FunTimes

Try a 5hr drink on the way to the o2 or even if you find the O2 slow to react and that will sometimes be just what you need to abort that attack.

The E size tanks fit nice in a 2 litter soda bottle carrier the pepsi and coke guys use in the super market, they will hold 8 tanks and keep them from falling over when you store them. When your o2 delivery guy comes to drop off your tanks you can take the empties to him in that carrier and ask him if he can just refill the rack for you and you will keep it at your back door for him to make it easier for the next time he comes to deliver. I have done this a few times with only 6 or 7 bottles in it and he fills mine back up with 8 tanks. I have a few extra soda crates for the next time he comes to just trade them out with him. I have also had them not bring a larger M tanks and he gave me a few extra E tanks to hold me over for my next delivery.

I know that some of the prescriptions are manufactured in a nasal spray form and work much better and faster then in pill form and injections working the fastest but I have never heard of a over the counter drug in any form abort a cluster. What is the brand yo are using? Maybe someone else will have more information for you.

I would take the os script and fill that first, you can then get your own regulator from amazon to fit the tanks you get, 2 is better then nothing. I would then start working on the o2 supplier, I was given 4 e tanks when I was first set up with my O2 and after being very creative with the delivery driver and calling into the company for refills I am now up over 12 E tanks, 2 m60 tanks and 2 M tanks. The cost stays the same for monthly refills and it takes a little time to build up your stash but it is worth a try. Drivers dont care what you have and most of the time keep a few extra tanks on the truck. the youngsters on the other end of the phone taking orders dont care how many tanks you have and only type into the system what you order and most companys do not have the best inventory tracking software so they do not remember what you have. It may not be the most ethical thing to do but then again limiting you to only 2 tanks of something like oxygen is not the most ethical thing they can do either.

Brian- I smoke and have chronic clusters. I do not necessarily pace the room but I do not lay down. I use oxygen to abort the attacks so I sit in a recliner and kind of rock back and forth and squirm in the chair. most times I am exhausted after everything ends and I kind of relax a little if it is a day attack, at night I go back to sleep. If it feels like it is going to be a good one I down a 5hr energy drink as I am getting my O2 going. I hope you get this all sorted out and I am sure this site will help you with any questions you may have.

Like Jon said, I have tried just about every technique mentioned on this site and every attack for me is a little different. Sometimes just relax and breath does the trick and other times hyperventilating and banging the arm of the chair helps. It is something you will have to mess around with and find what works for you . And I also always have a 5hr energy drink in my pocket to help kill off the pain no matter what time of day, night or morning it is.

I have had both the feeling of being cold and also sweating on different attacks. It is odd and I should keep track of that to see if it is a pattern.

Agreeing with CHfather 100%. All of the things he mentioned have helped me out a little, add them all together and you have a manageable day. I take Verapamil at a low dose of 160 twice a day now, the vitamin D3, benadryl at 25mg 3 times a day drink lots of water and down a 5hr drink on my way to the O2 tank and take 20mg of melatonin before I go to bed. Sometimes sleeping in a recliner. I went from about 10 hits a day down to 1 or 2 a day. I then added busting cycle every 5 days and am now down to 1 or 2 hits a week. Other things people try are drinking ice cold drink with a straw pointed at the roof of your mouth on the cluster side, chewing fresh ginger and putting your feed in very hot water. You may of had a way that worked on your last cycle and need to tweak it a little. with all the mentioned things on this site you can hopefully mix up a system that works best for you and when you find that please share your story, it may help someone else.

When I was first getting my O2 setup they did not supply me with any of the things I needed. I ordered 2 of the mask from the link CHfather gave you and ordered my regulators from Amazon. Getting the oxygen if the hardest part of it so you will soon have a med free safty zone to retreat to and im sure you will be happy with the results. Here are some links to regulators E tank: https://www.amazon.com/Regulator-0-25-Adult-Healthline-Trading/dp/B079J5X5FR/ref=sr_1_1_a_it?ie=UTF8&qid=1542801580&sr=8-1-spons&keywords=oxygen+regulator&psc=1 You want to make sure you get one with the barb on it so you can hook your tubing to it. M tank: https://www.amazon.com/dp/B00BXRBH9M/ref=sspa_dk_detail_3?psc=1 I use a adjustable wrench for my M tank and they will most likely give you the keys for the smaller E tanks. Good luck and enjoy!

In addition to the Melatonin I also take Benadryl at 25mg 3 times a day when the seasons are changing and that also helps keep my clusters down a little.

I take 20 mg of Melatonin every night sometimes adding a 25mg of Benadryl depending on the season. I still get hit sometimes areoung 3am and take a 5hr energy shot without it keeping me up at all. I know everyone is different but if you are getting up every 2 hours anyway it might not be a bad thing to try. Give it a try on a weekend or some time you have nothing planned for the following day just in case you were to stay up a few hours after drinking one. The Melatonin and Benadryl were added to the D3 regimen I take and did help with the night hits. I also slept in a recliner for a week or so to keep my head elevated a little and that also helped.

I would like CHfather said do whatever it take to get that prescription for high flow oxygen. Regardless if you have Cluster headaches or not it sounded like that did the trick in the ER. If you can abort a few headaches a day with the O2 and get off the other meds you may decrease some of the rebound headaches caused by the other medications you are now taking.

I am chronic so yes I get them every day. I have just had a 9 day break with no clusters at all. that was my longest in over 5 years. But that fun has come to an end and am back to every day hits. I had 8 yesterday. They come and go with the weather, if you are chronic they come and dont go but fluctuate from not to bad to very bad. You now have a bunch of friends that will help you figure out how to fight this and not everything works for everyone but a lot of things help so you will need to string together a few things that help and build on that.

Tips on helping abort the cluster. First thing you will want to start working on today is getting a script from your doctor for high flow oxygen at 15-25lps with a non rebreather mask. things you can "do at home" are down a 5hr energy drink at the first sign of the pain. drink ice water with a straw pointed at the roof of your mouth on the cluster side to kind of freeze it out. put your feet in hot water, as hot as you can take it. down strong coffee, this is kind of like the 5hr energy drink thing. chew on fresh ginger. pushups, jumping jacks or some other kind of exercise sometimes helps. just a quick few things I hear of that have helped people in the past. I have tried just about all and sometimes they help and some times they do not. Every attack is different and you will need to try a few things for some attacks before something helps it. But the one thing that works best for me is the pure oxygen. between that and 5hr energy drinks I do not use triptans (Imitrex) but maybe once a month if things get real bad. Also look into getting Imitrex shots, they will abort in about 5 minutes. the pills take much longer. Take your time and read up on this site and a tun of help will come your way.

jebstuart When I started out on Verapamil it was a low dose and my doctor upped it slowly over a course of a few weeks. In general you will need about a week for it to get into your syste. I have read on this site and also experienced on my own the standard release works much better then the ER type. a high dose of about 800-1000mg a day can be taken by someone with clusters but no way you want to jump to that amount out of the gate. I would also look into getting oxygen to use as a abortive rather then the Imitrex. I currently grab a 5rh energy drink and my oxygen tank as soon as I feel the hit coming on. you can read all about that stuff on this site and ask questions and someone will have help for you. You will also want to read about vitamin D3 here that helps a lot of people manage.

Here is the link to the vitaminDWiki page. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people

I have not been hit that hard under treatment but I hear that it can happen. I have gotten little hits that can be helped with 5hr energy drink. as far as the D3 treatment goes, yes I still get hit with clusters in the upper Kip scale from time to time but not nearly as often as without taking it.

Drink lots of water and maybe add benadryl to the rest of your vitamin routine. I added the benadryl 3 times a day at 25mg each and that helped with that stuffy head feeling in the AM. 5hour energy drinks also help take that feeling away for me also.

Click this link for the D3 https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people

I just found this link about the conferrence. https://therooster.com/blog/crazy-story-medicine-worst-headaches-migraines-psychedelics

Dont give up that fast. If you can get the D3 at any level you will just need to take a few more pills. I was taking 10 of them at 5000 iu each. if you need to order a lower dose then that is what you will need to do. It will pay off in the long run.

You can order them off of Amazon.com I am not aware of any restrictions on them being sent to Japan

I also just returned from the conference. It was nice to see others like myself, I think it will take a few days to soak up all the information.

I just responded on one of your other posts. I am just a few towns over from you and think I can help you out. It took me a few months to get my oxygen delivered to my house but now I have a company that drops it off at my back door the day after I order it. I have been to a few doctors in the Delaware county and Philadelphia area and may be able to help you out with them as well. This all sucks but when I found this site everything seemed to just get a little better for me. Feel free to PM me and we can exchange numbers if you would like.

the D3 does help most, if not getting you pain free it will help cut down on the amount intensity of your attacks. I take a 5hr energy drink at the first sign of a attack and that sometimes aborts it on its own but most time I start using oxygen as soon as I can after. Do you use oxygen or have the correct setup for o2 to use instead of taking any meds? I am basically off all abortive medication at this point and only use oxygen for pain relief. Feel free to ask all the questions you have and get to know this site, it will help you out more then you know.