Hi guys, My name is Avni and my husband, Savit has recently been diagnosed with cluster headaches. His current attack started 8 weeks ago. He was on a 2 year remission before that. Your website was wonderful in providing me all the information related to oxygen therapy. His neurologist has prescribed oxygen BUT I am not finding any company that is willing to supply the M tanks in the Philadelphia area. We have a couple of E tanks but he uses them up within a couple of days and the company is not willing to deliver more E tanks. I am interested in getting an M tank since that should last him much longer. I have gone through a long list of medical suppliers and no one is willing to supply M tanks. Is there anyone in the Philadelphia/New Jersey Area who has had success with renting M tanks? If so, names and telephone numbers will be greatly appreciated!
Thank you all.

Avni

Thank you Brian. It is great to be a part of this community. I will look in to your suggestion.

At this point I am desperate for solutions. This has been our first major experience with his cluster headaches. The ones before were minor in comparison. Lasted for a couple of weeks and went away either without medication (since for a long time we thought he had migraines) or a pred taper.

The current one started on the first of August and it is a demon. The headaches were just awful for 4 weeks, real monsters, then they reduced in intensity for 2 weeks and now they are back in full form. Oxygen seems to help the most. He is on Verapamil 160mg. He was on a pred taper too but that did not work. Tried indomethacin and that seems to have made it worse. Oxygen seems to help the most but there are no suppliers with M tanks or I am going about it the wrong away (I am calling a list of medical suppliers approved by my insurance).
I can't even begin to understand the pain he is going through, but I want to help him get the respite he desperately needs.
Thank you for your response.
Wishing you many PF days.
Avni

Avni,

In my experience, even the O2 suppliers don't have a clue what to do with a CH patient. The don't understand that you need a non-rebreather mask (half don't even know *what* that is) and none of them believe that you need high flow.  It took a lot of arguing on my part, but eventually they agreed to deliver weekly and keep me well-stocked with the E tanks.  You will have a hard time finding bigger tanks unless you want to start buying welder's O2 and adapt the regulator to it. It's not a big deal, and even if you pay for it, it's usually cheaper than a real supplier. The only problem then is delivery, which some places will do.  Welders need the same purity that we do, so it is safe.  Check out the O2 link on the left.

-Shawn

Thank you guys for your response! I finally found a supplier right after I posted my cry for help here! The person on the other line knew all about cluster headaches and H tanks and humidifiers. At that point I was ready to kiss her (in fact I ecstatically yelled " I love you" when she confirmed delivery of the H tank this afternoon
Their information is:
Miller Medical and Respiratory   
Durable Medical Equipment   
401 EAST HUNTING PARK AVENUE
PHILADELPHIA, PA 19124
(215) 739-2238

Thank you guys for the vote of support and the information on oxygen tanks. It is good to know that we have alternative resources in Philly for getting oxygen.
Cheers
Avni

Glad to meet a fellow Philadelphian.  Looks like you got it situated.  I get my o2 through a welding supply co.  If you ever find yourself going that route, just let me know. 

Also....we are trying to get a bunch of us from this area together for a meet and greet and some fun while we are at it.  Let me know if you are interested

We would definitely be up for a meet in Philly. Let me know the date and time and we will make it.
H tank delivered Friday afternoon (yeaaay!).
Thank you guys for your help.
Wish you all many PF days.
Avni

we're ready for ya Brew.  Quick 2 victories and a one day stop over in Milwaukee before heading to the NLCS