Leaderboard

Annette Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!

you are in a dire place, i think most of us have been at. that's why it's important to have an arsenal of remedies ready. like a boyscout you have to always be prepared. Your List should include: oxygen oxygen!! oxygen!!! vitamin d3 protocol+cofactors Tryptamines (LSD, MM, Seeds) IMHO both verapamil and triptans like zomig are a double edge sword. they take the edge off and mask the cluster but i swear to god those medications made my condition worse. i can not prove it but i am almost certain that that is the case. i have read numerous reports from sufferers over the years that state the same. bonus as time goes on you will have to up the verapamil, that's how the story goes. and at some point you start feeling the side effects. i felt like a zombie, with severy constipation and waterpooling in my legs, mind you i am a very active and athletic person. it was hell and not worth it. oxygen and magic mushrooms/lsd saved my life and my sanity. i am forever grateful to this board it's initiator and members. the drugs doctos perscribe are all offlabel use...make what you will of that. good luck!

....DON'T...doesn't work....all you end up with is a droopy face with the same pain...or a droopy face, with the pain on the OTHER side. if you find a doc who is willing to do it...it's the WRONG doc...RUN!

Hey Annette. They might just do that - provide O2 for COPD. However, That will be a concentrator, which will not deliver the pure O2 that you need for CH or even enough of a flow to help.. You need 100% pure O2 from a non-rebreather mask with a high flow regulator and tank - not a concentrator with a cannula. Please take a moment and read the blue banner above for 'New Users' if you have not already done so. It will give you a lot of basic information. A lot of us have had to fight for O2, the best abortive out there. It is nuts. Medicare just approved it for CH so the oldies can get it now. Many of us, myself included, use a welding set-up for our O2. It is the same as medical, but comes in a heavy tank of steel as opposed to the medical aluminum tanks. So, it is heavier to haul around. It requires no script and is cheaper than medical. A lot of CHers on here will say that you are better off to find something else for preventing hits than triptans. Over time they can be bad for you, so many will search for another abortive to replace it. That may be just O2 or it may be the D3 Vitamin Regimen, or busting. You might ask your doctor for a short course of Prednisone to get a break from the hits. Long term use is bad for your hips and shoulders, but a short good break can be a huge help. Also, it's another drug that should not be taken for a long time due to damage to you body. It seems that with meds, we walk a knife edge over help on one side and harm on the other. We have to learn so much on our own it is nuts. But our health requires it. Stay with us and perhaps we can help steer you to a pain free future.

This is very good advice, but if your doctor is an idiot (I think you have a new one, who might or might not be), it's important for you to know that the standard prednisone "dose pack" won't really work well. Here is the recommendation from one primary CH resource: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."

That might help. Some people need still more -- 960 mg or more. Is the verapamil instant release or extended? Most people seem to get better results with instant than with extended. Yes, get on the D3 regimen ASAP -- it's a more effective preventive than verap with a lot fewer potential side effects. There is practically no insurance that won't cover O2, but sometimes you do have to fight for it. I am quoting a passage here from a post by jon019: "....OXYGEN!!!....life changer...saved my sanity, perhaps my life. over the yrs sometimes insurance covered it, sometimes not (always appeal any denial, for O2 have your doc write a letter of medical necessity). note that Medicare has just now approved its use for CH, and many insurers follow their lead. when not covered, i did self pay. either way, my out of pocket was about the same. cheap by any measure, especially compared to triptans like Imitrex, no side effects, fast when flow, mask and technique dialed in, more portable than the stereotype would indicate. don't let anybody dump a concentrator on you.......many a clusterhead bypasses all this nonsense and uses welding O2, "same stuff out of the same spigot"...cheaper yet, widely available....no insurance droids to get in the way. just don't tell 'em you gonna breathe it..." As we have discussed and jon' mentions, welding O2 is a relatively low-cost option. Easy to get, set up, and use. I don't want to oppress you about things you don't have, but getting oxygen is worth almost any sacrifice you have to make. I hope you looked at the link I gave you up above, particularly the part of that file headed "Treatments without oxygen..." None of those are as effective as O2 would be or the D3 regimen can be, but some might help you.

Yes, Random shadows and hits too. Yes, they are scary as anything I have encountered. But, I look at the barometric pressure and usually see that it has dropped significantly and that caused the shadow or hit. I up my D if I get more than an occasional one in a short time frame. Or if it gets too steady, I know that stronger measures are needed.