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Tony Only

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Everything posted by Tony Only

  1. Thank you @trjonas that is so sweet of you Here's an update: After writing these posts I quit taking the Batch regimen (anti-inflammatory regimen) because was forced to do so in public healthcare. I had been leaving "god please help me" messages to the neurology department in my town. In november we had a baby, our baby was in intensive care and as parents we were staying in hospital 24/7 me starting to get CH attacks again. It was difficult even to get O2 treatment in hospital which kind of gave me perspective and real life experience how far behind we still are here in CH treatment. But then one day the neurologist called. He backed me in using anti-inflammatory regimen, I started it back up and public healthcare was forced to give me heathcare. My calcium was checked and it was ok. I can now get my Vitamin D level checked this fall, taking the Batch regimen daily again. I had to use some Lucy in the sky with diamonds to terminate the cycle that tried to get going; me being open with it we are now clients in child welfare services and I'm labeled a drug user. At this point, I don't mind - don't have time to worry about it, but will work for the rest of my life so that no one should go through what we went through. But things are good now CH wise
  2. You can reach me on Facebook as Tony Taipale B)

  3. I have been replying to Amar every now and then on Facebook and looks like doctors who take care of him don't know CH at all and maybe not even headache disorders in general. I think one good doctor in India would be sufficient. Is there someone in Clusterbusters who we could contact, who could help Amar further (probably not following this message board) ?
  4. Thanks to everyone who have replied ! And thanks @trjonas - I have known Boswellia serrata to be used for CH but this is the first time I heard it's this much beneficial compared to indomethacin for treating hemicrania continua. I sent a link to this discussion to the patient in question and also shared this on Facebook, I think many may benefit of this !
  5. We have created a Facebook post you can share today if you use social media: https://www.facebook.com/hortonassociation/posts/788401562053192 Other material for CHAD 2021 is in our website: https://sites.google.com/view/hortonyhdistys/in-english/chad-in-english Pain free wishes everyone
  6. Check the links in the description Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus... Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches": https://www.preventsuffering.org/wp-content/uploads/2020/11/Legalising-Access-to-Psilocybin-for-Cluster-Headaches-Policy-Paper.pdf
  7. You don't need even a single dose of triptan when you have oxygen + other abortatives and a good preventative. But if recently diagnosed it might seem hard to get there and new clusterheads usually are the ones who fall on suma path (and many are unable to get out). I personally think it's magnificient that they are limited nowadays, remembering those days they were not and having overused them myself to the extreme. Lots of friends from that era are either dead or live with a damaged heart. They can lengthen cycles, increase frequency and intensity of attacks. Many still keep on using them when they have realized this; either because of fear or inability to get oxygen or some other reason. I would say use them in an absolute emergency only, and hope we get rid of them or manage to invent and manufacture a cluster and heart-safe triptan one day. The second level of hell you may end up to overusing them regularly is something beyond even cluster-imagination. [preaching stops]
  8. It's a bit of a twisted logic - Vitamin D is added to our food in Finland since we are Vitamin D deficient as a nation (no sun during winters) but then again if you supplement it's dangerous and we are already getting "too much" from food that has added Vitamin D. This heated discussion has lasted for decades. Few key doctors who dare to disagree are out of doctor's union. Research will change the world.
  9. Thanks Siegfried and spiny
  10. I have very limited understanding for the scientific side but I thought this might explain why busting (that we do) is beneficial for many for such long periods of time. And then needs to be done again when inflammation reaches the certain point again and again unless something is changed permanently in diet etc. I'm not certain what you're asking though
  11. I have been asking for prices this week to have these measured in my town. Cheapest price in my city is around $270 for Vitamin D, calcium and PTH together. Unfortunately I can't afford that. We have a public healthcare system and it is just about impossible to have Vitamin D measured there. Maybe once to make sure there is no deficiency but if you say you are using supplements the instruction is to stop using supplements. If I have had other health issues and high Vitamin D level, I have always been instructed to stop taking vitamin supplements before receiving any kind of care. Should I take costly lab tests on private sector, those would affect my care in public sector since they see the results. So it is kind if forbidden to have high Vitamin D levels over here. Lucky ones have health care in private sector via occupational health or insurance but majority are under public health services. I was wondering how is this in other countries ? Finland has a good reputation about public health services which overall in practise ain't that great.
  12. I was chronic, started busting in 2012 and managed to end my chronic state and attacks completely at first. CH returned in few very weak cycles. I have not had a real cycle since 2015 and manage to keep myself pain free with Anti-inflammatory regimen and preventative or abortative busting. But IF things get out of hand, this is exactly what I get - continuous pain. I thought at first that after 30 years I have managed to develop a migraine in addition to CH and neurologist also thought so. Now I know we were both wrong, it was CH moving on to another side of my head. I think it (or he/she) is migraine-like continuous pain and not in regular attack duration because I have too effective treatments and it's trying to break throught (usual spring and fall). I wholeheartedly recommend investigating busting further, also Anti-inflammatory regimen if you're not familiar with it already and also Herbal protocol
  13. 2 weeks ago I had my first real ping pong, an attack changing sides every day. It was super strange and it took me Day 3 to comprehend this is really Horton's (cluster). It felt like an effort for a cycle to start but managed to bust it back into remission. I thought I would ask if this has happened to you, has anyone had any ideas what could be causing it - apart from adjusting your hypothalamus with psychedelics I'm having quite a lot of health issues right now (gut & breathing) and feel like these might have something to do with it. PF wishes everyone
  14. And we just happen to have an Anti-inflammatory regimen for Horton's already https://massivesci.com/notes/psychedelic-drugs-serotonin-psilocybin-dmt/
  15. Although it's sad for you not to be able to meet in person, you can't imagine how great virtual conference is for someone 7000 km away who has been following all the bits and pieces possible from previous conferences ! Thank you for setting this up !
  16. I think Jonathan's speech is available to watch for everyone via link on OPIS Facebook page: https://www.facebook.com/preventsuffering/posts/3298997980180432 This is the cluster headache project we are also carrying on in Finland.
  17. Is there any reliable source for 5-MeO-Dalt anywhere in the world anymore or do patients just have to forget this option ?
  18. If you are in Facebook there's also "Australia New Zealand Cluster Headache Support" group which has to be ok since I am still a member (there are the non-ok groups too) Feels odd writing this but I currently have this great gratitude for having cluster headache and thankful of everything it has brought me in life.
  19. I do remember some pain related "support groups" from the nineties that had an attendance fee and if you participated them feeling depressed you were most likely suicidal when the group session ended. Then Internet happened and these people vanished. I echo others, introduce yourself, get started about 1. Treatments and you will forget the rest
  20. I will edit my post, I think the right term is discharge (thank you spiny!) and not bleeding - there is no blood, but clear mucus (thank you online dictionary) I will pass on all replies in this thread ! I think MRI is essential in any way possible. Cluster symptoms with odd additions can be sign of something more sinister wrong in the brain and I fail to understand why it seems impossible to get these taken. I know of few people who have had a tumor, an aneurysm or such and when these are found many patients - or their families do not report these findings on communities. I doubt all neurologists are enough aware of these possibilities. So you can be sure I will also return here to report any progress and how this turns out.
  21. (Here is a copy/paste of a message of a finnish patient who is diagnosed with cluster headache but nothing seems to be helping) Anyone have similar symptoms: without treatment my pain is extreme 10/10 and it is focused in either of my eyes and is changing side very often, almost every time. Feels like someone is drilling into my eye, ripping kind of pain, I can't stay still, I beat my eye with my hand. The eye with the pain is tearing, nostril on my pain side also bleeding, other nostril is stuffed. My attacks last 2-4 hours and sometimes even 5-6 hours, when pain level is 10/10 I can't speak only cry and yell from pain. Some of my symptoms are same as in cluster headaches and some are not. That's why I am writing and trying to figure out is this cluster headache or something else. I have been diagnosed as cluster patient but I have not had head MRI taken although I have asked for it several times. EDIT: Hot directly in eye helps somewhat, cold has made it worse. I have oxygen but it does not help much. Have used lot of triptans in years prior for migraines, now detoxed from them.
  22. One of the projects is relieving suffering involved in cluster headaches https://www.gofundme.com/f/help-opis-prevent-intense-suffering I was not sure are GoFundMe links allowed here, if not this post can be edited / removed
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