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Showing content with the highest reputation since 05/25/2019 in Posts

  1. 2 points
    Freud

    How powerful is the mind??

    If there is anything I have learned about CH and people in remission and changing CH is that coincidences are common. Wether it’s a wackey “cure” someone thinks they found only to have their CH return the next year and the same thing not work at all. CH is always changing. It’s a crazy coincidence that he got one the same day. It’s stastically crazy that your wife got them and you knew some one that has them. There are only about 400k people in the US with them. I have a friend that went the welding O2 route and it just so happened the guy that owned the place has a son with CH so he could talk freely about what he was going to use it for. I mean what are the chances. I’ve won the lottery on a lot of medical problems and I thought my chances of winning the lotto are better than getting Chronic CH but here we are.... sorry your wife is suffering. Have you clicked on the blue button on the top of the page to see what this site is all about? There are other good options to get rid of the beast or prevent it in the future if you know when your cycle starts.
  2. 1 point
    Psiloscribe

    Patient Registry

    Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters
  3. 1 point
    eileenbunny

    2019 Patient Conference

    14th Annual Cluster Headache Patient Conference Talent Show September 19, 2019 We are excited to showcase some of the most talented Clusterheads at this year’s conference. If you sing, dance, play an instrument, or do anything else exciting (and suitable for an audience), we want you to audition! Please send your video to Timf1913@aol.com by July 15th, 2019. The top 10 will perform on Saturday, September 21, 2019 during the Clusterbusters Farewell Dinner. You must be available and plan to attend the conference in order to apply. We may be limited in the A/V equipment we can supply so please plan accordingly. We will post results of the auditions on Facebook and our website event page on July 30, 2019. We will also be providing a display area for anyone that wants to display their talents. Let Tim know at the above email address if you’d like to display your visual art. Space may be limited. We’ve witnessed a lot of great talent over the years and we’d love to have you share it with the rest of the community. Let’s show The Beast what we can do!
  4. 1 point
    CHfather

    oxygen

    '96, Suggest you get a sense of all your options. O2 is essential, but other strategies, like the D3 regimen and busting, can also make a big difference. Please see this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Note that Dave D says, "I'm one of the fortunate ones that have found success with O2 concentrators." Most people don't get real success with concentrators. In the file above, you can learn about (and further link to) welding O2 information. You shouldn't be denied by your insurance (unless it's Medicare, Medicaid, or another government program, which won't pay for O2 for CH), but welding is a good way to go.
  5. 1 point
    MoxieGirl

    How does the Beast return?

    Question for my Episodic friends. When the Beast returns after being away for awhile, how does it do it? Does it pounce on you without warning with a full-force cluster attack? Or does it give you some warning, build up over a few days, for example? I've had more clusters this month than normal, and they are getting longer and sharper, with more intense after affects. And, closer together. I've had 3 in the last few days when I normally have 1 a month, maybe two, but very spread out. It feels like the beast is roaming around the outskirts of my village, poking at the boundaries, preparing for a proper attack. Testing my defences. Is that normal? Should I be worried? Mox
  6. 1 point
    Batch

    Is ch linked to dental work?

    Hey Dana, Infections of any kind can affect the frequency of CH. Gingivitis can also occur even when people have a good dental practice brushing daily. The problem is usually diet. Sugars and starches metabolize in the mouth to feed bacteria responsible for gingivitis. Avoiding sweets, brushing after meals, and high doses of vitamin C at 4 to 6 grams/day can do wonders. Take care, V/R, Batch
  7. 1 point
    FunTimes

    WORRIED sick.

    In addition to the oxygen I will also down a 5hr energy drink to help slow down the ramp up time of the attack. ad CHfather said your oxygen needs to be at a much faster rate. you can get a regulator online that will allow you to set it at 25 lpm and once the attack starts to level off you can lower it as needed. the D3 regimni helps a lot of people and will take a few days to kick in but no harm in starting that and staying on it all year round. I also add Benadryl to the mix during season changes and I take 20mg of Melatonin before bed every night to help with the overnight attacks. Non of the things mentioned above have solved my issues and cured me but they all help a little. I was at one time getting kip 10 hits several times a day lasting up to 3 hours long. At this point I average kip 5 hits lasting about 15 to 30 minutes with occasional kip 8's. I also depended on the triptans taking several shots and pills a day and that also seemed to help with the amount of hits I get. I now save that for the real bad ones and only take them maybe once every other month when i really need it. I am in the NE part of the US and have been getting hit hard the last 2 weeks or so, I think it may have something to do with the weather in this part of the country but like it always does things will calm down and better days are ahead.
  8. 1 point
    Mjedwards409

    How powerful is the mind??

    Supporter here for my wife who is going through her 3rd cluster. A former coworker of mine who has since retired battled CH for nearly 30 years. He's in his late 60's and has been in remission for nearly 6 years and is now living his retirement dream golfing and fishing in Florida. He started the D3 regimen back in 2014 before his fall cycle started (amongst other things) and was able to drop all of his CH meds. He was always episodic with his clusters in September and October. I called him two weeks ago to let him know that my wife was back in cycle and to get his advice on a few things, including Verapamil which he used to take. That night, after 6 years, my buddy had a CH and has had it nightly since. He has never had a CH outside of Sep-Oct in his life, and after a 6 year remission he starts getting hit the day I called him and brought up CH. This is amazing to me. (In a negative way) It makes you wonder just how powerful the mind and subconscious may be when it comes to pain, illness, etc. Is it more likely this is just a terrible, terrible coincidence? Luckily the CH's have only been once per night, and according to him haven't gotten over a 5-6 since they started. To my surprise, he had never tried Oxygen in his life before I brought it up to him, and he was able to obtain an E-Tank from a friend in the medical profession and has been aborting in 5-10 minutes. (So if nothing else good comes out of this, now he can proactively get Oxygen before his future cycles knowing it will work) EDIT: I hope it goes without saying, but this is not to say that I'm suggesting the pain is somehow all in one's mind. After seeing my wife (who has an extremely high pain threshold) go through these, I have zero doubts that nothing we humans feel can compare to CH. My only curiosity being thoughts and theories on the mind being able to trigger the beast.
  9. 1 point
    LennyC

    OHSU Psilocybin Study?

    Go to the Theory and implementation board, lots of instructions there
  10. 1 point
    jon019

    How powerful is the mind??

    ...real interesting topic!....I've seen numerous clusterheads say they don't come to the forums when in remission because of fear of triggering....never heard that it actually happened...for me it made no difference... whether episodic, chronic or shadowy (now)….but I totally understand..... ….twice in my 38 YR CH career I was actually able to think away a hit...it was during a period where no meds were working and I was just so pissed and frustrated that I needed SOMETHING else....the effort was so exhausting and required such determined concentration that it was impractical for the 3-8 hits a day I was having...but I've always wondered...……..
  11. 1 point
    MoxieGirl

    How powerful is the mind??

    Hi MJ, Sorry to hear about your wife and your friend. I do believe that talking or reading about clusters can trigger clusters. Other people on the forum have said the same. I know when I was getting a lot of clusters, spending time on the forums would trigger them. But, it's all very subjective. I've never used O2. Will do if they come back in force. Once your wife goes through all the more traditional methods, we'll still be here. Hope she finds something that works for her. Mox
  12. 1 point
    Mjedwards409

    How powerful is the mind??

    Thanks Freud. Yes I've done a ton of research on all of the options. (I've read all the stickies and probably gone 4-5 pages back on every section of the forum) Her first two cycles she never had more than 1-2 CH's per day, and both were less than 5 weeks. (Her latest cycle was 2015 before this one which she was able to cut to 2 weeks with the D3) She was only properly diagnosed this time around and she's trying some of the common pharma solutions. She's certainly open to the alternative therapies if this cycle proves to be longer/more stubborn than the first two. We were able to get medical O2 prescribed and got a few M-tanks for a surprisingly good deal considering insurance won't cover it. She just got off a 2 week pred taper yesterday and she's been on 240mg of daily Verapamil since the day she started the pred. Super low I know and they gave her the ER and it wasn't until afterwards I read how immediate release works better. :-( She's been PF since the pred started but we both know that means nothing - her first cycle the pain came right back after the prednisone was done so we're under no illusion she's out of the woods. That said, she's also done the full D3 loading so we're praying that either the HA's will stay gone this time around or be reduced in severity that they can be easily controlled by the O2. Long story short we're open to the other methods but she wants to try some of the more traditional methods first.
  13. 1 point
    CHfather

    oxygen

    Well, don't keep it a secret, Dave. What is it? (I think you mean lower lpm rates (flow rates), right?) For most people, spending $250-500 for a concentrator is definitely not the right way to go, when a pretty glorious setup using welding O2 would be possible at the lower end of that range, but if it works for you, that's what matters.
  14. 1 point
    Dave D

    oxygen

    Greg, 25 year sufferer of CH here... O2 is the only cure I've ever had. Thanks to a willing general practitioner I met 10 years ago who wrote me a prescription and worked with my insurance company, I was able to discover how wonderful it was. She has since moved away and my CH have gone away and come back, and it is a bit of a hassle to try to find understanding and knowledgeable doctors willing to help. The first thing they want to do is prescribe migraine drugs that do nothing and sometimes make CHs worse. CHs came back last week and rather than bothering with the prescription/insurance/rental route, I went on craigslist and found several affordable resale oxygen concentrators for sale. I'm one of the fortunate ones that have found success with O2 concentrators. 10-15ml is ideal, but they are expensive. I purchased a 5ml concentrator today and have already used it with success. I have a technique that I use that cures my CH even with lower ml rates. My advice is if you can afford it ($250-500), try CRAIGSLIST. hope you find CH peace. Dave
  15. 1 point
    xBoss

    OHSU Psilocybin Study?

    I'm on year 22 with CH. I had complete success last year with MM.
  16. 1 point
    I’d also recommend clicking on the blue new users button at the top of the page. Read the whole thing. You want to educate yourself on the whole process and how to ensure your comfort and safety. You’re going to want to buy a cheap but decent gram scale on amazon that goes to to the hundredth place for 100g and under. So it could measure 0.01g. That should be 15-30$ depending on the scale. This next part is copied from a previous pist I made in response to the same question as you: “It is important that you are off all meds that could block the mm from working. Examples include many psychiatric drugs, triptans (sumatriptan aka imitrex or any drug in this class) steroids and a few others that escape me at the moment. You need to obstain from the usual culprit of triptans for 5 days prior to busting/ dosing. Microdosing does not work for clusters. You need to reach a threshold dose where you feel the effects of the mm but don’t necessarily have a significant trip. That “I’m almost tripping” feeling does it for most of us. This is usually achieved at doses of 1-1.5g. Some people can go as low as 0.5g but we generally recommend 1-1.5g. This dose is repeated 3 times 5 days apart. All the while no sumatriptan injections or any other blocking meds. During this time O2 is your best friend. Some people use energy drinks with success as well. I think that’s enough to get you started I’ll post some links in a bit to stuff permanently posted here that you should read prior to busting. “ If you’re dosing to prevent a cycle (are you episodic or chronic?) than people have found that dosing one month before cycle usually starts and follow up dosing every month there after upto and including the last month it usually lasts for. This has been most successful. If you’re chronic let us know and we can discuss things some more. Do a little research and come back to us explaining what you’ve tried, what helps, do you have oxygen... share your story so we can help you more.
  17. 1 point
    Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing: https://clusterbusters.org/forums/topic/4983-episodic-to-chronic-advice/ Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips". I realized it wasn't gonna kill me, why should it disable me? My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...
  18. 1 point
    MoxieGirl

    Describing CH to non-believers

    Hi Paul, Welcome to the forum, sorry you have to be here. Looks like you're getting good advice from Freud. He's a good man, and a good friend, with lots of experience on these matters. I've been on CH forums since mine started in 2007, and every so often the conversation of the name 'cluster headaches' comes up, and I don't know of any sufferer who agrees the name is apt. You're right, they aren't on the same scale as a headache, not even in the same universe. And, not everyone (like Freud and myself) have them in clusters. I've been chronic since they started in 2007, although thankfully, shrooms have allowed me to bring them under control and they no longer disrupt my life. Personally, I call them 'cluster attacks', because that's what they are, and attack. I think one of the greatest powers of this forum, and others like it, is to let people know they aren't alone. The pain, fear and frustration you feel is felt by others, and we do get it. And, even more so, there is hope. There are things that work, even if they aren't doctor approved. It is possible to get on top of this beast and get your life back. Not always easy, but possible. Mox
  19. 1 point
    As a sufferer for over 30 years... I’ve tried so many treatments that didn’t work... you have to keep trying until you find something that helps you - if not reduces them. As far as Dr’s saying it’s not healthy - me being over medicated from Pain is not healthy - my lack of sleep - is not healthy- different drs trying to give me blood pressure medicine when I don’t have high blood pressure - is not healthy. Keto has been used for years to treat epilepsy and so much research is out there supporting it - if you don’t want help and don’t want to try it - there is absolutely no reason to discourage others. I found out something that works for me - and the medical study showed it helped 86% of the patients. It is strict - less than 10% carbs but once you learn it you can very easily do it! People say Keto is hard - I say having clusters every single night is HARD— not having a life because of clusters is HARD - not being able to enjoy the sun because heat is a trigger is HARD - choose your hard! I don’t care if it’s been mentioned a million times .... it wasn’t mentioned by me! I am not spamming and I will not stop sharing my story and what is helping me. If can help just one person it’s so worth it!
  20. 1 point
    Batch

    Looking for advice

    Hey Clusterwife06 and Maddie3, Take a look at the link titled "D3 Regimen for CH' in the Theory and Implementation section. It has everything you'll need to take control of CH. You can also click on the following link, it will pull up this same post. Take care and please keep us posted. V/R, Batch https://clusterbusters.org/forums/topic/6194-d3-regimen-for-ch/
  21. 1 point
    FunTimes

    2019 Patient Conference

    Are you going to have a raffle table set up this year and if so how do you go about donating to it? What other ways can people help out with this event?
  22. 1 point
    MoxieGirl

    Cluster rules

    I'm a sailor too. Am so very addicted to it.
  23. 1 point
    Bilal

    My D3 Regimen Log

    It's been almost a year since I last posted. I guess it's true that you tend to take your health for granted. Fortunately, I've had the luxury to do so this year. I'm glad to report that ever since I started the D3 regimen I've been completely pain free. No more headaches, and not just CH. I don't recall having any kind of headache in almost a year. I've been thanking God and the fine people of this site that directed me to this regimen whenever I can. To those of you still undecided, please give the D3 regimen a chance and stick to the guidelines. And to the people on this forum that helped me, from the bottom of my heart, THANK YOU.
  24. 1 point
    Dallas Denny

    Pain down neck and into shoulders

    Quite common among clusterheads to get a "cluster knot" in their neck and shoulder on their cluster side and I am most definitely included in that group! Dallas Denny
  25. 1 point
    This is something I've heard people say as a suspicion but I've never been able to find any study investigating it. Do you have any info on this? -Ricardo
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