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Tony Only

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Tony Only last won the day on December 15 2018

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  1. Tony Only

    Cluster Headache Awareness Day 21st March 2019

    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
  2. Tony Only

    Cluster Headache Awareness Day 21st March 2019

    I have to reply I did not pick the day, it's been on Equinox for a few years on Facebook posts for CH organizations in different countries. This is just our finnish "poster" - in english
  3. Feel free to share this image on anywhere in the social media: http://tonyonly.pp.fi/ch/shy_mainos_englanti.jpg http://tonyonly.pp.fi/ch/shy_mainos_englanti_rc.jpg with round corners Image can also be linked from Facebook source https://www.facebook.com/Horton-Association-Finland-268218244071529/ You can also participate on our virtual Facebook event https://www.facebook.com/events/327047598016318/
  4. This is a bit silly coming from someone who has never even been at a conference but have you though to have a "media person" who would take pictures and post them here maybe with a short summary being same person every year ? Maybe someone not having clusters just concentrating on documenting and reporting. Just an idea !
  5. Tony Only

    Following conference remotely?

    How about not streaming anything from the conference programs live but making a short video report from conference to people viewing over internet ? I would imagine this kind of thing having a great positive impact. It would not have to be anything well planned or scripted imo. Our 1400 member finnish group would be very interested to see anything and practically very few would even have a possibility to travel to conference.
  6. Tony Only

    Aimovig

    I had the wrong conception about the CGRP meds when they were being developed and studied because of how they were being marketed. I am almost ashamed how I talked about them only a while ago. Now I have heard a lot of people who are using them having this and that and very small minority reporting anything (bad/severe) in ch groups. Rheumatoid people seem to be much more outspoken with same class of meds and same side effects and dangers. You can't get cancer for an example. I am puzzled with the whole thing. For clusters we have tryptamines. And pharmaceuticals raced for this. I get the profiting part but still. I would not risk it myself and am unable to recommend them at this point, even should they be free or cheap.
  7. Tony Only

    Natural treatments for cluster headaches

    Hmm, I did not see this "display as a link instead" when posting that video and I thought I looked for it (maybe I managed to misclick the "x" for it or something). Now when replying it's clearly there.
  8. Tony Only

    Pounding Head, Broken Heart

    I am at loss of words Moxie ... So sorry for your less and hoping for a much much brighter PF future ahead for You !
  9. Tony Only

    Natural treatments for cluster headaches

    You'll just have to copy and paste the link ... When I inserted YouTube link, this forum automatically changed it to preview screenshot - so posting any YouTube link probably will not work on this forum. Posting that only gives me this:
  10. https://youtu.be/FblD-PAEzNI
  11. Tony Only

    D3 Regimen - Extra Doses

    Sounding good Seff. I have had to take several 10 day 2 antibiotics at the same time for h. pylori infection in my lifetime, those are especially brutal and wipe out a lot of the good bacteria as well. Almost every time clusters kick in after that. It's a slow recover day by day and any way you are able to support your gut to recover may help on the induced cluster as well. Keep us posted
  12. I am trying to read into both and with what symptoms they might present themselves on a cluster headache patient. I have a wonderful and very knowledgeable doctor who thinks my clusters might be partially reacting to either one. I have loads of other stuff related to these 2 conditions as well, had most all my life. I can't on the top of my head think of seeing much discussion about these.
  13. Tony Only

    Newbie help UK

    If your treatment in the future allows it, I can wholeheartedly recommend the Herbal Protocol: https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol Many who feel that using energy drinks regularly gets them in too high of a gear or upsets the intestines prefer Liquorice root, as tincture or as powder (which can be bought from a general store) although nothing beats fresh herb.
  14. Tony Only

    D3 Regimen - Extra Doses

    Batch can reply better when it comes to D3 Regimen but if I were you, I would get a blood test done ASAP to know what your Vitamin D levels are. At any cost and right away. If you are already in the green zone, taking these may not help, if you are in the danger zone, taking these might be dangerous. I personally believe the cause of CH might at least partially be in the well being of the intestines so this might still have a lot to do with antibiotics you used and any kind of inflammation can also play a part. Meanwhile being gentle on your stomach might help to improve things although slowly. Do you have anything else as treatment for clusters ?
  15. Tony Only

    Newbie help UK

    Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare. Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names. Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming. One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !
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