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ClusterBusters
Jeler

Newbie here from Iowa

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Try this number up here they don’t list numbers to call the local office here isn’t listed and they don’t give it out. This number is a local NJ number but goes to the national call center. They often won’t give out a price until they have a copy of the script. +1 (732) 905-1400

 

let ya know how it goes. My doc had an Apria form he filled out faxed in and a week later oxygen just showed up. They had M tanks and they have told me it’s their policy to give M tanks to cluster patients. Usually 2-3. You need another script to get E tanks for the car. My drivers just give them to me. Apria doesn’t count the tanks according to the guys

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...I know it's not funny but I got a wry smile out of the 3 D tanks story.....my first O2 tank was a C or D...given to me to 'try out" (without a script!) by a kindly front desk person at Lincare......didn't even last one hit...but ALMOST...and I was HOOKED! Sanity...perhaps life, saved...………..

...for YEARS I kept asking for M-60's...got the same "we don't carry"...then one day I asked (as ALWAYS) and they said: "SURE, how many?...no rhyme or reason given and I didn't care...but I HAVE to think that eventually the requests nationwide got to corporate... and overrode the probable reluctance of local branches to stock and keep track of (which they're lousy at) even MORE inventory...…...so if they don't come through...KEEP ASKING...you might be helping yourself AND fellow clusterheads...

...for me it was 1-2 M-60's at home, 4 E's in the closet, one E in the car and/or office, and a bag o' energydrinks….life got pretty good in between the hits (which I KNEW I had the tools to deal with)…...

...btw....don't buy your regulator(s) at O2 shop prices...I got 3 of 'em off the internet (name brands, 15-25+ LPM for less than $100 total)...

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When I was first starting out on my oxygen adventure I found a few smaller shops that sell chair lifts, walkers and things like that for home care. They would sell me e tanks for 15 to 20 bucks each and then start screwing with me when I was going back in every other day for a refill, they only keep maybe 10 tanks in the shop at a time. Well one of the places said they were going to up my price to 50 a tank because of the added paperwork I was making them do so I kept one of the 3 or 4 tanks from them and another place just stopped answering my calls so I kept all 4 of the tanks he sold me. When I landed the company I now have I just filtered the empty tanks from the other places through. That is how I started building my collection. Like jon says they are not very good at keeping track of inventory so get to know your delivery person and take a look in the truck when they come and maybe you will see a larger tanks and be able to get it from them. Tip them, bake them a cake do whatever it is you need to do but get them on your side and you will be able to stock up on all the tanks you need. 

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Wow, you’re a baker too?  Jk, one of my delivery guys would never take a tip.  This guy showed up with waiters and a fishing pole And said I’m getting you out of the house!  We’ve been friends ever since.  He would always make sure i has what I needed. He just had a total knee and another guy took over my deliveries. He is super nice as well. I had just got Apria to give me 4 tanks a delivery. The new guy was supper nice too. He left partial tanks for me to use when he brought the new tanks (instead of just swapping them all out). So I started to amass extra tanks. So I started tipping him $10 when he came. He carries a tank upstairs to my bed room and all. If I’m up to it I bring the empties to the front porch to say thank you as well. Then he stopped by when I didn’t order but he was in the neighborhood and bring me extra tanks. I try and have a ten put aside Incase he shows up. Now my insurance co has a contract w Apria. My EOB always says they paid them nothing the some gibberish...per contract...  since the oxygen isn’t costing me a thing I figure $40 a month isn’t bad in tips for all the tanks I have. A small tip goes a long way. Skip baking give em a ten. Unless they are pot brownies and your driver is into that. One driver asked me if I knew about psychedelics and Ch too. Would have been an eye opener if I hadn’t known. 

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20 hours ago, Jeler said:

Thanks again everyone for the help. I've done emgality search here all ready. Just looking for more 1st hand experience. I put the pressure on my 02 supplier this morning! They only supply O2 to 2 other people with CH in my area. (their excuse for not having larger tanks)

Moxiegirl, as always it's nice to hear from you.

This webpage will help you see the difference's in O2 tanks, better than I can explain it.

https://www.tri-medinc.com/page12.htm

Hope all is going well! From one Iowan to another.

Jeff

Wow! More expensive than I thought they would be, but that's just me being naive and not thinking it through. Of course they are going to cost that much. That photo did make a lot of sense of the different sizes though. Thanks.

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Starting to think it doesn't matter what number I call for Apria, they all go into customer service (which is handled by people who can not understand how to speak English or understand it)

They all told me I need to have a prescription faxed in by my Doctor. They would not or could not understand a damn thing I asked them. Mainly why some branches serve patients with CH and others do not.  I am frustrated as hell right now, quite irritable after a miserable night, sorry.

 

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Give this a try, I don't know if you are close to any locations but maybe they can help. This is the parent company of the supplier I use. 

Sorry you are having so many issues. I wish I could help more. 

https://www.adapthealth.com/

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Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

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Jeff I have 5 tanks from my supplier Jackson medical I think they have an distribution center in Washington. I'll look at the tanks when I get home. They've been great for me. I also keep a couple of big welding tanks around that I've picked up for next to nothing. 

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They are a small company that still answers their own phones.

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FWIW, I emailed a person at the Iowa state government agency that regulates oxygen suppliers, just to find out what rules or policies they might have about adequately supplying people with CH.  Didn't give any information at all about your situation, of course.  Will let you know what I hear back.  Not optimistic, of course, but you never know. There's a list of phone numbers at their website, too: https://pharmacy.iowa.gov/contact-us/board-office-staff

Unless one of your leads pans out quickly, I would seriously consider getting welding O2 to tide you over.  An 80 cu ft tank will give you about 3.5 times as much O2 as an E tank.  You'll need a regulator, and as has been noted, welding regulators bought at a welding supply place are typically expensive and typically don't come with a barbed adapter for mask tubing.  If there's a Harbor Freight store near you, they will likely have one, and Walmart also typically carries them, or will ship them with two-day delivery.  Amazon has a bunch, and if you're a Prime member you can also have two-day delivery (or pay to get it if you don't).  

Edited by CHfather
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Chf definitely let us know how your conversation with the iowegian pharmacist goes.

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Corporate Apria and the lovely delivery people must come from different planets. I asked for some extra and got a total of 4 M and 6 E tanks. It’s all about the person in the truck.

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6 hours ago, Freud said:

Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

Florida self-pay costs me $80/month for everything...tanks and O2 on request. I did instruct the neuro  on how to write the script.

 

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On 7/22/2019 at 8:07 PM, Jeler said:

Freud

That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know.

Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket)  Tomorrow I will give the corporate office a call and explain to them my situation.

Thanks for the help and suggestions.

Jeff

Corporate Apria are bozos who must be betting on who  takes the longest to answer. Of course they service CH patients. It must say “for Cluster Headaches” on the script. They also carry max regulators at 15lpm. I bought my own 25lpm regulators and have 2 optimasks. 1 goes everywhere I go. I got hit in March, in the luxurious MSKCC waiting room. They brought me a 25lpd e-tank with a taped up non-rebreather, but my optimask is so much better. If the script calls for higher than 15lpm the office refuses delivery. F*Heads.

IL

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I have Apria and its in the system @25lmp and I have no problem...

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...my script said 8 LPM...still said that when I bought MY OWN regulator that went to 25.....

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Hey guys it's being handled.  Couple of pms and hopefully all will be good. I'm still anxious to hear if chf gets a reply from the state. I know relief cant come fast enough when we are getting hammered. When I am I comb this place endlessly waiting for the op to reply or someone to find the "c" word. Your welcome BOF I didn't say it.

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Curly fries?  Wait that’s two words?

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Jeler, what is your current O2 status?  (And your overall status?)

I had a pretty nice series of exchanges with that person at the Iowa regulatory board.  S/he seemed authentically concerned, and made whatever suggestions s/he could come up with from staff.  (The name of the person I corresponded with could be a man's or a woman's, so I don't know.)  The suggestions aren't very helpful -- try a big supplier like Airgas because they are also a wholesaler and would have larger tanks on hand; ask the prescribing doctor to specify either large tanks or a large number of small tanks; consider a concentrator.   If you've done all that and you want another step, I had the feeling that maybe that person might try to exert some influence directly with a supplier.  Just a small feeling I had.  Of course, if your problem is solved and you don't want to think about it any more, that's fine.

I guess I would say that my interaction with that person from the board was a lot better than I had expected it to be. 

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CHFather

Current 02 status is much better now that I've switched my med supplier. Previously was on E-tanks and during bad attacks could empty 1 tank a day.  My new supplier is

now delivering M60's. Great people to work with and thanks to Rod H here with telling me about this supplier. Great people with personality +, unlike the other supplier.

 

Thanks so much for taking the time to call the Iowa regulatory board, interesting discovery. I did call up AirGas last week and asked them about who they delivered the larger

to. Glad to hear your experience with the board was beneficial!

4 days ago I started on the Vit. D regimen, I expect it'll be a few days before I can benefit from it. I'm also going to have my blood tested next week.

Lately I've been getting hit semi hard around midnight, 2AM, 4AM and again at 6AM.  Using O2 for 15 minutes puts a stop to all of them.

Jeff

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Very glad to hear this, Jeff.  Do you mind saying the name of the supplier?

I'm going to assume that you know that melatonin at night helps many with the nighttime attacks (melatonin levels are quite low in people with CH).  Starting at maybe 9mg.  

Hopefully, you'll get your aborts down considerably below 15 minutes over time.  Some research shows that just in general aborts tend to be slower in the beginning.  You'll get a breathing rhythm that works best for you.  Recommended is big inhale, hold a couple of seconds, big exhale.  It has been written that for some reason looking down toward your feet can speed an abort.  And then there's equipment: the "ClusterO2 Kit" mask makes a nice improvement for many, and a higher-lpm regulator will also help if it allows you to use the most effective breathing technique without waiting for the bag to refill.  If you're up for it, strong coffee or an energy shot as you start the O2 almost always speeds the abort.

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CHfather

My present supplier is Jackson Medical. So far so good. Great customer service.

I have tried the melatonin at 10mg per night. Didn't notice any decrease in activity at night however.

Vast majority of my aborts are down below 15 minutes, providing I catch them in time. However during my night/early morning attacks by thee time I've been woken up with pain it does take a bit longer. O2 definitely has helped. "Looking at your feet?" My eyes are normally closed but I'll take your word for it. Interesting!  I do have the ClusterO2Kit, not really impressed with it, but it does the job. I quit using the face mask because of increased pressure against the bridge of my nose which is very painful, so now I just use the mouth piece. Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night. Right now I need some sleep.

Thank you

Jeff

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