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jms

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  1. Oxygen - definitely. My son also has been having CH for about 15 years. He's tried several medications and now only does the oxygen. He's also starting the D3 regimen and some busting. He's had very bad side effects from the medications. He started meditation several years ago and that has helped. We still fight the beast but thanks to the people on this forum we've increased our arsenal of weapons. It can be very frustrating when things seem to be working and then suddenly they don't work anymore. I try to think positively. There is a lot more knowledge about CH now than 15 years ago. Hopefully someone will solve this mystery soon and we can all find relief. I know it's painful to be a parent with a child who suffers from this.
  2. jms

    Conference takeaways?

    Thanks for the feedback. I would really like to attend these conferences but travel is not possible right now. It's good to hear the responses from those who attended.
  3. The TV show "The Doctors" did a segment today on CH. One of their staff members suffers from CH. I didn't catch the show but saw a clip on their website. I'm glad to see CH getting the coverage. Maybe more people will begin to understand what it is all about.
  4. jms

    new from south london

    Thanks for the good news. Hopefully you will continue to have good results with the mm.
  5. jms

    Update

    Sending prayers your way. Thanks for all that you do.
  6. jms

    Clusters + Heart Rate + Apple Watch

    Very interesting - keep us posted. It would be good to unlock the mysterious sleep connection. I'm guessing the heart rate went up as a result of the intense pain, but whose to say - it could have been the other way around, meaning the pain was a result of the change in heart rate.
  7. jms

    hello! newbie with some questions

    I am certainly not an expert on the subject but I'll give you my observations. My son has had CH for about 14 years. The pain is on one side only, not the entire head. The pain can shift sides but it is usually localized. His eyelid droops and the eye waters but I wouldn't describe it as "red". I don't recall the term "mild" ever being used to describe CH although the severity of the pain can vary, but this is serious, debilitating pain. Oxygen is one of the few things that actually does help alleviate the pain. I hope you can find the answers you seek. It can be frustrating dealing with these conditions because the symptoms often change and what works for some people doesn't work for others.
  8. jms

    Hello From Dr. Lisk

    Welcome - of course no one is actually glad to welcome one who is unfortunately affected by CH, but this is the place to come to where people understand. I hope your clinic makes the enrollment in a CH trial. This forum has been a great resource for information on CH and hopefully will lead to the ultimate goal - a cure!
  9. jms

    What's it going to take?

    Thanks very much for the replies. I really appreciate this forum for the support and information from you all. Regarding a cure, I understand the part about the drug companies and profits - that there aren't enough numbers to make the research and development worthwhile. And I know that CH is considered "rare". But sometimes it's not the amount of people involved but the loudness of the voice that gets attention. I would like to attend the "Headache on the Hill" next year.I think weatherman is spot on when he says "someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news". Until then we will keep battling the beast. It's been 14 years so far. O2 has been a blessing and we've dabbled in some other busting techniques and continue with narcotics for pain. Most of the other prescribed medicines were no help at all and may have actually caused more CH. It seemed like he was chronic when he was taking all the triptans. Since we quit those he is now episodic. Thanks again for your support.
  10. As a mother who has to watch her son suffer so much pain I am wondering what is it going to take before we find a cure. What can I do? Who can I write to? I read the Facebook pages and see so many others who are victims of this condition, either directly as a CH sufferer or a caregiver of someone. There's got to be something we can do instead of watching helplessly and waiting for the time to pass. I am open to any and all suggestions. I know I must sound like a broken record to many who have asked the same question. But with the internet and social media, maybe there is a way we can rally together and prod the powers that be to step up the research. Thanks for any feedback you care to share.
  11. jms

    An interesting find

    Interesting read. I never heard of the chlorophyll theory before. Thanks for posting the article.
  12. jms

    Homeostasis

    Thanks very much for posting this discussion. I have been trying for over 10 years to solve the mystery of my son's CH. This information gives me a lot to investigate further. I appreciate the fact that you all have dumbed down a lot of this to layman's terms that I can understand. One thing that has been nagging at me lately is that the CH "event" leaves very quickly. For example my son tells me that he can be in extreme pain one minute and then the headache all of a sudden can be gone in the next minute. I know this is grasping at straws but can that "feature" of the CH be a kind of clue to the mystery? I'm just thinking outside the box as some have suggested, I think it's going to take those of us who are affected by this "condition" to further the momentum on solving this problem. Thanks again for the discussion!
  13. jms

    please help me help my son

    Kmom, my son also has CH and is suffering from them now. We've tried many drugs prescribed by his neurologist but with bad results. Oxygen has been the best treatment so far. We have a huge tank in his room and a couple of smaller tanks. He take hydrocodone for pain with limited success. We are looking into other options that have been suggested on this board. All we can do is try new things, hope and pray. There are new things on the horizon. You are not alone.
  14. Thanks for the reply. However we have been using O2 and it's not enough. We've tried several meds in the past but the side effects have been bad and they don't necessarily take the pain away either. I was just wondering if there is a last resort drug that would work.
  15. If one goes to the emergency room for CH, is there a typical drug that is given for the pain? Can you request a certain drug? We've had bad experiences with steroids and certain other drugs. Also, has anyone experienced a "heaviness" feeling or tension in their chest during CH?
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