Oxygen from Primary Care?

[CaptChaos]

Hello,

I'm Chris and this is my first post on CB... I've been following the forum for a while in search of other's stories with CH and wanted to share mine. I've been dealing with CH for nearly 17 years and I am going through the most complex cluster of my life. Nearly all of my CH episodes last 3-5 weeks and affect the left side of my head. I typically treat them with Verapamil and Imitrex shots or pills for mild ones.

I mentioned this episode was the worst and most complex. I started getting my "normal" CH around Easter this year but didn't start the Verapamil. I didn't have any of the SR pills on hand and couldn't be seen to renew with C19 shutting down most clinics. Sometime around the second week of May I stopped getting my headaches but was dealing with shadows. After two weeks of no CH I assumed I was in remission. However, starting about 10 days ago I seem to have retriggered a CH episode but this time it's 100% affecting the right side of my head. I know CH can switch sides but this is the first time it's happened since 2006 and I find it odd that it happened so closely to my last episode. My neurologist suggested starting my typical treatment but also introduce 250mg/day magnesium and 50mg/day B-2. 

Anyway, I've been reading a lot about high-flow oxygen therapy and requested it. My neurologist said his clinic doesn't work with home medical suppliers and that I need to get this initiated from my primary care physician. Has anyone else had to do this to get on O2? My neurologist initially suggested that I was a low-risk patient if I were to use more than the 5 shots/week but has now rescinded that statement and told me to stop Imitrex. I've reached out to my primary care doc but curious what else can I do?

Thanks.

[Pebblesthecorgi]

You are getting the run around.  Clearly your neurologist is either disinterested or not competent to take care of cluster headaches.  Yes, your primary can prescribe oxygen as your neurologist can.  If you are in the US any licensed physician can prescribe.  It is possible the O2 home suppliers are difficult to work with and that is why the neurologists office is punting.  Its more likely the neurologist office isn't familiar with the process.  Depending where you live it might be worth a call to a pulmonoligist office and talk to the nurses (they do the orders anyway) and ask for advice regarding getting O2.

Imitrex can be helpful but also can cause rebounds.  Using smaller doses of 2 mg from a multi dose vial works great and limits side effects.  Prefilled injectors can be broken down to use smaller doses with an insulin syringe.

O2 is a godsend and you should figure out how to have available.  You might consider the D3 regimen also.

C19 has changed the world and medical care is strongly affected.  Telemedicine is ideal for established cluster patients but providers are still working out how to use it.  In the end you need a provider who listens, is willing to look things up and will prescribe what you need.

 

 

[FunTimes]

As far as I know all you need is the prescription. That could come from either of the 2 doctors, then you can call around to local O2 suppliers and work out the rest with them. I would not get to hung up on the flow rate of the regulators they give you because most likely you will want to buy your own, same goes for the mask. I found it much easier to make the calls to the oxygen providers myself, tell them what I wanted and what I need the doctor to send them and them call the doctor and tell them what to write on the script. It is a pain in the ass and yes you are doing someone else job but that is the only way you will get what you need. here are links to the regulators and mask most of us use. If you are comfortable giving your general location im sure we have members on this site that may know of a good oxygen supplier that can deliver to your home. 

This regulator will work on E tanks

https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1

This one will work on the M and M60 tanks

https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1

The mask can be found here

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

  

 

[CHfather]

Very good advice and observations from the other posters, Cap'.  But who knows whether your primary doc will actually prescribe O2--it would be rare if s/he does, and doesn't just bump you back to the idiot neuro.  As F'T' said, all you need is the prescription.  You need to be ready to be persuasively insistent with the primary, or when you go back to the neuro. Or find someone else. 

Be aware that you can quickly set up an O2 system using welding O2, as many people do.

Imitrex ain't great for you, for sure, but he just told you to stop--no more prescriptions?

So what are you supposed to be on now--Some Verap (which won't take effect for at least a week), any leftover Trex, and some magnesium (might help) and B-2 (might help). 

This post will give you some info about all these things and some other stuff that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

 

 

 

[CaptChaos]

37 minutes ago, CHfather said:

Imitrex ain't great for you, for sure, but he just told you to stop--no more prescriptions?

So what are you supposed to be on now--Some Verap (which won't take effect for at least a week), any leftover Trex, and some magnesium (might help) and B-2 (might help). 

My Neuro just recommended not exceeding the standard max dosage (2 shots/24 hours or 5 per week). He said he will let my primary care physician know he recommends HFO for me. I've had success using Verap in the past to limit frequency and severity of headaches. I can likely get a refill on imitrex.

 

 

 

 

[kat_92]

I got a script for oxygen from my primary care doctor to a medical supply company. Getting the script wasn’t so much the problem as it was finding a place that actually delivered. Also, getting insurance to cover it is a pain in the you know what. My doctor wrote the script for an O2 tank for cluster headaches. Insurance says they won’t cover it bc headaches aren’t life threatening. I pay $78 per tank out of pocket. I hope you find some relief soon 

[CHfather]

Be sure you read the info on splitting Imitrex injections.  A typical injector for CH is 6mg; most people can stop an attack with 2mg, or at most 3mg.

If the Verapamil works quickly for you, that's great.  It's pretty standard CH practice (or at least commonly recommended practice) to consider a course of steroids to temporarily stop or ease the pain while Verap gets into the system well enough to do its job.

I'm glad he's taking that step of letting your doc know about that O2 recommendation. In our considerable experience here, most of those docs are very reluctant to prescribe O2. There is a strong belief that most of them don't even know how to write a prescription for O2.  Fingers crossed that it's all going to work out. 

I hope you'll still look at that file I linked you to, to consider all your longer-term treatment options (D3, busting, etc.) and some of your shorter-term possibilities (energy shots; Benadryl; etc.)

Edited June 9, 2020 by CHfather

[FunTimes]

When calling around for oxygen make sure to ask for pricing with and without insurance. I was told it would be over $200 a month for up to 3 deliveries with my insurance. I told them I want to pay out of pocket and it went down to just under $100 a month. You will want more then one tank and even a few different sizes. E tanks are a good size to keep in your car and at work is you can. M60 tanks are about twice that size and are good for home use. a M60 tank is about twice the size of a M60 and is even better for home use but is a little heave to lug up stairs but is worth it is you can manage to get one. After you have your company set up and a few tanks we can help you with ways to grow your collection so you will be sure to have enough tanks to cover you when things get bad and you are using it a lot. 

[ThatHurtsMyHead]

FT makes a good point.  When I had insurance years ago, I paid a copay of $15 per E tank.  When I lost my insurance the Oxygen company charged me $8.10 per exchange...  Had I known not having insurance was cheaper, I wouldn't have fooled with insurance to start with.

J

[Rod H]

There is also welding tanks. You wouldn't need a script for that. Buy one tank and you can exchange it for a full one like propane. My local napa offers that service. $42

[CaptChaos]

Thank you everyone for the advice and suggestions. I am calling around this morning looking for medical supply companies that deliver to my residence. I have a good relationship with my PC doc and I'm hoping that I can use the resources here to help him understand what I need him to do so I can get tanks. I'm lucky enough I work from a home office so having the large tanks will not be that much of a hassle. I have insurance through the state but I don't have any problem paying out of pocket to try something different to bring relief.

19 hours ago, CHfather said:

Be sure you read the info on splitting Imitrex injections.  A typical injector for CH is 6mg; most people can stop an attack with 2mg, or at most 3mg.

If the Verapamil works quickly for you, that's great.  It's pretty standard CH practice (or at least commonly recommended practice) to consider a course of steroids to temporarily stop or ease the pain while Verap gets into the system well enough to do its job.

I'm glad he's taking that step of letting your doc know about that O2 recommendation. In our considerable experience here, most of those docs are very reluctant to prescribe O2. There is a strong belief that most of them don't even know how to write a prescription for O2.  Fingers crossed that it's all going to work out. 

I hope you'll still look at that file I linked you to, to consider all your longer-term treatment options (D3, busting, etc.) and some of your shorter-term possibilities (energy shots; Benadryl; etc.)

My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. 

The main concern my neuro had with O2 seemed to be storage and safety hazards. I asked about O2 therapy at the end of my last CH episode and he suggested waiting until the next so I wouldn't have full tanks lying around the house unsecured. 

[CHfather]

4 hours ago, CaptChaos said:

The main concern my neuro had with O2 seemed to be storage and safety hazards. I asked about O2 therapy at the end of my last CH episode and he suggested waiting until the next so I wouldn't have full tanks lying around the house unsecured. 

As long as your tanks are well secured so they don't fall over, the only significant danger would be if your house were to catch on fire (from some other cause).  He was right in the sense that there's some tiny risk associated with having tanks in the house, but he was wrong in the sense that now here you are in cycle and still trying to get O2.

Splitting the shots from an autoinjector will require you to inject yourself in the conventional way (autoinject is disabled when you take the injector apart).  O2 is going to very significantly reduce the number of times you need to inject. (And other things, such as energy shots, D3, and busting, can further reduce that.)    

You physician probably (??) subscribes to some service, such as UpToDate, that he can refer to in order to find out what recommended treatments are for various conditions.  If he looks there, he will see oxygen listed as #1 (along with Imitrex) for CH.  But he might hesitate in part because he doesn't know how to write the prescription.  If you can say in some casual way that you know what the language of the prescription should be, that might help.  One version of that language is "Oxygen therapy for cluster headache: 15 minutes at 15 liters per minute with non-rebreather mask."  I think I wrote about this in that other post in the CB Files section. . . some things are spelled out here that a doctor would abbreviate: CH instead of cluster headache, min instead of minutes, lpm instead of liters per minute, nrb instead of non-rebreather mask . . . and if you could get him to make it 25 lpm, or prescribe a demand valve system, that would be cool but probably pushing too far.  Not hard, as mentioned in a few places, to optimize your system--and 15 lpm might actually work fine for you.

[spiny]

Well, he may think he is doing it for safety when he does not understand that many CHer's have a tank or three of O2 at any given time, year round. Even Episodic's do not wait for a cycle to hit before getting their O2 in order! They may store them carefully out of sight, but they are at the ready when needed.

When you set it up, you check for leaks. You secure it so it won't fall and create a possible hazard. Odd that they will give you meds that can be deadly and that is fine, but O2 tanks are a hazard. I find this to be a bit insulting.  Perhaps not intentional, but still insulting. It is sad that he does not understand this reality of Ch. By suggesting that you 'wait', he guaranteed you will have pain to suffer till you can get re-supplied. Glare.....

As stated above by many, you can safely store and use it. Be it medical or welding O2., it is your best friend!!!   Fingers crossed that your PPC will straighten this out for you. Likely he knows you better and will be willing to work with you when he comes into the picture. Written as CHF stated, you should get great relief with the huffing methods most of us use. 

PFDAN

 

[jon019]

"My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. "

That's actually a WAH-HOO moment as most docs are unaware of the existence of vials...and sometimes they are hard to source....BUT it gives you SO MUCH more control over dosage...the smaller amount of Imi used the lesser chance of side effects and rebounds. Also cheaper in the long run as more doses available per script ...the ONLY negative being the actual injection. Get the smallest insulin needles available and you will barely (if at all) feel the injection. Used to have to do B12 injections...huge needles and deep in muscle....once I got past the initial and daunting task it became a breeze...insulin needles thin and short...you will be joyful at the results....

best

jonathan

[CaptChaos]

UPDATE: My PCP was not able to prescribe me oxygen and went as far as saying that no PCP at the clinic had heard of prescribing O2 for this. He said that O2 therapy is a specialty treatment for CH and needs to come from the Neuro. I asked for referal to a headache specialist since my Neuro specializes in Epilepsy and seizures. In all fairness, I have not seen my PCP for this condition in the past so I'm not surprised. He did give me a script for Prednisone to help break what he's calling medication overuse headaches from taking too many OTC drugs to relieve minor pain. I'm also on day 9 of Verap so hopefully that kicks in soon. 

I am now at the maximum amount of triptans allowed in a 30-day period so I'll be dealing with these on my own. I have found some minor relief with 5 hour energy shots and heavy breathing but that seems to only delay the full attack. 

[Racer1_NC]

22 hours ago, CaptChaos said:

UPDATE: My PCP was not able to prescribe me oxygen and went as far as saying that no PCP at the clinic had heard of prescribing O2 for this. He said that O2 therapy is a specialty treatment for CH and needs to come from the Neuro. 

He's either lying or incompetent. 

[spiny]

Well, I am amazed that he would say that. Sort of admitting that no one there knows anything about CH. 

Did you get a Neuro appointment out of it? 

Is the Pred a five day dose pack or a longer term taper?

[Pebblesthecorgi]

Intellectually lazy is as kind as anyone could be when referring to that lazy sh*t PCP.  There are many resources out there which physicians refer to to direct treatment.  In the USA the most commonly used reference for vetted quick answers is Up-To-Date.  That source clearly identifies high flow oxygen for the treatment of cluster headache attacks.  It’s not a plus/minus equivocal suggestion, it is a strong endorsement based on evidence. Also there is some confusion between PCP’s and Specialists.  Often times (at least in the USA) the intent of a referral to a specialist is to get a proper diagnosis and the PCP does the actual plan implementation.  In reality because they can charge or the PCP is not able specialists will manage things.

 

You need to either great a new PCP or lodge a complaint regarding the lack of responsiveness.  The other possibility is that you are in a managed care environment and the Doc is an employee who is chastised every time money is spent and they automatically reject anything with potential cost.

 

Most of us cluster heads end up managing our own condition anyway and just need a doctor for a few scripts.  Imitrex is not sustainable, oxygen is...shrooms often are miraculous.

 

Hang in there

[jon019]

...yeah....what Pebbles' said...appears something else is going on here....the scripts for Imitrex, prednisone and verapamil all indicative that "standard of care" was referenced as you don't just pull those out of thin air if ya don't know CH...

...a headache specialist now your best bet from the med profession...but these folks are booked for months so BE SURE to indicate you are a cluster headache patient  currently IN CYCLE...if they know their stuff and are truly patient advocates they will work you in quickly...also be ADAMANTLY willing to fill in for any cancelled appointments. You shouldn't have to convey desperation....but it won't hurt..........

[CHfather]

It's not like we didn't expect this would happen, but it's infuriating and disgusting and disgraceful, and the words I have for your PCP and the practice are a lot stronger than that.  You said in a previous post that the neuro was going to tell the PCP that he (the neuro) recommended high-flow oxygen for you.  That had no effect, either??? 

3 hours ago, jon019 said:

the scripts for Imitrex, prednisone and verapamil all indicative that "standard of care" was referenced as you don't just pull those out of thin air if ya don't know CH...

jon' -- I'm thinking these are standard migraine prescriptions, no???  Just sayin' they probably didn't actually have to put in any real effort, since they've probably prescribed this stuff many times for people with "headaches."  The heartless bastards.  

Cap', Please consider welding O2. This post is a little chaotic, but it will get you started with understanding the basics.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Edited June 17, 2020 by CHfather