Tony Only

I could not find the whole paper in english to find out what the presumable trigger area in the study was. But I thought this is more or less forgotten when SPG blocks became more usual, or this has been a pathway to some modern treatments. Most people reporting structural abnormalities in our group seem to be the ones who have SPG implants. And they are working for them.

Recently I had a conversation with a fellow clusterhead who is not always considered a "pure" clusterhead by professionals since his CH began after whiplash neck injury. Oxygen works magnificiently well with him. He said he has used diving as a preventative (with gear not very deep I assume) and currently has a swimming pool at work and is using diving in that every morning. He's bit of an odd bird, also uses snuff (tobacco you put under your lip) to prevent his CH.

We have had a 3-part questionnaire (totally non-scientific) open few years now in our finnish Horton (cluster headache) group. We are asking especially about stuffy nose and trying to figure out if Horton patients have more structural abnormalites than other people. Here are the amount of responses currently (september 2021). 1 a : My nose is more stuffy than usual during my CH cycle but I also have stuffiness outside of CH cycles - 86 votes (69%) 1 b : My nose is stuffy only during CH cycles - 32 votes (26%) 1 c : My nose is not stuffy at all - 7 votes (5%) Total of 125 votes 2 a : My stuffy nose is always on the same side - 82 votes (78%) 2 b : The side of my stuffy nose is random or on both sides - 23 votes (22%) Total of 105 votes 3 a : The structure of my nose is normal - 41 votes (42%) 3 b : I have had a confirmed structural abnormality in my nose but it is fixed - 20 votes (20%) 3 c : I have a confirmed structural abnormality in my nose but it has not been fixed - 20 votes (20%) 3 d : I think I have structural abnormality in my nose but it has not been confirmed - 17 votes (18%) Total of 98 votes In the discussion of this questionnaire I learned about this study: https://pubmed.ncbi.nlm.nih.gov/8924166/ It looks like if you are responsive to applying an anesthetic to nasal triggering area, your CH might benefit from nasal surgery. In the same discussion someone mentioned they are using Neti pot (https://www.fda.gov/consumers/consumer-updates/rinsing-your-sinuses-neti-pots-safe) with very cold water to abort. More people tried it and had success too. Now I am wondering could everyone with some kind of nasal structural issue benefit of the use of Neti pot ? Do you have any ideas or experience ?

Thanks @BoscoPiko Personally I find the whole concept of us being forced to acquire our medication by ourselves repulsive, if it's psychedelics or vitamins. It just bugs me way more when we need to worry about the right quality or the kind of our medication, possible safety issues and when it comes to psychedelics not being able to even discuss our care and medication with anyone. I am doing rather ok now with iHerb products and shall try to approach finnish research doctors that have some kind of knowledge about high dose Vitamin D so one day it could be easier for the future generations. Currently I can not afford pharmacy grade products so should I encounter any additional problems I will visit some nice trails in humid finnish forests

Thanks @spiny - my latest blood test shows my level at 250nmol/l - but it's probably much much higher. The laboratory in our public healthcare system only shows numbers up to 250 and they say the can't measure it higher than that - I don't know what BS this is. You can get blood test on a private sector to get the exact number, I have only done that once (I was at 473nmol/l) since it costs so much. If I would also test for calcium and PTH we would be talking around $400-$500. The higher the numbers I am presenting to the GP I see (in here it's totally random, different person every time) the more self destructive they think I am taking these insane amounts of vitamins. So in the last years I have not bothered. I have been out on the sun more than usual, we had a heatwave 2 months straight this year. I truly appreciate your opinion and tips and tricks ! Little guy is amazing and one more reason to push one gear harder on our joint mission to get us all PF one day Thank you too very much @xxx - you explaining this with a term "moving target" and now even I catched on. This may very well be what is going on at the moment. I don't know what I was thinking when I stopped smoking in 2017. Pretty soon I developed allergies that became more and more severe (prior to that, 42 years without any kind of an allergy or sensitivity to anything) and couple of years later asthma. I seriously would not have quit should I have foreseen this - I would have kept all that tar in my pipes as a protection ! This current odd mixture of shadow level CH acting up and weird allergy attacks is how my head decides to appear at the moment. I have been adjusting my intake of Vitamin D according to symptoms. Also thank you for all that you do for us !

I have been doing the Batch regimen (anti-inflammatory regimen) for many years but precisely only last few (before this I was lacking vitamin B's and such). Although it keeps me mostly pain free and has decreased my pain levels significantly, I have never managed to stay 100% PF with it. For CH outbreaks or for planned prevention I have needed to add busting with psychedelics, which have always worked exceptionally well even as low doses. I am a spokes person for cluster headaches in my country and as a side job I tell my experience as a patient in lectures in hospitals etc. This naturally includes use of psychedelics which are illegal in my country. I now have a 9 month baby boy and due to me talking about psychedelics we have had child welfare services visiting and following us ever since the boy has born. I have agreed not to use psychedelics at home and this is why I have had to rely on Batch regimen alone. Pretty soon the basic 10,000 IU per day was not enough for me and I had to lift my daily dose to 15,000 IU, then to 20,000 and now looks like 25,000 is the next step. I know our hero and saviour @xxx will tell me this is not a problem at all as long as my calcium and PTH are in the range but I would like to know is it possible I will need more and more, can my body "get used to" high amounts of vitamin D? I wanted to ask this in public if anyone else has had the same experience. I know about low responders (we have an older genteman in Finland who is definitively one) but I don't think I am such, I have been actually responding too well in the past. Part of the problem is that there is practically no one in the healthcare in my town, in my region, or in the whole country who would OK the use of even 10,000 IU constantly and believe me I've looked. And will keep on looking, we surely need someone who will study the Batch regimen and recommend it to patients and follow up on them.

I'm following this thread

Thank you all so very much for your input ! @BostonHeadacheDoc Yes, O2 aborts efficiently and he is doing the extra inhaling after pain is gone so attacks coming back so fast is puzzling. Yesterday I sent his daughter some videos showing hyperventilation and breathing techniques. Attacks are very classic CH going fast to severe, but untreated duration is unknown since X does not want to know how long they would last without O2. I can relate to that. He has had mostly night attacks previously but in this cycle hits are coming regularly, day or night. I had not asked about alcohol, I sent a question. He has had verapamil but probably not melatonin - thanks for reminding of that ! Will ask about sleep apnea. I hope they can find someone to take a closer look at the imaging. The age where onset happened is rather peculiar. Thank you so much ! @spiny Yes, there is sufficient post breathing, that's why it's so odd that frequency is this high. I think he will be able to get a new D3 test soon, with loading doses used he should now be way up higher. I think the Vitamin D3 products used are quite reliable although they are locally purchased. We had headlines around a decade ago about vitamin products sold and tested here containing zero amount of vitamins promised ... so you never know. I guess I have kind of forgot about melatonin, it's dismissed over here quite a lot often with a comment it's lacking scientific proof. I don't know much about his diet, other that he eats very basic food and has not altered anything between pain free and now. But very cool input from you guys, I forwarded your information to X's daughter. Thanks spiny ! @ThatHurtsMyHead On his previous cycle he had to use many steroid courses with increasing doses and he felt they contributed to CH going more severe and cycle kind of neverending. I have understood they do not consider them again. I have personally had them delivered IV in larger amounts but really hesitate to recommend that (to anyone). I think actually 5 day dosing schedule was not carried out carefully. No tripping, even 3+ gram doses do not seem to do their thing in that sense. There are no blockers present. Busting material should be potent, others have used the same material. Very beneficial information about diet and completely new things to me ! (Tyramine) I forwarded your messages too to X's daughter, thanks very much THMH ! Keeping my thumbs up and will keep you guys and gals posted

Things are looking pretty bad. X is now almost three weeks in doing Batch regimen (anti-inflammatory regimen) on 2 week loading schedule. Since things were not improved after 2 weeks, I adviced him to continue third week on 20,000IU/day dose. Still no progress. I messaged X's daughter to try and get 25(OH)D measured again. Before starting Batch regimen it was 85 nmol/l. I am starting to wonder is this "natural" cluster headache at all since it is not responding to MM or Batch regimen. His head MRI is clear but could it be some spinal issues? Previous relief might have come from steroids or LSA. His symptoms are textbook cluster and now averaging on 10 severe attacks per day (there are probably same attacks reactivating short time after using oxygen). Does anyone have any questions that I could ask him to try and figure out what this is?

For me the "migration" period lasted over 6 months, pain did not follow any schedule like CH should and was more constant (lasting whole day) than attack-like. Slowly it formed into a new kind of CH on my right side. Kind of reminded me how this was 30 years ago when it began. It's creepy and spooky, I wish the damn thing would return home. I too had dizziness, nausea, sweating - things that I never have with CH. It really feels like it is trying to break through something. I wish whatever it is it will pass soon for you !

Hi , @kat_92 is 8:30 p.m. so did your headache last around 4 and half hours ? I hope it's not a sideswitch. I recently asked about this on Facebook since so many fellow patients in Finland have had their CH change side this year or last year (and me too). I have had CH for almost 30 years always on the left but around a year ago the Beast moved permanently to the right (gave first signs in 2019). I thought it was some kind of breakthrough attempt since I have pretty heavy duty treatments. It sure was weird having everything else move to the new side too, including muscle problems which I had thought had something to do with being right-handed It took me a while to figure out it's CH since I had no clear cycle or even bad hits. Attacks were so strange I thought it must be some other headache. I could be having really bad shadows 24 hours plus, or the attacks were too long. Plus being the "wrong" side and all. My neurologist diagnosed it as migraine. It was CH all along moving slowly to the other side. Still to this day my first thought always is "this is something else" because my brain just does not recognize this happening on the "new" side.

I'm sorry I can't be of help in what you asked but wanted to comment on 5 day microdosing; surprisingly it's been effective for many people I know lately. Have you tried doing the Batch regimen in it's entity ?

I have only watched it halfway through but am already thinking how can psychedelics treat so efficiently this possible autoimmune and genetropic disorder and where can we find someone to explain that as well as Batch explains Vitamin D3 anti-inflammatory regimen here Great video and so needed - I truly hope every Horton patient in Finland watches this AND people treating them.

I'm sorry I can't say anything about the scripts you are asking and may even confuse you further but these are what came to mind for me. I think I have seen others think about the same things, post covid CFS (or sometimes just regular CFS) somehow interacting with CH. One treatment I remember seeing often in finnish CFS sites is LDN (low dose naltrexone, an immunostimulant) and (in there) I have seen claims that it would also help CH. I have used it myself for Chrohn's disease, it was super efficient but turned out later I do not have Chrohn's - at least not a typical one. I am personally sceptic that it could help "classic" CH but maybe when there's some kind of relation to CFS ? One female CH patient in Finland who received help for CH via "carnivore diet" wrote that she has mast cell activation syndrome, which is the condition that triggered CH in her case, according to her. I hope you find solutions and start feeling better !

And another one https://www.lumc.nl/over-het-lumc/nieuws/2021/juli/LUMC-onderzoekers-vinden-eerste-genetische-risicofactoren-voor-clusterhoofdpijn/

I myself and my living family members gave blood samples for study of genetics in Horton's neuralgia few years ago in Finland, but this is probably a different study. Still makes you think if Vitamin D is affecting the genes in question https://consumer.healthday.com/b-7-19-geneticists-probe-origins-of-painful-cluster-headaches-2653791014.html

Thank You Batch - will do. Couple of people have sent me their lists, I will save them and share the products here. We have a system where there's an annual maximum for healthcare costs (including pharmaceuticals) for an individual. While that's great, one result is using vitamins (especially if bought locally, lightweight but pharmacy grade) being way more expensive than any amount of any prescription meds. This together with not getting approval from your doctor is an (annoying) issue over here.

Does anyone get all their vitamins and co-factors in the anti-inflammatory regimen (Batch regimen/Vitamin D protocol) from iHerb ? I have been struggling with this for years, buying locally (in Finland) those that I can find and buying from iHerb the ones hard to find locally (vitamin K2 and such). It's been difficult since our local products are very lightweight for this use. For the first time I am down to 6 different producs (Vitamin D, vitamin K2, magnesium, fish oil, 2 multivitamins) but I think I am still getting way too much things that are not required in the regimen. I have been thinking of buying everything from iHerb (now that finnish customs will tax every shipment anyway) and wanted to ask if you have been able to build the whole regimen easily from products available at iHerb ? Please list the products if you can. This could help others too in different countries since iHerb is shipping all around the world. I think there are other countries where some vitamins and co-factors are hard to find too.

I too would say show it to your doctor. I think solely as cluster related it's rare to happen to a degree it's affecting your vision, but it does happen. I would estimate seeing that around 1 in 500 clusterheads (but don't know if there are other things causing it) ...

Thank you @jon019, @CHfather, @Luis Interviewing X's daughter further there's a special place (garage) where X spends lot of his time smoking and doing crossword puzzles so there might be some of those environmental / allergy issues right there. I did my searching and looks like we don't have diphenhydramine available in Finland anymore. I'm not sure could you get that imported if your doctor writes a special license for that. X has started Batch regimen (anti-inflammatory regimen) today on a 2 week loading schedule. I recommended melatonin since nights are worst but not having hopes up for that one. One thing that might help is finnish Acetium (L-cysteine) that some heavy smokers have found beneficial. Sometimes there's even more acetaldehyde in their diet so it could cover few issues at the same time. Keeping my thumbs up

Aww, that's sorry to hear @Vipul Possible changes in CH are not a life sentence. You can go from chronic to episodic too. I just found your other thread and will reply to that one. Wishing you strength

Thanks for the link @CHfather ! If I were to think that all the CH pain and pain related signaling is traveling through these old neuronal connections, and when new neuronal connections are established they don't know what CH is. But to us that means these new connections are free of pain signaling = PAIN FREE I love the image when beast is overrided and overtaken and it stands powerless as distance grows in the rear view mirror. Also an important publication for suspicious minds

Thanks @jon019 ! He was actually away from home in motorsports event and was unexpectedly pain-free which might suggest towards some environmental factor. I don't know about his diet other than that there are no clear triggers he would be aware of. Good thing to consider ! I will pass along your suggestions, thank you again Edit: I think our european Benadryl is somehow different from yours (and thus useless). Benadryl 8mg sold in here is acrivastine.

We have been trying to help an older fellow clusterhead who is not on the internet with a little team of buddies. The challenge is a presumed cluster cycle that does not seem to respond to treatments that would work for most. I guess I am asking if someone sees some other condition or cause between the lines or has some ideas what should be checked to outrule any other causes for such a tenacious situation. Here goes ... Case is with male patient, I just call him X here, close to his seventies. Cluster headaches started in 2018 when diagnosis was set right away and incredibly lucky X also received oxygen as an attack treatment right away. Head MRI also taken in 2018 and it was ok. He has only one minor neck injury in his past, very large operations with his teeth (several teeth removed) when cause for his headaches was not known. 2019 headaches came back and it was a horrible year, CH being even more severe than now. 5-6 steroid courses did not terminate the cycle and this cycle may have been terminated with RC seeds but not sure. Here and there X has been taking Vitamin D. Headaches were gone for almost two years and now have returned in change of 2020/2021. So X has experienced only around 3 cycles in his lifetime. Current cycle is pretty bad, attacks coming around every 2 hours, for maximum of 15-16 attacks per day (attacks may blend in into one another). I have his attack diary if it helps. Current medication is only oxygen and Diclomex rapid 50mg (diclofenac). No other medications in use. X has been trying to terminate this cycle with psilocybin (mushrooms) and especially before using mushrooms attacks were happening like clockwork. Headaches seem to react to busting, but not by calming down, by increasing frequency and severity. This was expected at the beginning but IMO should not be happening anymore and it is. 4 doses have been 1st dose: approx 1-1.25 grams 2nd dose: approx 1.5-1.75 grams 3rd dose: approx 1.5-1.75 grams 4th dose: approx 2.5-3 grams I asked him could the cycle be happening like it is now if he had not been taking mushrooms and he said probably yes. This is a man who has never used psychedelics but he felt the 1.5 (-1.75) gram dose being more or less the same than the 2.5 (-3) gram dose. X will probably keep on busting and his daughter is delivering him vitamins this weekend for Batch regimen (anti-inflammatory regimen). Some vitamins are hard to find in Finland but especially so in the countryside where X and his wife are living in. I'm personally wondering - Since there are no blockers present, is there such a thing as very personal reaction to psilocybin that even 3 grams would not be felt - Is there some another condition that could be mimicking CH symptoms almost exactly but would not show up on head MRI (something spine related perhaps like cervicogenic headache) Any ideas or thought would be very much appreciated

The title, "Educating Health Care Professionals" is not possible done as single patients, spouses, family members. Join the nearest local headache organization, create a CH sub-group if needed and working as a network you can and will start making a change. When we are giving feedback or demanding a change after an ER or doctor's visit backed up by our local and possible mother organizations patient after patient that will be noticed. We seem to be very fragmented, isolated and alone in many countries. And at the same time each of us are dynamos. Pf wishes to your family