Tony Only

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.

https://www.facebook.com/hortonassociation/posts/510656216494396

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

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

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.

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)

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/

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

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

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/

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 !

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 !

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.

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.

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

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:

https://youtu.be/FblD-PAEzNI

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

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.

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.

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 ?

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 !

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.

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/

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 !