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Tony Only

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Everything posted by Tony Only

  1. 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 ✌️
  2. 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 !
  3. 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 !
  4. 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).
  5. 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.
  6. https://m.facebook.com/story.php?story_fbid=574070690152948 It is wonderful to read Tom has finally found relief.
  7. 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
  8. 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.
  9. Hi Into Light, You wrote this earlier about Stephen King. I'm sorry you're having such a rough time ! Sending Love & Light !
  10. 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
  11. 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.
  12. 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.
  13. I truly hope horses do not have this. http://www.headshakingsyndrome.com/proposed_pathways.html
  14. Herbal Protocol https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol Anti-inflammatory regimen http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
  15. Oxygen at home available at all times was huge for me, decreasing the fear I was living with. At this stage triptans were causing cardiac events (together with verapamil). Before turning to regular preventative busting I too was shadowing between attacks. For years I treated them with Herbal Protocol (I will insert link on the next reply). I had been using Vitamin D but when I started doing it right - the whole Anti-inflammatory regimen - shadowing more or less disappeared, for good. Now I have been 5 years pain free with combination of Anti-inflammatory regimen and preventative busting. Good luck mate !
  16. Tony Only


    All the best to BOF ! PF wishes to all forum users in these challenging times.
  17. Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though. We collaborate with each other a lot but as an EbE we do not speak out (=advice) about treatments since we are not doctors. Our job is to tell our personal experience living with the condition and not advice about possible treatments, when we work at a hospital. Understandable course of conduct but also a balancing act for me, since I am also a patient, peer support, sometimes a friend, member of an association etc. And treatments that saved my life are illegal here but also part of my life's story. I think this kind of training and use of us patients in the heathcare is benificial for everyone, especially in cluster headache not well known at all.
  18. Oh, absolutely, please do if you can do that !
  19. Thank you both ! These are marvellous links and great PDF ! After aiming to help just a few this looks like a bigger, more organized work on the subject would be definitively needed here. What you gave are great help for that ! I will also contact Dr. Larry Schor - sounds like he is just the man to consult on this. I am all for anecdotal. I work as an "Expert by Experience" in Horton's syndrome (cluster headaches) in Finland. I give my personal experience to healthcare or face to face to another cluster patient so it would be used to help others. Some phenomenons in our communities will never make it to studies but it can be crucial to hear about them. Here's a bit about this program in english although this article covers mental health / substance abuse https://www.mielen.fi/experts-by-experience/
  20. I am looking for studies or good articles about cluster headache that address the psychic burden of this condition. Article that would explain the fear, anxiety, panic attacks for some that we may go through. I think PTSD is most often mentioned as a possible affiliated diagnosis but the whole mechanism is rarely explained. There are people who are not taken seriously with these psychiatric conditions or these might be used as weapons in work life etc. People who try to work during a cycle may have to prove they are not under influence of alcohol (or other drugs) due to cluster symptoms or PTSD. I will attempt to do a little write up in finnish that cluster patients could use and share for their GP, boss, friends and family but if you could link to something that's already there or that could help thank you very much.
  21. I'll attach a picture of a section of the website I was looking for. I think it's pretty much the same as the 13 parts in the forums ? Maybe somebody knows better, I thought maybe the website version was more up to date or it had additional content to it. I had been translating it to finnish very slowly over the years and it's far from done. I'll do my best to advice everyone register here and ask any questions they might have. Playing Well Together is asked about most at the moment (from me). I have heard of aborting attacks with different tryptamines mysef but don't have personal experience and know little about this subject. I think many that do this do not repeat or manage to repeat it (maybe due to "shutting the door") unless they use tiny amounts (as in SPUTs). Just yesterday I read here that "According to other reports (1, 2, 3), inhaled DMT can abort an attack in as little as 3-5 seconds." I think reports like that should make researchers jump right into this one. Thank you again CHfather (and for all that you do!) Here's my attachment: https://drive.google.com/file/d/1hiSrF4Oygu3aczlY2NT7lfP5VwlWR1GY/view?usp=sharing
  22. Quite a few people on this forum I would love to see join our movement if you have time and energy. Every CH advocate is a valuable consultant for this no matter where you are located. https://sites.google.com/view/hortonyhdistys/in-english/petition-2020
  23. Thank you CHfather. I am actually looking for "Busting - The Clusterbuster Method" section that used to be here: http://clusterbusters.com/?page_id=26 For some reason it was in my bookmarks by the name of "Psilocybin and LSD in the treatment of cluster headache"
  24. Is "Psilocybin and LSD in the treatment of cluster headache" (the busting section) anywhere available to read ?
  25. Here in Finland also the emergency personnel need to be thanked. When person X has called an ambulance many times enough just to get oxygen treatment for Horton's, often the emergency personnel are involved in the process when doctor finally makes that oxygen script.
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