Tony Only

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.

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

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.

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

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.

Stay strong Mox !

(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.

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

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 !

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.

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.

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.

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

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

Penises are not as dangerous, are they ? " There are things known and there are things unknownand in between are The Doors " - Jim Morrison

It's all Jonathan's great work ! I certainly will keep you updated. Hopeful again for the longest time.

https://youtu.be/AbOhVahPNl0

There certainly is more interest and business possibilities to this. It's still a shame to have BOL go forgotten (or has it been - I don't know). I am still overjoyed with this ! Our world will change with this and psilocybin research. https://m.facebook.com/story.php?story_fbid=164303895107031

After almost 30 years of clusters I recently had my first side shift and had a feeling of very small cluster lump (in neck) trying to form on my neck on the new side. But the knot (on my back) is still there on the old side so I think it's related to which hand one uses.

You might also find some discussions on other (older) sites with "cluster lump". I have had two of such, a "lump" in my neck on my pain side only appearing when I am in cycle and a "knot" in my upper back (nicely "under" my shoulder blade) that is more or less always there. Since there first one has now disappeared when I succeed in preventing my cycles, I need to pay attention to the second one (in my back). I have never had it massaged during a cycle but the physiotherapist who saw (or more like felt) it first had not seen one before or could not explain what it is. I do regular stretching aimed at that spot, yoga and such. For me most important thing is to pay attention on static work positions in a computer for an example. I think I have partly created it myself - even being anxious or tense and that reflecting physically via keeping my shoulders up just a little bit unconsciously - and partly it comes with cluster headaches, for some. I used to think it's all about muscles but nowadays I think vagus nerve has a role in all of this or at least the upper "lump". For me there is a big mental factor. When a lot younger I also associated increased heart rate to these symptoms and verapamil was a great drug - at first. Now I think it was probably slowing down my pulse and working together with vagus nerve to calm down the fight or flight-type mindset. Psychedelics, yoga and meditation have resulted to similar kind of state but more naturally. I think for many of us calming the mind down will also help with these knots and lumps and efficient treatments as well. But my "knot" still manages to surprise sometimes how active and ready to form to a trouble again it always is. Like pulling a lawnmover to start when you are furious - "here I am!" Here's a bit about vagus nerve with a quick Google search https://www.psychologytoday.com/us/blog/the-athletes-way/201705/vagus-nerve-survival-guide-combat-fight-or-flight-urges

Hi Dr. Julie and welcome ! I personally see 2 paths to travel; pharmaceutical and non-pharmaceutical but many of us mix whatever helps. I think the best way to choose your own is to read experiences of others and listen your hunch. It will get hell of a lot better from now on ✌️

I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !

Hi all, I wrote here in 2018 on behalf of a young girl in our finnish Cluster headache Facebook group (my post in this link). She was treated as a cluster patient but the diagnosis was not set. Now she has finally received a headache diagnosis for hemicrania continua but her situation has not improved at all. I will attach her post translated to english below if anyone has any ideas or suggestions what to do or try. ---translated message begins--- Howdy! It’s been quite a while since I have last posted anything here, but I really am now at my wits’ end and do not know how much longer I will survive like this. For background: my worst problem is 24/7 headache and more severe headache attacks that happen daily. And the vertigo and nausea that follow my constant headache. I also very likely have hEDS that affects my overall health with symptoms it presents. My father has hEDS but I have not yet managed to get a diagnose although I fill all the criteria. All my treatments have completely stopped at this moment regarding my headaches. I have visited a neurologist in january and I received my first diagnosis (hemicrania continua). The doctor was very appropriate and listened to me, and prescribed indomethacin. This medication was not suitable for me though causing nausea and vomiting. After this all the contacts have stopped. I am under the impression that I am waiting for a neurostimulation surgery but the situation is very unclear. At the moment I have nothing that would help me with my pain so I am taking any suggestions for self treatments as well. As years go by to me it feels I am getting worse, I have not even graduated from high school and I feel I am just a burden to this society, living with other people’s hard earned money. I don’t want to be a parasite, I want to study and work. I want to earn my own money I can spend without feeling guilty. This idea just seems impossible with my deteriorating health. I have been regularly fighting with public healthcare for over 8 years now and there is no end in sight. Generally I feel that no one wants to help me and my life is meaningless, when even doctors may treat me like an animal for slaughter. So how do I pass this phase, how to carry on and not to feel like being a complete loser ? What am I even looking for with posting this, I don’t even know myself, to release some bad mood and anger I have inside and to find support I guess. And I am sorry for my confusing text, it is hard for me to concentrate due to my aches. I hope all of you are doing better in the limits of our pandemic and you are looking forward to nice and sunny summer !

My brain has not recovered from Topomax and I am slowly accepting it that it never will. If someone I care about would like to use Topomax for anything, I would probably force them off their hands. I would estimate it to be safe for around 10-20% but we don't know beforehand who these people are. Majority recover from possible "side effects". But some do not. If there would not be any other options in the world than Topomax ... nah, it would still be No. EDIT: There is a Facebook of 8960 members here. If you do a search with "Topomax" or "Topimax" (european product name) around 75% of the experiences are horrifying (at least to me).

It's probably some odd ratio of posts and likes and such. Pay no attention to leaderboards it would be nice to see more than 4 though.