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Tony Only

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Everything posted by Tony Only

  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. 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. Penises are not as dangerous, are they ? " There are things known and there are things unknownand in between are The Doors " - Jim Morrison
  8. It's all Jonathan's great work ! I certainly will keep you updated. Hopeful again for the longest time.
  9. 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
  10. 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.
  11. 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
  12. 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 ✌️
  13. 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 !
  14. Hi all, I wrote here in 2018 on behalf of a young girl in our finnish Cluster headache Facebook group (my post in this link). She was treated as a cluster patient but the diagnosis was not set. Now she has finally received a headache diagnosis for hemicrania continua but her situation has not improved at all. I will attach her post translated to english below if anyone has any ideas or suggestions what to do or try. ---translated message begins--- Howdy! It’s been quite a while since I have last posted anything here, but I really am now at my wits’ end and do not know how much longer I will survive like this. For background: my worst problem is 24/7 headache and more severe headache attacks that happen daily. And the vertigo and nausea that follow my constant headache. I also very likely have hEDS that affects my overall health with symptoms it presents. My father has hEDS but I have not yet managed to get a diagnose although I fill all the criteria. All my treatments have completely stopped at this moment regarding my headaches. I have visited a neurologist in january and I received my first diagnosis (hemicrania continua). The doctor was very appropriate and listened to me, and prescribed indomethacin. This medication was not suitable for me though causing nausea and vomiting. After this all the contacts have stopped. I am under the impression that I am waiting for a neurostimulation surgery but the situation is very unclear. At the moment I have nothing that would help me with my pain so I am taking any suggestions for self treatments as well. As years go by to me it feels I am getting worse, I have not even graduated from high school and I feel I am just a burden to this society, living with other people’s hard earned money. I don’t want to be a parasite, I want to study and work. I want to earn my own money I can spend without feeling guilty. This idea just seems impossible with my deteriorating health. I have been regularly fighting with public healthcare for over 8 years now and there is no end in sight. Generally I feel that no one wants to help me and my life is meaningless, when even doctors may treat me like an animal for slaughter. So how do I pass this phase, how to carry on and not to feel like being a complete loser ? What am I even looking for with posting this, I don’t even know myself, to release some bad mood and anger I have inside and to find support I guess. And I am sorry for my confusing text, it is hard for me to concentrate due to my aches. I hope all of you are doing better in the limits of our pandemic and you are looking forward to nice and sunny summer !
  15. My brain has not recovered from Topomax and I am slowly accepting it that it never will. If someone I care about would like to use Topomax for anything, I would probably force them off their hands. I would estimate it to be safe for around 10-20% but we don't know beforehand who these people are. Majority recover from possible "side effects". But some do not. If there would not be any other options in the world than Topomax ... nah, it would still be No. EDIT: There is a Facebook of 8960 members here. If you do a search with "Topomax" or "Topimax" (european product name) around 75% of the experiences are horrifying (at least to me).
  16. Tony Only


    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.
  17. https://m.facebook.com/story.php?story_fbid=574070690152948 It is wonderful to read Tom has finally found relief.
  18. Tony Only


    Your help will always be needed, there are other areas where there are no indicators of helping efficacy or such ...helping others should and can not be ranked or listed or top-listed. Maybe an option to turn any "leader boards" off could help some of us. As long as there's cluster headache, there's need for helpful family members Thank You for all that you do Peace, Love and I hope you feel better soon
  19. First I made it back to ECH from CCH and classic CH symptoms (blocked and runny nose, teary eye etc) reappeared that were not present anymore when chronic. Soon after I managed for the first time to prevent whole cycle (with tryptamines) I started to get CH attacks without pain. Always on the CH side. Then on different sides and couple of years later these were transformed more like extreme allergy attacks. Got my 1st every CH hit on right side. Antihistamines to treat these "allergy"attacks. Just a while back asthma was diagnosed (I disagree) and have gone through quite a few inhalers. In my (rather complex) case what ever is causing allergy attacks is bad, and for my transformed (mutated!) Asthma when used some inhalers are clearly bad for my CH. There are so many of them out there so you can do trial and error.
  20. Hi Into Light, You wrote this earlier about Stephen King. I'm sorry you're having such a rough time ! Sending Love & Light !
  21. I could not find a single leaflet in english (they're all in finnish) but here's a book about EbE's working with homeless. It describes the idea well. https://www.pathway.org.uk/wp-content/uploads/2013/05/EbE-Involvement-Handbook.pdf I am hoping more and more EbE's for rare diseases everywhere
  22. Siegfried, Why does your neuro think you can't have CH, CPH and migraine ? Or do you think that ? We have encountered so many cluster headache patients (all female) who also have CPH in our finnish FB group that we created a sub-group for them. Some may have even more than three headache disorders going on. From what I have read it looks like very few are able to tell which disorders are happening simultaneously but I think pure CPH does not respond well to oxygen. I might be wrong though ! But I'm thinking if you get cluster-like pain in future while on indomethacin it might be CH partly responsive after all. You're more than welcome - you're not going anywhere I'm happy you found clarity and wish you would not have to suffer at all.
  23. I'm sorry Taylor, this sounds rough. I am an admin in finnish CH community on Facebook. In 8 years we have only had few parents posting that their child has cluster headache. It is my understanding that using medications with children should be more careful than with adults but this does not always happen. I can't remember has someone had any guidance for dosing. I personally would not even dare to consider some medications which are terrifying even in adults (like topamax) and certainly practise great care with serious abortatives like triptans. I too think D3 regimen (Anti-inflammatory regimen) is the best (safest) way to go. Batch will help and tell more. I think CH community would urgently need something for parents so that they could learn from parents who have gone through same things. Could admins here set up a dedicated thread for this ? I could guide our parents here.
  24. I truly hope horses do not have this. http://www.headshakingsyndrome.com/proposed_pathways.html
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