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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.

....one bit to consider, if even logistically possible for you, is to p/u and return tanks yourself. the O2 shop i used thought it amusing but appreciated. one phone call and i would have all my tanks in a rack waiting for me on arrival...quick switch out and on my way. this would also allow me to pop my head in the back room and chat/thank the techs. they usually don't see their clients, and i have always believed a face to the name is a game changer...once was handed an m60 regulator, no charge, with "use as long as you need" ...i still have it........

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!

Thank you both! After talking with the manager and requesting a call the branch manager of AdaptHealth, I received a call yesterday from the manager of the local medical supply company I initially worked with to get my O2 tanks. She said she received the emails from the corporate managers giving me a hard time about insurance not covering it, yada, yada and said she does not care that I pay out of pocket with my HSA! She apologized for the corporate folks and said, “you put my # in your phone and deal with me only!” I was so frigging relieved and joyous in that moment! I now have two E tanks that I can keep swapping out and will eventually get a travel tank and purchase the better mask from clusterheadaches.com Thanks again!

WEBINAR Pain, Not Personality: Why Behavioral Medicine Matters in Cluster Headache Care Wednesday, April 8 from 7:00-8:00pm Eastern Time In collaboration with Clusterbusters, the Jefferson Headache Center invites you to join an upcoming educational webinar for patients living with cluster headache and those who support them. The session will be presented by Susan McCrea, Licensed Psychologist, who will discuss psychological and coping strategies that may help patients manage the challenges of living with cluster headache. Bob Wold and Joseph McKay from Clusterbusters will share their perspective as patient advocates and share insights from the patient community. Physicians Dr. Young, Dr. Marmura, and Dr. Nahas from the Jefferson Headache Center will also join the discussion. Date: Wednesday, April 8 Time: 7:00–8:00 PM (Eastern Time) How to Register: Click the registration link below: https://events.teams.microsoft.com/event/24bb6ffd-b82d-42cc-b970-b1b57c59a880@55a89906-c710-436b-bc44-4c590cb67c4a/registration After registering, you will receive an email with instructions on how to join the webinar. If the link does not open, copy and paste the link into your web browser (such as Chrome, Safari, or Edge).

@NeitherHere I explicitly remember smelling an electrical fire smell or similar to it the whole 8 weeks of my last cycle. It was odd but unmistakable. I haven't really looked too far into it other than it's related to the sinuses swelling which can affect our smell. Congrats on 2 years clean too. I will see what I dig up on the elevated sensory levels.

...i can't speak to the connection of these phantom odors to hits or cycle except to say that for years i experienced similar. mine were burnt toast, manure, electrical fire, and a few others. my cycles were very close apart and it never seemed connected to cycle position or hit prodrome. as i recall these were random and "interesting". is also a symptom of other scary neurological maladies like MS...which i have been tested for multiple times (negative). that its a "tell" is actually a good thing for you... ...rapid change in barometric pressure...like hi to lo pressure weather wave was a guaranteed trigger for me and many others. re "noon", guessing your particular circadian rhythm... ...that there is WAY typical of CH...it would surprise if only occurring during these... .....boy howdy, YES! and mega congrats on off loading the monkey...from contacts and research it seems clusterheads are more prone to addictive behavior than "regular" citizens... best jon

I heard a similar story from a CHer in Canada last week whom once a year picks up everyone’s fav coffee, tea or whatever (he has it written down) along with some deluxe pastries and donuts and puts on a morning tea for his oxygen hero’s at the store. They appreciate it and I know he appreciates their very efficient assistance. Love it.

@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 see what you are saying now. I went and made sure to read the label on my pills, and thankfully the 1 capsule is the full 400mg. Since the regimen has been effective for me so far, I'll keep doing what I'm doing now. I'll consider changes in the future if I see any worsening cycles. I'm hoping to find a PCP who's more receptive to this regimen by then. Anyways, appreciate all the information. And good luck to you, brother. Good luck to us all.

I just made a post today that I've been 33 days attack-free after adding Zyrtec (one time a day) and 1-2 drops of a 2:1 CBD/THC tincture (every few hours). I then started searching the site to see if anyone else had tried this, and came across your posts. I also saw that you posted about the possibility that they might come back if I take the tincture everyday. I will have to look into that. Thanks!

https://clusterbusters.org/study/ut-houston-batchs-vitamin-d-regimen/?fbclid=IwAR26zK4jCbwyL2LIkcnVOkkj7__c_raUHVbrq08POiltlRiz148Kfsve5wU

I am one of the people who highly believe the vitamin D theory actually holds more water than any other theory, so I will get in touch and see if they can take me on. The only problem is that my Cluster headaches are so wild and they last 4 months in a 2 year period. Am currently in the cycle but will be done with it hopefully and face it again in 2025. I get them every winter of an odd year. I was so curious to know why I got the 2-year remission, and so far, only the vitamin D theory has provided me with a plausible explanation. Vitamin D3 and Calcium are involved in bone remodeling and it's regulation under the guidance of the PTH. With deficiencies, its very very possible for the side effects to be felt in 2 to 3 year intervals while the body restores the balance. The cluster headache may be the body's way of short-circuiting us into giving it more vitamin D3 and, therefore, calcium for maintaining our bones. In a similar fashion, Verapamil, on top of its effects on the blood vessels, may work by stopping muscular tissue from using up all the calcium in the body and availing it for our skeletal tissue maintenance (Bone remodeling). And that's the only way I can explain the remissions. I think if we all did blood work constantly, we would address a lot of curiosity in this part. Currently, I have an uncle in remission for 15 years. He tells me even if someone offered him a million dollars, he would never want to go through his 20s and 30s again because of cluster headaches. Interestingly, the processes that use up a lot of calcium reduce with age, so maybe he hit the acceptable range of Vitamin D3 and Calcium, and his circuit breakers need not bother him again. So I really hope this study helps. Also, what is our common denominator? There must be some thing about us clusterheads that is common and unless we partake in researches, we won't find out. When the body causes us unexplained pain, the likes of which we get during these episodes, it is trying to communicate something..it is telling us something, and unfortunately, it speaks so many languages that we have failed to understand what it wants.