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Need O2 Help ASAP Please (Read 1069 times)
Mjedwards409
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Need O2 Help ASAP Please
May 14th, 2019 at 5:36pm
 
My wife is in the third cycle of her lifetime and was finally formally diagnosed this time around.  Her Neuro (well the P.A.) is in support of O2 and recommended the right flow rates.  (15 LPM, non-rebreather mask)  The issue is she told my wife she didn't need a prescription.  (Facepalm)  Which of course we do.  Either way, not a huge issue - I'm sure they'd write the prescription when they open tomorrow.

The issue is turning out to be the state of GA. Apparently it's very strict here on their rules for renting and refilling tanks. No one in Georgia will refill directly for patients. The only thing we can do to is buy a new tank each and every time.  For some reason also, there are only a handful of companies that even sell medical tanks. The only one I could get in touch with this morning sell E-Tanks as the largest and it's $75 a tank since there aren't refills.  She offered a concentrator as an option but max flow rate is 5 LPM. (She also argued with me that 5 LPM was effective for CH and any higher than that is dangerous, but that's for another thread.  Lips Sealed )  I'll try to shop around tomorrow, but there are only a handful of medical O2 sources that service patients in GA, so I'm guessing with the oligopoly they seem to have, we're going to be looking at similar prices considering refills are against the law here.

The Neuro is telling us that there is no way insurance will cover O2, even if she prescribes it exactly as described on this site.  So I'm guessing if she's getting hit once per night, we'd need at least 3 E-tanks per week which will cost us about $900 per month. 

Should we start looking at welding oxygen at this point?  Is $900/month the new reality in our life? (If that's the case, so be it.  I'll do anything to get her out of this pain.) 

Any help here is appreciated.  I'm about to head to the pharmacy to drop $200 on 6 Imitrex nasal sprays because the tablets aren't helping anymore.  Doc prescribed her Verapamil which she starts today, but I know that won't kick in for a few weeks so we definitely need to get O2 sorted out ASAP.

My only other option is to look at options in Alabama, which is about 60 miles away from us.  I'm guessing with the round trip I'll have to take on a regular basis the welding O2 might be a better option.
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Mike NZ
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Re: Need O2 Help ASAP Please
Reply #1 - May 15th, 2019 at 2:58am
 
No refilling of O2 cylinders sounds a bit of a rip off. All around the world cylinders are routinely refilled, either directly or you just swap out your empty one for a full one.

Whilst there have been a few isolated reports of success with concentrators, all they do is to concentrate the oxygen content, so with the low flow rate and non-pure oxygen they are not really a good option.

Lots of people have had success with welding oxygen, although they never say they are going to be breathing it, instead they say things like it is for their aquarium or they are doing welding and they just need the oxygen, etc.

Welding oxygen is highly pure, otherwise you'd contaminate the welds, which would weaken them. The only difference people have reported is that between fills the medical cylinders get a bit more cleaning.

It looks like you need to make a choice on what you want to do, balancing the effort (going to Alabama), cost (medical oxygen) or considering using welding oxygen.

Around verapamil, I wrote a detailed post a while ago which will be worthwhile reading - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Also I can strongly recommend looking at using vitamin D3 (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register). It has helped 80%+ of people who tried it, with many including myself going CH pain free for multiple years.

I hope this helps, but fire away with any other questions.
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Mjedwards409
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Re: Need O2 Help ASAP Please
Reply #2 - May 15th, 2019 at 7:01am
 
Thanks Mike for the feedback.

Yes I agree the no-refill rule is horse****.  Apparently only the licensed providers, doctor's offices, etc can get refills.  I called 3 different O2 companies that provide refills yesterday and all of them said they don't provide refills directly to patients.

Agreed on the concentrators. At 5LPM it would be completely useless.

The Neuro's P.A. is supposed to be calling our insurance company today to see if we can get them to pay for any of this.  If not, I'll be calling some places in Alabama today or going the welding O2 route. So frustrating that a therapy that's so safe and side-effect free is so complicated to get, yet I could call my doc tomorrow and get loaded up on opioids with just a sob story. 

Thanks for the article on the Verapamil.  Very insightful.  She was prescribed 120MG of the ER every night before bedtime for 7 days and then on the 8th day starts 120MG ER in the morning and 120MG ER in the PM.  From everything I've read, this is an extremely low dose plus the ER apparently doesn't work as well as the quick release. I might send a few articles today to the doc and see if they will rethink their strategy.

Thanks for the rec on the D3.  She's on her 9th day of the accelerated loading schedule.  I'm tempted to say she hasn't seen any relief from it, but who knows if her once nightly Kip 6-8 attacks would be 3X/night Kip 7-10 if she weren't taking it.   Undecided
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Mike NZ
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Re: Need O2 Help ASAP Please
Reply #3 - May 15th, 2019 at 10:06am
 
Mjedwards409 wrote on May 15th, 2019 at 7:01am:
Thanks for the article on the Verapamil.  Very insightful.  She was prescribed 120MG of the ER every night before bedtime for 7 days and then on the 8th day starts 120MG ER in the morning and 120MG ER in the PM.  From everything I've read, this is an extremely low dose plus the ER apparently doesn't work as well as the quick release. I might send a few articles today to the doc and see if they will rethink their strategy.

Thanks for the rec on the D3.  She's on her 9th day of the accelerated loading schedule.  I'm tempted to say she hasn't seen any relief from it, but who knows if her once nightly Kip 6-8 attacks would be 3X/night Kip 7-10 if she weren't taking it.   Undecided


Whilst 120mg / day is low, you need to titrate up to an effective dose. Typically 360-480mg a day will help most but some need up to 1000mg/day.

The ER / standard release isn't clear cut, some including myself worked well with the ER version. It is just a matter of trying it, which I know isn't a great option when you want CH relief ASAP.

The D3 route can take some people a few weeks to kick in. Jumping to a keto diet can also help, i.e. cut out all the sugar and reduce other carbs.

Batch put together the D3 option and he is a regular on these forums, so he is great at answering any questions.
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Mjedwards409
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Re: Need O2 Help ASAP Please
Reply #4 - May 15th, 2019 at 6:21pm
 
Ok well good news and bad news.  The good news is we found an Oxygen supplier that was willing to let us have two M-sized tanks at $30 a pop.  No rental fees.  We got a 15 LPM regulator and what the guy kept insisting was a non-rebreather mask.  However, it didn't have the bag and the whole mask is basically open.  It is designed however to let your lips create a seal around the center section where the tube comes in.  I can confirm a tight seal because I tried to breathe in mouth only without the O2 tank on and I couldn't breathe, at all.

I ordered her the Cluster02Kit from the store here.  Would it work for her to just focus on creating that seal with her lips with this one, even though it doesn't have the bag?  Seems the only downside is that she's wasting O2 when she's exhaling at this point, but with the other mask shipping 2 Day Air this shouldn't be a huge issue.  Thoughts?

Picture of the mask below - the little triangle section in the middle is where you can create a "seal" with your lips:

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Skyhawk5
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Re: Need O2 Help ASAP Please
Reply #5 - May 15th, 2019 at 9:19pm
 
The picture of the mask is no way usable for CH. We need no open holes. Most Doctors and o2 suppliers no little about CH treatment. CH is such a rare condition. WE have to know more than the Doctors, believe me.
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Mike NZ
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Re: Need O2 Help ASAP Please
Reply #6 - May 16th, 2019 at 4:19am
 
Batch described how to make your own which you can use whilst you wait for the good one to arrive.

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

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Mjedwards409
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Re: Need O2 Help ASAP Please
Reply #7 - May 16th, 2019 at 7:08am
 
Thanks all! PF night and some much needed rest for wifey last night. (Probably due to the pred taper doc is giving her while Verapamil builds up.) Hopefully CH store ships the mask today so it will get here while she’s on this little prednisone holiday. Just so glad we finally have a plan and process to source oxygen now. Thanks again all!
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« Last Edit: May 16th, 2019 at 7:08am by Mjedwards409 »  
 
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