Jump to content
ClusterBusters
muggle

Newbie looking for any advice on obtaining O2

Recommended Posts

Hi all,

I apologize if this topic has already been covered somewhere else on the board, I am new here and trying to soak up as much information and advice as possible. A little background info - I have suffered from episodic cluster headaches for 15 years now. I’ve been put on prednisone, gabapentin, and verapamil all with no success and varying degrees of crappy side effects. My current regimen is downing way too many energy drinks and taking sumatriptan shots/nasal spray to abort particularly bad headaches, but I often experience rebounds if I use this method too often. I am going to try melatonin tonight for the first time to see if that helps at all. The last cluster period I had was 4 years ago (I consider myself fortunate to have had that long of a remission period) but now I am fighting tooth and nail to find a doctor who will prescribe me oxygen. I aborted my last cycle after 6 weeks by using the dosing method - it took two tries but finally worked, but I am having issues obtaining that “medicine” right now. My primary doctor knows little to nothing about these, despite the fact that my father (a 25 year episodic sufferer) and I both have this condition and go to the same doctor for this. It’s incredibly frustrating. Any advice on how to obtain O2 from a doctor or otherwise would be greatly appreciated!

-Vanessa

Share this post


Link to post
Share on other sites

Hi Vanessa!

Two words.....WELDING OXYGEN!!!  You can ditch the hassle of getting a doc to write the script (correctly) and then dealing with the A holes at the oxygen suppliers by going the weld ox route as many of us here have been doing for years!!

Medical O2 comes out of the same faucet as weld ox....the difference is that med tanks are vacuumed prior to being refilled while on welding cylinders they just crack the valve and give it a sniff test in the event that it's been contaminated with acetylene.

Some welding gas suppliers will lease you a large tank for a small monthly fee (I paid $6/mo) with a deposit ranging from $100 to $150 and refills from $18 to $23.

Some suppliers, like my current one, won't lease.....in my case, I had to buy a cylinder for $300 and refills are $20.....drawback is that the tank is large, very heavy, and hard to schlep around, and, you can only exchange it for a full tank at the supplier where you purchased it....oh, and you NEVER want to let them know you're getting it with the intention of breathing it!!!

The other associated up front costs are for a welding oxygen regulator fro Harbor freight for around $70 and a good non rebreather mask....I highly recommend the ClusterO2kit from our Sister site clusterheadaches.com for around $25.

Dallas Denny

Share this post


Link to post
Share on other sites

Thanks so much for the advice! I will definitely look into this. I'm going to plead to my doctor one more time for the 02 script, but this seems like a good alternative in the event that he won't budge on this. Do these places question what you want the welding oxygen for? In other words, have you had to come up with a creative excuse for why you're buying this? I'm not a very good liar when put on the spot haha Thanks again!

-Vanessa

Share this post


Link to post
Share on other sites

Say your brother/ friend is coming to town to do some work at your house and he sent you to get the oxygen. You can play stupid with out tipping them off. Ask about sizes and price. Weither you have to buy or lease...  tell them the project is some old car you’ve been nagging them to get rid of or work on...

 

Share this post


Link to post
Share on other sites

Hi Vanessa..glad ya found us...

OXYGEN is THE recognized treatment for CH...for decades...saved my sanity maybe my life....and there are THOUSANDS like me who could testify better than I.

A doctor with TWO patients with CH (most never even see ONE) who doesn't know that or hasn't not bothered to do the most basic of research (pred gabby and verapamil oddly notwithstanding) desperately needs to be fired for a headache specialist....

...in the meantime...listen to D Denny....it's GOLD!

Best

Jon

Edited by jon019

Share this post


Link to post
Share on other sites

Here's the deal Vanessa, welding gas suppliers are in business to sell oxygen and acetylene.....they really don't give a red rats ass what you're going to do with it, they just want your $ (as long as you don't tell them you plan on breathing it)....... I've used 2 different suppliers and neither has ask me any questions....just walked in and said " I need a large tank of welding oxygen.....but....I had a story ready just in case......if asked, I would tell them that a friend was loaning me his cutting torch rig but he loaned out his O2 cylinder and it was never returned ( this eliminates their asking why I dont need acetylene)......I would use the "cutting torch" vernacular simply because if you're cutting up scrap metal, it won't seem unusual if you're getting refills often.....some folks say they're taking up glass blowing as well

DD

Share this post


Link to post
Share on other sites

Thank you all for the quick responses and advice on what to say to obtain this - as I'm sure you all know, this in an incredibly frustrating thing to deal with when you have uninformed/lazy doctors. And I totally agree that my Dad and I need to find a new doctor. We have both brought him multiple print outs showing that Oxygen is the way to go with this and he doesn't really seem to care. I fully intend on finding a doctor that will listen to reason, because clearly he isn't going to. I'm very glad I found this site and you guys, I have learned more here in the last few days than years of scouring the Internet in the past. I'm sorry you all go through this too, but I'm so thankful for all of your insight. I will make some calls tomorrow and hopefully make some progress on this.

-Vanessa

Share this post


Link to post
Share on other sites

…..check out this thread: https://clusterbusters.org/forums/topic/3037-recommended-doctor-list/   it's dated but a good start

.....don't assume any neurologist will do as many (maybe most?) don't know much about CH either  (I had a brain surgeon neuro ask me if they used Inderal for CH ?….told him yeah, 35 yrs ago!).....

….ask about their CH experience FIRST... before a very expensive disappointment...

…..most neuros of ANY kind are booked for months...don't get discouraged......be SURE to tell them you are a CH patient (especially if you are in cycle) as some (&/or their staff) understand the urgency (that's the place ya want!)….and be willing and vocal about filling in for a cancelled appt...

….pain and headache clinics are also place to look...

...WHEN...not IF ya find a good one....share it with the rest of the family...please...as they are treasured...

Best

Jon

 

Share this post


Link to post
Share on other sites

Just one more note about welding O2, and then a couple of other things.  Welding tanks come in many different sizes, always (at least as far as I know) measured in cubic feet of O2.  The bigger the tank you can handle, the better off you will be, but they get pretty unwieldy above 80 cu ft.  So what you get depends in part on what you are able to lug.  (You have to bring them in to get them refilled.)  Denny has a giant one (welding tank, I'm talking about :)), which I think is about 250 cu. ft.  120 cu ft is large and heavy, weighing at least 50 pounds when it's full.  In any event, you will want to get a rolling stand, but that of course is essential if you are getting a big tank.  We (my daughter and I) have found that having two 60 cu ft tanks was most manageable for us. Over time, we have added more tanks until we have a pretty large collection of them.  Remember that you also want one or two smaller tanks (20 or 40 cu ft) for portability (to have in the car, for example).

You'll also need to buy a regulator and a mask.  Unlike medical tanks, where smaller tanks use one type of regulator and larger tanks use another type, all welding/industrial tanks use a CGA-540 regulator.  [Gosh, I just realized that I posted a whole thing about all this over in the ClusterBuster Files section.  I'm just going to link you to that.  It has everything I was just going to say.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/?tab=comments#comment-56717]

In addition:

You should be doing the vitamin D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

You can split your sumatriptan injections. Most people don't need more than 2mg, 3mg at most, and the standard autoinjector is 6mg.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

Share this post


Link to post
Share on other sites

Jon - thanks for the advice on the neurologists! I checked that list and there is one neurologist in my area that specializes in this so I am going to call and try to get an appointment with him. I also got a recommendation from a friend about another nurse practitioner in my area who has a daughter with CH, so she may be a good resource too. I will for sure share the names of these doctors if they happen to help me.

CHfather - Thanks for the heads up about the weight of the tanks. I'll have to get my husband to help me with that because they'll weigh half as much as me, so that might be impossible for me to move them on my own! I am going to look into doing the D3 regimen as well - I have seen multiple people mention this. I did try melatonin last night and had my first headache free night of sleep in over two weeks! Anyone else have good results with this? As far as splitting the sumatriptan injections goes, I have to muster up the courage to give myself a shot in the traditional way. This may be easier in the moment of an attack when I don't really care though! One concern of mine is reusing the same needle - has anyone had issues with infection from doing this? 

Again, thank you so much to everyone for your help!

-Vanessa

Share this post


Link to post
Share on other sites

Vanessa,

I second / third etc..  The above comments about your doctor.  Get a new one...  Any doctor that isn't smart enough to READ in the AMA etc documentation that 100 percent high flow O2 is the #1 abortive...  Well he's just an idiot, and shouldn't be practicing medicine.

PFW,

J

Share this post


Link to post
Share on other sites
3 hours ago, muggle said:

I did try melatonin last night and had my first headache free night of sleep in over two weeks! Anyone else have good results with this?

A lot of folks report good results.  Melatonin is low in people with CH during their cycles.  How much did you take, and, if you don't mind, what kind--chewable, under the tongue, or just swallow it?  

You are right to ask about reusing needles. I have read -- I'm not any kind of expert on this --that they get dull quickly, so the injection can hurt a little more, and they can cause a local infection.  I have never heard of either of those things happening with one or two re-uses of the Trex needles.  I have also read that it is not wise to clean the needle with alcohol (as one might be inclined to do) because it removes the silicon coating that helps the needle slide in smoothly.  The tradeoff seems to be between the apparently small risks of reusing needles and the effects of repeatedly injecting 3 or 4 unneeded mg of Trex (not to mention the cost).  

Share this post


Link to post
Share on other sites

Hi again all! I was able to get an appointment with the nurse practitioner whose daughter has CH for tomorrow, so I’m hoping she will be a better resource than my current primary doctor. I will let everyone know how that goes. I called to get into a neurologist that has CH experience, but of course I am looking at close to a month wait unless someone cancels in the meantime. 

As far as the melatonin goes, I started with 10 mg and just swallowed it 2 hours before I planned on going to bed. I woke up once in the middle of the night with that familiar ping, but it resolved itself within a few minutes and never progressed to a full on headache. I also skipped my usual 6 am headache this morning, so I guess so far it seems to be helping!

CHfather - thanks for the insight on splitting up the sumatriptan injections - I would have thought cleaning it with alcohol was a good idea, good to know that’s not advised! They are crazy expensive so it would be nice to get a few more uses out of them!

Share this post


Link to post
Share on other sites

muggle, many thanks for the information.  I hope the melatonin keeps helping you.

Of course, from what we have seen it's not at all impossible that the nurse practitioner's daughter has never been prescribed O2, either!  But you would think that with a medical professional in the family, someone has actually bothered to look something up, so it seems like there's a good chance she will be knowledgeable about O2.  If you click on "Download PDF" here -- https://jamanetwork.com/journals/jama/fullarticle/185035 -- you'll get the full O2 study, which you could print out and bring with you.  Hope it goes great!! 

Share this post


Link to post
Share on other sites

Hi all,

Just wanted to give you guys an update. I went to the nurse practitioner today (her name is Dr. Sandra Lee by the way) and I brought the printouts for the Oxygen therapy and the vitamin D3 therapy. She was all for me trying the vitamin therapy (and apparently had used it for some of her migraine patients) so I am going in for lab work tomorrow to get my baseline results so we can get the dosage correct. She also said before I even mentioned it that I should be on Oxygen. I was like “YES! Finally!” Unfortunately, laws prevent nurse practitioners from prescribing it, which she admitted was stupid, but then told me she was going to talk with my primary doctor and plead my case to him. Well she called me a few hours later and said she convinced him to do it, so I finally am getting the Oxygen! I was so happy I started crying on the phone. So I’m hoping between the Oxygen and vitamin therapy that life will become much more mangeable! Never underestimate the importance of finding the right doctor. She is getting a thank you card for sure!

Share this post


Link to post
Share on other sites

Thrilling.  Good for you for hanging in so well!

When you get the prescription and you know who the oxygen supply company will be, I strongly recommend that you call before anything is delivered to you, to be sure they understand what a CH patient needs.  Most of their customers are folks using low-flow O2 and nasal cannula, maybe from a concentrator (a machine that makes O2 out of room air), and they might try to give you some or all of those things.  Your prescription is fairly likely to specify 15 lpm and a non-rebreather mask, and those are things you want (if you can get higher lpm or even a demand valve system, that would be great, but unless they're prescribed, you probably won't get them).  The prescription probably won't specify how many tanks and what sizes.  You will want at least two tanks, at least one large one (an "M" tank or an "H" tank), and at least one smaller one for portability (most likely an E tank).  As I mentioned in a previous post, these different size tanks require different regulators.  It seems safe to assume they will know that.  As I also mentioned previously, you will want some kind of stand to hold your O2, preferable a rolling one.

You might get by fine with the standard non-rebreather mask (you will want to modify it a little by blocking the circle of open holes there might be, and by cutting the strap so the mask falls off if you fall asleep). On some masks the circles of open holes have a gasket behind them. You don't have to mess with that.  But on many, one of the circles is just open hols.  You block it, with tape or with your thumb, so that when you inhale you aren't getting any room air.  You would be wise to order the "ClusterO2 Kit" mask, which is specifically designed for people with CH.  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Finally, when they deliver it, have them set up the large tank and show you how to use it (if they know -- they might well just be delivery people).  But at least make sure it works.  When my daughter's first medical O2 was delivered, they didn't tighten the regulator or provide her with a wrench, so we had to run out and buy a large wrench before it would work properly.

Share this post


Link to post
Share on other sites

When I was first getting my O2 setup they did not supply me with any of the things I needed. I ordered 2 of the mask from the link CHfather gave you and ordered my regulators from Amazon. Getting the oxygen if the hardest part of it so you will soon have a med free safty zone to retreat to and im sure you will be happy with the results. Here are some links to regulators

E tank: https://www.amazon.com/Regulator-0-25-Adult-Healthline-Trading/dp/B079J5X5FR/ref=sr_1_1_a_it?ie=UTF8&qid=1542801580&sr=8-1-spons&keywords=oxygen+regulator&psc=1

You want to make sure you get one with the barb on it so you can hook your tubing to it.

M tank: https://www.amazon.com/dp/B00BXRBH9M/ref=sspa_dk_detail_3?psc=1

I use a adjustable wrench for my M tank and they will most likely give you the keys for the smaller E tanks. 

Good luck and enjoy! 

 

Share this post


Link to post
Share on other sites

Oh funny..  Ignore my links below.  The Amazon link FunTimes posted above is by far much much better!

J

 

Ebay is also a great place to get regulators.  At a minimum I'd get a 15 liter per minute, or the best regulators will go up to 25 lpm.  It's very likely the oxygen company will only stock 8 lpm regulators (I've had this issue with every O2 company I've dealt with over the years).  For the most part 8 lpm doesn't do anything for our CH.  Buying your own is cheap and you'll never be without it! 

25 liter per minute - 

https://www.ebay.com/itm/medical-oxygen-regulator/323535378941?hash=item4b543619fd:g:Kb4AAOSwRxJb4H1E:rk:22:pf:0

15 lpm - 

https://www.ebay.com/itm/NEW-Drive-Medical-Oxygen-Tank-Regulator-Model-18301GM-0-15-LPM-Barb-Outlet/352326271208?epid=2254403594&hash=item52084840e8:g:UvoAAOSwCZ5VfLl3:rk:9:pf:0

Cheers,

J

 

 

Share this post


Link to post
Share on other sites

Thanks for all your help with the Oxygen stuff guys- I really appreciate it! I am still waiting to see exactly what all they will give me for this, but she did say she wants me to come to her office so she can show me how to use it properly, so I’m taking that as a good sign! I got all my labs done and got the okay from her to start the vitamin therapy, so I am just waiting on the rest of the vitamins to arrive because  I couldn’t find all of them in stores, so I had to order some of them through Amazon. I do plan on trying the busting method again because a relative of mine was helpful in obtaining this medicine for me. I’m guessing that the vitamin therapy won’t interact with that at all, but if anyone found that it did, please let me know! I hope everyone has a pain-free and happy Thanksgiving!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×