Click this link to read a post I like on the clusterheadaches.com message board...

May 9^th, 2025 at 7:35pm

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › OXYGEN….and other thoughts…open question

(Moderators: DJ, Mrs Deej)

‹ Previous Topic | Next Topic ›

Pages: 1 2

OXYGEN….and other thoughts…open question (Read 8144 times)

jon019

CH.com Alumnus

Offline

"Ya gotta believe!"

Posts: 1656
USA
Gender: male

OXYGEN….and other thoughts…open question
May 29^th, 2019 at 5:53pm

Hi all that's listening...doesn’t seem like many, as it's "crickets" around here now compared to what used to be. It's kinda sad... UNLESS it's because most have found relief and are in remission...be it age related, D3 regimen, chemo, busting, something else, or the latest....keto diet! Old saying: "WHATEVER WORKS!"....

So…if I may…my concern is that we “collectively” seem to have near abandoned what used to be the FIRST thing anybody ever said…and repeatedly …to a newcomer: OXYGEN OXYGEN OXYGEN!!! It was in near every thread, if not most every post. O2 saved sanity…it SAVED LIVES! Sometimes, I feel like the only one who says a word about O2 now (ok,I rarely post, because I’m tired, but frustrated too)…and that IS sad!

Now, perhaps this is just an old guy rant…. remembering only his own experience…. with fear of the “new and different”…but, I’ve analyzed my own thinking and I don’t think so. What I do think… and actually FEAR… is that there is a group, hopefully small, that the above listed DON’T work for. Those would be the folks who the term “quiet desperation” is appropriate for…and I don’t want leave them behind. And, even the ones any or all above DO work for may need a respite during start up, for breakthroughs, or even just a green headed buddy in the bedroom, collecting dust, just to remind “what used to be” and reassurance that I still got a tool.

D3 regimen. Batch himself does not claim 100% efficacy…I think around 80 %...maybe more now. While I surely ascribe to the numerous health benefits in general. What about the clusterheads it doesn’t work for?

Keto diet. Sounds like promising results…I haven’t seen any figures… and I think I saw that there is (or going to be) a study(ies). Great….but it’s not gonna work for all either….and I think it’s such a dramatic shift in eating habits that many will never be able to achieve. Speaking for myself, as a baby boomer, I am hooked on carbs…especially sugar…just like a buncha others who grew up on Cap’n Crunch and such crap. I’ve quit smoking, and I’ve quit drinking and it was surprisingly less difficult than I imagined (although the smoking one was easier because the oncologist said: “we can do chemo (and you live) OR you can keep smoking (and you die)…but we WON’T do both!” (smoking AND chemo).

BUT, I am SO hooked on carbs (DAMN, it’s a monkey) AND so fearful of cholesterol/fatty diet (drilled into us for 50 yrs that I can remember) that I would NEVER be able to stick to a keto diet….and I aint alone. What about us? At least the kids now…tho they eat more sugar than I can fathom … have some newer diet science to consider.

Busting. Tis a HARD road that many are reluctant to travel…due to fear of the unknown, fear of the med itself, the difficulty in obtaining or growing your own meds, legal restraints, dosage issues, etc. Sure, maybe D3, keto would work for those reluctant folks…but maybe not.

Chemo. That’s the one that worked for me…I DON’T recommend it! However, it makes me wonder about the newer monoclonal antibody therapies coming out. Worth a try for intractable patients… but I tend to agree with Batch’s thoughts on brain barrier/transmission issues. I know less than nothing about this…. but he explains nicely….still, might be what worked for me. Reports for CH are not encouraging…what about them?

Triptans. Needless to say…these are NOT a long term solution, and can be mostly avoided with O2 alone.

The only figure I can remember for OXYGEN efficacy (in part or whole) is about 90%....that’s pretty damn effective …and in the medical field considered an outlier in the universality of that effectiveness. I don’t oppose nor disdain the approaches above in any way… but I can DISTINCTLY remember…in 1985…the first time I used O2 and the pain drained.away.like.water. DAMN, I can still cry just thinking about it… and the thousands more times after that! Nostalgia, sentiment?...maybe….dunno. But DEFINITELY gratitude…..

SO…anyway…what are your thoughts on how we approach discussing OXYGEN, especially with newcomers? Is it shut up and get modern Jon, cuz you’re even more fulla “stuff’ than before, or are we neglecting a VERY good friend? Your thoughts appreciated…..

Best

Always

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #1 - May 29^th, 2019 at 7:33pm

I suspect that a lot of people are now more into things like Facebook but a lot found D3 working for them (or something else) and often just return when something isn't working.

As is so typical of CH, nothing works for 100% of people, so what is important is that there are lots of options available to people, so if D3 doesn't work then verapamil, lithium, topamax, busting and others might do. Similar for abortives there is oxygen, triptans, hot showers, cold air, energy drinks, etc.

The main point is that there are options and one or more may work so just about everyone (nothing is perfect) will work.

I thought I was a sugar addict / sweet tooth, but I've surprised myself how quickly I changed. Given a choice now between something sweet and something not, I know which I'd go for and enjoy.

IP Logged

pattik

CH.com Alumnus

Offline

Posts: 2631
Wisconsin, USA
Gender: female

Re: OXYGEN….and other thoughts…open question
Reply #2 - May 29^th, 2019 at 10:32pm

Hey Jon,
I share that awesome memory of the first time oxygen killed an attack. I could hardly believe it! But there is a learning curve. I didn’t get consistent results for a very long time, because we were still learning how to breathe differently for the best results. In fact, Batch’s redneck system is now what I prefer, since I probably won’t need to upgrade to a demand valve if the D3 keeps working. Getting oxygen set up and learning how to use it may seem like a lot of work compared to doing injections or nasal sprays. But we could point out the cost benefits as well as no side effects compared to the triptans. We could also offer newcomers our availability to give detailed advice on O2. Undecided

IP Logged

maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: OXYGEN….and other thoughts…open question Reply #3 - May 30^th, 2019 at 11:08am Tried keto. Didn't work for me. In fact. I think it created more problems. It's not bowel friendly. I did lose some weight though.
Back to top	IP Logged

Mjedwards409

CH.com Junior

Offline

I Love CH.com!

Posts: 58

Re: OXYGEN….and other thoughts…open question
Reply #4 - May 30^th, 2019 at 12:10pm

Great topic. I can say that as a supporter of a newly diagnosed wife, the O2 thing seems daunting and complicated to set up from the beginning. In fact, just because of the hoops we had to jump through with the neuro to get it prescribed, the medical O2 companies refusing service to CH patients, the insurance denials, getting the right type of mask, etc., I eventually just took an entire day off work to be 100% focused on getting the O2. It took every minute of the business day to finally get our hands on some O2, and this was after it was prescribed.

IP Logged

maz

CH.com Hall of Famer

Offline

I Love CH.com!

Posts: 1071
Hampshire, England
Gender: female

Re: OXYGEN….and other thoughts…open question
Reply #5 - May 30^th, 2019 at 4:53pm

That was a day well spent MJ. You can buy the best mask right here
CH.com store - yellow tab on the left of this page. Getting 02 was the best thing you could do for your wife. The first time I used it was like a miracle. I'm very fortunate here in the Uk. It's available on our NHS so no insurnce compnies to argue with.

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #6 - May 30^th, 2019 at 4:57pm

Hey Jon,

You're correct, I don't call the anti-inflammatory regimen 100% effective for all who start it. The advetized figure of efficacy for this regimen is based on the 80% of CHers who respond to this regimen carries the qualification they responded in the first 30 days after start of regimen.

These CHers averaged an 80% reduction in the frequency of their CH from 3 CH/day-night down to 3 CH/week within the first 30 days. The 30-day call for lab test of 25(OH)D was part of the study design. 50% of CHers who start this regimen experience a complete cessation of CH symptoms within the first 30 days after start of regimen.

Doing the breakout between episodic and chronic CHers for a favorable response in the first 30 days, the numbers are 87% ECH and 70% CCH. The pain free response in the 30 day breakout is 58% ECH and 43% CCH.

There are statistically significant numbers of CHers who took the online survey and did not respond in the first 30 days who finally responded between two and three months after start of regimen. Accordingly, the actual raw efficacy is higher than the 80% in the first 30 days. I might point out that this level of efficacy for the combined episodic and chronic CH pathologies taking the anti-inflammatory regimen is higher than any of the pharmaceutical prophylaxis. Moreover, vitamin D3 has no adverse side effects.

I've spent much of the last 8 years working with CHers who do not respond to this regimen in the first 30 days.
The reasons why they didn't respond are listed below.

1. Vitamin D3 dose of 10,000 IU/day and responding 25(OH)D serum concentration of 80 ng/mL (200 nmol/L) is too low. Many of these CHers started to respond when they increased their vitamin D3 maintenance dose to 15,000 IU/day or 20,000 IU/day and in a few cases even higher. Most of them start responding when their 35(OH)D serum concentration goes above 100 ng/mL and some as high as 190 ng/mL.

For reference, my first CH hit in 1994 and I turned chronic in 2004. Over the last three years, I've maintained my 25(OH)D serum concentration around 150 ng/mL and at times as high as 188 ng/mL due to an allergic reaction to pollen and mold spores. My PCP has no problem with this as long as my calcium serum concentration remains within its normal reference range and it has.

2. Allergic reactions to airborne allergens like pollen, mold spores, industrial pollutants and dust mite poo. Many of these CHers started responding to this regimen after starting a week to 10 day course of Benadryl (Diphenhydramine HCL). As Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block histamine H1 receptors at the genetic layer in neurons within our trigeminal ganglia.

3. Food borne allergens. I've been in recent contact with CHers, still getting occasional hits and shadows with a 25(OH)D serum concentration above 80 ng/mL, who started the Atkins-Ketogenic diet. They're now reporting excellent CH pain free results.

As a side note, although the numbers are too low for statistical significance and not all have had their 30 day labs for serum 25(OH)D, calcium and PTH, it appears CHers taking the Bio-Tech D3-50 are experiencing a higher favorable response rate and complete cessation rate. Accordingly, this water soluble "micellized" 50,000 IU form of vitamin D3 is proving to be a game changer.

The bottom line is the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is just a starting point. Some CHers will require a higher dose in order to experience a therapeutic response with a cessation of CH.

'Hope this helps clarify the efficacy of this regimen.

Take care,

V/R, Batch

« Last Edit: May 30^th, 2019 at 11:14pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Mjedwards409

CH.com Junior

Offline

I Love CH.com!

Posts: 58

Re: OXYGEN….and other thoughts…open question
Reply #7 - May 30^th, 2019 at 6:57pm

maz wrote on May 30^th, 2019 at 4:53pm:

Thanks Maz. Yep, we got the ClusterKit mask! She hasn’t had to use it yet because of a prednisone taper but she’s taken some dry runs to practice.

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #8 - May 30^th, 2019 at 10:43pm

Mjedwards409 wrote on May 30^th, 2019 at 6:57pm:

Yep, we got the ClusterKit mask! She hasn’t had to use it yet because of a prednisone taper but she’s taken some dry runs to practice.

Two good moves. It is so much easier getting used to how the O2 stuff works without a CH being a major distraction.

I remember O2 being a bit daunting at first, but it is incredible how quickly it all becomes second nature.

IP Logged

jon019

CH.com Alumnus

Offline

"Ya gotta believe!"

Posts: 1656
USA
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #9 - Jun 1^st, 2019 at 5:11pm

Yo Batch….I have absolutely NO problem with your Vit D3 regimen…and, as always, I appreciate your concise, yet detailed and understandable description/explanations….and it SHOULDN’T go without mention that you SIR have SAVED LIVES! My point, my frustration, is that the medically acknowledged (literature, studies, practice), highly efficacious, relatively inexpensive, easy to use and NO side effect therapy of OXYGEN… seems to have been swept aside (in my opinion)…on this website. You yourself didn’t comment on my question…making my point. THE man…. who has provided THE BEST updated and tweaked and NEW protocols for O2 relief of cluster headache…..ALSO saving lives. There’s no superior authority to appeal to….

Maybe it’s because you have complete confidence in the D3 regiment to eventually to help ALL….dunno. But you, better than most, know the difficulty in getting the medical “industry” to accept a new, minimally studied so far, CHEAP (ya think the pharm industry gonna like D3 vs all the expensive mess they throw at us), VITAMIN centric therapy? How many times have we seen people come here reporting on Docs who won’t even TEST Vit D levels… let alone approve the regimen!? It’s gonna be a hard fight…and I’d bet on you…..but even O2, which has been recognized for decades, has Docs who to this day refuse to consider it as treatment for their CH patients…”too scary, too expensive, too different from med school 25 yrs ago, too too too”……" sheesh………………

My concern is the folks who do not have the access here (never heard of us) or anywhere to your knowledge and to the regimen, period. It’s not practical, fair, or even possible to expect you to walk all of us clusterheads through a regimen that I suspect might need tweaking for each individual (like you've done tirelessly). You’ve done this publicly and privately… but ya can’t do either forever…and lacking your drive, knowledge and availability …there are gonna be a bunch of folks in the future who are gonna need…at least for a while (for breakthroughs or if D3 just doesn't work)… what o2 has and does provide…

I will step back so as not to annoy further…have said my piece (sorry if poorly)….but OXYGEN saved my sanity, perhaps my life……

Best

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #10 - Jun 2^nd, 2019 at 12:04am

Speaking (typing?) as someone who has been CH pain free for multiple years with D3 when I was about to qualify as having chronic CH, I've experienced the combinations of:

Unknown, uncontrolled severe head pain that was baffling multiple doctors, with no diagnosis, preventive or abortive, other than a big bottle of codeine
Semi-controlled diagnosed CH with a semi-effective preventive (amitriptyline) but no abortives
Semi-controlled CH with a semi-effective preventive (amitriptyline) but non-ideal abortive (maxalt melts)
Semi-controlled CH with a semi-effective preventive (verapamil) with a good abortive abortive (O2)
Controlled CH with an effective preventive (D3) and good abortives, although not needed for CH (O2 and sumatriptan injections)

The major changes to me were:

Getting a diagnosis
Having a preventive and getting a bit of control over CH, even though it wasn't perfect, it was getting my life back.
Getting oxygen and being able to kill CHs in minutes as opposed to over an hour of pure pain. I remember crying when I killed my first one with it and then noticing that my amazing partner was also in tears as we both knew I could now kill them.

Not sure how I'd rank them as each was making a significant difference to me being in control of my life.

I've not included D3 as a major change in the second list as I'd been gradually improving how effective my preventives were in moving to verapamil at the right dose and release type, so jumping to D3 was an incremental step in this process as I learnt so much from this forum.

This reflects what I advise new people about getting a confirmed diagnosis from a headache specialist, then getting onto an effective preventive and abortives.

I think it took me over 2 or 3 years of not having any CHs due to D3 being so amazing before I returned my dusty O2 cylinders, but I've still got the regulators and masks, just in case...

How do others compare similar changes in their CH journey?

IP Logged

AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: OXYGEN….and other thoughts…open question Reply #11 - Jun 2^nd, 2019 at 1:44am Mike NZ wrote on Jun 2^nd, 2019 at 12:04am: The major changes to me were... ...How do others compare similar changes in their CH journey? Mike, that simple idea surely deserves a thread of its own. So many CHeads. So many stories. So much we could learn from them.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

nichjfw

CH.com Newbie

Offline

I Love CH.com!

Posts: 18
Ottawa Canuckland
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #12 - Jul 23^rd, 2019 at 9:29pm

I'd like to give a newbies perspective.... even with a headache circling above my right eye as I type. I'm seasonal... ties in with grass allergies I think. I've been dealing with these for almost 20 yrs. Got a neuro 4 yrs ago. Am on D3 though I'm in a cycle right now and trying to break it. At 100 mg Benydryl day 7 and will have to stop although headaches continue.
GOT 02 FOR THE FIRST TIME THIS WEEK..... HOLY SHIT!!!! This stuff is aborting headaches in 5 MINUTES. Why did I have to beg my neuro for this? It's the best thing so far for the pain. The D3 has worked.... but it doesn't alwa
ys work as Titration seems to be the name of the game.

If someone could post a link to some of the better threads wrt 02 I would much appreciate it. Or if there is any literature you have found helpful. I mean this stuff works so well I'm thinking there must be a catch???

Anyways, wrt how quiet message boards have become in recent years... I've found that the people that are still on them are often the ones you'd hope would stick around, as I'm finding on this one. Thanks all for your help!

IP Logged

AussieBrian

CH.com Hall of Famer

Offline

CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #13 - Jul 24^th, 2019 at 2:40am

G'day, Nich, and it's always a delight to hear a ClusterMate finding something that works.

On the left side of your screen is a list of buttons and part way down is one that says Oxygen Info. Try clicking on that to find a wealth of info and pictures on how best to get results.

Otherwise, just keep asking and we'll keep helping.

Only better days ahead,

Brian down under.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

IP Logged

Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: OXYGEN….and other thoughts…open question Reply #14 - Jul 24^th, 2019 at 4:03am Nich, After reading the O2 page above, as Brian recommends, I strongly suggest you buy the O2 mask on sale here. It is, by far, the best mask for Clusterheads. Keep asking questions. Peter.
Back to top	You don't stop laughing because you grow old....You grow old because you stop laughing. IP Logged

Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: OXYGEN….and other thoughts…open question Reply #15 - Jul 24^th, 2019 at 8:55pm As an abortive, OXYGEN ROCKS Cheers, Hoppy
Back to top	« Last Edit: Jul 24^th, 2019 at 8:58pm by Hoppy » IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: OXYGEN….and other thoughts…open question Reply #16 - Jul 25^th, 2019 at 2:35am Hoppy wrote on Jul 24^th, 2019 at 8:55pm: As an abortive, OXYGEN ROCKS I agree - as you'll see to the left of this post under the NZ flag.
Back to top	IP Logged

shokaveli CH.com Newbie Offline I Love CH.com! Posts: 5	Re: OXYGEN….and other thoughts…open question Reply #17 - Aug 13^th, 2019 at 5:11pm I just got my first O2 tank today as well as began the D3 regimen. I'm really hoping that the O2 (and D3) is a miracle worker as I have read countless times! Still waiting for my ClusterO2 kit from here to arrive though, until then I will try their crappy mask.. Cheers!
Back to top	IP Logged

shokaveli

CH.com Newbie

Offline

I Love CH.com!

Posts: 5

Re: OXYGEN….and other thoughts…open question
Reply #18 - Aug 14^th, 2019 at 12:24pm

So I tried the O2 last night for the first time.. was on it for about 5 minutes at 15 lpm then moved to 25 lpm with Hyperventilation method and while the pain got less it didnt completely go away (I started at about KP 4). I stopped )2 at around 10-12 minutes and the pain started to get worse for about 2 minutes but then suddenly just stopped and I was PF for the night. Im wondering if anyone has experienced that or if it was just a fluke that it went away...

IP Logged

Cosworth

CH.com Newbie

Offline

I love YaBB 1G - SP1!

Posts: 17
x0|Indianapolis|USA||0|0|IN,Indiana
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #19 - Aug 19^th, 2019 at 11:08pm

Two things: I am one of those people who owes a lot and is deeply grateful to this site for all i've learned about O2, and to Batch for the Vit.D regimen, and just for the feeling like there are others out there in the world who know how bad this condition can be. I'm grateful for all the kind people who have shared their stories on here and for the guy who started this site because there used to be so little info about this condition. Like Jon said, I hope the dwinding #'s are because people are finding lasting relief, but I I'm one of those people who stopped coming here when I'm not in-cycle and I have always felt kind of bad about that. I'm an episodic who used to have at least one, sometimes two cycles per year - usually lasted 2-3 months per cycle. I started the D3 regimen maybe seven years ago and have miraculously been mostly pain free since doing this. Before D3, I was guaranteed to get hit at least a few months out of the year and I would come back here to see what was new or just to "be with" others suffering like me. I'm back again now because the Beast has reared his ugly head, but I'm reminded like I always am that I should be more motivated to try and continue to visit here and help point people in the right direction or maybe just share my experiences. Now the 2nd thing.. And warning, this is going to be a RANT! Over the years, when the beast breaks through I have upped my D3 and run to my Dr. to get O2 filled and have tried other things when the beast returns, and thanks to the D3 I believe, cycles have been much shorter when they happen, and much less frequent. But the point is, before D3 regimen O2 was a savior that made the cluster cycles bearable. Still awful, but bearable. So here I am dealing again with the beast, and it just MAKES ME CRAZY how hard it is to get O2.

Since last Wednesday I've spent HOURS on the phone with my Dr's office and different medical supply companies trying to get O2. I went to my Dr's office last Wednesday and he wrote a script for O2 (his first for a cluster patient) and from there it's just been one follow-up after another with insurance and different "durable medical supply companies" trying to get someone to help me. At one point today, I was on multiple holds with one of these companies today and one of those holds alone lasted for 40+ minutes. Then the person came back and basically said umm.. yeah sorry can't help ya! I'm not new at this, but the process seems to keep getting tougher. In the old days, I would call my Dr. (who retired some years back) and say "clusters are back" he'd write the script, fax to the company and within a day or two I'd have a supply of e-tanks. Easy! Insurance would cover most of the cost and I'd be able to grind through my cycles. My old Dr. is retired and EVERY time i've had to get O2 in recent years it has gotten harder. Insurance apparently doesn't cover, but I'm not allowed to pay out-of-pocket for the "medicine" HUH?? Over the last several years I've had to seek out different primary care docs because some just made it too hard. From the Dr's who have no clue about Clusters, to those who don't want to write a script for it. Ironically, the current Dr. I just saw this week was happy to give me a script for O2 and at least seemed aware of the efficacy of this option, but admitted to me he had never written a script for O2 before. I tried to explain exactly what was needed, how to write the script, etc. etc., but once the Dr's done his part, I still have to deal with the these "medical equipment companies" and they seem to have their own set of rules and are just uwilling to help. The first medical equip co. that my script went to told me they flat out don't accept scripts for O2 for cluster headaches anymore (of course this was two days after they received the script. (WTF?) So, after losing 3 more to the beast, suffering through this past weekend with no O2, I called my Dr. and insisted they send the script to a different company (one I used succesfully in the past). That company I used to get my scripts filled from says they too can no longer supply just the cylinders like I used to get and that I have to be approved for some entire system like a person suffering from COPD or lung cancer, etc. This would include a concentrator and the little mini tanks for power outages. I've explained over and over that I don't need a concentrator and that it will do me no good. They just say "Sorry" we can't just give you e-tanks anymore like we used to. So, point is, I'm so angry and Jon's post just resonated with me because getting O2 should just never be this hard. It's MASSIVELY IDIOTIC that in our "health care" system (term used loosely) that I can probably go to my Dr. and get some really addictive or damaging meds that won't help my problem, but I can't get a Freaking tank of Oxygen that I know will stop my headaches in their tracks and make having this condition a LOT less scary and a LOT less depressing. If a hospital held back pain meds from a patient who was terminal and experiencing the level of pain that cluster headaches bring they would be labeled as cruel and unethical, yet there are people with cluster headaches who are suicidal that could be helped with this really simple thing. I just wish I knew what could be done.. Write to congress? Who will listen? I used to marvel that people would take the chance on welder's O2 because I was always afraid that maybe it wasn't "clean" and would make me sick, or damage my lungs or worse, but I think I've finally reached that point where I need to research that whole option to figure out how to make this happen. Any tips would be most appreciated... Sorry for the epically long post. I guess I really needed to vent... Undecided

IP Logged

MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: OXYGEN….and other thoughts…open question Reply #20 - Aug 20^th, 2019 at 6:00pm Found this in a couple of old post hope this helps. I am not speaking first hand, but others here will. There are many who use welding O2 here. You probably shouldn't tell them that you'll be using it medically. They cannot certify it for medical use. Wishing you well, Mark.
Back to top	IP Logged

Jason Z

CH.com Newbie

Offline

I Love CH.com!

Posts: 10
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #21 - Aug 20^th, 2019 at 6:04pm

Shokaveli: I've had similar reactions to oxygen and have learned to stay on the tank for a full 15 minutes. Sometimes the CH will clear up shortly after I get off the tank, but mostly it breaks up between the 10th and 15th minute.

Cosworth: I've had really good luck with Apria Healthcare. My neurologist prescribed O2 and I've been working with them for several years now. Good communication, no hassle. The delivery people don't always know anything about CH, but they are grateful when I can fill them in with what little I know. I can't post the link but go to Apria in Google Search and they should come up as Apria Healthcare. The have a page where you can locate their offices and they have branches in Indiana. (which I think is where you are) I'm in Portland, Oregon. I don't know if it makes a difference that I go through Regence Blue Cross/Blue Shield or not, but... Good luck to you.

IP Logged

beast mode

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: OXYGEN….and other thoughts…open question
Reply #22 - Aug 21^st, 2019 at 5:09am

Hello , 65 year old male with CCH diagnosis newbie . Have started on the O2 for up to 90 minutes with no relief . I was about to send the machine back but in reading your comments here it sounds like I need to continue with the O2 . Also Vitamin D3 sounds like a good daily option . Right now I am on Verapamil 240mg daily for prevention ? . Also Metoclopramide 10mg up to twice daily when attacks come . My normal attack will last up to 8 hours daily if I did nothing . Right now I get temporary relief with OTC Extra Strength Headache relief that I can take 2 tablets every 6 hour's . I have also used Excedrin Migraine , 2 tablets every 24 hour's . Up until this year , I had never had headaches a day in my life . Did have a MRI done in June and it came back clear . Any input would be much appreciated . John

IP Logged

Jason Z

CH.com Newbie

Offline

I Love CH.com!

Posts: 10
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #23 - Aug 21^st, 2019 at 12:54pm

Dear Beast Mode:

I am not an expert at all but, it seems like O2 for 90 minutes with no effect is very strange. What pressure do you have your canister set to? 12psi seems to be the minimum. Also, are you using the face mask that covers the nose and mouth? A nasal cannula won't do the trick.
Good luck, and I hope you find some relief.

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: OXYGEN….and other thoughts…open question
Reply #24 - Aug 21^st, 2019 at 1:33pm

Hey Cosworth,

That was quite a post... Getting to the point you need to understand about the anti-inflammatory regimen. The vitamin D3 maintenance dose and resulting 25(OH)D blood concentration will change over time in response to infections, allergies, trauma, surgery and any other health condition that involves inflammation... That's most of them. The vitamin D3 doses almost always need to be increased.

If, and when the CH beast starts jumping ugly after months or years of being CH pain free while taking the anti-inflammatory regimen, you'll need to increase both the maintenance dose AND your 25(OH)D blood concentration.

Many CHers who have had their CH return on this regimen will need to elevate their 25(OH)D concentration above 100 ng/mL and up to as much as 150 ng/mL to get back to a CH pain free response. The following Normal Distribution and Cumulative Probability curves for 25(OH)D lab tests after 30 days from the online survey of CHers taking this regimen graphically illustrates the 25(OH)D concentrations that may be needed for a CH pain free response.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

As you can see in the green line, the mean 25(OH)D serum concentration is 80 ng/mL. What this also means is roughly 30% of CHers will need a 25(OH)D serum ≥ 100 ng/mL for a CH pain free response and some will need their 25(OH)D as high as 150 ng/mL. One of the best ways to do this is called titration. Titration = adjusting the intervention dose to achieve the desired physiological response. I our case as CH'ers, that's increasing the vitamin dose until we experience a CH pain free response.

The Blue S-shaped sigmoid cumulative probability curve
tells a similar story. As the 25(OH)D concentration increases, a greater percentage of CHers experience a CH pain free response. This curve reaches 100% at 150 ng/mL.

One of the most effective methods of titrating the vitamin D3 dose is to take a 50,000 IU loading dose of vitamin D3 for two days then fall back to a new maintenance dose at least 5000 IU higher than the previous maintenance dose. Wait three days after the second loading dose. If you've not experienced a marked reduction in the frequency of your CH by then, repeat the steps above and wait another three days.

As a basic rule of thumb, a total loading dose of 100,000 IU of vitamin D3 spread over two days at 50,000 IU/day should elevate 25(OH)D by 10 ng/mL. Accordingly, after four titrations, if there's no joy with a significant reduction the frequency of your CH, it's time to see your PCP/GP for lab tests of your 25(OH)D, calcium and PTH. It's also time for a check up to see if there's a low-grade infection or allergic reaction cooking away.

It's very important to keep your PCP/GP or neurologist in the loop when starting this regimen and when titrating the vitamin D3 dose. You'll need labs for your 25(OH)D, calcium and PTH 30 days after you've reached a stable maintenance dose that keeps you CH pain free. As long as your serum calcium remains within its normal reference range, your serum 25(OH)D concentration doesn't really matter except as a reference point. Your PTH should be in the lower third of its normal reference range and not at zero.

Take care and please keep us posted.

V/R, Batch

IP Logged

Pages: 1 2

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!