tingeling

Ben wondering, how much o2 do you people use aprox in one week?

Bejebeer, that was good!! Ondemand also has this filter disk, so you won`t get that dried out throat and mouth when using o2 allot over time.

It really is, i thought it was good when i had 25lpm, as said, it can`t be compared

With ondemand you don`t need bag. It will give you the amount o2 you are able to breath. I tried big bag with 25flow, can`t be compared with ondemand. It is fantastic.

This is usual to me at least. I get post dose hits for 2-5 days, then i have some days more or less or completely PF, then it starts up again. Or it can be as you describe it. What i noticed is that when you usually would be dosing, something happens, like a "down" or any CH thing. A change. I found out that waiting through that time is important, i`feel it`s part of the "re set". Maybe that is why stretching with two days is a good idea, as i was told when i started. I started at 3 days, 5, 7 etc. When starting to do bettter. When you should start stretch it out i guess you just have to listen very close what your body tells you, it needs time to adjust. I feel my "real" res come before around twoo weeks. But we work differently

Hi I use a ondemand regulator with mouthpiece. I find mouthpiece much more effective than a mask. I breath in and out mouth. In my experience o2 use can be not effective at all, if not used the best way with the right equipment, or it can be very effective using right. Breath deep as you possibly can in and out then start huff as fast as you can, i "pause" down with some deep breaths in and out again , then start the race again. This can make serious difference as i experienced at least. Good luck to you

New shoes lately? ;D

Hey Raquel!!!

Hi Welcome to you While you detox, keep a good trigger free diet, keeping blood sugar stable. Drink lots of water as well. Get up in the morning, do not snooze. Good luck and painfree wishes to you Tingeling

i'm sorry to react that childish, really. Stupid. Sorry about that. Thank's to you Dan:)

Ok, i was told i had to explain myself. What i meant here was that this perhaps may be done, if NatGeo choose to show it in a way that won`t exactly help us though, that will be ok when it comes to other parents and my daughter. Because i will stand behind supporting as anonymous as i can, hidden in a group. I will take precautions, it is up to me how much i expose myself. To tell that we treated this with Hallucinogenic`s at one point is one thing, but from there i think we should be very careful. Sorry, not a good way to "speak" in a discussion.

Why, isn`t it water soluble?

I got something like you describe from Imitrex. Also in my fingers and arms, in a way.

Do you live there as well?

Better way to say what i ment.

Hipshot is right and you`re right. Dan, i agree f...em, this has to be done at one point, why not now. Someone has to be the first ones to be looked at (we have our evil cluster eye to look back at them anyway). I was thinking like a coward, we`re not cowards. My daughter gonna do just fine with her friends parents. Go Dan, i stand right behind you!! (Not hiding though )

We are almost 1000 members. Clusterbusters gonna be googled ALLOT of times after that show. It would be sad if a mushroom farm is what they have in they're mind as they read. Because that is the way most of the parents to my daughters friends gonna react at least. Even when seeing an attack, they won`t be ok with someone producing illegal drugs. Then sympathy for this condition disappear and the credibility is gone. And they gonna have strong opinions along with a bag of crisp`s on theyre couch. Ok, not everyone but you get my point. Where i live, Mushrooms have the same penalty as Heroin. I take a risk every time i order RC seeds as well actually. I thought they wanted to show that we need this as a med, like BOL. And how much trouble this cause in our lives not to get what we need. Why they want to do it that way?

What did i call it, "mature brie".LOOOL ;D So i gonna try stay away from the crying now ;D When you decided to "be finished with it all", in a way that makes you feel better, that life get better after deciding so, then you're very suicidal i recon. I didn`t tell anyone and started to answer everyone i was ok, and i felt "ok", i felt calm. I believe when a person has reached this point, it is very hard to turn it around. To be honest, i don`t think it would have been possible for anyone. When i tried this, i did it to be polite to a person. Who could know i would end up where i am now. This placed saved my life All the positive things that happened recently, it feels like i get all the pieces in my puzzle all of the sudden. Also i think it truly shows i`m on the right path in life. Life turned on me, i got lucky, and i embrace life i can tell you!! Last Mon i made moussaka and bread. My house had a wonderful smell, like you could taste it in the air. Oh how i wish i had a big garden and a long wood table with all of you there. Maybe one day it will be possible. Now i gonna start that crying again, i better log off ;D ;D (Just got rid of those puffy eyelids after 7 years ) "We all have our own life to pursue, our own kind of dream to be weaving. And we all have some power to make wishes come true, as long as we keep believing". - Louisa May Alcott Thank you so much

So i just have to write a bit more. This is very emotional to me, i feel a bit foolish now. I`m cry and i cry, i don`t know why, maybe from relieve. It just that i`m so happy. Just so everyone know, when i said painfree before, i been pf from a "chronic view", i been so satisfied with my results. But this time i`m pf for real, and no shadows. i didn`t think this could happen. Awhile ago i found that i don`t remember how it feels to be "totally normal" healthy. It has to be like this. Everything feels so easy. I`m aware this may not last forever, but times like this gives you someting to remember. It also give me hope that it moght be possible for a chronic to get out totally from cycle.

I think there`s something different this time. I know i said this before, but every time i got pain free, there has been a difference. This time i have a hard time explain what is going on. When being pf, i always keep my reg sched for sleep and food, that stuff, not this time. This may sound stupid, but i been chronic for so long now, i been so much worse than this, i don`t care much about getting myself in some extra attacks for a little experiment. You get used to it. So this week i had a feast that really need to stop, or i will get overweight ;D I LOVE sweets but i can never eat anything. This week i have eaten sweets every day. I baked chocolate cake(big pan), been eating burger AND fries. Usually it will start to get a bit bad again after 5 days, so i thought i would eat my favorite dinner, a spicy fish dish, before dosing. Also i had a big plate of chocolate and salty crisps. Sat i ordered a tapas plate with spicy sausages, very mature Brie, pretty much everything i can`t eat but really love. Food, i`m a food wreck, it`s just not possible for me to live it out ;D This weekend i slept several hr over, and i`m fine!! So i didn`t dose. Now i starting to feel i crossed the trigger line for this time, cause i`m still good, so let`s not tempt it further, feast have to stop for now. But i must say, it has been a pleasure to eat and sleep (But starting to feel a bit like the time of decay...) One oddity, in the night i wake up around 1 or 2, then again around 4 or 5. Usually, i just go back to sleep. I`m so used to this it doesn`t bother me. Now i wake up at 5 with no pain, but i get really woken up. It`s ok, no need to sleep longer, nice time to get up anyway. During the day i get nothing, so something changed. My head feels clear all day. When i get up at 5 i feel very good, the feeling of getting enough sleep and being healthy and ok. This gonna be very exciting. Maybe i can stop getting that chronic cycle i had for seven years now, every third hr. When i been pf i always had a weak shadow or something at the same times. Time will show Thank you both and everyone, i feel as there rained some magic powder down on me, or maybe i just drank some Have a wonderful day everyone!! PFWF me Tingeling

Hi I been pain free for the hole week!!! A barely had the "worm". Been enjoying my pf time allot, something happened and i want to share it with you folks Over the years, i felt my friends have let me down. And honestly, they did let me down. I understood why in a way, because when we let others down, we do it out from different reasons. Most times, i guess we do not know we`re doing it. My friends wasn`t experienced enough in life to know. What i did wrong, i never told them how it really was. It has been some years now, i haven`t even talked to my "old" friends. Earlier, i always been the one who contacted them. As i got more and more debilitated, i didn`t had the strength to do what i usually did. What happened then, i guess is not unusual, but it hurts and you feel very lonely. I did at least. Because all of the sudden i was very alone, no one called me or invited me. Not a word from anyone. I let it go, and started to connect with others. But i had them in my mind. In the beginning i got angry, then sad, then i thought well well never mind, maybe i bump into them some day. no need to be angry. Past is past, we all do wrong. A little while ago, i posted some info about Clusterbusters to my Facebook profile. Didn`t think anyone had seen it or noticed it at all, i was very wrong. All of the sudden i bumped into all of my "old" friends. They asked how i was doing and i answered fine. Well, you look good now, i looked at the CH thing awhile ago.... Everyone said the same things to me. I was overwhelmed, cause the post wasn`t about how bad i was doing, just general info about CH and fundraising. Last Sunday i was contacted by one of my friends we used to have daily contact, more or less. She apologized, they had been talking together and they felt very bad and wondered if i wanted to catch up. And i did. We met yesterday. Sat before i went out, almost cancelled. Told myself i shouldn't`t be a coward and they had done a wonderful, very unexpected thing, and they didn`t have to. We spent hole day together, it was great They said they had no idea, also they said i never told anything about my difficulties. What they could remember was that i had thought something was wrong with my teeth, something odd was going on with my fingers and arms, wondering about some numbness in my face and that was about it. I realized i hadn`t told them anything. Didn`t want to rant. In my short life, i have been trough allot of challenges. Before finding CB, i had no faith in others, i felt i had been shown that you cannot trust or expect anything from anyone. I been shown i was wrong about that, over and over again now. I`m so lucky, can`t understand how i can be this lucky!! This shows that it is possible to get all the pieces together again, if we just continue to believe in life. BUT, this would never started if it wasn`t for all of you. I am very aware of that, and i am very grateful. You all helped me more than anyone else in this world. You got me trough this. Everything is possible My best wishes in life, to all of you, big hug from me Tingeling "Every once in awhile, it goes the other way too". http://www.youtube.com/watch?v=zJeGFu8JHrI

Hi and welcome We`re here if you like to ask something. Pain free wishes from me Tingeling

Hi Narelle Welcome to us I see you have "hooked up" with Denny here, so you gonna lots of helpful info. Just wanted to welcome you and your daughter. Life can really turn now. I had years like you describe, until i found Clusterbusters. Now i am painfree. So there is something to do about it. My best wishes to both of you. Tingeling

Me too. I was told to remove them, chronic infection. Fungi fixed it, never has infected tonsils now.

I`m not at CH.com, so i haven`t seen it. Thank you for sharing