How to get oxygen in Philly ???

[J1011112]

I’m 28yrs old and diagnosed with episodic cluster headaches. I’ve been battling the beast since I was 16 years old. Just recently I was in remission for almost a year and a half then about a week I got 1 small cluster and I knew something was up. The next day 3am in the morning I was on my basement floor with tears comming down my face helpless with no relief until I eventually passed out. I’m prescribed 1800mg of gabapentin a day 180mg of verapamil a day and have 100mg sumatriptan tablets. In the past I was able to get oxygen which was a life saver but the place that supplied closed. My nuro is looking all over and can’t find a place who will supply a “ClusterHead” with oxygen. Any info on where to get oxygen in Philly would be greatly appreciated.

[Amun Ren]

maybe try a welding supply company. I have seen quite a few posts recommending this for people who have trouble getting it medically

has your neurologist given you a prescription for oxygen yet? the 'cluster head' excuse from the neurologist sounds a bit disingenuous. an oxygen company usually doesnt care why you need oxygen if you have a prescription. Once i had my prescription i was able to find a medical oxygen supplier on my own. 

[CHfather]

This isn't Jilly from Philly, is it (a member from long ago)?

That's a horrible prescription you got. Gabapentin might help, but it's not a first-line prescription and most people feel crummy from taking it (and 1800mg is a lot).  Sumatriptan pills basically don't help, and the verapamil is too low, as BOF said. Prednisone taper would have made sense to cut the pain for a while.

And your doctor has not been looking very hard for a medical O2 provider -- there are plenty of them in Philly and as auto' said, they have to supply you if you have a prescription.  As auto' said, google [medical oxygen Philadelphia] and start calling. Welding O2 is a possibility, but you shouldn't need it.  There must be some suppliers that are familiar with CH, but when you call, tell them what you need -- tanks/cylinders, not a "concentrator"; a big tank ("M" or "H" tank) for home and at least one small tank (E tank) for portability; a regulator that goes up to at least 15 liters per minute (you need one for each type of tank because the regulators are different for big tanks and small tanks); and a non-rebreather mask. The prescription should have specified a flow rate for the regulator(s) and the non-rebreather mask, but I don't have enough confidence in this doctor to believe s/he did it right.

You should start the D3 regimen right away -- and either find a better doctor or educate the one you have.  Quite a bit of info here, including a link to the D3 regimen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[J1011112]

They was actually able to find It today and I have it being delivered tommorow. I stopped my meds for awhile when I wasn’t getting any headaches for a couple months thinking I was finally in the clear, wasn’t a smart idea. For the most part the gabapentin does help but comes with a little bit of drowsiness. If I’m wake and I start to get a cluster and I feel it comming the sumatriptan along with a red bull takes it away pretty fast. Today I was prescribed Emgality 3 100mg injections + my oxygen is comming tommorow, I’m optimistic the emgality will work but we’ll see I’ve seen it takes 3-7 days to kick in fully. I appreciate everyone’s advice!!!

[J1011112]

Also no I’m not Jill? I’m a new user and came across clusterbusters yesterday and think it’s a great idea to get To get the word out there on cluster headaches, everyone claims they know what we’re going through but nobody knows until you have one 

[FunTimes]

Welcome J

I am also from Philly area, just outside in Delco actually. I use Montgomery Medical for my 02 and they have worked ok for me so far. A few glitches but it all works out in the end. Feel free to reach out with any questions you may have. You will find much more information on this site then in any doctors office. 

[J1011112]

Thank you!! And back in 2016 that’s where I first got my oxygen from and thankfully I haven’t needed it since then. But like I said a cycle just recently started but my nuerologist actually found that’s where I got it from before and they made the delivery today. Im waiting on a call back to see if they can call me in sumatriptan injections since I read here that they work better. Thanks again for responding!

[Dan philly]

I live in philly and have chronic cluster headaches. Company I use is called lincare they used to be called American home patient call lincare and they will have you fax your prescription over and then order what you need and they deliver to your home.