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Tony Only

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Everything posted by Tony Only

  1. 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
  2. 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/
  3. I did not think very brightly when I posted that since this is a member only area, but we should start reaching finnish clusterheads now better anyway; we have founded Horton Association Finland on 17th february this year. Cluster headache is also called Horton's syndrome in Finland, name we actively aim to use instead of a term "headache". We are here and here PF wishes everyone !
  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. 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. 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.
  7. I am at loss of words Moxie ... So sorry for your less and hoping for a much much brighter PF future ahead for You !
  8. 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:
  9. 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
  10. 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.
  11. 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.
  12. 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 ?
  13. 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 !
  14. I tend to be preachy about verapamil, it's a drug that creates lot of heart problems. Anyone who is on it, needs a checkup (heartfilm) every time dose changes by 80mg or more. This is the official guideline but many doctors skip it. 240mg is a normal dose for someone with heart issues. Since we do not, 240mg is a bit high. But clusterheads have survived from 1000mg daily or more, myself included, with a heart failure though. I personally would recommend to try alternative safer things first, not simultaneously with verapamil, but that's just me. Did you read this article already ? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people - there's a chart (labeled Update Jan 2017) that should be more simple. Some people who start vitamin D as en emergency only take Vitamin D (for an examply 10,000IU per day) and Vitamin K-2. Then they will do complete regimen when they have blood work done. It's important to check the Vitamin D levels with a blood test. The Psilocybin and LSD page I linked really covers the mushroom and seeds part. It's good to read completely over time, since you must not "just" take these substances but also learn what you are doing. Psilocybin mushroom is the kind we need or seeds that contain LSA (often called Rivea Corymbosa or RC seeds or ololiuqui seeds). Mushrooms is more of a "trip", seeds is more of a nausea. Here in Finland it depends a lot of the doctor what they think about Vitamin D although it should not really be a matter of opinion. Some recommend it, some forbid it. Doctors are unable to recommend psilocybin and I think many do not know about the subject at all unless they are linked to patient communities. There may be judgemental views too. I think the decisions made in the beginning will have a huge impact on the forecast what cluster headache will be later in life. Too few find all the options available to be able to make the best decisions. I wish you all the best and pain free life for your wife as soon as possible.
  15. CHfather has compiled an absolutely astonishing O2 article, it's on this site. Batch can help you best with Vitamin D. Even neurologists get very little education on clusters on their basic schooling so usually we are bringing more awareness and information from patient communities to them on each and every visit if they are the kind that listens. Best outcome is to find a way to prevent cycles and attacks happening altogether. Only known way that could happen by itself is old age and that group is tiny; who have their cycles disappear probably due to changes in hormonal activity. I would not count on that and I dislike doctors telling that to CH patients. We have no medication for clusters and that might not happen for a pretty long time. There is no prescription medication one could use year after year cycle after cycle that will keep on working or the side effects would remain tolerable. As personal opinion, many go from episodic to chronic (worse) due to too much medication and because at some point you have to abandon 1st and 2nd line of medications and turn to (usually less effective) 3rd and 4th line of medications. I am unable to recommend that route to anyone. Luckily nowadays we have self treatments coming from patient communities such as this one. Depending on the severity, on "lighter" cluster Anti-inflammatory regimen (Vit D) alone might lead to pain free life. Episodics who have transformed the condition into more severe may need something else too and especially chronics. The most effective treatment is busting, using tryptamines (hallucinogens) to prevent cycle from starting. People take them 1-4 times a year approx, they are not used all the time. Here is more about that https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/ For the outcome part, anyone who ever asks me that, I would advice to read this blog, completely - but it is in finnish and I don't know what kind of a job translators would do to it. It is a magnificient piece of work by a friend and clusterhead, Niklas Koponen: http://sarjoittainenpaansarky.blogspot.com/
  16. UK people can help you much more, I'll just say about triptans (sumatriptan): tablet form is useless for most of us. There is an injection and nasal spray that are used and work fast enough, injection is faster. Triptans are problematic too since one should only use very little of them (not too regularly/over use - doctors orders vary a lot what is safe) because they are able to keep cycle going and even make things worse. Oxygen is equally effective, it really is, and can be even more so. Oxygen is safe, it won't make CH worse. It takes some effort to get an oxygen treatment setup right. You need high flows (15-25lpm litres per minutes) and prescriptions usually have way too low flows to help us. Plus a good mask, cluster headache mask, non-rebreather mask. Please read the oxygen file on the site. Anti-inflammatory regimen (Vitamin D) helps many (at least 80% of us) and is safe compared to prescription medication we get. Other can guide you further. Did I say oxygen ? O2 will be a life saver !
  17. Reminded me of image I posted some years ago to Clusterheadaches facebook group
  18. I am looking for any input or ideas for female patient who does not write in english so I am posting on her behalf. I don't know much about the brain injury involvements in particular. Cluster headaches have begun and gone pretty severe in just few years. Here are some background details. Anything anyone can think of, to help or to try, it might help. Anything I can ask from her. Brain injury in 2013 which left some symptoms; headaches, fatigue, memory problems and trouble with balance. Cluster headache diagnosed in july 2017. Medication prescribed for it: steroid course, verpamil, imitrex when needed and medical oxygen. Only triptans and oxygen have worked. Diagnosed further as chronic in 2018. These have been tried: Gabapentin - not effective Topamax - too severe side effects Baclofen - too severe side effects Lioresen - not effective Diazepam - only makes sleepy, not effective Tramal (opioid) - increases amount of attacks Tried during hospital stays: Valproates Indomethacin Dexketoprofen ...these have only helped a little They might help with oxygen but do not prevent attacks from happening. Verapamil dosage has been 360mgx3 times a day (total 1080mg/day) and now it is lowered to 120mgx3 (total 360mg/day). In addition to others there is melatonin daily at 9mg dosage. Oxygen and triptan when needed. Occipital nerve block done last week, maybe it has only helped by decreasing a few attacks. Her blood level for Vitamin D is 175 nmol/L. She is waiting for SPG stimulator but due to delivery problems it will take a while. Needless to say probably, she is exhausted.
  19. I can totally relate to this. I have PTSD and pretty severe trauma background and for me, every "trip" for cluster treatment I won't be expecting anything good - so the set & setting is way off. I can't do mushrooms on the normal doses pretty much at all. For me who prefers not "to go there" but still needs to treat clusters, LSA is a good option. Or a bad option, since it's no "fun" - mostly nausea but there are almost no psychedelic effects. There's always kind of a pressure present in my life because of the need to prevent with something I am super uncomfortable with but if I don't, facing cycle is way worse. That's a tough spot you are on. BOL would be a life saver for guys like us.
  20. Thanks for the encouragement, so I finally did. It gives a lot of hope that there are doctors like McGeeney available for our community. I was thinking how great would it be for some ideas to get exchanged between US and finnish doctors. To me it has always seemed that doctors in here, especially in neurology, don't have any kind of source for information what is happening and has been happening in patient communities. For a long time. Cooperation would probably have a huge impact.
  21. I have been administering the finnish group now for 6 years, I would say steroids are the most potent to affect negatively on cluster headache cycle length and via that to status; most episodics that go chronics do way more steroids than anyone should (if you consult GPs) - if you are in that group that medication will transform your condition in the long run. On steroids it would mean annual use or several courses inside the same calendar year. Many self-medicate using it non stop. When the regular steroid response is gone, adrenal cortex might not be working anymore (which should be kept eye on anyway if on steroids) and the last option is IV steroids. In a large group it's fairly easy to do comparisons or questionnaires on cycle lengths among people who have never touched a cycle with steroids and those that do regularly and only one of those groups has extending cycles. Same deal with triptans (Imitrex) - they are not this dangerous to everybody but for some. But they usually bring additional attacks and intensify the ones happening. But since triptan molecule is around your receptor for days, it is doable to keep the cycle neverending with them as well. Verapamil probably affects least to the condition itself in a bad way. Yeah, I remember when it was thought to be one of the worst. Still many people account it for making them chronic. Patients descriptions about this phenomenon should be recorded somewhere. To me at least, it happening for some is equally destructive on quality of life than cluster headache itself. It doubles the misery. 'There's probably zero scientific data on this.
  22. This left me puzzled, what happened that made you go back to pharmaceuticals ? Tryptamines (MM) will abort this kind of situation but there's a detox from everything that is blocking, anything that might be even interfering and even then it can be hard with pharma background. Those who have had the certain drugs on a long term use may need additional tryptamine or cycling of tryptamines LSA-psilocybin-LSD but if this is done right, on a prescription medication body I can not imagine going back from that. I am just wondering why. If you do these with blockers in your system, you will still get the psychedelic effects but no response to cluster headaches. If you are able to detox to medication free, you can do subhallucinogenic doses if the effects are unpleasant. Again, in our finnish group there has never been such amount of busting not done right than in the last few years. Probably because many will not discuss what they are about to do (laws) to have others help if treatment response is not what it should be - which is absolutely terminating clusters. Tryptamines are not just an addition one can throw in, you absolutely must know what you are doing and how to have those receptors free for healing molecules. I am sorry I don't have the skill to write in encouraging way, I see a bad situation and jump right in being very solution orientated.
  23. To me, this sounds like a cluster that has been boosted into a whole new level with the help of prescription medication - steroids and triptans (Imitrex) being absolutely two of the worst. They are like fuel for the fire in the long run. For some it happens in few years and for some it takes a decade or more - regular use of either one, both together being the faster route. I have almost exactly similar personal experience and nowadays these kind of patients arrive to our finnish group almost weekly. For some of us, steroid&triptan combination is able to make oxygen work less efficiently at first and if the use is continued lead to oxygen not working at all. Triptans not touching a hit at all is very rare but it is doable with steroids but at this point you usually are receiving them intravenously or you have done too many high dose courses for one lifetime. At my IV time nothing touched my hits anymore. Depakote and verapamil obviously are not helping here, first being able to screw up your brain more and verapamil obviously useless since it's a preventative. Because this does not happen to all of us, not even all who regularly overmedicate with the two, it's not always though of and even questioned at. It's certainly a possibility to be considered when there's a pattern. What I personally don't get is how doctors systematically miss this; in my country the most usual way to neglect this is to say some cluster headaches transform this way - which is not the case. It should jump right out of those patient files reading 5 years back for an example. I hope this is not the case and it's just a really evil cycle. But if you see a pattern going steadily worse cycle after cycle this is probably it. Not many things one can do but to detox to a point that oxygen begins to work again. After detox anything you will do (Anti-inflammatory regimen) will be more effective than they would be when on prescriptions (when they are the cause for things going worse). I can't but wish you all the best and I hope you feel you are somehow able to detox and find better routes, busting, Vitamin D, Herbal protocol.
  24. I thought I would create a post here mentioning the finnish terms for cluster headache and some information so other patients in our country are able to find us if they use google for an example. The exact translation of Cluster headache in finnish is Sarjoittainen päänsärky. Never liked the headache part in it. So many of use Hortonin neuralgia (Horton's neuralgia or neuralgy in english - this term is used a lot in literature over here) or Hortonin oireyhtymä (Horton's syndrome) which to me is the most "correct". We have a need for association but so far there is only a patient community that can be reached in Facebook - it's called Sarjoittainen päänsärky. There is a fairly large member base at the moment around 1400 finnish clusterheads. And we have a little clusterbusting secret society somewhere, so I have heard. I have a little site in finnish but it's just information gathered in one place and would need good structure and a "real" website as well. I hope one day I can finish finnishing the Clusterbusters Method there completely, then it can be freely used here at the Clusterbusters website for an example. As a resource for new finnish patient just diagnosed there is an excellent blog that offers knowledge and things to think about that are essential for survival as a CH patient in Finland. I thank everyone at Clusterbusters for being alive today and for any finnish clusterheads wandering to this post - join the community ! PF wishes
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