Tony Only

https://m.facebook.com/story.php?story_fbid=574070690152948 It is wonderful to read Tom has finally found relief.

Your help will always be needed, there are other areas where there are no indicators of helping efficacy or such ...helping others should and can not be ranked or listed or top-listed. Maybe an option to turn any "leader boards" off could help some of us. As long as there's cluster headache, there's need for helpful family members Thank You for all that you do Peace, Love and I hope you feel better soon

First I made it back to ECH from CCH and classic CH symptoms (blocked and runny nose, teary eye etc) reappeared that were not present anymore when chronic. Soon after I managed for the first time to prevent whole cycle (with tryptamines) I started to get CH attacks without pain. Always on the CH side. Then on different sides and couple of years later these were transformed more like extreme allergy attacks. Got my 1st every CH hit on right side. Antihistamines to treat these "allergy"attacks. Just a while back asthma was diagnosed (I disagree) and have gone through quite a few inhalers. In my (rather complex) case what ever is causing allergy attacks is bad, and for my transformed (mutated!) Asthma when used some inhalers are clearly bad for my CH. There are so many of them out there so you can do trial and error.

Hi Into Light, You wrote this earlier about Stephen King. I'm sorry you're having such a rough time ! Sending Love & Light !

I could not find a single leaflet in english (they're all in finnish) but here's a book about EbE's working with homeless. It describes the idea well. https://www.pathway.org.uk/wp-content/uploads/2013/05/EbE-Involvement-Handbook.pdf I am hoping more and more EbE's for rare diseases everywhere

Siegfried, Why does your neuro think you can't have CH, CPH and migraine ? Or do you think that ? We have encountered so many cluster headache patients (all female) who also have CPH in our finnish FB group that we created a sub-group for them. Some may have even more than three headache disorders going on. From what I have read it looks like very few are able to tell which disorders are happening simultaneously but I think pure CPH does not respond well to oxygen. I might be wrong though ! But I'm thinking if you get cluster-like pain in future while on indomethacin it might be CH partly responsive after all. You're more than welcome - you're not going anywhere I'm happy you found clarity and wish you would not have to suffer at all.

I'm sorry Taylor, this sounds rough. I am an admin in finnish CH community on Facebook. In 8 years we have only had few parents posting that their child has cluster headache. It is my understanding that using medications with children should be more careful than with adults but this does not always happen. I can't remember has someone had any guidance for dosing. I personally would not even dare to consider some medications which are terrifying even in adults (like topamax) and certainly practise great care with serious abortatives like triptans. I too think D3 regimen (Anti-inflammatory regimen) is the best (safest) way to go. Batch will help and tell more. I think CH community would urgently need something for parents so that they could learn from parents who have gone through same things. Could admins here set up a dedicated thread for this ? I could guide our parents here.

I truly hope horses do not have this. http://www.headshakingsyndrome.com/proposed_pathways.html

Herbal Protocol https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol Anti-inflammatory regimen http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Oxygen at home available at all times was huge for me, decreasing the fear I was living with. At this stage triptans were causing cardiac events (together with verapamil). Before turning to regular preventative busting I too was shadowing between attacks. For years I treated them with Herbal Protocol (I will insert link on the next reply). I had been using Vitamin D but when I started doing it right - the whole Anti-inflammatory regimen - shadowing more or less disappeared, for good. Now I have been 5 years pain free with combination of Anti-inflammatory regimen and preventative busting. Good luck mate !

All the best to BOF ! PF wishes to all forum users in these challenging times.

Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though. We collaborate with each other a lot but as an EbE we do not speak out (=advice) about treatments since we are not doctors. Our job is to tell our personal experience living with the condition and not advice about possible treatments, when we work at a hospital. Understandable course of conduct but also a balancing act for me, since I am also a patient, peer support, sometimes a friend, member of an association etc. And treatments that saved my life are illegal here but also part of my life's story. I think this kind of training and use of us patients in the heathcare is benificial for everyone, especially in cluster headache not well known at all.

Oh, absolutely, please do if you can do that !

Thank you both ! These are marvellous links and great PDF ! After aiming to help just a few this looks like a bigger, more organized work on the subject would be definitively needed here. What you gave are great help for that ! I will also contact Dr. Larry Schor - sounds like he is just the man to consult on this. I am all for anecdotal. I work as an "Expert by Experience" in Horton's syndrome (cluster headaches) in Finland. I give my personal experience to healthcare or face to face to another cluster patient so it would be used to help others. Some phenomenons in our communities will never make it to studies but it can be crucial to hear about them. Here's a bit about this program in english although this article covers mental health / substance abuse https://www.mielen.fi/experts-by-experience/

I am looking for studies or good articles about cluster headache that address the psychic burden of this condition. Article that would explain the fear, anxiety, panic attacks for some that we may go through. I think PTSD is most often mentioned as a possible affiliated diagnosis but the whole mechanism is rarely explained. There are people who are not taken seriously with these psychiatric conditions or these might be used as weapons in work life etc. People who try to work during a cycle may have to prove they are not under influence of alcohol (or other drugs) due to cluster symptoms or PTSD. I will attempt to do a little write up in finnish that cluster patients could use and share for their GP, boss, friends and family but if you could link to something that's already there or that could help thank you very much.

I'll attach a picture of a section of the website I was looking for. I think it's pretty much the same as the 13 parts in the forums ? Maybe somebody knows better, I thought maybe the website version was more up to date or it had additional content to it. I had been translating it to finnish very slowly over the years and it's far from done. I'll do my best to advice everyone register here and ask any questions they might have. Playing Well Together is asked about most at the moment (from me). I have heard of aborting attacks with different tryptamines mysef but don't have personal experience and know little about this subject. I think many that do this do not repeat or manage to repeat it (maybe due to "shutting the door") unless they use tiny amounts (as in SPUTs). Just yesterday I read here that "According to other reports (1, 2, 3), inhaled DMT can abort an attack in as little as 3-5 seconds." I think reports like that should make researchers jump right into this one. Thank you again CHfather (and for all that you do!) Here's my attachment: https://drive.google.com/file/d/1hiSrF4Oygu3aczlY2NT7lfP5VwlWR1GY/view?usp=sharing

Quite a few people on this forum I would love to see join our movement if you have time and energy. Every CH advocate is a valuable consultant for this no matter where you are located. https://sites.google.com/view/hortonyhdistys/in-english/petition-2020

Thank you CHfather. I am actually looking for "Busting - The Clusterbuster Method" section that used to be here: http://clusterbusters.com/?page_id=26 For some reason it was in my bookmarks by the name of "Psilocybin and LSD in the treatment of cluster headache"

Is "Psilocybin and LSD in the treatment of cluster headache" (the busting section) anywhere available to read ?

Here in Finland also the emergency personnel need to be thanked. When person X has called an ambulance many times enough just to get oxygen treatment for Horton's, often the emergency personnel are involved in the process when doctor finally makes that oxygen script.

I understand this might seem odd to everyone who is familiar with clusters and treatments. When we started the production this video was supposed to go to hospitals, police, security personnel etc. only to be distributed in their internal information channels. We decided to make it public as we went but it is still targeted to those who are unaware about clusters and different treatments. Majority of finnish patients we have encountered on recent 8 years our social media group has been active here have had difficulties with their attacks in public. People have been locked up, sedated by force, pepper sprayed etc. Oxygen is often not used even when one has diagnosis and/or some kind of paper with them guiding for it's use. We have kept a list of doctors who can write a script for medical oxygen - those doctors are so rare. Fastest way to get an oxygen therapy to your home is to have it used during an attack in an ambulance or in ER station (which is even slower). Distances in Finland are quite short in great part of the country or amount of ambulances on the road is so good; where I live I could get an ambulance in around 5-10-15 minutes. The ambulance presentation in video is to present the severity of the condition too. Unfortunately for some it is impossible to get oxygen at home no matter what - we can't get welding oxygen etc. in here as easily as in US because they are so regulated and permissions are almost impossible to get if you don't have a business in that field. I think many struggle and fight it out and stay invisible. Every ambulance call is logged and the reason as well. Using them is advocating to healtcare professionals. There was an intention to place a disclaimer in the end but the mighty corona got to us and the editing venue is currently shut down.

After 30 years of clusters there's a great difference on cluster side vs. "normal" side. I'm approaching 5 years without a cycle and my secretion is sticky and often bloody on cluster side even on these PF years. It's odd. Often looks like the cluster side is allergic and the other side is not.

Here we go !

First of all, my advice for everybody is to avoid alcohol completely in life in general and especially in treating clusters, no matter what you can achieve using it treatment wise. Personally, younger drinking too much, to the point of passing out provided me with a "shield" - a time period inside which cluster attacks did not happen. I drank more and more and during years this time period got shorter to the point when alcohol did not build this shield at all anymore. And I had a huge alcohol problem. Back then I used to think it lessened my attacks, I don't anymore - I think I got them back in spades later on. I have chatted with quite a few (usually male) clusterheads over the years who use alcohol for this shielding effect. I believe in the point when this is happening everyone is still quite manageable episodic. I don't want to encourage anyone to try or use it because there are healthier alternatives, for the brain and for life and people around us. But it's an interesting phenomenon which should be looked at that might help us understand clusters better and get us closer to finding the "cure". The other side of the coin; guys who have stopped using alcohol altogether at some point of their lives and have decades to look at cluster-wise usually notice there is some kind of correlation with no alcohol (different mind set) - no clusters (severe cycles).