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Brian McAndrew

Quercetin! Very effective treatment for me!

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Posted (edited)

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.

Edited by Brian McAndrew
added precautionary statement

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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! :)

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Posted (edited)
On 5/23/2020 at 5:15 PM, spiny said:

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! :)

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.

Edited by Brian McAndrew
missed information
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On 5/23/2020 at 11:26 PM, Brain on fire said:

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.

 

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/

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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/


 

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Thanks for the links Brian and Pebbles! 

Citizen Science at work. Again. 

Nice!

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On 5/25/2020 at 12:22 PM, Pebblesthecorgi said:

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/


 

Thanks for those links as well Spiny. I had belonged, for a short while, to another cluster forum around 2010 when I was finally properly diagnosed. I didn't want to go saying something unless I was confident. I also did a search on the site to see if it was mentioned already before I posted. I did a lot of research and was very cautiously optimistic about it. It took a week of completely pain free time before I even started to let myself believe it. I have been disappointed enough times thinking I had something that worked and then, boom. The regular dose was supposed to be 1,000mg. I had 500mg caps and decided to do half the regular dose to try it out. It worked for the first 3 weeks of the cycle before I increased to the regular 1,000mg.There have been a couple times that I took an extra 500 in the evening before bed but only a couple. Like you say, it fits the positive-risk-benifit-cost niche. cheers

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Well I'm giving quercetin a shot. I've been in cycle since April 22 and have just been using pred and verapamil for meds. O2 and Rockstar to abort. Will keep ya posted today is day 1.

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On 5/30/2020 at 11:44 AM, Rod H said:

Well I'm giving quercetin a shot. I've been in cycle since April 22 and have just been using pred and verapamil for meds. O2 and Rockstar to abort. Will keep ya posted today is day 1.

Good Luck. Don't do the Verapamil while doing the Quecetin though. it intesifies the effects.

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I haven't used verapamil or pred since Thursday of last week. Paid for that fri night. So started the quercetin sat am got hit 1x sat eve late. Was mild then again sun eve late 1x again mild. Is it quercetin? I don't know just trying to get to 5 days of no pred. Will continue to report. Last fri was hell thou every 70 min kip 8-10 drank 7 Rockstars and went through 2 tanks of o2.

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14 hours ago, Rod H said:

I haven't used verapamil or pred since Thursday of last week. Paid for that fri night. So started the quercetin sat am got hit 1x sat eve late. Was mild then again sun eve late 1x again mild. Is it quercetin? I don't know just trying to get to 5 days of no pred. Will continue to report. Last fri was hell thou every 70 min kip 8-10 drank 7 Rockstars and went through 2 tanks of o2.

HI Rod. I'm new at this with the quercetin. I started at the start of my cycle on about April 15. I sounds like our cycles are very similar in frequency and intensity. I can really feel your pain. It sounds like the quercetin is starting to work though... I started the quercetin with a 500mg cap in the morning for the first 3 weeks then got a mild attack (rough night and morning) and upped my dose to 1,000mg in the morning. I sometimes do another 500 in the evening if it looks like I'll need it.  I have had about 5 or 6 mild attacks since I started using it and those were easily taken care of with an 02 concentrator that I use instead of a tank.

Have you ever tried or thought of using magic mushrooms for a treatment. I live in BC Canada and it is not hard to aquire and the laws for it here are very relaxed. Using it for medical would also help in any legal matters. I am not sure of your situation, opinion on it or whether you have heard about it. A small dose, enough for a light 2 beer comparable buzz, lasts about 4 hrs, will in 4 days time, kill the cycle.

This condition is crazy though, I read a report by a doctor who observed that during heavy solar activity, medications were less effective and the cycles would start earlier and end later. I have observed similar situation with some of my bigger attacks that over rid the medications.

The Quercetin is quite safe and it should be ok to up your dose past 1,000 mg per day as I have sometimes. try morning and evening dosing.

Keep in touch and good luck brother

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Thanks for your concern. I've been around here awhile so I'm familiar with all options available. The quercetin I bought is in 1000mg capsule and is recommended for 2 a day which I have been taking 1 every 12hrs. I'll be honest as of last night the train went off the tracks and not putting much faith in it working for me. But I will give it 2 weeks for a fair shot. Unfortunately I have to wear a covid mask at work and I think it has triggered this episode and is making it worse. So with my lacking of o2 intake is anything gonna work? 

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I took Quercetin and it did nothing for me but I’m chronic but I was hoping for a miracle. 

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Yea it didn't help me after a week I went back to verapamil. Which really hasn't been that great this time around either.

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I know it's been mentioned above, but anyone considering quercetin - it's doubly important to speak with your doc if you're on verapamil. Below is from WebMD:

Medications changed by the liver (Cytochrome P450 2C8 (CYP2C8) substrates) interacts with QUERCETIN

Some medications are changed and broken down by the liver. Quercetin might decrease how quickly the liver breaks down some medications. Taking quercetin along with these medications that are changed by the liver might increase the effects and side effects of your medication. Before taking quercetin talk to your healthcare provider if you take any medications that are changed by the liver.<br><nb>Some medications that are changed by the liver include paclitaxel (Taxol), rosiglitazone (Avandia), amiodarone (Cordarone), docetaxel (Taxotere), repaglinide (Prandin), verapamil (Calan, Isoptin, Verelan), and others.

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On 6/26/2020 at 9:22 AM, freester said:

I took Quercetin and it did nothing for me but I’m chronic but I was hoping for a miracle. 

I'm pretty much chronic as well. I have 2 very heavy 2.5 month cycles and in between cycles I don't go more than 3 or 4 days without a problem. I'm 66 and had it all my life. Treatments for this seem to be different for everyone and also they can randomly not work at all some times. I was very lucky to find the quercetin for me. I have still had some bad days this cycle that I needed to get on my oxygen concentrator. good luck with your search for something effective.

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5 hours ago, Dan_ said:

I know it's been mentioned above, but anyone considering quercetin - it's doubly important to speak with your doc if you're on verapamil. Below is from WebMD:

Medications changed by the liver (Cytochrome P450 2C8 (CYP2C8) substrates) interacts with QUERCETIN

Some medications are changed and broken down by the liver. Quercetin might decrease how quickly the liver breaks down some medications. Taking quercetin along with these medications that are changed by the liver might increase the effects and side effects of your medication. Before taking quercetin talk to your healthcare provider if you take any medications that are changed by the liver.<br><nb>Some medications that are changed by the liver include paclitaxel (Taxol), rosiglitazone (Avandia), amiodarone (Cordarone), docetaxel (Taxotere), repaglinide (Prandin), verapamil (Calan, Isoptin, Verelan), and others.

I totally agree with this.

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21 hours ago, Rod H said:

Yea it didn't help me after a week I went back to verapamil. Which really hasn't been that great this time around either.

Crossing my fingers still with this myself. It has been very effective but there have still been a few times that put me on oxygen for several hours. Varapamil worked not bad at the start for me, then the side effect of getting loss of breath and easily exhausted became more uncomfortable. Even taking magic mushrooms at the start of the cycle worked amazing to blow the cycle each time for a couple years, started not working so well. This condition was brewed up in hell by some evil witch

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