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ClusterBusters

john2000

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Everything posted by john2000

  1. Could someone who has both CH and Migraine H. describe Migraine headache pain ? Someone who has Migraine H. once told me, it was similar to headache that you feel when you have a heatstroke.He couldn't give any other definition. Thank you ,
  2. Hi, I would need help to figure something out in regards to oxygen. I have 10L/m flow big home concentrator. WHen i use it ,it helps to get headache down really quickly after about 10min of use.AFter 30min the pain is almost gone or manegable. I also have portable oxygen bottles filled by medical supply company with regulator up to 15L/m. When im away from home and I use portable oxygen , it doest work at all for pain . Even at 15l/m. I feel the oxygen flowing ,but the effects are basically none.I use the same mask inside and outside. With concentrator it helps 100% of the time. I used concentrator about 20 times. With portable it dosent work at all. I tried portable 4 times . With portable, bottle get really cold, could this have some kind of effect , breathing cold oxygen? I breathe portable in my car with summer temperature outside. Thanks for any help
  3. john2000

    Oxygen Mask question

    Hi, I have a question about a breathing technique with a clusterO2 kit. Do you breathe out into the mask or remove it from your face when you breath out? Thank you.
  4. john2000

    Oxygen stopped to work

    Hi, I use O2 to abort CH, but lately, past 6 month , it stopped to work like it used to. It aborts the pain in 1-2min while breathing it , but as soon as I stop the pain is back in about 5min, I 've been around the forum ,so I use a proper technique,CH mask,,,,the same supplier,,40LPM ,reducing to 15 LPM, hyperventilation at the beginning and so on , Any ideas , suggestion?thanks
  5. john2000

    Oxygen stopped to work

    thnaks,,,for me O2 used to work as abortive as well. When i stopped breathing O2,,,the CH was gone for the day...Now ,it still kills the pain ,,,but the CH comes back on. Vit d reg, is little problematic for me,as it seams that i have certain sensitivity to some fillers or coloring,, not sure,,,finding the proper vitamins is way too difficult, as I have many,many food triggers as well, that change over time as well. Vit D reg. is becoming almost impossible to implement for me. I started 2 times already in the past,but I had to stop due to increasing number of attacks.
  6. john2000

    Zomig NS, wow me like

    I'd start making notes regarding frequency of attacks, any time any new medicine is introduced. Rebound headaches with triptans were horrendous. I too remember the feeling of first relieve i had with trip tans(zomig) , it was amazing ,,a true miracle,,,nobody warned about possible side effects. I went from 1 head ache every 2-3 days to 2-3 attacks , 3-4 days a week. After limiting the use of triptans I'm back to normal 2-3 attacks a week.
  7. john2000

    Finally! I have found way out!

    There are many legitimate drugs that work,but the magical cures that one guy mixes up at home and not even disclosing the ingredients,,,because it is a freaking trade secret??? If you have a freaking miracle cure, that "healer" should just sell it to a big pharma or a research lab . Miracle cure.....Mix up some bullshit herbs,,,add 200-300mg of sumatriptan,300mg of caffeine ,etc...,you should be ok for the next 24 h,,, Don't people understand , that even real drugs, don't really cure CH only manage other biological functions in our body, but the underling problem is still there. Current drugs, do not fix physiology , only help to control certain functions. We can't even cure a freaking cold, and people have a cure for Cluster headaches,when is this non-sense gonna stop.
  8. john2000

    Finally! I have found way out!

    Every one who has migraines or cluster headaches had found a magic cure in the past. I 'm 100% sure of it. THE ONLY PROBLEM IS , THE "CURE" STOPS WORKING SHORTLY AFTER OUR DISCOVERY. There are many reasons why we find the "magic cure".. from a cycle ending , to pure coincidence,,, to remembering only the times when it works. My discovered magic cures over the past 10-12 years of suffering, that I genuinely wanted to believe and they worked from 1-3 times of repeat use then, It stopped. NOT MAGIC CURES , BUT WORKED 1-3 times in a row ONLY !!! 1.)M-grain essentil oil - on the temple and neck when the attack starts 2.) Drink 2 very cold- close to frozen redbulls at the start of the attack 3.)Cayenne pepper under the tounge at the start of the attack 4.) Feet in hot water for 10s ,,then icy water for 10s ,,repeat ,,,or one foot hot water other cold water... NONE OF THIS WORK ANYMORE WHAT IS STILL WORKING FROM ACCIDENTAL DISCOVERIES -Intense exercise at the first sign ---pull ups,,push -ups,,,,,intense meaning 60push ups in 1 min ,,,rest 1min ---30 pus-ups---rest 2 min 60push-ups,,,,etc,,,500-1000 in 30min - 1h, until the attack is aborted works for me about 30% of the time,,,,sometimes combined with O2 and energy drink. -home made food, makes cycle a bit shorter HERBAL MEDICINE IS FREAKING WASTE OF YOUR HOPES,TIME AND MONEY, EVEN IF A PERSON BELIEVES THAT IT REALLY WORKS. CLUSTER HEADACHES SUFFERERS ARE DESPERATE ,BUT NOT STUPID. WE RESEARCH AND RESEARCH AND RESEARCH AND RESEARCH , MAYBE THAT IS THE REASON WHY WE CAN'T BE FOOLED EASILY BY THIS NON-SENSE, BECAUSE WE HAVE TO KNOW ,,,WHY AND HOW IT WORKS. Trying to offer magic herbal medicine to cluster headache sufferer is about as difficult as trying to sell a perpetual motion device to a Phd physicist, even if it is " free."
  9. john2000

    Pain level

    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?
  10. Hi, I was wondering if anybody is experiencing a food triggered CH when in cycle? When off cycle I can eat just about anything. When my cycle starts the CH usually comes right after eating anything or a snack. this happens about 50% of the time ,right after eating food. It is weird that CH waits until I finish my meal too. If it takes 10min to finish my dinner, then It starts 20s after finishing my meal. When I snack , it happens 20s after finishing , Some yogurt, banana , anything. Is it just coincidence? thanks
  11. john2000

    Intro / My experience / and Questions

    Darren,,,regarding O2,,,15LPM can't work properly with Cluster kit mask,, When I breath using 15LPM using cluster mask,,,the bag doesn't inflate in time,,,I must wait,,, When I breath at 25LPM it almost works ok,,,but still I have to wait What works is 30LMP- 40LPM ,,,, I have a regulator that goes up to 25LPM ,,,but also I have multyple bottle at home...So I have them connected using a splitter. Each bottle is set to 15LMP or 20LMP,,,,you need to use clapms fir the hose or better hoses, because the pressure from 40LPM will disconnect from a fitting. Also investing into a Demand valve would be a good idea,,,this way you dont need a cluster kit,,,,and it gives you unlimited O2, when you need it Buying a used one from medical store or ebay is ok,,, I start at 40LMP and then adfter 2-3 miin 25LMP is fone ,,then I continue at 15LPM,,, If your bag was inflated constantly it must have been a mask that had holes open ,so you were breating in air ,,otherwise 15LPM could have never ever keep up with your breathing.
  12. HI, I've been testing and evaluating triggers and diets for the past 10 years or so for CH. I think I 've found new major triggers for me that may help others. I can say that multivitamin supplements and some other minerals and vitamins were triggers. Also any food from a can like a soup, And with 100% certainty ,when in cycle any food bought from a restaurant or a dinner gives me CH Past 20 days I tested 15 days with home cooking and 6 dinners from the outside. Every time I had dinner from a restaurant I triggered a CH With home made meals I was getting a CH only every 3-4 days. even today stupid me ,ordered pizza,,,ch followed in 5min,,, I also take only VitD,MG,Omega,,,I think some vitamins in VitD reg, were causing a trigger too, I'm not sure which one yet.
  13. john2000

    Demand valve

    Hi, If I get a demand valve which can deliver up to 40LPM , can I connect it to a regulator with a HISS that has a setting up tp 25LPM=max regulator setting ,while still getting 40LMP from a demand valve? I wanna get demand valve and new regulators. thanks
  14. john2000

    Demand valve

    thanks for the replies, the DISS was more important for me to know. I Was looking at a demand valve that had a limit of 40/LPM so I thought it was somehow depended on the regulator used with it. But with more research I found that there are also 160/LPM demand valves. So there really is a limit ,but it is set by the specific type of demand valve. Thanks.
  15. john2000

    Demand valve

    double post, moderators ,could you erase one thread? thanks I'm not sure how it happened.
  16. john2000

    Questions about sumatriptan

    Metatonin helps me now about 80% of the time, 15mg before going to bed,when in cycle. 5mg off cycle. Sumatriptan gives me rebound headaches. I take tablets because they prevent a new CH, while on O2, for the next 6-8 HOURS ONLY! If I take 2 pills a day , or more pills in consecutive days, I will be making it worse. The only time I would take sumatriptans now is If I have to work and I just can't be on O2. Injections cause probably rebounds headaches too. I will not take triptans on the weekends and that is enough to break the cycle or at least to have a more predictable attacks. With triptans it is a never ending long term cycle.
  17. john2000

    Demand valve

    Hi, If I get a demand valve which can deliver up to 40LPM , can I connect it to a regulator with a HISS that has a setting up tp 25LPM=max regulator setting ,while still getting 40LMP from a demand valve? I wanna get demand valve and new regulators. thanks
  18. Hello, Could vitD reg. be effective for people with no CH only migraines? I want someone to try it, but they are kind of skeptical, thanks
  19. john2000

    Why do I have food triggered CH when in cycle?

    How can one type of food be a trigger when in cycle and not a trigger of cycle? I
  20. john2000

    Vitamin D regiment and migraine

    Thanks It looks like the easiest thing to try, are you promoting this idea on migraine forums as well? When I was searching for alternative migraine treatment , most of them were :MG, fever few, butter bur extract, and sometimes O2 was mentioned, and some oils, some aroma-therapy
  21. john2000

    Vitamin D regiment and migraine

    thanks i'll send it to them .
  22. john2000

    Why do I have food triggered CH when in cycle?

    When I took my food diary to a doctor ,he said it was just coincidence. I think it may be something related to sugar levels in blood or just purely psychological.
  23. I try to avoid triptans as much as I can . For me triptans help for about 4-8h , but a new CH will come with even more intensity . This year I took triptans only about 10 times. I take triptans only when the pain is unberable and I 'm almost vomiting from pain and discomfort, but I regret it as soon as I take it, becasuse the next CH in 4-8 h will be even worse , and that one can't be aborted with triptans. I do O2 and vitamin D regiment as well. I also have insomnia , but I've been taking herbal suplmetn before sleep : Naturemade Sleep . 1-2 capluses. It is not addictive , and has been working for be with the same effectiveness for more then 5 yers. Start with 1 capsule. 2 capsules only when I am wide awake not feeling tired at all. Also I take theamine and chelated mg before going to bed. I read somewhere that it helps with sleep and it seems to work. Regarding E-drinks,,, I found that just about anything works, even a cheap $1.5 non brand E-drink works fine. No need for redbull or 5h energy. When in cycle up to 15mg of melatonin before going to bed, reduced my night CH significantly. What is astonishing to me that all the info that really helped me came from this forum's wonderful contributors and not a neurologist. If there was no internet and people who really give a damn , i'd be probably dead by now.
  24. john2000

    rebound headaches meds choice

    Hi I need advice on meds . I started vitD regiment about 6 month ago , but I keep forgetting taking vitamins on regular bases,especially when I feel better. Now 3 days into my new cycle, oxygen aborts it, but it just keeps coming back , even if I stay longer time on it after the attack. I'm back on vitd regiment, but only 1st day with full list of vitamins. Also I took triptans tablets, whatever I have sitting around, relpex,sumatriptans. I'm taking triptans, when I can't abort the daily CH cycle and I just can't be 2-3 H continuously on O2. I also take triptans when the pain is too much to bear,like today. Triptans help with a new attack for about 6-8h , but cause rebound headaches, so I'm just postponing it , and I know it. Would it be a good idea to do injections of imitrex instead of tablets? Are injections known to be causing rebound headaches? Thanks.
  25. john2000

    rebound headaches meds choice

    medical O2 , optimask,proper techniques,high flow regulator
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