Prescription Frustrations - long rant

[signals61]

Before I begin my rant, or preaching to the choir, I want to thank many of you who have shared your stories with me over the last few months. I'm currently off cycle, on the D3 regimen, and having just visited my GP yesterday for a 6 month follow-up, wanted to relate a couple stories: 

 I guess I'm lucky. My GP is very supportive of my condition. He admits he doesn't see it very often, hasn't had a patient with it in about 20 years, but he listens to me and generally helps with the proper prescriptions I need without objection. This saves me from having to make special trips to the Neurologist, which is time consuming and costly. 

Yesterday I asked my GP to write a script for O2, and another to change my Sumatriptan from the auto injector to the vial. He did both without objection. He wrote the O2 script properly (15 lpm for 15 min, per attack, for Cluster Headache, and used the proper ICD10 Diagnosis code of G44.009, indicating that insurance should reimburse). He did balk a little at the D3 Regimen, but agreed to run the lab tests for the proper levels. He wouldn't condone the "ridiculously high dose of D3", but also understood that ultimately that was up to me. 

So, now I have a proper script for O2 and another to get the right delivery mechanism for Sumatriptan. I'm excited! I'm pumped! This is supposed to be the hard part and doc just agreed to everything, straight off.

I carry my happy ass on over to CVS to get my new Sumatriptan script filled. Whoa there dude. Slow your roll. "See in our system, drugs are listed as red, yellow or green. Red means we can't get it, green no problem, yellow means its a maybe, and may possibly be gone soon. The vials you asked for are listed as yellow."
Well can you order it or what?
"Yes, just letting you know, we may not get it, and if we do, it might be a few days."
Fine, will you let me know?
"Sure" (Said with the same enthusiasm as the kid at Burger King having just been asked to make sure there are no pickles on your burger)

Somewhat deflated, but not down and out yet, I roll on over to the local medical supply company in my town. That went something like this: 

Hi, I have a prescription here from my doctor for oxygen. Can you help me get this filled? 
"Do you have insurance?" 
 Yes I do. 
"Well, we can't just give you oxygen. Have you had a blood test with blahblahblah results showing you need oxygen to breathe?" 
 Well, no, I haven't, you see, I don't need oxygen to breathe. But I do have this prescription right here, from my licensed medical doctor, if you'll just take a look at it, I'm sure it'll explain everything. 
(Won't even glance at the paper in my hand) "Sorry, but a prescription isn't enough. We need lots more paperwork. You need to show you have a valid medical reason for it." 
(Me getting agitated now) I'm sorry, I must have missed something - I know I'm a little hard of hearing and maybe a little dense. See, I always thought that was the point of going to see a doctor, and getting a prescription. The DOCTOR, decides that a drug or treatment is medically needed and he writes a prescription. I take it to a pharmacist, and they fill it. If there are questions, the pharmacist can call the doctor. Since the pharmacy doesn't carry oxygen, I'm here to see you. So, are you a licensed medical doctor or nurse practitioner? Did you recently perform an examination on me and determine that I don't have a valid medical reason for this Oxygen? Are you qualified to decide what is medically necessary? 
"No, but the problem is your insurance won't pay for it - you want it for cluster headaches, right?" 
Yes, and that's the first intelligent thing you've said so far. But you haven't even asked me who my insurance provider is, so not sure you'd know straight off that they won't reimburse, but fine, how much to simply sell me the tank with the oxygen in it? I'll pay for it out of my own pocket.
(Walks back to talk to someone else - comes back after a brief exchange with unknown unseen coworker) "It'll be $175 a month" 
Wait - its a monthly fee? I'm asking to buy a tank with oxygen in it. How do you sell that on a subscription basis? 
"Well, the fee is the rental on an oxygen concentrator. We won't sell you any oxygen in a tank." 
OK - let me explain again, My DOCTOR, performed an examination on me this morning in his office, and then determined that I need 100% pure oxygen @ 15 lpm for 15 minutes at a time. If you would have taken just two seconds to actually read the prescription I tried to show you, you would have seen that. I know that a concentrator won't provide that. So are you now attempting to countermand my doctors orders? Furthermore, I need this treatment for about 3 months out of the year. Why would I want to pay a monthly fee for something I wont use for 9 of those months? Basically, you're asking me to pay you $2100 a year for something that I can get on my own for less than a quarter of that. I can see the tanks in the back of your offices here, so I know you have them. What's the problem here? 
"Sorry, that's all we can do." 
Well, this seems at the very least, bad business. It's no wonder insurance companies don't want to reimburse when companies like yours are using practices like this. Obviously, I won't be back and will find some other way to procure what I need. 

Later on in the day, I called the insurance company, and sure enough they won't pay for oxygen to treat CH. I asked them why, but I didn't want to give the call center agent a bunch of crap for policies she didn't create and can't do anything about. She said she would send me a complaint form, but so far, that hasn't happened either. But it seems odd to me that they will gladly shell out hundreds of $$$ a year for my triptans, but wont give me $60 worth of O2. 

Somewhat deflated now, I'm still trying to find the best way to go on the O2. It looks like Airgas may be the best option short of going the industrial route. I'm going to call them today and see what they say. 

Anyway, if you made it this far, thanks for listening. I feel better just getting it off my chest. 

[spiny]

Venting is a good thing! Especially when you were treated so rottenly! Not unusual though. It is very infuriating to be put in a position of fighting for a non-destructive med when they will happily pay for one that can be destructive! Sounds stupid, no? 

The best of luck with Airgas! Hopefully someone who has fought this battle and won will help us out here. I just went with a welding set up.  

[signals61]

Update - Airgas, Here in Tennessee, will not deal with me directly, even with a prescription. The guy I spoke to said "It would be illegal for me to sell you oxygen". 
He referred me to Apria Healthcare, so it appears he gets the question often enough to know what to tell folks. 

Tried calling Apria - they still have some hoops to go through - need to call my doctor's office and have them provide the doctor's office notes and demographic information by fax (Hello, 1985 called and they want their technology back) 

I'm still not sure why these companies need all this additional info. You'd think I was getting opioids in bulk (In fact, I probably could get that easier than getting a tank of one of the most common elements on the planet) 

Anyway, doc's office is closed early on Friday, so yet another delay. Thankfully I'm not in cycle, so no real rush. 

[jost]

This is why I cringe on this forum when someone glibly tells me (or someone else) that I should be on oxygen. As if I hadn't considered it and the hurdles aren't insurmountable. I haven't found a doctor yet who over the years hasn't waved me off with the request. Much less have the chance to try to get it filled. It was kind of a bummer reading this because I have been thinking about trying again but probably not now.

What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a single place by any chance?

[CHfather]

1 hour ago, Jost said:

What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a single place by any chance?

https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

[jon019]

...hi Jost...it ain't glib when we suggest/push/cajole/beg a fellow cluster head to try O2..tis the #1 primary MEDICALLY acknowledged abortive for a cluster hit. Has SAVED LIVES and sanity (like mine)and it's a crime when one of us runs into a med professional who can't or won't prescribe it...or ins that won't cover. A few yrs ago on another forum it would be referred to in almost every thread....it's that important. Some folks don't know about it...I always presume NOT until I know for sure. And I will continue to risk pissing someone off because I can STILL feel the tears from 35 yrs ago when I aborted a hit "like water down a drain"...and I KNEW I just got my life back.....YMMV... but it's damn important to try. I learned about it pre any forum...then the job was to find a doc who would work with me (critical)...and fights with 7 insurance companies. The alternative of untreated CH was sufficient motivation for the battle...

Others can detail welding setups way better than I..but yur already 90% there ...and you are gonna be able just shake your head at the failings of some in the med/med insurance community...

PFDAN

Jonathan

[jost]

@CHfather Thanks for the link! I must have searched in one forum and not all of them. In any case it's quite helpful.

 

[jost]

@jon019 You're right and at my worst moments last summer it would have saved me from the total agony of "10" attacks that came like clockwork every 12 hours. If I'd have been prepared ahead of time it would have saved my daily life and allowed me to function I'm sure. The key is being prepared and therein lies the rub.

Obtaining oxygen is not easy either way and more complicated than it should be. I appreciate that is something a lot of people on this board fight for. Whether by prescription or "homemade" it shouldn't be so difficult. The fight to fill a prescription is exhausting and if I didn't have a nephew who does welding I'm not sure I could put all the pieces together for my own kit without some difficulty.

Now that the vicious CH cycle has morphed into something more manageable it is time to look into oxygen.

[spiny]

Jost, I sucked the cutting tip on our welding setup with a wet wash cloth over the tip the whole first cycle I knew about O2! Just dialed the regulator to the flow that I needed at the moment. Only turn on the O2 not the Acetyline. It worked great till I got my Clustermask and my own tanks in the house. If you rent a tank, then you have to have it filled by the company. If you buy it, you can have any welding O2 supplier fill it.

The dog sure misses those trips since I got setup in the house!!  

[kat_92]

@signals61 hey! I too had similar frustrations with the oxygen. My doctor even warned me ahead of time that he would gladly write the script, but that doesn’t mean I would easily get the O2. When I called to get the oxygen they said I needed a blood test to confirm that I needed the O2 in order to live. When I explained it’s for cluster headaches she cut me off and told me they don’t cover oxygen for “headaches” because it’s not life threatening LOL. I told her it’s not life’s threatening but cluster headaches will make you wish you were dead. And I hung up on her. Long story short, I didn’t go through my insurance and I pay $78 per tank out of pocket. 

Kat 

 

[spiny]

What sized tank do you have Kat?

 

[jost]

@kat_92 This is another example of why it's sometimes easier to just pay cash. Similarly I use a GoodRx coupon to sideline the limitations of nine sumatriptan a month per insurance. The doctor writes it, I get the nine and if should I need it a week later the pharmacy fills it using GoodRx coupons.

[kat_92]

@spiny I have an M tank. They are all $78 no matter what size 

[CHfather]

1 hour ago, kat_92 said:

They are all $78 no matter what size

I'm kinda ignorant about the variables on the financial side here.  When we had medical O2 (before switching to welding), we paid a flat monthly fee.  Is your cost $78/month, or $78 for each full tank?  Or was there a higher charge for the tank initially and the $78 is for refills (replacement)?  You got only the tank and bought your own regulator and mask?  Do you get the same service as a customer gets who goes through insurance--prompt deliveries on request?

Thank you!`

[kat_92]

It was a deposit of $150 and $78 for every new tank I get. They provided a regulator and a mask but I bought my own. The delivery is great. They will come the next day 

[CHChris]

Once I went to strictly welding O2 I thought I was set.  But there are still problems sometimes.  I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled.  I often have to exchange my tanks, which I hate but tolerate.   I also still carry a print out of my O2 Rx with my portable tank, regulator and mask.  But I NEVER mention medical oxygen or Rxs with the welding store.  They get really weird about selling welding o2 when you do that.

I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon.  These days my O2 bill is down to about $40-60 per month.

However, there were some steep up front costs.  Each 125 cu ft tank was about $250, and the E tanks were about $50 each.  The transfill rig was about $80 off Amazon. 

 

 

[signals61]

You know, I don't want to sound like I'm wealthy or anything, but cost really isn't the issue for me. I'll gladly pay out of pocket. My problem right now is everyone seems to be saying that they won't sell it to me, even with the prescription and the cash. Bearing in mind, I'm trying to go the "medical" route, using medical grade tanks. 
I found a source on Amazon that will sell a filled industrial grade tank. I know that many have said over and over that the safety is not an issue, I just really wanted a clean tank, rather than one that's been sitting in an auto shop for the last 6 months, traded in and refilled. 

Latest update is that Apria said they'd do it, at my expense, if the doctor sent some additional paperwork in addition to the prescription. So what exactly is a prescription for again? Anyway, still playing phone tag with the doctor. Hopefully today I get something resolved. 

[PDFulton]

It must depend on your location? My neurologists office works with a medical O2 supply company and even though our health insurance which normally covers almost everything won't pay  so the supply company was perfectly willing to accept payment via credit card.  In other words, my script for oxygen didn't go though our pharmacy at all but rather directly to the company that supplies the oxygen --- The big plus for me was that they delivered it directly to our home.

And I even got an extra tank so I can have one to keep in my office.  

To me the expense was nominal as $25 per tank and a one time $25 fee for the supplies to go with (2 masks and the regulator valve).

 

 

[xxx]

Chris,

Great post!  It should help Signals with his problem obtaining welder's oxygen as an abortive for his CH.  I share your frustration with the draconian regulations that prevent CHers from obtaining home oxygen therapy as an abortive for their cluster headaches.  You covered the important parts of obtaining and using welder's oxygen as a CH abortive and that's fantastic.  I did the same thing in September of 2010 following a move from Virginia back home to Bremerton, Washington when my Rx for oxygen ran out.  $250 for the M-Size welder's oxygen cylinder at the local welding supply outlet 2 miles from home and $35 to exchange the empty for a refilled cylinder. 

I actually do some brazing, but most of the time, it's cutting skids and chokers to pull logs.  We live in the woods on the Kitsap peninsula in the heart of Puget Sound, Washington 20 miles due West of Seattle near Bremerton.  The gravel driveway, a.k.a., a logging road from the county road to the house is 900 feet long and crooked as a dog's hind leg as it winds through heavy stands of secondary growth Douglas Fir, Cedar, Alder and Big Leaf Maple trees.  We don't get many unannounced visitors...

A windfall a year across the driveway is par for the course so I keep two Stihl chainsaws gassed and ready.  Windfalls are also a convenient source of fire wood.

I've a transfiller that I used to fill my aluminum M60.  It's configured with a Flotec 0 to 60 lpm regulator with DISS fitting for my Carnét oxygen demand valve that enabled me to abort my CH in an average of 7 minutes at respiration rates that support hyperventilation.

All totaled, I've easily $2500 worth of oxygen equipment, but haven't used it for more than a week since October of 2010 when I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors.  The aluminum M60, Flotec regulator and Carnét oxygen demand valve sit in the laundry room under a plastic bag.  I've still 800 psi remaining in the second welder's oxygen cylinder refill I purchased in early October of 2010.

Getting back to the difficulty of obtaining oxygen therapy for our cluster headaches and what we can do about it.  For starters, we can thank the unelected bottom feeding bureaucrats at the Centers for Medicare and Medicaid Services (CMS) for their non-coverage determination for home oxygen therapy. This non-coverage determination prevents Medicare beneficiaries with CH from obtaining home oxygen therapy. They're not alone.  We can also thank the Big Pharma lobbyists from K Street and their bought and paid for legislation passed by money hungry members of Congress over many years for the draconian regulations on home oxygen therapy that allow too many medical insurance companies to decline coverage for this very safe and effective CH abortive.

I tried to have this non-coverage determination changed in 2008 but was blown off by CMS.

In 2009 I joined forces with a team from the American Headache Society (AHS) to do battle with CMS in an attempt to overturn this absurd non-coverage determination for home oxygen therapy for CHers.  The AHS effort was conceived and spear headed by Dr. Fred Sheftell, MD, Presisent AHS, a chronic migraineur.  In early 2010, Dr. Sheftell retired and turned  the reins on this effort over to a pair of heavy hitter neurologist, Dr. David Dodick, MD, the new President of AHS, and Dr. Deborah Friedman, MD, M.P.H.

They presented a binder with 30 clinical trials, case studies and findings from the European Federation of Neurological Societies (EFNS) that recommended oxygen therapy as a safe and effective first abortive of choice for cluster headache as evidence.   They also had a team of neurologists and headache specialists standing by as expert witness to provide testimony as to the safety and effectiveness of oxygen therapy as a CH abortive.

The bureaucratic swamp turds at the CMS Coverage Analysis Group disallowed the entire binder as medical evidence when none of the studies met the RCT gold standard of being randomized, blinded and placebo controlled.  They also declined to meet with the expert witnesses as none could provide a gold standard RCT as medical evidence.  The rest is history.

I've attached the letter sent by Dr. David Dodick to the head of the CMS Coverage Analysis Group.  It's eloquent and to the point, but had no effect. The Non-Coverage determination still stands.

I've been a part of two efforts to overturn this non-coverage determination and know of the third from here at Clusterbusters.  Two have been bottom up and the third from here at Clusterbusters tried  a middle up approach with support of a congressman.  Unfortunately too many members of the House and Senate are on the take from Big Pharma so the Clusterbuster effort failed in a legislative attempt to overturn this non-coverage determination.

The only way we're ever going to achieve success is with a top down approach by President Trump.  If President Trump takes action to fix this terrible regulation, it will get fixed! 

The best way to do this is to contact the White House at the following link.  https://www.whitehouse.gov/contact/

It will give you the option of "Contact the President" or "Help with a Federal Agency."  Select either option, (You can go back a second time and select the other option to cover both information avenues).  Fill in the blanks then in the final blank "What would you like to say" start out with the regulations governing home oxygen therapy for cluster headache sufferers on MEDICARE are too restrictive to the point Medicare and Medicaid beneficiaries with cluster headache are not covered.  Point out that President Trump made a promise to the American people he would help cut the red tape and restrictive regulations that make things like home oxygen therapy so costly and difficult to obtain. 

Give your own story in your own words like how you're forced to use Triptans like Imitrex costing $900/month for the nine shots per month covered under Medicare as an abortive but the estimated $100/month for home oxygen therapy is not covered. 

The average cluster headache sufferer has three of these terribly painful headaches a day, 90 a month, yet Medicare will only cover relief for 9 of these terrible headaches a month with Imitrex. Home oxygen therapy would cost much less at $90 to $100 per month and could be used for all cluster headaches not just 9 a month with Imitrex, then be forced to suffer agonizing pain during 80 more of these cluster headaches without any relief. 

Ask why an expensive pharmaceutical like Imitrex is covered as a cluster headache abortive for Medicare and Medicaid beneficiaries, yet USP oxygen is not. 

Ask if existing legislation and regulations governing coverage for home oxygen therapy has been influenced by Big Pharma to their advantage in the market place?

The simple solution is to make home oxygen therapy an OTC item. This would eliminate burdensome regulations, increase competition and ultimately lower the cost of home oxygen therapy.  The savings at HHS/CMS would also be huge as a large part of the CMS budget is spent administering prescriptions for oxygen and the durable medical equipment associated with home oxygen therapy for Americans with COPD.  The American Lung Association (ALA) thinks there may be as many as 24 million American adults living with COPD and that doesn't count Americans with Bronchitis or Emphysema who also need supplemental oxygen.  Unfortunately, as hundreds of bureaucrats at CMS and thousands of their DMEPOS contractors who regulate access to home oxygen therapy, have their snouts in the taxpayer funded feeding trough.  So this is likely a non-starter.

What would work is a President Trump request to Congress for an amendment to 21 USC, §360ddd–1. Regulation of medical gases, a,(3),(A), (i) by adding "or cluster headache or migraine headache to (I) which presently states "In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia.  This needs to be amended to read as follows:

"(I) In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia or as an abortive for cluster headache or migraine headache."

Again, use your own words.  If one or two up to maybe five CHers go to this White House website and complain about home oxygen therapy, it's likely nothing will happen.  If the number of hits goes above 50, they have tracking systems that will flag this topic.  Then the odds of meaningful action go up big time.

Take care... and Take Action!

V/R, Batch

Comments on Proposed Decision Memo CAG-00296R-1.pdf

[Rush]

On 1/15/2020 at 1:22 AM, CHChris said:

Once I went to strictly welding O2 I thought I was set.  But there are still problems sometimes.  I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled.  I often have to exchange my tanks, which I hate but tolerate.   I also still carry a print out of my O2 Rx with my portable tank, regulator and mask.  But I NEVER mention medical oxygen or Rxs with the welding store.  They get really weird about selling welding o2 when you do that.

I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon.  These days my O2 bill is down to about $40-60 per month.

However, there were some steep up front costs.  Each 125 cu ft tank was about $250, and the E tanks were about $50 each.  The transfill rig was about $80 off Amazon. 

 

 

I have had no CH cycle since I started the vitamin regimen, been about 2 years :).. now out of the blue I have been getting shadows the last couple of nights and am HELL BENT on getting my welding setup.. 2 years ago I spent countless hours trying to get medical oxygen and it is enough to frustrate ANYBODY!

I was looking at the 125 tank, has that worked good for you Chris?.. I am also going to order the non re breather mask, and have to look into the best regulator to use.

I don't care about having to haul a heavy tank, I would rather have enough to last longer when I have a bout.. thanks

[Rush]

On 1/15/2020 at 1:00 PM, signals61 said:

You know, I don't want to sound like I'm wealthy or anything, but cost really isn't the issue for me. I'll gladly pay out of pocket. My problem right now is everyone seems to be saying that they won't sell it to me, even with the prescription and the cash. Bearing in mind, I'm trying to go the "medical" route, using medical grade tanks. 
I found a source on Amazon that will sell a filled industrial grade tank. I know that many have said over and over that the safety is not an issue, I just really wanted a clean tank, rather than one that's been sitting in an auto shop for the last 6 months, traded in and refilled. 

Latest update is that Apria said they'd do it, at my expense, if the doctor sent some additional paperwork in addition to the prescription. So what exactly is a prescription for again? Anyway, still playing phone tag with the doctor. Hopefully today I get something resolved. 

Good luck !! I have given up trying, I had an Rx from my doctor, but could not get anyone in Orlando to fill it.. It would be nice if we could pass a few of our CH's on to these people so they would understand in a BIG WAY

 

[CHChris]

@Rush

I think the 125 cu ft tank is the perfect balance between size and portability.  The tanks are fairly large, but I can carry them around without issue.  I fill my E tanks off of them and also have them set up for home use.  The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks.  If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it.  Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot.

Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago.  I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals.  They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area.  But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.

[Rush]

1 hour ago, CHChris said:

@Rush

I think the 125 cu ft tank is the perfect balance between size and portability.  The tanks are fairly large, but I can carry them around without issue.  I fill my E tanks off of them and also have them set up for home use.  The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks.  If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it.  Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot.

Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago.  I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals.  They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area.  But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.

I went to the Orlando Medical Rentals website, and it looked familiar, but that's all I can remember from 2+ years ago when I had the Rx.. I got so frustrated after a couple months that I gave up to go with the welding setup.. My wife is so irritated that I did not follow through when I decided to go with the welding tank, because my cycle ended and have been pain free for 2+ years.

The 125 tank sounds good, I found a place about an hour from here that didn't seem overly interested in what I needed it for so I am going to go that route. Still only having shadows for now, but my last cycle was hitting me HARD 2-4 times every night so I was curious about the tank size. Kinda strange, I have been getting these  since my early twenties (I am 61 now).. and they mostly were all during the day, but last 2 cycles were 95% during the night.. odd

The neurologist I saw to get the Rx I only saw once, or I would give it one last shot with the Place you found.. to scared to wait now :\

Thanks for info Chris!!

[rdallasc]

i am thinking im going to have the same problem.  we asked my nurse pratictioner, and old highschool buddy to perscribe o2 for my clusters. ive never been" medically dignosed" but all the research,pain, cluster season periods, i know that i have them. always have been self pay, no insurance. when they started 9ish yrs ago, i was misaerble every night,around 7 to 8 at night for 3 months then gone.

this continued every year until 3 years ago. my dad is on o2 for copd and he loaned me tanks,got a  regulator that goes to 15lpm  max and non rebreather we ordered

then self medicaded with phcillibian, and after 3 doses went into remission until now. showed up 4weeks ago and are way more intense. since my last cycle, we recently moved away. we are a 1hr and half away from any decent size city for 02. and 3 hrs awayto borrow dads small tanks that i go through one tank in 30 minutes and most of time the headache isnt gone.

so anyways, texted dr, explained my condiiton, sent him links of info. because he was worried about o2 toxiticy, he then wrote me a script for o2, on script it says, for cluster headaches, 15lpm for 30 min intervals, up to 4 times daily, as needed. the damn oxygen place wont honor his script, want more paperwork, diagnosis, etc.

my dr doesnt even understand the ch and never has treated a person. but after reading research, trusting my judgment and my pain im in. he agreed. so now what? any help please

[Rush]

47 minutes ago, rdallasc said:

i am thinking im going to have the same problem.  we asked my nurse pratictioner, and old highschool buddy to perscribe o2 for my clusters. ive never been" medically dignosed" but all the research,pain, cluster season periods, i know that i have them. always have been self pay, no insurance. when they started 9ish yrs ago, i was misaerble every night,around 7 to 8 at night for 3 months then gone.

 

The fact that your Doctor "gets it" is definitely a plus.. I have brought in literature and such, and mine has next to no clue what a CH REALLY is.. the only place I had luck with several years ago, was a "sleep deprivation"  (spelling?) institute that took my Rx with no problems at all, they went out of business and I have had no luck trying to get the medical o2... thats when I went through these message boards to look into the welding setup which a lot of people use.

GOOD LUCK !!!