Cluster Headache & Clusterbusters
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- čas přidán 26. 07. 2024
- Episode 151: Lindsay Weitzel, PhD interviews Bob Wold, the Founder and Executive Director of Clusterbusters. Clusterbusters is a nonprofit dedicated to researching and curing cluster headache while advocating to improve the lives of those suffering from this condition.
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I had been having cluster headaches for over 20 years before it was diagnosed. Anyone who hasn't experienced one has no idea what they are like. Migraines can't even come near. I get one yearly now, thankfully, and I don't know or understand why they are lessening as I get older. After I got married, my husband could look at me and know I had one even before I said a word. I know I didn't get them as severely as some and my heart goes out to all cluster headache sufferers. Thank you for this interview.
Nothing but respect for this man. Cluster headache sufferers don't have a voice in the big pharmacy world cause not enough of us have it. They wouldn't want to produce research a cure unless it made them big money, big congrats to Bob who lets pharma know we do exist and hope we can live normal soon
I was just diagnosed with Cluster Headache by a young Doctor whom I had seen for the first time. She asked me 7 to 10 questions and said, I believe you have cluster headaches. It was an actual relief to find this out! These headaches are indescribable and completely debilitating. Far and away the absolute worst pain in my life. I know pain. I have been robbed and stabbed in the chest which punctured my lung, liver and pericardiem, the lining around the heart, Spent 2 weeks in intensive care etc. I've had bleeding in the brain and blood clot in my lung. Nothing had ever come close to the pain I feel when I have an episode of a cluster. Just found out about Cluster Busters tonight and can't wait to dig in to this resource!! Thanks to everybody involved in that organization I will be in touch.
This man saved me and gave me my life back. I had clusterheadaches for 6 years, each year my cycle (fall time) would get longer and more painful, stretching into winter. I wanted to give up on life. After stumbling on his research I took a chance and grabbed some magic mushrooms and tried the initial "close the door" method and 6 years later i have only had one cluster cycle which was quickly stopped by magic msuhrooms again. THANK YOU!!!
That is a STRONG man right there 💪🏼 Too many can't bear it and end it all
I am 27 years old and have been suffering from chronic cluster headaches for 13 years. I have done all the standard pharmacological therapies and some experimental ones without results. I have had 3 operations, supraorbital nerve stimulation, occibital nerve stimulation and Gamma Knife (the latter improved my trigeminal neuralgia a lot but not my cluster headaches).
For a few years now I have been having 12/15 attacks a day and I am waiting to do deep brain stimulation (DBS)
I wanted to thank you for continuing research into this disease
Wow- that’s intense. I too have cluster headaches; my cycle this time around is about three months in. Please follow into clusterbusters. This man has set the gold standard for gathering current and correct info. I am personally going into the microdosing route, which is quite easy and legal , luckily where I live (Vancouver). So , without pushing something scary your way, do yourself a favour and look into this.. your version sounds as bad as any ones. Good luck.
He is a legend that has saved many lives….
Years ago you guided me in the right direction, I've been pain free for many years now, Thank You.
Can you tell me how he helped you please
Psychedelics bro. No other safe solution. @@jasonmccracken9850
@@jasonmccracken9850I don't know for sure, but I think @jamesdelaney3182 is referring to psychedelics as an effective treatment for cluster headaches. See 23:43 into the video where he talks about this.
I've been having migraine headaches since I was a young boy. I'm 59 now. I also have cluster headaches. You're absolutely right. No one can describe the kind of pain that you experience in a cluster. Headache. Migraines doesn't even come close. Medications don't help. Mine went away late 1990s and now they are back for a month now. The only treatment that helps me is Soaking my feet in extremely hot water with Epsom salt and making it hotter and hotter every few minutes. Until I barely put my feet in the bucket of hot water. then the cluster headache seems to slow down and stop in 10 minutes or so. I am having several episodes everyday. It starts almost the same time every day
Thank you 🙏🏽 for speaking up
This is a life saver
I had an attack back in March which lasted for 14 days. I took some psilocybin mushrooms that I had saved for this. I was so ill/scared/not myself that I didn't dare to take them immediately when the attacks started coming. It had to beat me to trash and my mental state was very off from sleep depravation and bodily pain, and I was in a state where "whatever, I can take these and have headaches while tripping or possibly get better, because I can't see this get any worse than this". I took them, and within 45 minutes I was in a state of bliss, my then 3/10 headache faded away. I cried some. And the following night I slept for 9 hours. Woke up with a 0,5/10 headache. And my cycle stopped. Was hung over for about 6 weeks, but no clusters since I ate the mushrooms.
I am diagnosed 2 years ago, and I have had 4 attacks since 2018. One thing I feel is some kind of disassosiation. Like one of me which is healthy and normal, then there is me while I'm ill. It doesn't feel real when I look back at how my state was, it's surreal. All the dark thoughts I never really play with when not in pain. It is intense. But it doesn't bother me when in normal state, I'm just aware on how badly it messes with my mental health while ill.
Thank you for sharing 🙏❤️
I was diagnosed In my early 20s with cluster headaches I'm now 45.i was lucky as my next 2 attacks came nearly a decade apart each bout lasted almost exactly six weeks.however in the last 3 years I have had two attacks..my heart goes out to the folk who are chronic.i tried many medications and nothing worked however on the last episode I met a doctor who prescribed me verapamil this has changed my life.i still get pain but these have helped me manage my condition.
Yes the pain comes on really fast and can last up to an hour then gone just like that. That’s the pain anyway. I will venture to say that even hours later I experience confusion, irritable and fatigued. So yes the actual pain which is geez just awful the side effects are not fun either. Can anyone relate to this?
the pain is so intense that time becomes relative.
for oneself it may feel like one has lost it like some do after drinking (bad idea!) but our loved ones see it can go from 1-3h and then one falls asleep completely drenched by cold sweat.
you should see your doctor now, don’t let it progress to where others are.
please.
I know people who‘re still on symptomatic treatment (steroids) who also use a muscle relaxant during the rough times.
every episode leaves me defunct until the next one comes around.
I actually was able to get in to see a neurologist. Yes he diagnosed me with cluster headaches so it’s great to finally get somewhere with this. However he said the best treatment is when they come on I’m gonna have to get to the ER and get put on oxygen. He said they run there course around ten years. Mine have been every other year for six years now. Yes the steroid no longer work at all. They used to knock them right out but not anymore. I also have to start Verapamil around August every year in hopes that it keeps them away. They are surely the worst pain I’ve ever been through.
@@goingoingone8667 I've had cluster headaches for 48 years so I don't know about the "they run their course around ten years" statement.
@@James-dt7ky oh man 48 years! Man I’m sorry to hear that. I was told the ten years by the doc. That’s what I’m hoping.
I just started getting cluster Headaches last week. I'm trying to get rid of them. I'm going to the doctor soon. The pain is too much for me. To bear
Magic mushrooms micro dosing helpt me alot . Stay strong hope it will help u . God bless u . Take care
@@starboymaluku4191 Well I was put on medication by a physician. Now my head aches are under control
What that person above me said! avoid the doctors, they won't help you. Waste your time and money. I did 1.5g chopped up fine and minced of mushrooms and timed it 15 minutes before my last two, attacks on an empty stomach chased it with some OJ and take the day off. I could feel the clusterheadaches start and retreat, almost like an alien vs predator alien trying to infest you and then escaping away
@@starboymaluku4191where to buy this product?
My first experience with CH was last November. It was the worst pain I have ever experienced in my life. I've had multiple kidney stones too and one of them nearly knocked me out from the pain while I was in the ER being helped by about four personnel. That was nothing compared to the CH. When it hit, I was driving home from picking my kids up from school. I honestly thought I had been sucker punched at first. Then it got super hot. I was sweating profusely, my left eye had stabbing pain, and my left temple had an excruciating, dull pain. I nearly got into a crash because of how sudden it was. I was trying to figure out what I had done for this pain to occur. I couldn't think of anything, so I chalked it up to a bad headache and treated it as such. Tylenol, water, and rest. I did this for about four days, and I couldn't take it anymore, so I went to the ER. I described what I was going through, and within a few minutes, they concluded that it was CH and gave me some lidocaine, which worked wonders. I had been pain-free until, again, this past November. Thankfully, I remembered the symptoms and looked up self-treatments that have lessened the pain dramatically. Cold compresses while closing my eyes have probably helped the most. Allergy medication seems to have an impact. The damnedest thing, though. My left eyebrow has a constant sharp pain in it. It also hurts (sharp pain) the eye to do common things like look or down up from something, like from a book to a TV. I have to close both my eyes, look up, and then open them to sometimes avoid the pain. My vision seems to have been affected by this most recent attack. My left eye sees things (like lines) diagonally from bottom to top, while my left eye sees the same line normally.
I feel like while on, and for some time after a gram of mushrooms my vision improves. :) while having CH I can't focus or read anything
Everything this man is saying a fact my cycle comes once a year in like October last like 2 weeks this time around it came back in November and with from the right side to the left side and will not stop I suffer
Same for me, except I have mine in late February and early March. 2018, 2022, 2024. Stopped my last cycle with mushrooms after 14 days in terror. :)
I cant figure out how to get me cluster to go into remission , i take mushrooms , im on the right now , but i cant make it more than 3 weeks with out an episode , this is the best its been for me , obviously they used be soooo much more frequent , but i started takin mushrooms and they have gotten me much better , but I read that people have had remission for 18 months or even for the rest of their lives , im 44 , ive had this since 27 years old , any body able to help me ?
Psychedelics 100% worked for me my last 4 clusters. I’m in a horrible cluster now and have no source for psilocybin. Totally helpless. They 100% work.
Not sure if you are still in the middle of it, but as I understand, there are specific seeds that you can buy, they are fully legal to buy and posses and can easily be found online anecdotally work as well as MM - it's not psilocybin, but in the same family as other psychedelics. You can go ask in the cluster busters forums.
@@m0ose0909Yes this! :) Get 'seed' and some rice flour, vermiculite and you are pretty much set. Oh well, not really - but it is not impossible, and there are good guides out there. In fact it's very easy as you gain more understanding. Just search for "PF tek", very easy, cheap and in fact - life saving.
I have been on ajovy for 4 years and only had one season of agony during covid when my pharmacy couldn't get it. Now it's $700/mo so I'm here to figure out another way. Spring will be here before I know it and I'm already worried.
I am having a bad run with them right now. 3 weeks so far, every night. I take the Sumatriptan injection. The headaches have caused issues with a couple of my friends that have witnessed me having one. :(
Same boat as you as far as time 22 days. Only had been taken one shot a day but last two needed two shots.
Im pretty disgusted i can't get mushrooms from my Dr right now. The US government did start research on it in 2020 though
I am 46 years old, i have claster over 7 years ,i am on pills for several years
Please try to get of meds and try mushrooms. Really it helped me, I had an attack for 14 days, then I took mushrooms and it stopped the cycle.
I have blood pressure meds which I got from the doc, but I haven't tried them. I just tried injection pens, and they took the immediate pain, but didn't solve it. What solved it was the mushrooms. I finally had a full night of sleep after taking just one gram that day before! :)
I’m one of the suffering people with cluster headaches. How do I get in touch to get the help to relieve my suffering?
Make the solution yourself! :) search for "PF tek" to find guides on how to make it at home. Or find out if it grows naturally around where you live. Where I live psilocybe semilanceata come in the spring. From mid august to late october is the best time to find them.
Both suggestions are pretty safe and cost effective, and you don't have to rely on others.
I too have cluster headache the headaches they left about 4 years now they're back but I take a cold shower it
I have years between them too. 2 and 4 years between each, I have had three in total. I just wanted to tell you I ended my last attack after 14 days by taking mushrooms. I tried 3 sumatriptan injections, 2 which "worked". But taking the mushroom really did it for me, it felt like my head bathed in balsam! :)
Man been misdiagnosed for 20 years weed caffeine cold water ice top head back.neck slappinn nerve centers back into working properly some of what I have done that helps
Why do we get these Cluster headache and what can we do to prevent these Cluster headache.
Psilocybin mushrooms help! :)
Dr. Lindsay- what a hottie❤
Sadly the name "Cluster Headaches" trivialises the condition. Only cluster sufferers can truly understand the unrelenting unfathomable and unbearable pain that you have no choice but to bear. What to the average person would be quite a severe headache is relief to a cluster sufferer. I'm pretty sure even Migraineurs don't have a clue. I wouldn't wish it on my worst enemy. Sumatriptan does provide relief in the short term but over use causes the headaches to increase in frequency and intensity. Oh and good luck getting prescribed hight flow oxygen for CH in the UK.
It should be called by its other name trigeminal autonomic cephalalgia (TAC)
Hi. I have had CH 8 years ago. After getting my atlas corrected i was painfree for 4 years. Then it started all over again. I got my atlas corrected again with a painfree 4 years after that. Now it started again for the 3rd time. Cant take the pain. The atlas correction was done in switzerland and i am living in jamaica now. This makes it very expensive to travel there for a treatment. Who could help me with finding the right dose of psilocybin? I am taking it now but it keeps coming back. In one video Bob Wold is saying one should start with a quarter. How much is that? A quarter of a gram or a quarter of the full dose? Any advise is highly appreciated.
I took like two caps and had a 5 year remission but I also stopped drinking and went through "Manopause"
I had one back in March which lasted for 14 days. I stopped the cycle with one gram. The following day, just for good measure, I took two grams in two doses, I had 4 hours between each capsule. This stopped my cycle. I don't know what works for you, but keeping the dose under 3-2,5g is deemed safe. Anything more and you can get very out of body. Only do when you have someone watching you. :)
If it's of any relevance or not, I just want to mention I am male, 32 years old and I have had attacks in 2018, 2022 and 2024.
@@ponzo1967yes this, I am basically alcohol free from this. It makes everything worse. Worse sleep, more migraine-like headaches, heavy headed etc. It's an alcoholics worst nightmare! :)
Can you help me please
Cluster butters