Episodic suffer - worst cycle yet

[Acanderson34]

Hi all, 

I consider myself a lucky one since I’m only an episodic sufferer with my first dating back to 2001 when I was 16. (2010,2018 and now). I typically get through the cycle in 2-3 weeks and in the past only had 1-2 attacks per day but this cycle is completely different. I seem to be getting 5-7 a day including waking me up at night. 
 

I have O2 but for some reason only use nasal prongs. I’ve read everything about a non rebreathable mask. My question is. With a mask and such a high l/m how do you keep stocked up on O2. I went through a tank yesterday using A low 3l/m. I’ve had to supplement with sumitriptans but can only use 2 in 24hr period.

I also have been taking 5000iu/day of d3 for years and at one point t was at 10000 but my doctor warned me about vit d toxicity. Anyone else ever hear about that?

 

Thanks

[Freud]

Most of us use M tanks. Huge cylinders.  Get friendly w your delivery person. It goes a long way.  I have always used Apria, tipped them randomly when I can and asked for their Cell #s.  I txt them when I am running low and always get 3-5M tanks per refil.  They have seen me get an attack and have had other CH patients. They knew about busting and have all become friends.  I’m terrified since I moved and haven’t called them yet in my new location.  Will call Monday as I’m out of ketamine and nursing my tanks.  Ran through half a tank last night. I usually go through 1/2-1 big M tank a day.  If I use E tanks one tank is good for 1-2 CH.  at 25LPM.  The mask and high flow will do wonders for stopping an attack...

[Acanderson34]

Thx Freud. I don’t know if I have delivery around me. I’m just outside of London ontario Canada. The place i get my tanks from is Western ProResp and of course they’re closed on the weekends. I have two small tanks left for the weekend but again at 3lpm I might get a day out of 1. 
 

I will ask about bigger tanks for sure though on Monday.

[CHfather]

If Western ProResp is an oxygen supplier like we have in the US, they should be able to give you a mask and a higher-flow regulator (and bigger tanks).  Unless your doctor prescribed cannula and 3lpm, which seems very unlikely.  They are giving you what would normally be given to a person with COPD.  They might never have had a patient with CH.

I think some people would recommend taking the cannula off and just sucking O2 through the tube for possibly better results.  If you have to, you can buy a simple non-rebreather mask at amazon.com, or a fancier mask designed for people with CH here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit, and you can buy your regulator(s).   It's possible that you might get better results just inhaling air from an air conditioner until your system is right.

In addition to a larger tank (or tanks), you want to keep one or more smaller ones for portability.

Of course, you will have much faster aborts with a proper system.  For now, try energy shots or some of the other abortive strategies listed in this document (toward the end, under "Treatments without O2 . . . ").  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  The whole document might be worth looking over.  Unfortunately, your pattern of mild early cycles followed by more severe one is not uncommon, so you need to learn to manage your CH and start preventing cycles.  

[jon019]

Hi AC...welcome...

...i know it's counterintuitive, but 3 lpm (especially mixed with room air) can and does use more oxygen (with lower success rate) than much higher flows (recommended 15-25 lpm). i could kill a hit in 5-15 minutes at 8-12 lpm provided i started at the first sign of a hit ...preceded with a quick downing of an energy drink on the way to the tank. with a non-rebreather mask got 2-3 aborts per e-tank...

best

jonathan

[Acanderson34]

Thx Jon. 
Ive read a lot of taking an energy shot/drink and I’m gonna give it a try. Would a basic red bull be sufficient?

 

I read on my providers website that they have a unit that you plug in and it provided unlimited o2…anyone ever heard of this or try it? Is it the same as compressed o2 in a tank?

[CHfather]

Most people think that plug-in unit (a concentrator) is pretty ineffective, because it's less than 100% pure O2, since it uses room air to make the O2.  Also, most concentrators don't go high enough in flow rate to effectively treat CH.

A basic red bull would be sufficient.  Many people find that the smaller energy shots, such as 5-Hour Energy, are preferable, in part because you can get them down quickly and in part because they actually have more caffeine than the larger Red Bull-type drinks.  For more than a few people, a strong cup of coffee works, at least in the earlier stages of CH.

Edited November 13, 2021 by CHfather

[Acanderson34]

Thx chfather. You guys have so much knowledge I truly appreciate it. I’m willing to give anything a try. My 3 kids get scared (6,3,3) when they see dad in a lot of pain and I feel like a burden to my wife during attacks.  

[jon019]

58 minutes ago, Acanderson34 said:

Thx Jon. 
Ive read a lot of taking an energy shot/drink and I’m gonna give it a try. Would a basic red bull be sufficient?

....you want anything with minimum 100-120 mg caffeine and 1000 mg taurine (thought to boost caffeine, some are intolerant). do a google search of ingredients. red bull was the first and is highly advertised (so is expensive) and actually lower levels of energy ingredients than most. i haunt the grocery outlet stores and get brand name product for less than $1 ea. the 2 oz varieties way portable, easily/quickly downed, minimal sugar (reg versions have OUNCES), less of the typical gacky taste...

...totally agree with CHfather re O2 concentrator...not pure O2, not enough flow, EXPENSIVE  (usually a lease), suspect older versions even less efficient as they heated up with use....

Edited November 13, 2021 by jon019

[spiny]

A nose cannula and 3lpm is not going to really help. You need the proper mask - non-rebreather - and proper flow - 15 to 25lpm - of pure O2 from a tank. You do not have COPD and essentially that is what you have been given - a treatment method to just supplement a 'little' extra O2 for bad lungs. Whole different animal. They are supplying you with the little tanks for a COPD patient to truck around when they go out and about! Glare....

You will need to ingest a lot of D3 to worry about toxicity. Most of us on the D3 Regimen, take 10k or more per day. You must take the co-factors with the regimen! They matter, a lot! 

https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

That is a link to the original regimen. It explains a lot for you. 

In the mean time you could try filling a trash bag - big kitchen can size - with O2. Then, exhale fully, then inhale deep - room air - about 5 times. Next, do the same with the O2 in your bag. Forceful exhale, then deep inhale, hold a bit and repeat. Use up what you put into the bag so you have no worries about excess O2 in a room. It does feed a fire quite nicely. How to fill it? Cut off one small corner at the bottom. Take a small soda bottle, plastic, and cut off the bottom. Tape that with the neck through the bag so that the opening is sticking out with the cap on it. Tape the whole top shut. Then, go to the bottom and cut a tiny bit of the corner off and tape your hose into the bag with the cannula removed. Now you can fill the bag with your O2 and take the big deep breath that you need. Cover the top while you hold and exhale to conserve your O2.

If you type 'redneck bag' or similar in the search bar above,it might bring up a picture. 

I got stuck on the phone for hours and I see that many have already replied!  But, I'll post this anyway. 

[CHfather]

"Redneck bag" - https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

5 hours ago, Acanderson34 said:

My 3 kids get scared (6,3,3) when they see dad in a lot of pain and I feel like a burden to my wife during attacks.

You're on your way to changing that.  Not that things will be perfect, but many times better than they are now, for you and for them.  

Edited November 14, 2021 by CHfather

[spiny]

Thanks for posting that link CHF! 

Yes AC, your inquiries and willingness to move forward on your own, sans medicos, will speed the process up by a lot. 

Knowledge is power and you are acquiring knowledge, ergo power over your CH!!

Jon needs to post a Superman Gif about now!!! 

[jon019]

 

[MickeyP]

Hi, and sorry you need to be here, but glad you found this forum, it has helped me immensely.  I support what has been written and will further offer that the Vitamin D3 regime has helped me.  Please follow it completely including cofactors and testing D3 levels.  Adding your data and results to the collective process will help others.

I can also offer that an oxygen demand valve may make learning the technique a bit easier and may save some O2 while providing all you need.  If you are purchasing a regulator and you think a demand valve is in your future, pick up one with the proper DISS connections.  On the Clusterbusters website is much info on regulators and demand valves.

I am pretty quiet on the forum, but happy to help where I can.

good luck.

[Acanderson34]

Thanks everyone. Last night I ended up having 5 that were fairly intense. Seemed to last an hour and then I think I slept for maybe 30-45 min and then woke up with another. Wife and I are exhausted today. I can’t get a non rebreather mask quickly unfortunately. Seems 10 days or so shipping to Canada. I have 20 refills on my generic Imitrex jab but I hate taking them.

I was able to have 3 more E tanks delivered this morning so I’ll try and make do with my nasal prongs.

I constantly have shadows too this time around which is a first for my cycle. Something about ginger helps with them?

[jon019]

10 minutes ago, Acanderson34 said:

I was able to have 3 more E tanks delivered this morning so I’ll try and make do with my nasal prongs.

...try breathing directly from tube....mixing room air with O2 is a waste of O2

[Shaun brearley]

Take 2 1100mg ginger capsules a day keeps the shadows away !!!! . I ran out of o2 1 day so just went out to the car and turned on A/C and inhaled straight from air vent managed to abort 3 attacks that day until o2 was delivered 

[Acanderson34]

29 minutes ago, jon019 said:

...try breathing directly from tube....mixing room air with O2 is a waste of O2

I was always under the impression I had to breath the o2 through my nose and exhale from mouth?

[Shaun brearley]

Nasal prong really are no good buddy when I first went to ER unit at local hospital they would always use them would never help . If you can't get a non rebreathable mask at present I'd inhale straight from the tube 

[Shaun brearley]

I can't inhale through my nose as when I'm under attack I get really congested so I have to breath through my mouth . I can still abort most attack within 10 to 15 min buddy . You just need to find the right teqnique for you . Every attack is different . Sometimes I have to hiperventerlate sometime I just have to inhale slow and deep and hold for a few second b4 I exhale . 

[Acanderson34]

Thx Shaun. After looking online a long time I found a non rebreather mask tht says will be delivered 1-2 days. For a price obviously but at this point I don’t care about price lol. I also just bought ginger capsules on Amazon and 1 day delivery. Just gotta make it through tonight and hopefully I’ll be good to go.

I remember back in early 2001 when my first attacks started I didn’t know any better and would go sit in my car and blast the ac (mainly because it was hot out) but I’m pretty sure that helped back then so worth a shot too if need be….except it’s -3 Celsius today and light snow lol

[Shaun brearley]

If the pain is that bad buddy I'd still sit in the car with A/C on like I said put your mouth against the vent and inhale  it really work.  

[CHfather]

[Edited to say that I was writing this as your post came up.]

I know that link I posted earlier is a lot to read, but I'd urge you to go through it (or ask your wife to).  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Remember that you can divide your Imitrex injections so there are a lot fewer side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  I might not be in the majority about this, but I don't think a couple of 2mg injections of sumatriptan are going to make your situation worse, and I'g go for stopping the pain.  You can do all the better things later.

29 minutes ago, Acanderson34 said:

I was always under the impression I had to breath the o2 through my nose and exhale from mouth?

Lots of people use just a breathing tube in the mouth, with no mask.

Would this mask from Canada be available sooner?  https://www.performancehealth.ca/nonrebreather-mask   They are very inexpensive -- any chance you could ask for one from a local EMT unit, hospital, or maybe fire station?  (I'm not sure whether it'll make much difference at 3 lpm, though.)  Did you ask your O2 supplier about getting proper equipment?  

Edited November 14, 2021 by CHfather

[jon019]

29 minutes ago, Acanderson34 said:

was always under the impression I had to breath the o2 through my nose and exhale from mouth?

...nope...makes no difference. highest reported success rate is hyperventilation (even w/o supplemental O2 can help). others do slow breathe, and/or breathe and hold....or a combo. you need to try them all to see which works best for you...but PURE O2 is critical.

[jon019]

...the cursed server error is bedeviling....this a test