FunTimes

Jimmy, I get my oxygen by paying out of pocket, it is actually cheaper for me this way. I am chronic so I have tanks delivered all year round. Busting has not cured me in any way but does infact cut my attacks down in frequency and the pain is much less that pre busting. I am also one who will down a 5hr energy drink to help the oxygen kick in faster. It does not seem to keep me up at night. This can be different for everyone, the only way to know is to give it a try. Melatonin and Benadryl have helped me get a full night sleep also. All of the things I hade done over the years have faded in effectiveness or stopped all together. I have switched it up on busting substances, tweaked what and how I take things and kind of go with the flow. It is understandable that people tend to stop visiting the site when in remission and only pop in when in cycle, I wish I could be pain free and never visit this place again ( No offence) . As you know we are all here to help each other.. Welcome back

Jim Thorpe.. His grave site/memorial is not to far from me. been to it a few times. Small world! It is awesome that you keep in touch with several members on this and other cluster support sites, you have and continue to help so many people in so may facets of this game we all play. Keep up the great work you do and know that you are appreciated by many! Have not seen Spiny on here in a bit.. Hope all is well with her

This place has saved a whole bunch of life! We are all in it together.

Not from that area but did visit a few times. I have used Ron Andrews Medical.https://www.ronandrewsmedical.com/ they delivered to a hotel and picked up for me with a copy of my script email to them. No issues at all and I think it was something like 25 bucks a tank. I would call your PCP and ask them to write you a script for the oxygen, it does not need to be a neuro. It may be faster and they can send that over to get your tanks faster. Make calls and demand it, don't take no for an answer and you can get it done today if your motivated enough.

Dr Young down at Jefferson has been good for me. He is also a supporter of this site and attends the conferences. Him and his team will work with you well if you tell them your a member here. https://www.jeffersonhealth.org/find-a-doctor/y/young-william-b

The regulator will depend on your tanks Tank Compatibility: E-tanks generally use a CGA-870 yoke connection, allowing for easy, tool-free connection. M-size tanks often use a CGA-540 threaded connection, although smaller "M" series (like M6, M9) may use CGA-870 You can find them online at sites like Amazon or ebay. You will want a flow rate that runs up to 25LPM

Took the D tanks but the vape pen bailed me out more often than the tanks. It is a pain to lug the tanks around but it was not that big of an issue getting them past the security at the port.

I have taken a few cruises in the past pre covid and was always able to have my oxygen tanks delivered to the rom by a third party company the cruise line works with. This time I am leaving out of Cape Canaveral and the 3rd party company does not offer oxygen tanks. The cruise line said I can bring my own. That is nice of them and all but you can not fly oxygen tanks.. Road trip! Not a show stopper this time but what if I wanted to cruise out of a location that I can not drive to? Anyone else have this issue? Is it just a location thing and other areas still offer Tanks from different ports? Just curious. They also only allow D size tanks and you need to carry them on yourself, I gotta think of all of my comebacks to the comments im gonna be getting. I can be a firefighter, balloon animal maker, scuba diver, you drink bottled water I breath canned air.

This is a great start! now just like CHfather said, work on getting bigger tanks. M60 and M tanks are good home use tanks and E is the travel size for me. Take care of your delivery driver when you can, bottle of water/cup of coffee. Maybe a snack from time to time? Whatever it takes to have them pulling for you. I have had drivers call me before they leave the building saying they did not have my tank size and adjusted from one M60 tank to 3 e size tanks. Pay your bill on time every time and you should be good to go. Cluster mask will also make a big difference in your abort experience. After the O2 is all in place start stocking up on a few other abort techniques. Mix and match them and your on your way to a happy cluster life!

@Mordecai Give this place a try https://adapthealth.com/locations/ see if you can get to a guy named Ed Pucket. He is located in Northern Maryland and may be able to get you what you need. Best of luck to ya!

I have come across the same issues in the past. I am not sure what country you are in, Here in the US I keep on calling and climbing the latter going from one level a=of management to the next until I find someone who understands that money is money and it does not matter who is paying as long as they are getting paid for the services they are trying to provide. I also pay out of pocket and it is actually cheaper for me. I pay a monthly fee for the home delivery service and I pay that regardless if I get oxygen. That covers 4 M60 tanks. I can order more and pay a different rate depending on the size tank I order above the 4 M60's. Smaller Mom and Pop type shops I find get the same tanks from the larger distributers and usually only get one order a week so they don't like Clusterheads cleaning them out every week so go direct to the larger supply house and deal with them direct. Be extra nice to the delivery person bringing the tanks and you will be able to get extra tanks from them on occasion if they have them on the truck. Stock up on as many extra tanks as you can store for when something goes sideways. Don't accept the "we don't serve cluster headache people" What do they care what it is used for, they are selling it and we are paying for it. The Market down the street does not care how much milk you buy why would the oxygen people care how much O2 your getting as long as you pay the price they are asking. This makes me nuts how they think they can just say no because we use more oxygen at times than others. Your other option would be to get welding oxygen and use that, but do not tell that supplier you will be breathing it. We can help you get set up with that equipment if you do decide to give it a try.

I have done a DHE treatment but it was an infusion. # days long and about 6 hours each day. I feel that it did help the first time butt he second time I did it I don't think it was an effective.

I use the 5hr smaller size to help hold the cluster off until I can get to my oxygen tanks. it will sometimes abort a very mild one if I drink it soon enough in the onset of the cluster. Oxygen is the cleanest and best option for aborting a cluster as long as you get the o2 kit and a regulator that will allow you to maximize your intake.

I wish I had never started the Verapamil to begin with. I was put on it and was up to 1080 mg a day. Side effects sucked for me, not being able to feel from my knees down and swollen feet all the time. I took myself down to 120 twice a day without any change in my cluster frequency or pain level. I think the doctor I had at the time just had no clue and kept upping the dose. I finally was able to come off the verapamil after 10 years due to a newfound treatment. The D3 protocol is a cleaner option and I feel that I have benefited from that a little more that the Verapamil. @Crispo follow CHfather's post and links he will not disappoint!

I don't think you need to wait for the results before starting the Vit D. You can get started now and adjust when you find out what your levels are. I would be willing to put money on that you have low D levels. What do you use for aborting your attacks? Oxygen available?

Nice find!

Agreeing with everything stated above, I would still consult your neurologist or a headache specialist in your area and maybe get scanned to rule out any other issues going on in your head. If the scan shows a woodpecker holding a drill and pushing on the inside of your eye you pass the test and are now an official member of the Clusterbuster community. Read up on this site and ask all the questions you may have and we all will help you get into a manageable place to deal with this. It sucks but you are in a great place.

It was again an awesome time and great to se it growing over the few short years I have attended. Many more Doctors Authors and Vendors. Most of all a bunch of fun happy clusterheads from literally all over the world. Hope you all can make it next year.. Bring a friend and leave with 100 new ones.

See you all in a few days. Should be another good time with the rest of the headbangers from all over the world.

I keep them in the car, the office and any other place I might be going to. I even take them on vacation with me. I figure they do enough work for me they deserve a little vacation too.

Poke around, read up and ask questions. You will be amazed at how many people are willing to help and share experiences. Key in on Oxygen and Vitamin D, they are the most recommended treatments to get started with.

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that. Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's.

https://youtu.be/A8bA8sUG2Ig Just a little YouTube link to share with others about a few doctors discussing how they go about treating cluster patients. Not sure it was supposed to be shared but it may help someone or give another option that was not tried yet.

I think we all just learn to deal with it and take it as it comes. Not like we can really do much to avoid a hit, they come when they want to and hit as hard as they want to. Some have had success with busting other not so much. Sometimes it brings the pain down, makes it go away for a period of time or does nothing at all. No rhyme or reason that we know of. Just when you think you have it tamed things change and we blame it on the weather, moon or life event. I truly believe that we were all just picked to have clusters because we can deal with it like no others can. We are all the lucky ones that can honestly say they have a high threshold for pain and back it up by the countless hours we spend every week, month or year banging out head into our hands, walls floors or anything else that looks fun to take your mind off the devil inside you trying to escape. It is what it is but we are all lucky to have this site to get it out in the open with others that understand it. Just do your best and keep moving forward in hopes that someday we will have a cure for this infliction.