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ClusterBusters

Tony Only

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Tony Only last won the day on June 7

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  1. Tony Only

    15th Annual Conference Info!

    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 !
  2. Tony Only

    Speakers for the 2020 Conference

    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.
  3. Tony Only

    5-MeO-DALT (2020)

    Is there any reliable source for 5-MeO-Dalt anywhere in the world anymore or do patients just have to forget this option ?
  4. Tony Only

    the joy of CH

    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.
  5. Tony Only

    Support Group

    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
  6. Tony Only

    Atypical cluster or something else ?

    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.
  7. Tony Only

    I think it's official

    Stay strong Mox !
  8. (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.
  9. 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
  10. 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 !
  11. 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.
  12. 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.
  13. 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.
  14. 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
  15. 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
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