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  1. 2 points
    Freud

    “Cure”

    It’s real interesting what comes up if you search “cure” Click here 26 pages! I only got through the first few but it’s real interesting.
  2. 2 points
    CHfather

    “Cure”

    Reminds me of Woody Allen's joke, "Sex isn't dirty, unless you're doing it right." As I recall, one or two posters have suggested that not actually completing the act is the secret to stopping an attack. So actually doing it "wrong" might in fact be the secret to doing it "right." (This might also be within the posted materials, but I'm not going to look.)
  3. 2 points
    Rod H

    “Cure”

    I had high hopes for masturbation. I must be doing it wrong.
  4. 2 points
    CHfather

    First time posting

    There are some threads here about Emgality. Put it in the search bar (top right of the page) and you'll see them. Emgality is only expected to work for people with episodic CH, not chronic, but from your description, you might not meet the specific definition of chronic. It's not likely that O2 ended your cycle. Doesn't really do that (but since CH is pretty different for everyone, I wouldn't state that as a certainty). Check out the D3 regimen; it has helped hundreds: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  5. 2 points
    CHfather

    “Cure”

    Thanks to LazyGrind, we can now add pooping to the list of "treatments," if not cures. Like you say, j'c', who knows (except that many of them have been tried, with mixed success).
  6. 2 points
    Batch

    Question for batch

    Hey Dana, The Adult 50+ Mature Multi contains most of the vitamin D3 cofewactors/conutrients. It just doesn't have enough magnesium or any vitamin K2. There are additional supplements that can be added if there's no response to the above supplements. They include vitamin C as the human genome and that of all primates lost the gene for the enzyme needed to synthesize vitamin C from carbohydrates. None of the other animals that synthesize their own vitamin C have cardiovascular disease... That's a thinker... Accordingly, 4 to 6 grams/day vitamin C is a good dose. The other supplements frequently added by CHers are CoQ10 and Turmeric (Curcumin). Take care and please keep us posted with your response to this regimen. V/R, Batch
  7. 2 points
    jon019

    Looking for advice

    …..don't get used to the good feel of Valium....won't do squat for CH and can set up a whole nother problem down the line. it twere the methylpred...keep working on the O2
  8. 2 points
    FunTimes

    Looking for advice

    Maddie Clusters tend to come and go not give constant pain for days. If this all started after the tooth was removed and not before I would have this looked into, you could be dealing with something else. People have reported oxygen not working as well as it once did in the past. I find this happening to me but it is due to me getting lazy with my breathing tech. you can try downing a energy drink on the way to the oxygen tank to help but if your blood pressure is high that might not be a great idea. I would get checked out by a doctor and rule out anything else that may be causing the pain and rise in blood pressure.
  9. 1 point
    jon019

    Tubing and syringe sizes

    you got LUCKY...ea vial is 6 mg suma in 0.5 ml solution....potential for 15 aborts vs 1 or 2 for a statdose (as many get by with 2-3 mg of suma) ...so just draw up partial amount (found by trial and error) and save the rest for "next time". I used 1/2 ml 30 gauge insulin syringes....BUT much prefer 5 mg Zomig nasal spray...as it had nunna the ooky side effects of suma (for me)...
  10. 1 point
    CHfather

    Tubing and syringe sizes

    Miza', I'm not sure you really need that expensive of a regulator. There are a bunch at amazon that already come with the adapter (or at least it appears that way from the pictures). This one, for example, makes sense to me: https://www.amazon.com/PSI-KING-Welding-Oxygen-Regulator/dp/B01DAYCJWO/ref=sr_1_5?crid=2DOJUIMBLZXIH&keywords=welding+oxygen+regulator&qid=1556763640&s=industrial&sprefix=welding+oxygen+%2Cindustrial%2C156&sr=1-5. I also feel very confident that the ClusterO2 Kit tubing is standard size and will fit on that adapter. But you might want to be sure this is confirmed by someone else. If you are going to get the regulator you mentioned, it does look like that Dixon adapter will be fine. Less expensive plastic ones are available at amazon and at many hardware stores. As for the syringes, someone once posted this here: "1ml "insulin" syringes with thin 33-gauge needles work great. Don't let your doc or pharmacist try to convince you that you need a larger gauge for "draw up."" That's the only thing I remember seeing about syringe size, and I don't know anything about your other question regarding using a vial more than once. A lot of people get aborts from 2ml. Suggest you also consider getting a smaller O2 tank for portability. 40 or 60 cu ft. And you might want some kind of rolling stand for that big tank.
  11. 1 point
    Rod H

    “Cure”

    Don't worry guys I'm not a quitter. But my vision is really starting to go.
  12. 1 point
    Pebblesthecorgi

    Work and CH

    I keep O2 in my car and office at all times. I also have imitrex available at all times if I need a quick abort. Until recently I only got hit at night and rarely encroached on work. Busting has spaced out the cycles considerably but I am rarely less than 5 minutes away from O2 or injection even when I was 2.5 years pf.
  13. 1 point
    CHfather

    First time posting

    LazyG', I have a (pinned) post over in the ClusterBuster Files section about "non-busting" topics related to CH. I'd suggest you look at that for a sense of the landscape. Denny's post in that same section (also pinned) will lead you to info about busting.
  14. 1 point
    LazyGrind

    First time posting

    I know that O2 is just supposed to help while you're having the headache. Whats weird CHfather, Is that I had tried everything else and the longest i had gone in 10 years with out one was one month. I only had the tank for about 2 weeks and had only used it 10 times before they stopped. I kept it for 6 months thinking there was no way, But they never came back. I'm trying a sample of Emagilty tonight, Hopefully I can actually get 8 hours of sleep. Also, I will check out that anti inflammatory regimen!
  15. 1 point
    Freud

    Day-long low intensity episode

    Thanks CHF you’re a freaking wealth of knowledge. My parents are super supportive in every sense of the word but other than a simple web search one day reading and then explaining the nick name at dinner. They just rely on me to do all the research. Probably bc I have a medical degree... I am so grateful for them but you are a saint! Edit:For the community as well! You are such an asset for those that come here. For some one without CH your dedication is admirable!
  16. 1 point
    If.... IF....they're saying the have 5 Meo Dalt available then it is definitely a scam!
  17. 1 point
    Dallas Denny

    Micro Dosing

    G'mornin Phil As a guy about to turn 72, I can so relate....unfortunately, in my opinion, there's just not enough anecdotal evidence yet to show that micro dosing is an effective treatment for clusters.....a scant few claim success but 1/10th to 1/20th of a recreational dose (175 - 350mg) is not enough for most folks to reach a therapeutic trip level ! Dallas Denny
  18. 1 point
    ThatHurtsMyHead

    Describing CH to non-believers

    Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was sticking out like a skeleton you see at Halloween. Of course both fingernails were peeled off as well. We were docking a large boat and my fingers got caught in a cleat. I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up. I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere. I finished securing the stern and port of the boat before showing my friend what happened. He drove me to the emergency room where they reassembled my fingers. Oh and without any anesthetic. I'm immune to the anesthetic they use for nerve blocks. My peak pain through the entire event was maybe a 4. My pain tolerance is VERY high due to my years with CH I can only assume. I've had 3 kidney stones. Passed one of them. Kipp 5 to 6. Other two had surgery to remove and were maybe Kipp 3 tops. To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer. My K10's are much worse. Everyone is different, but pain is pain. Support for our CH family here is what's its all about. J
  19. 1 point
    e3rrA19363618q

    POSSIBLE FIX

    @FunTimes Hahaha I feel ya man. I got one right as my tattoo artist was shaving my arm. He looked a little perplexed. I was like "no judgement here right?" and did a bump. I never could have imagined these were a thing. Life was just normal. Then I hit 25 and it all changed. For a few months of the year anyways. I skipped a year once after using psilocybin and thought I cured myself. Then they came back for another 3. This year the Verapimil and indomethacin worked like a charm. I hope to everything Holy that it continues to work next season. I am sorry to hear you're chronic my man/woman. I couldn't imagine day to day. You're a legend for sticking it out.
  20. 1 point
    FunTimes

    POSSIBLE FIX

    EggMan You are getting the hang of it now.. Everyone reacts to things different and we do not have a set thing that will work for all. What works for you today may not work for you tomorrow and may work again for you next year. It does get overwhelming at times with all of the information here. I dont think anyone is claiming to have the real "cure" here on this site, if they do they are not around for very long. What you will find is all of the information on this site if what has worked for someone at one point in time. What you and I and everyone else does here is take in as much information as you can and try it all out tweaking it along the way until you find something that helps. Is you are ECH that can be a little harder because you dont know if your cycle ended or if what you did in the last few days worked and it chased your clusters away. I am LUCKY! I am chronic so I get to mess around all year round with adding and subtracting to my daily regimen to see what helps me the best.. It is all part of the fun I think my next thing I am going to try is facing south standing on my left leg when I take my jar of vitamin D pills and chase it down with a shot of Crown Royal Keep on trying and you will stumble on something to help
  21. 1 point
    Milelli, Yes, keep us posted on your progress. There seems to be a lot of pieces in this puzzle. Keep posting anything you turn up. The music I listen to is very relaxing and seems to be producing miracles. It's pretty much like meditation, just trying to clear my mind and chill. Things have really improved since I started to do it 24/7.
  22. 1 point
    jon019

    Imitrex in Vials - Huge Improvement

    "units' is EXACTLY the right word.... insurance-ese is like a foreign language...clusterheads gotta learn it... ...and always keep in mind....insurance companies operate in a twilight zone of up is down...black is white...yes is no...no is yes...don't believe what I say on Tuesday because it will change on Thursday. So, NEVER accept the first answer...and NEVER accept NO. It's a GAME...ya need to learn how to play...don't get mad...get busy. They WANT you to quit...DON'T. Use their own tactics on them...persistent refusal doesn't make them right...refuse to lose...sometimes they give up (THAT'S what they hope YOU do!). Sometimes they quote FALSE reasoning...as in: "that is not a medically acceptable/necessary/approved treatment for you". THAT would be known commonly as "bullshit"....because then they would be practicing medicine without a license...without having SEEN you as a patient. Get thee a willing Doc to fight for you....sometimes all you need is a "letter of medical necessity" indicating THIS is what the Doc has decided YOU need. Stuff in writing like that scares the pants off the "green eye shades" in the basement of Screw-You Insurance Company ( that's ALL of them...I don't care what the name on the bldg./website says). Vials vials VIALS...YES!! Twice the bang for the same price.....with no "McGyver-ing" involved. If your Doc...for some unknown reason... won't prescribe...ask the Pharm to sub out the Stat-doses for vials, and get a box of insulin needles. Try multiple pharmacies if necessary. As one Pharm told me...it's the SAME med...SAME price....doesn't matter to us. One way I got past limits: when the requested triptan script called for 12 ( I really needed 18)...the insurance company only approved 6. The Doc said Okayyy...watch this....and wrote another script for a different triptan (smart/savy lady). Approved without question...at a higher total cost to them than just giving me the 12 in the first place. YES...I know NOT to mix triptans...I ALWAYS waited at least 24 hrs between different meds (per Doc). It would be funny if there weren't fellow clusterheads suffering thru this maze w/o the right Doc and/or enough "pissed of and not gonna take this anymore". Best Jon
  23. 1 point
    Repost from my topic on clusterheadaches.com http://www.clusterheadaches.com/wwwboard2/index.html My name is Dr. Elliott. I have a Phd. in kicking ass and Googling shit. This thread will be for 2 years, 730 days. Like every good scientist, I will be experimenting on myself (lol, some sarcasm to lighten the mood) and whoever else is willing to do whatever it takes to be cluster free for the rest of their lives. The goal is to reach 2 years with absolutely no clusters, thereby concluding my "research" and cementing my finds, in hopes of being the man that shuts the door on CH and laughing in its face. Hypothesis: CH are caused by dopamine overdose/dopamine receptor overload. Dopamine plays a part in the hypothalamus (active region of the brain during CH attacks?) which controls the Endocrine system (trigeminal nerve, the one that fucks up your day). CH suffers are genetically susceptible to one adverse effect of "dopamine syndrome": Cluster Headaches. Through a "rebooting" of the brains internal wiring, dopamine receptors can heal themselves of the damage caused by overuse or overstimulation. CH suffers, being largely male, have overstimulated these dopamine receptors through masturbation. (RED FLAG, keep reading though). Our generation at least, has been able to constantly increase the limit cap of our dopamine receptors by finding newer and newer untapped dopamine banks due to the Information Age. Porn is always ready to give the dopamine receptors what they need, when they need it, something that may seem convenient, but is pumping the endocrine system with so much that the overwhelming amount of "dopamine damage control" loses its fucking mind when the seasons change and daylights savings occurs, resetting the hypothalamus, triggering a daisy chain effect. The Trials: Give up porn, give up masturbation. Sex is ok. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Who's in? I am currently on day 5. First Cluster Free day of my cycle. I have a very strange shadow going on that started dead center of my forehead, and is moving left. Just a moment ago it shut down my left nostril. My clusters occur on the right side. There is something very strange going on in my brain. I feel it really is being rewired. I hope this doesn't bite me in the ass and I end up having one tomorrow. Will update tomorrow, and every day after. I will find the cure for us, if not through this, somehow.
  24. 1 point
    You've got to have variations in your experiment. To help you out, I'll watch as much porn as humanly possible and see if I notice an uptick in my clusters.... -Ricardo
  25. 1 point
    Or tell anyone you caught crabs in Vegas.. ROFL...
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