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  3. spiny

    Quercetin! Very effective treatment for me!

    Thanks for the links Brian and Pebbles! Citizen Science at work. Again. Nice!
  4. Tony2

    Verapamil helping, hurting, or doing nothing?

    To follow-up: I think the Verapamil helped a little. I was on 240 mg extended release. I started taking it a week after my cycle started so I didn't get to see the benefit over a full cycle (~40 days for me), and the middle of the cycle is typically the worse. I got the same amount of headaches as my prior cycles, but the severity was down based on reading my notes from prior cycles (pain scale of 1 to 10). I believe my current cycle is finished, but I can only truly determine that after having alcohol. I always wait a couple of extra weeks just in case the cycle isn't over. CHfather, thanks for the info / tips. I hope everyone is hanging in there!!!!
  5. Pebblesthecorgi

    Quercetin! Very effective treatment for me!

    On first seeing this post I thought "here we go....". After doing a bit of research I'm thinking it is worth consideration. It kind of fits in that positive-risk-benefit cost niche. Due to Covid, there is a lot of "everything but the kitchen sink" philosophy going on. A quick database search shows several institutions are actively researching the potential of quercetin in treating the virus. Previous work was done on other global viral threats which wasn't negative. It has a reasonable theoretical foundation, is available and not too costly. It has a purported mechanism of action to decrease inflammatory cascades which is what most cluster treatments seek to interrupt. Certainly Vit D (with all its components) seems to be beneficial for many cluster headache sufferer's. It has a strong anti inflammatory mechanism. Unfortunately Vit usefulness in treating active Covid infections is turning out to be disappointing. THe jury is out on prevention with Vit D but thats a much harder study to complete. Quercetin has some safety data available. In a study of folks with chronic obstructive pulmonary disease (COPD) up to 2 grams a day seemed safe. COPD individuals are generally quite unwell so its not a reach to extrapolate safety to otherwise health folks. Many cluster headache folks have or do try the "kitchen sink" approach seeking manageable solution. So trying this isn't wacky. As always watch for contraindications, use the lowest effective dose and report your experience. Case reports and self reports never constitute "proof" but they lay the foundation for further work. Something to consider. A couple of readily gathered reports: Overview of quercetin in inflammatory conditions https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5214562/ Safety of quercetin in chronic obstructive pulmonary disease (COPD) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7047491/ Quercetin in blood pressure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015358/
  6. Hi all. At this time we are still planning to host our conference in person. The health and safety of our attendees is of utmost importance to us. If we determine that it is not wise to host an in person conference in September we will host a virtual event for those dates and consider rescheduling or cancelling. As we learn more about Covid-19, we will keep you updated. As you know this is a rapidly developing and changing situation. Thank you for your patience. In light of this, we have decided to take registrations without payment moving forward. If we have an in person conference, the price will be $150 and payment will be taken at the door. If we have a virtual conference the price will be $40. For those that have already paid, refunds for part or all of your conference registration fee will be available to you in the event we cancel or you decide not to attend. Please register if you believe you will attend one or the other. We will still need a head count. For more information, head here: https://776176229.planningpod.com
  7. Brian McAndrew

    Quercetin! Very effective treatment for me!

    I am sorry for your friend. I don't know what research would support that kind of treatment. Thank you for your comment and concerns. I have done much research and don't take things lightly. 1,000mg per day is a normal upper limit dose. If taking for more than 12 weeks it may be good to consult a doctor. Although there have been no studies to say it is not safe. I understood the medications that I was being prescribed and that Quercetin affected the same receptor. I am more confident of an entourage effect medication than a targeted pharma type. In doing anything though check with doctor if you are pregnant or taking any other medications, .... normal precautions for anything. I have my family and close friends on 500mg a day for its possible Covid19 protection. I take 1,000mg Vitamin C to help the quercetin to metabolize. here are some links on it and covid19 as well https://www.mcgilltribune.com/sci-tech/montreal-researchers-propose-a-treatment-for-covid-19-170320/ https://regenexx.com/blog/coronavirus-episode-9-can-quercetin-help-covid-19/
  8. Brian McAndrew

    Quercetin! Very effective treatment for me!

    here are a couple links on it for the Covid19. https://www.mcgilltribune.com/sci-tech/montreal-researchers-propose-a-treatment-for-covid-19-170320/ https://regenexx.com/blog/coronavirus-episode-9-can-quercetin-help-covid-19/ I don't have any research on quercetin for cluster headaches, it was just putting a few things together and then checking it out on myself and found that 1,000mg in the morning each day now that I'm in my cycle, has brought a normally killer time, to a near stand still. It can take 20 minutes or so on the oxygen concentrator to kill an attack. Sometimes it just keeps it at bay and stops it from getting worse, but it may still hang for several hours. It is a very well appreciated therapy for me. Got it beside my bed. Since taking the quercetin, the couple times I did have a problem, it went away very quickly on the O2 concentrator.
  9. Brain on fire

    Quercetin! Very effective treatment for me!

    The person injected still has a D3 level well over 200 & has had no relief from CH. Remains hospitalized.
  10. Brain on fire

    Anyone tried Wim Holf's method for CH?

    My vitamin D has always tested just fine & I still had CH.
  11. Brain on fire

    Quercetin! Very effective treatment for me!

    Please, thoroughly research and check your sources carefully. "natural supplements" and "vitamins" are not "totally safe" or "non toxic". People can easily have complications when taken without a full medical history, labs & medical supervision. For example, I can't take vitamin D, Calcium or Niacin. The later would kill me, it is toxic to my body. I know a young person who was injected with 2 million units of Vitamin D by 'a very helpful knowledgeable' person in September of 2019. It was not an MD, the person had no medical history for the person injected & no labs had been done. That young person was away from home attending a conference, has spent very little time out of the hospital since and the long term effects are unknown.
  12. spiny

    Quercetin! Very effective treatment for me!

    That ACE2 receptor. I have read a lot about it recently. And actually have Quercetin on hand due to COVID. This is an interesting find. Did you save the link to their work? You get relief with an O2 concentrator? That is great, because it seldom works for us and O2 in a tank is a lot more expensive. Two thumbs up! It is very nice to read of relief in the community!
  13. Welcome dehabel! What a lovely break you had!! I am sorry to read that it is over now. Barometric Pressure changes and for some, pollen as well, can bring them out to play. I was granted a 10 year hiatus that ended when I moved to the northern part of the state and into the mountains. Went from mild chronic to a normal, this really sucks CHer. With this site, I got it under control and life is pretty normal now. I moved 16 years ago and they come on time, every time if not prevented by me. Vitamin D3 Regimen has been a huge help for me and many others along with other methods that you will read about on this board. I have yet to meet a person who actually 'aged out' as they like to call it and I know several over 70 years old. I strongly suggest you check out the D3 Regimen. It can offer great relief and is plain old good for you vitamins. Are you on any meds for yours now? It is suggested to read a bit on here to get the most benefit from the Site. You can key in what you want to look at in the space by the magnifying glass icon at the top right of the page. Were you chronic or episodic? Did you get O2 and do you still have the rig? It can be a big help to slam down an energy drink or shot at the first sign of a hit. I use iced coffee most times. Ask a lot of questions if you want. We encourage that and reading too. You will learn a lot, very quickly. ATB!
  14. Into Light

    Stephen King

    thanks @Tony Only , i’m very sure i busted the ch on my third dose. issue is multiple comorbidities with similar symptom set: chemo, new chemo, newly diagnosed sleep apnea, head trauma in dallas and, temporarily, prednisone withdrawal after gout attack. i’m grateful that it’s obvious i busted the ch. lux
  15. I am new to this forum and before posting, I did a search for the word quercetin, incase someone else has stumbled upon this simple substance that puts close to a full stop to the headaches. I have been taking 1,000 milligrams of quercetin, a natural bio flavanoid under natural health products and have been headache free so far, 5 weeks into my 10 week cycle. below is a short version of my story. I am 66, living in BC Canada and have Cluster Headaches all my life, first hospitalized in 1972 at 17. I get a 10 week cycle, twice a year, pius disturbances outside my cycle. I wasn't properly diagnosed till 2010 when I was 56. I take melatonin at night, learned about my triggers and how to avoid them. I discovered magic mushrooms on a forum and have been able to access and dose when I needed. Mushrooms worked very well but aren't a 100% and it wasn't always comfortable for me to take them. Also it is not for everyone. I had gone to a neurologist and was put on Varapamil, as a preventative, a blood pressure medication that affects the ACE2 receptor. It worked somewhat, but had unpleasant side effects, so I stopped it a couple years ago. I had been following the Covid19 situation and stumbled across 2 Canadian doctors researching Quercetin, a natural bio flavanoid as a preventative prophylactic. They found that it blocks the virus from being able to enter the body thru that ACE2 receptor and also interferes with the protein cycle of the virus. It is now in the top 5 hopefuls with 80 other things in 60 day trials in China. I ordered some for that reason but also to check if it would help stop my cycle as well. I was at the start of my cycle, mid April to July 1, had a few episodes already and the quercetin arrived so I started on 1 @ 500 milligram capsule a day. Right away and for 3 weeks I didn't even get a hint of a headache attack. After 3 weeks I got a low level attack at night that went away very quickly when I put myself on oxygen. (I have a concentrator by my bed). The next day I increased to 1,000 (2 caps) a day and it is now more than 2 more weeks later and I have experienced only 2 more very mild and short episodes. I have found it to also have several other healthy effects on my body and well being. I was cautiously optimistic at first, as this is a very persistent condition, but I am feeling like that ever present threat is disappearing. This is a safe, non toxic natural supplement like taking vitamins. Always consult a doctor for any complicatons with other medications or pregnant or..... It cost me $75 CDN for 200 caps. $0.35 CDN each. Can't get much better than that.
  16. Hi all, I am new to forum and have a question. I am a long time sufferer of cluster headaches, since I was a young teenager and I am 51 now. Moved to SC from Florida in 2011 and was in the middle of a cluster, it ended in October of 2011. Was in SC for eight years and never had a spell. We recently moved back to Florida, in June 2019, and here I am with a spell of clusters that started quite mildly about three weeks ago. Does anyone have any insight to this? I thought I was done...
  17. Brain on fire

    BOF

    Still laughing!
  18. Brain on fire

    BOF

    Discovered why & quick check of my profile saw my research was noticed. That IS funny!
  19. Tony Only

    BOF

    It's probably some odd ratio of posts and likes and such. Pay no attention to leaderboards it would be nice to see more than 4 though.
  20. Brain on fire

    BOF

    I thought briefly it was the math learning disorder. Nope 2+2=2 & the numbers don't add up. 624, number 4 on the All Time has just over 300. Oh well. Signing off.
  21. Earlier
  22. Tony Only

    CHfather

  23. spiny

    Smile

    Brain, he is not 'bumping' this thread, he is hijacking it. The junk is deleted now. Smile!
  24. kat_92

    Indomethacin and dizziness?

    @EyecePick I can second @MoxieGirl comment. You must eat it with a meal. Not just a granola bar or something but an actual meal. The first time on an empty stomach I took it and I was dizzy drunk feeling for hours. The worst side effect of this medication for me has been a pounding headache for hours the next day. It was so bad it made me want to give up on the medication. I say stick it out at least a week to give it a chance. Kat
  25. MoxieGirl

    Indomethacin and dizziness?

    Yep, nasty stuff Indomethacin. Effective, but not fun. Best advice, eat food before or with it, I found that always stopped the dizziness. And, feeling like you're seriously drunk is a good description. But, food makes a HUGE difference. Seriously huge difference. Can't stress it enough. Mox
  26. spiny

    Anyone else having this oxygen issue?

    With the O2 Cluster Mask, you will receive a mask and a tube. The tube is used by those who cannot take the pressure of the mask on their face during a hit. The tube, you stick in your mouth and inhale through your mouth and exhale through your mouth or nose. Just make sure you are inhaling strictly O2 - through the mask or tube. No outside air in at all! Pure O2 is the best way to kill a hit. That is why a concentrator does not work well. It is not pure O2.
  27. Brain on fire

    CHfather

    You are missed. Get well soon! ((((((Hugs)))))
  28. Brain on fire

    BOF

    I'll heal from all of it, it is what I do. It is what we all need to keep in mind. There is hope, there is healing, there is love. We could use more of the later.
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