can't take preventative or abortive.

I'm pretty sure all preventives/abortives are okay with the D3 regimen.  Take verapmil as far apart as possible from the calcium (because verapamil is a calcium channel blocker).

Be sure to cover those open holes in your mask.

WOW!  I'd love to know what that giant thing is on top of your tank!  I get that it's a "regulator," but there has to be more than that going on.   Maybe @Racer1_NC knows.

I wonder whether there might be some of the green masks (the ClusterO2 Kit) available at the conference?  That would be a good opportunity for them, and if they shipped a bunch or someone brought a bunch, maybe they could be less expensive??  Maybe you might contact the conference organizers and ask/suggest??

Another thing popularized by Batch, as an abortive, is to give yourself "brain freeze" by getting something very cold to the roof of your mouth, such as an ice cube.  Since you have that bucket there already, maybe give it a try??

Edited March 20, 2023 by CHfather

[Racer1_NC]

2 hours ago, CHfather said:

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WOW!  I'd love to know what that giant thing is on top of your tank!  I get that it's a "regulator," but there has to be more than that going on.   Maybe @Racer1_NC knows.

I wonder whether there might be some of the green masks (the ClusterO2 Kit) available at the conference?  That would be a good opportunity for them, and if they shipped a bunch or someone brought a bunch, maybe they could be less expensive??  Maybe you might contact the conference organizers and ask/suggest??

 

Now that thing is a new one to me....just a wild guess would be a very over engineered built in regulator.

Ainsley could answer if DJ is sending any masks over for the UK conference. If nothing has been arranged, I would be glad to bring a few over if a need exists.

Knowing that any built-in regulator I've seen from the UK has a 15lpm max flow, I've sourced some "Y" connectors and some short tubing for a work around for those that want a higher flow than 15lpm. If one has access to more than one tank it will increase flow to your mask. Referencing the picture below, you'll find it's rather simple. Hook to both tanks and regulate the flow as needed. I plan to bring some of these to the UK, but the\ parts are available on Amazon for a few bucks. 

Edited March 20, 2023 by Racer1_NC
clarity

[Royster]

Racer1, that's a brilliant idea about the y tubing I'll have to give it a go, I have 4 large cylinders 2,400 ltrs each on script I could go crazy, and get 60ltr p.min . Also I'm gonna look at that idea I think CHFATHER sent about the link of a homemade mask from a coke btl, tape and I'll use a refuse bag, that should definitely abort it lol. Thanks for the info. N.B I've attached the regulator it's solidly attached like all in the u.k so I don't think I can pimp it up with the ones you can get in the states.

[Racer1_NC]

Yeah, it doesn't look like it offers any easy method of modification. BOC might raise some hell if they found out a customer was tampering with the valve. 

[Royster]

5 hours ago, Dallas Denny said:

@Roysterin my experience over the years, they will be available soon...usually not out of stock for long albeit they are quite expensive when going to other countries but even at $75, it would be worth it for me....been using them for close to 15 years...just retired my 1st a couple years ago!! The best feature for me is it comes with a mouthpiece....having anything touch my face during a hit just adds to the pain but the mouthpiece works great!

One tip about O2 efficacy.....myself, Spiny and many others have found that incorporating caffeine into the mix enhances the efficacy of O2...I keep cup in the microwave, nuke it as soon as a hit starts, get on the O2 for a min then sip coffee and blow the steam on my affected eye for 30 secs and back on the O2....that coupled with years of busting have resulted in my being able to dispatch the vast majority of my hits to 5 min when a cycle does break thru!

DD

Thanks Denny, I'm just not sure, if it's compatible,  I've gone 24 yrs on this  I'm hopeful I can view your guys set up at the Glasgow conference and have a demo and technique etc.. hyperventilating and all that. I've heard a lot about coffee I've tried necking a ltr of red bull, without joy just bad case of hiccups, I've nut done coffee,  I'll try it. Do these caffeine supplements do anything?? Anyway I've lots to try and do, I'm so glad I joined this community you've all been so welcoming and full of great advice.

[Royster]

7 minutes ago, Racer1_NC said:

Yeah, it doesn't look like it offers any easy method of modification. BOC might raise some hell if they found out a customer was tampering with the valve. 

Yes there health and safety gone mad over here, and probably withdraw my prescription, do you reckon I could get 2 on the go though and bring it up to 30 ltrs with the y tubing??

[Racer1_NC]

I tried it here before posting it up just to be sure it would work like I expected. I have no way to measure the end flow rate, but you can rest assured it will make a very noticeable difference in what you get at your mask. My subjective observation is that it seemed to be at least 25lpm.

A quality mask will make a large difference in your abort times as well.

[Vajenna]

@Racer1_NC

this is so smart!!! Kudos to you 

[Royster]

2 hours ago, Racer1_NC said:

I tried it here before posting it up just to be sure it would work like I expected. I have no way to measure the end flow rate, but you can rest assured it will make a very noticeable difference in what you get at your mask. My subjective observation is that it seemed to be at least 25lpm.

A quality mask will make a large difference in your abort times as well.

CHFATHER,  SENT ME THIS LINK,  GOOD IDEA IN PRINCIPLE,  CAN MAKE THE BAG AS BIG AS YOU WANT, AND USE AS MANY TUBES, AND CYLINDERS AS YOU WANT. NY WEEKEND PROJECT.

[Dallas Denny]

@Royster, I had a chat with Lady Ainslie Course, our clusterbusters vice president, who will be your host at the conference....she's fairly certain that our founder, Bob Wold, will be bringing some Clustero2kits.....send me a pm with your name and she said she would try to put one back for you!!

[spiny]

Royster, the redneck bag is great to get the O2 supply up to where you need it. One word of caution is do not advance set up the bags of O2. I have built many of them myself and was cautioned by Racer1_NC not to leave them lying around due to the possibility of an explosion: based on the possible leak of O2 that would raise the ambient O2 to a dangerous level. So, I would start filling a bag with O2 when I was downing my coffee. That gave the slow regulator time to start filling the bag so that I had plenty for each inhale. Then, when I was doing my 'post breathing', I would turn off the regulator and pull down the contents of the bag by breathing it. That keeps the environment safe. Storing the O2 in the bags is a bad idea. I strongly suggest that you do the same! The bin bag is not going to contain the O2 for a long time without it escaping into the atmosphere. That plastic is permeable. BE careful! So, suck it down and leave it empty until you have a hit to deal with. In your situation, I would leave the bag on between hits to save time and tubing. If you make the tube long, then you have plenty of room to pace.

I don't recall reading if you are doing 'post breathing' or not? That is when you stay on the O2 and breathe normally when the pain is gone for another 5 minutes. The 'Y' connector that Racer showed you is a brilliant idea! That should offer a much better chance of killing a hit. So hang onto doing Post Breathing!! 

Additionally, many find that keeping some cold caffeine at the ready is a huge help. I do! Iced coffee in the fridge, as well as V8 Energy. Most find that cold is the best when hitting the caffeine. Some will take an ice cube and put it on the CH side, holding it on the palate as it melts. A bit less dramatic than your bucket dunk. BTW: When do you prep that bucket of ice? When the hit is starting? I would expect that you would do better to spend your ramp-up time huffing O2 as opposed to doing anything else! Thye faster you hit the O2, the better your chance of killing the hit.

If you know when your first hit will come, then you can take evasive measures by downing some caffeine before the hit is expected. That can, at times, eliminate the first hit. One aborted before it starts is always a bonus! 

You can also put your feet or lower body into a shallow bath with very hot water. Add more hot water as you adjust to it or it cools down. Perhaps place some ice on your head. I use a cool washcloth as the 'cold' of ice is too much of a shock to my system, but others swear by it. The idea is to open the blood vessels of your lower body and reduce blood in the upper parts - mainly your head. 

Questions: Has O2 ever worked for you? Have you had an MRI of your noggin in the last 5 years? How does it feel to have a CH in the center of your head? When does it side-switch during a hit? That part of your description has me baffled. Yes, some do side switch during a cycle. Some have one cycle on one side and then another on the opposite side. But what you describe is different. 

[Royster]

Spiny, thank you for all that information and reaching out to help my situation. ( are you going to Glasgow?) as my brain cannot dissect all of that information, I'm hoping yourself and other fantastic people that have also given outstanding new methods could take me through it at the conference,  as I don't want to take to many risks and be doing it all wrong I've been this way for 24 years now and in 6 weeks with wonderful advice from clusterbusters family,  I think my quality of life should be much improved. I will be bringing hopefully my tanks with me if I drive if not and get the train, I shall get them delivered to the hotel,  so I could show my actual set up, and be advised from there on.

As regards your questions:

*O2, has never really worked as I've kept daily diary's, using O2, and not using it over say 3 days and there is not much change in frequency, duration nor intensity,  if anything oxygen tends to delay the time my headaches peak, and when they peak, the pain can be worse than a 10 if that's possible (more of a 12 in attached diagram), these are the ones I recently experienced for 3 weeks every day with only 1hr remission in between sometimes only 40 minutes,  lasting between 25 mins 40 mins 55 mins and 80 mins respectively, and I knew after roughly 10 minutes into an attack how long it would take to go away, 8 out of 10 times. The reason I knew is because the pain pattern changed with the duration ( if that makes sense) some would peak straight away I mean within 2 mins and others 15, 30 and the like, and once I hit around 45 mins they would shift only briefly around 5- 10 minutes to the other eye ( but only say a 7 ). And that's when I know I was on for the grand finale the bit that really scares me. As its the most intense pain I ever have experienced,  I actually think I've a brain tumor that the pain is also attacking as it's unlike the 99% of times I usually suffer them.  ( and these are always the times when I have rebounds, this time it was due to my holiday in jamacia and I over did it with steroids and sumatriptan injections as not to let it spoil my holiday,  when in fact the last few days it did, that was the onset of them. Not to mention the 10 hr flight back home, cabin crew were great they blocked of a toilet for me, on the onset.

*M.R.I : The last mri scan I had was 1999, when they mapped my brain for the occipital nerve stimulater(ONS) At the National hospital for neurology and Neurosurgery in London. I cannot have any more as it means taking my battery out, my leads and 24 electrodes,  and then replacing them. I've had my battery replaced 4 times, but only the battery as it came to the end of its life three times and 5 years ago it was due to be done again,  but this time with a rechargeable battery 1/5th of the size the other,  which was more the size of a coke can I was all preped and next on the list, but 2 hours before surgery, they cancelled as my Father passed away in Derby where he was in hospital. My family wasn't going to let me or the hospital know , but my brother in law did call the hospital. And they cancelled it and gave me the bad news. It was the worst day of my life and I had to travel back to Derby with that going on in my mind.

So after the funeral they got me in straight away and added a third channel. This 3rd channel was for the base of my scull right in the centre ( the one you enquired about, which hadn't been done before to any other patient. 

*Switching Sides - I predominantly suffer say 60% left and 40% right however this can also change its not a precise figure, i would say for 80% of the time it's usually one or the other, the time they do switch sometimes more than once is when I'm in a really bad bout and there over 45 minutes long like I've recently experienced with the left side when switching being the worst. not to say the right is ok, it's a catch 22 your slightly relived that the pain level has gone down slightly, but you also know it's going to finish what feels like an explosion and at this point my eyes are streaming both nasal passages are blocked due to the switching of sides, and the pain in my gums and jaw are just as painful as in my head and the orbits of my eyes, it's like having toothache in every tooth. It's the worst but at the same time the best as I know I've just about got of the finishing line, and survived another attack. That's when I cry my heart out, knowing another will soon be along.

*Centre pain - This pain occurs way into the cycle mostly,  but can come and go throughout an attack its bearable as your main pain is your eyes, mouth and jaw, so you know its there but the other pains far outway that one, although if I just had the centre one I'd still be unable to have one in a public environment I'd still need to be locked away somewhere or hide in a Bush or something. The pain is so different obviously because it's not behind the eye. The feeling is more like pressure pushing down on you head, like your deep under water and the further down you go in the water the more pressure builds up. My Neurologists blocked that channel and just left me with the 2 left and right,  just before I went to jamacia and I feel this could also be why this bout was so bad, I honestly think I'm just being used like a guinea pig sometimes,  they change the signals to try and find what's best for me, but invariably there's no difference or its worse. Maybe because most only have the one channel with only 8 electrodes.

I hope that all makes some sense to you, and thank you and to all other people that's helped me along in this short period if time I've been with CLUSTERBUSTERS.

I've got writers cramp now with all this typing, I've never written so much since college lol.

That image forwarded is when I really am at my wits end, and when I've been hospitalised 5 or 6 times through failed attempts at suicide. Just like I felt only a short few days and weeks ago. But found this site. And it's the best thing I've done.