john2000

I 've been wondering and denying it for 8-10 years now. I have every symptom, doctors agree that those are not migraines, tension headaches, the only thing that it could be is CH. I read a similar tread somewhere where people with CH ,some where military too,were saying that getting shot in the stomach , or stepping a mine ,or being crushed was much worse then any CH attack. Also every definition of CH says, that the pain is the worst any human being can experience right before they pass out. When my neurologist told my that I have a CH 6-7 years ago I said ,no way ,I don't have that kind of pain . I never went back to him , because of it. I have to say,because of that definition regarding the pain level I continued to suffer for 6 more years without O2. I kept researching CH ,but every time I came to a conclusion that I cant have it because I 'm nowhere near passing out Every youtube video ,every article says it. I wonder how many people are living with CH without knowing it or denying it. My pain is bad, I'm a grown men and I do cry from pain after about 30min of no relief, last time I was crying in public with many strangers around so it is bad, but I still think that stepping on a mine and having your legs blown off is 10 times worse. So ,based on this,,,do I have CH or no? Why is there so much emphasis on that pain level? My KIP level is 8-9, very rare to get 10's. But even KIP 10 doesn't seem to be describing that CH pain they are referring too. The worst pain should be like KIP 13. .

Almost every article claims the CH is the worst pain imaginable. One on the recent articles claimed that it is the worst pain any human can feel ,just before they pass out. My pain is nowhere at that level,it is about 2-3 times worst then the worst toothache I ever had but more wider reach with more pounding and high BP etc. I curse from desperation and hit the floor many times but still I can image that It could have been much much worst. I know it is not a migraine,tension,high BP,sinus . Also opioids never helped me either with CH pain. But I wonder from time to time. Is it really CH if I 've never experience that level of pain that would make me pass out? I could image much worst pain, then I have. Do you really have pain like that?

It's a public information , I just googled it , so I don't think there is a problem to share it

I don' t think that air leaking out during exhales is a problem or a design flaw. It is designed like this on purpose,otherwise the bag would just burst or the connections would disconnect . Oxygen that you can'l breath in your lungs from the tank must go out and the easiest way for that excess O2 is though that exit valve. If he is not emptying his bag when breathing in ,he doesn't have to cover that hole because you cant breath in any air at all.It is one way valve only . If you put a mask on tight with no 02 flowing you cant breath in any air at all . Also while that excess oxygen is flowing out there is no mixture with the outside air. You dont have to cover that exit hole. O2 will flow out thru that exit hole only if you can't breath in anymore O2 . So it is a safety valve too. When oxygen is flowing out there is no air flowing in ,because nothing is forcing outside air in . New O2 is consistently being pumped in. Also at 6:20 you can hear him breathing out and even for him it takes too long . You can hear him pushing it out but it takes him about 4 seconds. Without a mask it is 2s if you want to force it out the same way. There is nothing really wrong with the valve , it is just a piece of rubber. The only problem is that is is not too flexible, so you have to force it out . What would help is a different material that is not flexible. I'll try 2 outlets. mi12 could you test this: Breath in O2 and breath out with a mask, measure how long you take when forcing it out Breath in O2 and breath out in the mask. measure how long you take Is it about 3s out with a mask and 1.5s out without a mask at 35-40LPM for me

Do you find it effortless to breath out into the mask when using a demand valve? With a simple mask,it is easy for me, With a cluster headache mask 3Lbag I find it more difficult to breath out as the outlet hole is too small and I have to force it out through a relatively small opening. It is clean and 100% assembled correctly , but I do 40LPM at the beginning and that opening is just too small to force the air out.It is easy to breath in at 40LPM becasue the air is being pushed in the mask through the same size opening , but breathing out is done through the same size hole. I will use a splitter at the outlet to get 2 holes and see if that help. How does it work with a demand valve --the breathing out part , is it completely effortless ? or you have to push it out little bit, force it out. ? at 35 to 40 LPM thanks

Just a short article about the importance of a correct mask for those new to oxygen. https://www.ncbi.nlm.nih.gov/pubmed/27013239

january(30 CH) ,....march-may(100 CH) .....sept-oct(120 CH) ......my cycles and latest average count .............. usa NY, but I had one today which is weird ...

But if you are at home let say and you get that first sign of a slight headache,,that very very first pulse, doesn't it give you anxiety?Even now that you know it's nothing its just a tension headache or sinus or whatever. Right now I'm off cycle but still I'm ready to grab my oxygen 5 times a day. Even off cycle it is still there that unreasonable stress. In cycle it is expected ,but off cycle I should be able to live like a normal person . I have O2 in my car as well and pills ,2 sets , everything doubled Explaining people why I don't smile anymore or looking pissed, if I 'm just depressed from this doesn't help either. And telling someone that I have a CH doesn't help either .I stopped doing it long time ago ,,,,,,,"O really ,,I get those too",,,"O really I'm having one right now too"....a typical response ...or "a cluster headache ? what's that" ....

Hi, I'm off cycle now,I should be OK until dec,early jan. But every time i have even the slightest indication of a CH, which it can't be in off cycle , I get scarred and frozen for about 10 seconds waiting what will happen. I immediately start to think if my tank is ready and my breathing ,pulse and BP goes up . I would get this about 5times a day.But it casuses my non-stop anxiety. I think it triggers the memory of CH and even thhoug I quickly forget about it, that anxiety stays with be basicaly non-stop. It's basically constant sadness, fear ,anxiety and depression . I think I have developed chronic depression by now. It's like constant pschychological torture of what if ,like someone is playing with my sanity .Why can't I have peace in off season. I think that as horrible as CH cycle is for me , at least I know the drill. For whaever reason I can deal better with physical pain then pschychological pain. Phisical pain goes away quickly but this pschychological pain just drags on forewer and I swear I can physically feel it too. How to you deal with it? Do you have that kind of thinking when you are off cycle? Thanks

That's what I do when I have only 1h of O2 left and It has to last me for 2 days. My concentrator saves me about 5times a year. WHEN RUNNING LOW and CH comes on: I would have the concentrator running with the first shadows to heat it up (10min), or I just keep it running from the morning,,,, first pain 0-2min = Bottle at 25LPM + Concentrator at 5LPM = 99% of O2 2-5min = Bottle at 20LPM + Concentrator at 10LPM= 98% of O2 5-10min = Bottle at 10LPM + Concentrator at 5LPM = 98% of O2 10-30min = Bottle at 5LPM + Concentrator at 5LPM = 97% of O2 Concentrator at 94% O2

Parallel of course, ,,,I had 2 before as well before I knew about the purity of O2 from them . They should have the same LPM SET on each ,but I'm not sure if it matters much , there is very little pressure . But they are very very expensive. Anything at 8LMP - 10LPM will be new around $1200 and a used one maybe $700. I would buy a used only from a medical supply store, because they test it in regards to purity of O2 it produces before they sell it. http://www.lampworketc.com/forums/uploadedimages.php?viewid=268847

If you are getting 90% O2 with a concentrator , then it may not be the best idea to fall asleep like this. If you use a mask with one hole on the side, they will be safe or safer. (60% O2) One problem will be very dry nose and throat after uninterrupted use.You will need a humidifier bottle added . I dont believe a home concentrator has a built in humudity control. Maybe it is little less dry then O2 from a bottle, not sure. What helped me with night CH attacks while I'm in the cycle was melatonin right before I fall aslepp from 10-20mg , or higher. CHfather made many posts about it already . You could try the O2 as a prevention ,but I'd ask a doctor about long term exposure to x% O2 and adding water bottle will help you too.

"It seems like one thing us clusterheads have in common is we are very resourceful when it comes to trying to tame this beast. " Yes, especially when a new cycle begins after months of no CH, and you are trying to hook up the bottle, finding the mask , fixing the leaky the regulator at 2am, all in the dark ,because of super light sensitivity while knowing you have about 2min to do all or else it will be hell.

Thanks for sharing , I wish you and your family the best. I'm sure this will help sooner or later someone,when they read this. As painful as it is to read, it will give new hope to someone who think ,they can't go on anymore. Best regards,

Would you mind sharing how old was she when she started to get CH and how old is she now? Is she getting better? Is she ever posting about CH? it is just too painful to read about this, when parents have to see their kids going thru this, Seeing grown men and women going through this is horrendous, seeing your kids must be even worse, no matter the age. I'm almost 40 ,almost 10yrs of CH. My parents don't even know I have CH, I just tell them it's a migraine. If they were to look it up on youtube and saw some videos, their heart would brake. I dont ever want any of my friends or family see me with CH attack best regards

No one in my close family has it of had it as far as I know. Also no colorblindness. Still I'm worried to have kids, even if there an only small chance of passing this to kids.

thanks guys for you help .

Jarhead,good luck with CH I agree that about CHFather ,he deserves a freaking medal for what he has done here,,,and many others too, who respond daily, If it wasn't for this forum , I would be still suffering without O2 due to incompetence of my doctors.

It sounds like CH ,regardless , but I still wound't be 100% sure. If you get it always in the morning maybe it has to do with something else that is happening in your sleep right after you wake up. You should get O2 as soon as you can , even welding O2 will do. For me it works really quick, be sure to read a guide of proper use otherwise it will not work at all. I learnt this the hard way. What is your normal blood pressure and when you get CH? E-drinks-----For me anything really helps,,,but always cold,,,sugar,no sugar, red bull,monster ,cheap walmart brand, it'll all the same. And always at the very first sign ,I drink it really quick , then O2

Mine does 95%, but 100% O2 works almost instantly , concentrator was like 15min,,,,I used it too,before I Knew about the necessity of 100% O2.

Thanks ,I was waiting for you, I knew you are the "lucky" guy who has both from previous posts. Is the only difference the level of pain and duration ? For example: Migraine pain goes from Level 1 to 5 CH pain goes from 1-10 but both CH and migraine feel the same at level 5, -would you say it is the same kind of pain, in regards to the type ,not intensity? -for me tension H,CH,normal H, all have different feel to it even at the first sign of them.I can easily predict which one I will get in first 10-30s. How fast is the migraine onset from the first pain hit level1 to level X ? thanks

1.How long are have you been seeing this doctor? -I'm puzzled little bit, because you said you have had it for 5 years, but it looks like you just started to see a doctor just now? a)Is it a neurologist? b)I'm just curious why are you asking if it looks like CH if you already saw a doctor. I 'm not trying to be rude, I question everything too. How much do you trust your doctor then? 2.How long have you been on prednisone ? -some people(maybe) more then some, report fast weight gain and other problems with long term use. 3.My experience only and from what I have read. -my CH pain comes on fast. From first hit(pulsating vein) or first cracking noise in the skull to about level 5 that is 3min . From 5 to 8 another 3 to 5 max. - most people report very rapid onset .Basically from : I'm feeling great to level 8 let say 3-10min. -Yours look like they have more gradual onset. -Maybe you are lucky and you might not have CH but something else. (others could join in in regards to speed of onset of CH maybe I'm wrong) 4.) The author of VITd reg. is saying that you really must take all the suplements for it to be effective.

"I will have to look into oxygen, my doctor recommended it but he said that most people COME in to get it..I'll look into getting it at my home." So , I'm sitting at home, I feel CH coming on ,,,,,I'd be like,,,,well I have to drive to the doctors office(hospital) to get a hit of O2. I wouldn't even make it out of my driver,,,,,and what if it happens at 2am???? I can't image a doctor who treats you for CH even suggested such a thing. Doctor said ,Most people came in to get it? Most CH sufferers are sitting at home with their O2. Those can't be CH sufferers who come in for O2. If he ever saw a full blown CH he would have never said it. I 've got it on a job just one time and I scared the hell out of a whole neighborhood. That was years ago , when I had no O2 or meds.

Hi Seff, How long ,from the first symptom of headache coming on ,to when the pain is at it's medium and the worst? Also how long does it take it to disappear once you feel that pain level is getting down?

You are right about O2 poisoning possibility, But my tank would run for 5H before it ran out. I think that the solution is :Don't use a strap on a mask, hold it to your face.I do it like this.I feel better when I push it against my face. When the pain is gone , I can put on a strap for 15min,when I'm sure I won't fall asleep.