FunTimes

I was on Verapamil for about 10 years, got all the way up to 1080 a day and it sucks. Tapering myself down little at a time and I am now off all together. The higher dose did help with the clusters but like CHfather said above the vitamin D3 along with some other things has helped me get to the same place without the side effects. I did it on my own and told the doctor at each visit I went to what I was dong. He was not a fan but as long as I took it slow he said it should be fine. Doctors go to school for years learning things, I have only watched a few hundred hours of MASH, almost the same thing...

dhuddly I have never been tested for anything like this that I know of. Might be something to look into

Nice work guys.

Awesome to see ya back spiny. hope all is well with you and your wisdom is always needed around here.

Jimmy, I look at it as better me that anyone else in my family so I am kind of use to things they way they are now. I can not say that I have tried everything but I do stay up to date as best I can on this site and am not afraid to try anything. I have done several clinical trials to help the people that are much smarter that I am to figure out what may or may not work for future generations. I also try a lot of things that are more like myself on this site and have real life experience with what works for them. Things are much better now that I have a room full of tools to fight this and knowing that what works today may not work tomorrow I keep a little bit of everything on hand. I am glad your cycle has come to the end and hope that it stays away for a long time. Go enjoy the pain free time and hope you never need to visit this site again!

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!