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LP3 Yes the reality is it is relentless and without mercy Yes 15 attacks a day is unbearable Yes I question ‘why me?’ Yes there is no future, only today and tomorrow Yes the medicines are no cure and take a huge toll on my health Yes I can not enjoy simple things anymore like movies or concerts Yes there is only little that I can eat or drink without triggering Yes the nights are long not knowing when it is going to stop Yes tomorrow it will start all over again Yes I am fucked Yes I do not feel fucked Yes I refuse to give up Yes I need to be stronger than this Yes I can not tell my parents up in heaven, ‘sorry I gave up’ Yes I lead by example for my children Yes I do accept the help of my friends for the things I can’t do anymore Yes the glass is half-full, not half empty Yes I can still see the beauty is small things Yes there is a place (here!) where we really understand Yes I take comfort that I am not alone I found my peace with it I hope you can find yours Alex

Hey @lp3 I just wanted to take a moment and reply to this post because I can feel your anger, disappointment and devastation through your words. To start I want to say that no your life is not a joke nor is mine or any other cluster head's. @mit12 was correct in saying that a cure is non-existent and that buying time to live life as we used to is possible! I really get where your coming from with not wanting to hear another bleep about a janky hypo or D3 or busting etc.. In the past I believed that this affliction was a punishment of sorts for some bad thing (I've done many a bad thing) in my past. Truthfully that's like saying a baby diagnosed with leukemia is being dished penance. For what?? I'm so sorry that you have not found "clear brain" as of yet and that your torment is so awful. My life has changed so much since this diagnosis that at times I'm not sure who or what I've become. My strength is perseverance! Try, Try and Try again! Don't give up my friend! Never give up! Yes it's hard and if you believe God chose you to walk the hollows of horrer then be proud because God chooses only THE BEST!

I had a D tank in a nylon carry bag that I took to work every day while in cycle for years. I shared an office with 2 others who knew what the deal was, and they were on board. One day I got a visit from the "safety department" and was told in no uncertain terms I could NOT bring "that tank" into the building anymore. I tried every angle and the best I could do was "go to the medical department and use theirs". Never mind that they were a literal 10 minute walk from my office. A director 2 levels up heard about the whole affair and took up my cause. The answer was still no and that pissed her off to huge degree. Long story short.....she told me to go to my car ANYTIME I needed O2 (only a couple minutes away) and if anyone said anything negative about me doing that, I should refer them to her. I never heard a word after that. Some people think O2 tanks are just short of tactical nukes. It's hard to get around that sometimes.

You are correct, there is no cure! But you can get some life back with busting and other things people have suggested. I have been where you are and got some relief only to go back. It’s a life long fight and I am thankful for this group of people that have helped me cope with this life.

...wow...if Racer couldn't get this to work w/o hassle, i despair!!. we got enough to deal with w/o well intentioned ignorance depriving us of a remarkably effective abortive, that for many makes possible a job, career, even sane life.... ...one other thought besides state employment agencies...i cannot imagine that the major O2 suppliers (like Lincare, Air Gas, etc) do not have some sort of insight, advice, procedure to assist their customers out in the real world. i know the advent of the incredibly compact concentrators now make this kind of problem nearly moot.....but for most of us with CH that's not an option. i'd call around ...starting at corporate level....

.....there's no telling Shaun...i always carried a script just in case. injectables never got a glance, regulator and mask got a "what's these?" like spiny...but my explanation accepted. my only hassle was from a can of salmon!...which got a supervisor and 4 agents in deep discussion. it was hilarious but i stifled so as not to appear crazier than the cracked head clusterhead i am. they let me go when i offered to eat it in front of them....

... took an e-tank to work in a cart for 25 yrs.... colleagues considered it "jon's dog". private office so none of the issues you are dealing with. also had tank in car... so that sounds like YOUR best option. doubt anybody is gonna write you an approval letter.... everybody is concerned with liability and lawsuits. however, an approach that is not personally confrontational may be through your state Labor and Industries (or similar) who can describe the "reasonable accommodations" an employer must make for worker with "disabilities" (may need docs letter for that). i'm thinking of how an employee with COPD or other lung issue must be accommodated w/o isolation in a "special room". the safety issue could be valid depending on type of business... but i really doubt would be in most cases. heck, our engineers had oxygen, acetylene, and tons of ammonia to deal with... one more tiny tank was just amusing. a retail or non industrial setting, or even segregated industrial void of open flame is incredibly safe (especially in a specifically designed holding cart). part of the argument i would have made but didn't need to was "i perform all my duties and more... if you just allow me an occasional few minutes to deal with this you will be retaining a valuable employee"... or something similar.... .... so glad you at least HAVE the O2, that is a BIG deal for some..... sorry for the hassle in using....

The simple fact of the matter is that this is a non repairable disease that us ch will have til the day we die. No one really knows what causes it (if you reply back hypothalamus i will scream) and that all prescribed drugs are psuedo science placebos. Oxygen is not a cure. Lsd Mushrooms etc are a distraction and that we have been chosen by god to be sent into the horror chambers of hell. So...fuck god. Doctors, big pharma, psychedelics etc. You have been chosen. It is your and my destiny to live life like this. Once you take this attitude u can respect that this whole life of yours is a joke. Got a rope? There is a reason these headaches are called suicide headaches. Please do not post d3 regiment or other bullshit in response. I have tried them all. And. Nothing. Works. Chronic. Mad. And done with it all.