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ClusterBusters

Tony Only

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Tony Only last won the day on June 7

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About Tony Only

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  1. Hi Omar ! I want to link you this project going on in Finland: Psychedelics could save so many lives and patients health in here should they be available. Thank You for doing this article !
  2. Pay attention you are able to get the same amount of poop out (sorry for the language) you did before verapamil - there are probably lot of options for help in your pharmacy. Depending a bit of your diet but long term created constipation can lead to diverticulitis ("bubbles" in your bowels manifest as pain) - familiar to us in the verapamil family - and that's a whole new problem of it's own. In Finland there's a great product called "Vi-Siblin" (Google "Ispagula Psyllium") which usually helps verapamil users even when more ordinary products do not.
  3. When I start typing I often feel like I am spoiling something when the vibe in the conversation has been good before I entered. I personally would recommend Verapamil to no one. I have been actively (daily) working in the online communities for 10 years now. I don't know anyone for whom verapamil would have worked for 10, there are few who can stay on it for 5 years. Even if the response stays there are cardiac problems, detectable or not detectable. I would say if you are in relatively good health and have not tried verapamil, please keep it that way. I was on 480mg almost for a decade, 720mg for years and in the end 960mg and almost 1200mg. I regret every pill of it. I too started getting relief on my cycles, especially night hits. For me it was Vitamin D I was taking alongside verapamil. But I am not this against it because of my personal experience but because I admin finnish patient community and there is nothing in patient experiences - especially in long term - that would look good for verapamil. And when high dose patients get problems it's too late. Steroids (prednisolone) are more dangerous than verapamil. They abort the first few cycles and doctors have limits on the dosages you can get as tablets. When the highest dosage steroid course does not abort a cycle anymore, usually the steroids have altered your cluster headache to hell of a lot worse it was before them. At this point some get steroids as IV. Again, not against these either based on my own experience (though I have lots) but they create nothing but tragedy if you follow same set of patients for 10 years. Oxygen, Anti-inflammatory regimen and busting are giving nothing but great results though, in long term, in our community.
  4. Tony Only

    Please help with verapamil quetions

    I assume you were taken an ECG before verapamil was started and have heart monitoring scheduled. You need an ECG after discontinuing it so you can't just be on and off it when you want to.
  5. It's hard to figure weight on YouTube comments with so many following The channel. No one in the lynch mob on social media has carried this out for 3 weeks, many have not tried at all. I too was thinking about thought processes and distraction - and also thinking something like this might have worked on me when my clusters began, before they were amplified with pharmaceuticals. I have done severe self injuring but never this sort of a "regime". I wanna hug this man anyway
  6. I just saw this for the first time although it's been online for 2 years now. It is receiving a bit of a hostile feedback on social media but don't understand why not try it on low level KIP hits. Sorry if it has already been linked here. Has anyone tried this ? https://www.youtube.com/watch?v=7GadfaskoH0
  7. Tony Only

    Prayers work. I am praying for all of us.

    Penises are not as dangerous, are they ? " There are things known and there are things unknownand in between are The Doors " - Jim Morrison
  8. Hi Tony it's Nithin from India I just saw ur post on ayurveda having a cure for cluster headache did it work for you plz let me no I live in India 

     

    1. Tony Only

      Tony Only

      Hi Nithin ! I have not gone deep into Ayurvedic treatment myself - I do believe it works very well. Send me a PM and I can help you get in touch with finnish Ayurveda practitioner Ossi Viljakainen who is also very familiar with cluster headaches.

      Edit: I sent Ossi a message and asked for his current e-mail

  9. Tony Only

    Relieving the Pain of Cluster Headaches (YouTube)

    It's all Jonathan's great work ! I certainly will keep you updated. Hopeful again for the longest time.
  10. https://youtu.be/AbOhVahPNl0
  11. Tony Only

    LSD clinical trial

    There certainly is more interest and business possibilities to this. It's still a shame to have BOL go forgotten (or has it been - I don't know). I am still overjoyed with this ! Our world will change with this and psilocybin research. https://m.facebook.com/story.php?story_fbid=164303895107031
  12. Tony Only

    Is this normal?

    After almost 30 years of clusters I recently had my first side shift and had a feeling of very small cluster lump (in neck) trying to form on my neck on the new side. But the knot (on my back) is still there on the old side so I think it's related to which hand one uses.
  13. Tony Only

    Is this normal?

    You might also find some discussions on other (older) sites with "cluster lump". I have had two of such, a "lump" in my neck on my pain side only appearing when I am in cycle and a "knot" in my upper back (nicely "under" my shoulder blade) that is more or less always there. Since there first one has now disappeared when I succeed in preventing my cycles, I need to pay attention to the second one (in my back). I have never had it massaged during a cycle but the physiotherapist who saw (or more like felt) it first had not seen one before or could not explain what it is. I do regular stretching aimed at that spot, yoga and such. For me most important thing is to pay attention on static work positions in a computer for an example. I think I have partly created it myself - even being anxious or tense and that reflecting physically via keeping my shoulders up just a little bit unconsciously - and partly it comes with cluster headaches, for some. I used to think it's all about muscles but nowadays I think vagus nerve has a role in all of this or at least the upper "lump". For me there is a big mental factor. When a lot younger I also associated increased heart rate to these symptoms and verapamil was a great drug - at first. Now I think it was probably slowing down my pulse and working together with vagus nerve to calm down the fight or flight-type mindset. Psychedelics, yoga and meditation have resulted to similar kind of state but more naturally. I think for many of us calming the mind down will also help with these knots and lumps and efficient treatments as well. But my "knot" still manages to surprise sometimes how active and ready to form to a trouble again it always is. Like pulling a lawnmover to start when you are furious - "here I am!" Here's a bit about vagus nerve with a quick Google search https://www.psychologytoday.com/us/blog/the-athletes-way/201705/vagus-nerve-survival-guide-combat-fight-or-flight-urges
  14. Tony Only

    50 yr old Newbie

    Hi Dr. Julie and welcome ! I personally see 2 paths to travel; pharmaceutical and non-pharmaceutical but many of us mix whatever helps. I think the best way to choose your own is to read experiences of others and listen your hunch. It will get hell of a lot better from now on ✌️
  15. Tony Only

    Sad but Necessary Action Today

    I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !
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