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Tony Only

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Everything posted by Tony Only

  1. 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
  2. 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 !
  3. Tony Only


    All the best to BOF ! PF wishes to all forum users in these challenging times.
  4. 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.
  5. Oh, absolutely, please do if you can do that !
  6. 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/
  7. 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.
  8. 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
  9. 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
  10. 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"
  11. Is "Psilocybin and LSD in the treatment of cluster headache" (the busting section) anywhere available to read ?
  12. 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.
  13. I understand this might seem odd to everyone who is familiar with clusters and treatments. When we started the production this video was supposed to go to hospitals, police, security personnel etc. only to be distributed in their internal information channels. We decided to make it public as we went but it is still targeted to those who are unaware about clusters and different treatments. Majority of finnish patients we have encountered on recent 8 years our social media group has been active here have had difficulties with their attacks in public. People have been locked up, sedated by force, pepper sprayed etc. Oxygen is often not used even when one has diagnosis and/or some kind of paper with them guiding for it's use. We have kept a list of doctors who can write a script for medical oxygen - those doctors are so rare. Fastest way to get an oxygen therapy to your home is to have it used during an attack in an ambulance or in ER station (which is even slower). Distances in Finland are quite short in great part of the country or amount of ambulances on the road is so good; where I live I could get an ambulance in around 5-10-15 minutes. The ambulance presentation in video is to present the severity of the condition too. Unfortunately for some it is impossible to get oxygen at home no matter what - we can't get welding oxygen etc. in here as easily as in US because they are so regulated and permissions are almost impossible to get if you don't have a business in that field. I think many struggle and fight it out and stay invisible. Every ambulance call is logged and the reason as well. Using them is advocating to healtcare professionals. There was an intention to place a disclaimer in the end but the mighty corona got to us and the editing venue is currently shut down.
  14. After 30 years of clusters there's a great difference on cluster side vs. "normal" side. I'm approaching 5 years without a cycle and my secretion is sticky and often bloody on cluster side even on these PF years. It's odd. Often looks like the cluster side is allergic and the other side is not.
  15. First of all, my advice for everybody is to avoid alcohol completely in life in general and especially in treating clusters, no matter what you can achieve using it treatment wise. Personally, younger drinking too much, to the point of passing out provided me with a "shield" - a time period inside which cluster attacks did not happen. I drank more and more and during years this time period got shorter to the point when alcohol did not build this shield at all anymore. And I had a huge alcohol problem. Back then I used to think it lessened my attacks, I don't anymore - I think I got them back in spades later on. I have chatted with quite a few (usually male) clusterheads over the years who use alcohol for this shielding effect. I believe in the point when this is happening everyone is still quite manageable episodic. I don't want to encourage anyone to try or use it because there are healthier alternatives, for the brain and for life and people around us. But it's an interesting phenomenon which should be looked at that might help us understand clusters better and get us closer to finding the "cure". The other side of the coin; guys who have stopped using alcohol altogether at some point of their lives and have decades to look at cluster-wise usually notice there is some kind of correlation with no alcohol (different mind set) - no clusters (severe cycles).
  16. Any King readers in this forum ? I know he has often stated having migraines but just about always I read a headache description in his books these days clusters come to mind. Anyone have similiar thoughts ? Should he not have heard of clusters would not be unheard of.
  17. https://www.facebook.com/hortonassociation/posts/510656216494396
  18. Thanks for your story Vipul ! I will be following this with great interest. My cloud space tonyonly.pp.fi is not working any more (it was discontinued) so they Ayurveda protocol in english can be found here: https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/ayurveda
  19. She is currently having a respiratory infection on top of her asthma so it's probably wise to wait to recover from that. She just sent me rest of the meds and supplements she is on: - Indomethacin - Para tabs (paracetamol) - Dymista nasal spray - Sirdalud - relaxant - Ferrodan (iron) + lactoferrin
  20. Thank you so much Pebblesthecorgi I will translate your excellent post here in finnish so the lady in question is able to read it in her own language, and does not have to use the Google translate that usually does not do very good job with finnish. (in purple) Esittelet tässä merkittävän listan reseptilääkkeitä joita käytetään yleensä huomattavan hengitystiesairauden (tai keuhkoahtauman) hoidossa. Astmalääkkeet ovat yleensä avaavia tai hengitettäviä steroideja (kortisoni) tai näiden kahden sekoituksia. Medrol on steroidi (aika lailla samaa luokkaa prednisonen kanssa vahvuudessa) jota luultavasti käytetään johonkin keuhkoihin liittyvään. Zolt on protonipumpun estäjä jota käytetään närästyksen hoidossa. Sitä käytetään yleensä lyhyissä jaksoissa, se ei vaikuta heti mutta sitä ei tulisi käyttää myöskään jatkuvasti. Betasalpaajaa määrätään yleensä kohonneen verenpaineen hoitoon mutta sitä voidaan käyttää myös migreenin hoidossa tai sydänsairauden hoidossa. Estrogeenivalmisteita käytetään sisäisesti ja niillä on hyvin vähän vaikutusta kun niitä käytetään 6-12 viikkoa. Joten jos uskot ajatukseen että steroidit voivat olla blokkaavia tekijöitä niin silloin tässä jonkinasteisia huolenaiheita ovat Medrol ja jotkin hengitettävistä lääkkeistä. Avaavat lääkkeet voivat aiheuttaa ahdistusta ja nostaa sykettä mutta niiden ei pitäisi blokata (estää vaikutusta). En usko että protonipumpun estäjä on ongelma. Estrogeeni voi vaikuttaa lääkkeiden metaboliaan maksassa, mutta sisäisesti käytettävät estrogeeniannokset ovat niin pieniä että niillä ei pitäisi olla roolia tässä. Betasalpaajat on mainittu joskus blokkaavina mutta en usko että ne ovat oikea huolenaihe myöskään. Tämä on sellaisen henkilön lääkelista, jolla on huomattavia terveyshuolia. En suosittelisi lopettamaan mitään säännöllisessä käytössä olevia lääkkeitä ilman lääkärin tarkkaa valvontaa. Jos hän on käyttänyt steroideja kauan, niillä on oma merkitys myös psyykkisen stressin sietämisessä eikä niistä irroittautuminen ole käytännöllistä. Hänen täytyy ola hyvin valmistautunut ahdistukseen jota voi liittyä bustaamiskokemukseen ja "vahti" joka on hänen kanssaan ja ymmärtää mahdollista hengittämispuolta. Loppujen lopuksi se on hänen päätös mutta suosittele hellästi. Huomattavaa varovaisuutta ja huolenpitoa täytyy harjoittaa.
  21. Aloha ! We have a female patient who is planning to start busting (first timer) with RC seeds (LSA). She sent me her medication list but I am not familiar with asthma medications, or hormonal supplements. DO you see anything in this medication list that could be a problem, blocking, interfering or amplifying in busting treatment ? Asthma medications: Singulair , Ventoline , Spiriva respimat , Sereride , Alvesco Medrol (for bronchitis) Zolt (for heartburn or to use with Medrol) Candesartan (beta blocker) Estrogel , Vagifem (hormonal)
  22. I hope you can see our posts those who are not on social media. We have been building this association for a LONG time. I am hopeful to be able to jump out from the fast-paced social media sites and back into the more serene places such as this one. Many of you are often in my mind. Today was a special day and a day to remember it was you all here in this very forum that helped me in the very darkest of hours. I hope the absolute best days for everyone and for that day to arrive when no one has to survive Horton / clusters anymore. PF wishes ! https://www.facebook.com/hortonassociation/
  23. https://www.facebook.com/permalink.php?story_fbid=279494592943894&id=268218244071529 An open petition for the people working in the healthcare industry involving patients with Horton’s syndrome We hope that the term “headache” would not be used when dealing with our disorder but rather some other expression as part of the name of our condition. Using familiar "cluster headache" may build up to not understanding condition and expression like "it's just a headache". In our patient files Horton’s syndrome or Horton's cephalalgia can be used. Horton’s syndrome also has a nasty nickname; “suicide headache”. This rough sounding name is an attempt to express the severity of our condition. This is not a headache or just a head pain. These are seizures originating from the brain that leave patient alone to overcome the physical and mental traumas from these seizures (attacks). English term “an attack” is very fitting, and since we feel the pain of these attacks in our head region, some use the term “head attacks”. But only when you start to think these seizures appearing like physical attacks; someone repeatedly attacking you when no one can see - you start to realize the amount of fear many patient constantly live with. The “attacker” in Horton’s syndrome is an invisible shape; it breaks the patient because it feels like it’s stronger than you, it comes back again and again, it arrives by it’s own schedule and nobody even knows what is happening to you. Patients can actually be afraid to go to sleep, because sleeping is an usual trigger for an attack. At some point when this condition has evolved to being severe enough, many of us are ready to do absolute anything to stop these attacks from happening. In healtcare industry the better understanding of Horton’s syndrome and patients surviving with it will improve the management of this condition and also decrease the burden from people working in healthcare - it is an advantage for both parties. This text can be freely shared anywhere as long as it’s shared in full. Tony Taipale Patient with Horton’s syndrome #hortoninsyndrooma #CHAD2019
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