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Tony Only

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Posts posted by Tony Only

  1. @Bejeeber Ahem. I have an alternative explanation for the poster ! (Prediction to the future)

    There will be a US doctor named Dr. Seuss who will administer some serious doses of psychedelics in sessions spaced 5 days apart to patients suffering from Horton's neuralgia. In every session, an album by an english rock band called The Who is played in it's entity. Patients describe that in these treatment sessions they feel how their illness is slowly but steadily becoming fearful of the Who's music, and during their trips they actually see how every power chord struck by Pete Townshend is breaking bricks in the brick wall of Horton's neuralgia. Major breakthroughs for forced remission are usually achieved around in the beginning of the 5th - "Who's next" session when psychedelics are kicking in and Baba O' Riley is playing (and needless to stay, bricks are flying). This leads to a saying "Horton hears a Who" when talking about this treatment ! B)

     

  2. Article in swedish: https://www.hjarnfonden.se/2023/03/varldens-forsta-centrum-for-klusterhuvudvark-oppnat-pa-karolinska-institutet/

    And a Google translate:

    The world's first center for cluster headaches opened at Karolinska Institutet

    Cluster headache (Horton's headache) is the most painful headache there is and is sometimes called a suicide headache. Now the world's first research center completely specialized in cluster headaches has been started at the Karolinska Institutet in Solna. The center has been made possible thanks to support from Hjärnfonden and a large donation from philanthropist Rune Andersson and his foundation Mellby Gård.

    On February 3, the world's first center for research on cluster headaches was inaugurated at Karolinska Institutet in Solna. The coordinator of the center is Andrea Carmine Belin, associate professor and research group leader, who for many years has received support for her research from the Brain Foundation. She is the spider in the web and the one who decides which projects should be pursued.

    - We needed to create a center for research on cluster headaches in order to gather all the expertise at Karolinska Institutet, start new collaborations and to make the disease visible, she says.

    At the new center, research and clinical activities can collaborate with the goal of better understanding the mechanisms behind the disease in order to be able to make a diagnosis earlier and develop better treatments or even a cure.

    - The fact that the center is right next to clinical operations that treat patients with cluster headaches and migraines means that we can easily test what we come up with, new treatments and other things, directly on the patients, says Andrea Carmine Belin.

    Donation of 34.3 million made the center possible

    The new center has been made possible through a donation of SEK 34.3 million by business leader and philanthropist Rune Andersson through his foundation Mellby Gård. The support is divided over seven years, which guarantees a long-term perspective and continuity in the research.

    Gilberto Fisone is a professor of neuroscience and has been involved in the project to set up the cluster headache center from the beginning. In addition to being on the board, he is head of the department of neuroscience and sits on the Brain Foundation's scientific committee.

    - It all started with the support that Andrea Carmine Belin's research received for many years from the Brain Foundation. The opportunity to build this center for cluster headache research was already created there. At an earlier stage, a donor in the form of the philanthropist and business leader Rune Andersson and his foundation Mellby Gård came in via Hjärnfonden's Donor Program and supported the research that Andrea was conducting, he says.

    At Karolinska Institutet, the conditions for creating a center have existed for a while with modern research environments and a well-developed contact with care. But above all because of the completely unique biobank with biological samples and clinical information from patients diagnosed with cluster headaches.

    - The biobank is the world's largest and it is the entire core of our research. With it as a base, we can do both biological and epidemiological survey studies. We continue to build it all the time, says Andrea proudly.

    What has been missing for a research center to become a reality has been funding. Therefore, Rune Andersson's donation of SEK 34.3 million was absolutely decisive.

    - Rune Andersson's contribution is extremely important, above all because it is long-term support, says Andrea. We have received funding to run the center for seven years and this investment will be able to lift our research even further and bring us closer to the goal of finding a solution to this disease mystery.

    What does the Hjärnfonden's support mean for the centre?

    - The brain fund has meant an enormous amount to me and the research I conduct, says Andrea. I received my first scholarship as a newly awarded researcher from Hjärnfonden and it enabled me to continue on this path. Getting support early in the career is extremely crucial for many researchers, in order to be able to continue at all. If the Brain Foundation had not supported my research from the very beginning, we would not have a cluster headache center today.

    What projects do you have going on right now?

    - Heredity is our greatest interest. Between 11 and 20 percent of cluster headache sufferers have a close relative with the disorder. We look at some different genes, if you have certain types of deviations in them, it means a greater risk of getting the disease. Circadian rhythm is also important as we know that nocturnal attacks of cluster headaches are common. That's why we follow patients' sleep patterns closely. We are also very interested in gender differences and have seen that women suffer more from the chronic variant of cluster headache while men more often get the episodic variant. The result can be of great importance for how and when a diagnosis is made and what treatment the patient receives.

    How was the inauguration of the new center?

    - Very funny! It was a good opportunity to invite those who supported our research, collaboration partners and the rector of Karolinska Institutet. The support from the private sector is incredibly important for our research to continue, says Andrea Carmine Belin.

    What does the center mean for KI and your institution?

    - It is very important for both the department, for Karolinska Institutet and for research into cluster headaches. There is no other center in the world that is focused on cluster headaches. This puts the diagnosis on the map internationally, says Gilberto Fisone. The fact that the support to the center is also long-term, that it will be implemented over seven years, gives us opportunities to coordinate the research better and gives room for new ideas and to test new angles. It is unusual for medical research in such a specific field to have the opportunity for such continuity at all.

    • Like 1
  3. On 3/13/2023 at 7:42 PM, spiny said:

    Do you have access to Trelegy for your asthma? It has been the biggest help for me over the years. It gets my O2 above 90% if I am up and moving around and that is a huge help!! 

    It is good to hear from you again Dude!! Give the little one a squeeze from me. :wub:

    Mild and mildew allergies over here are a thing that everyone knows are real (and probably knows someone severely affected by them) but no one "officially" wants to admit this - before they need to take down entire buildings and build new ones. But the admission is still local.

    Our meds are pretty strictly regulated over here, it looks like one can only get Trelegy for COPD in Finland and it is strictly prohibitied to use in asthma. I am managing quite well when I am able to stay in healthy spaces. Being stuffy during sleep is the biggest challenge CH wise. I'm doing very well atm on a bit higher dosed Batch regimen.

    Always nice to pop in here - warm loving squeeze is delivered ! He is sending one back right at ya :wub:

    • Like 2
    • Thanks 1
  4. If I have worse symptoms (like severe burning in my nose on the CH side) before or related to these allergy attacks, I usually start to track any items that are new or are presumably been exposed to outdoor molds. These are not always very clear or obvious. Last time it was a rug bought from a second hand store, before that a kitchen table friends donated (visible mold beneath the table) to us and even a garden statue that was bought as a new item at store.

    Dry air and dust may also be irritating factors in my case, probably the "nasty particles" spread more efficiently this way.

    EDIT: in Finland we have a nice combination of four seasons, very little sunlight in 3 of them and shitty building skills and use of plastic compared to how houses were built 100 years ago. The phenomenon of people getting sick due to bad indoor air is still very much denied and debated (especially by the responsible parties)
    https://yle.fi/a/3-11242805

    • Like 2
  5. I have this. For me it started to be a problem though as recent as 2017 and by that time I had CH more or less under control. So I am not sure have I had minor allergy attacks along with CH attacks when I was having lots of them and they still were brutal (CCH over 10 years ago).

    I think there are many factors in my past that have contributed to this; as a child my father built a house and then it turned out there was glue that contained formaldehyde that was too toxic for children to live in and we abandoned the house but my little brother already had lung damage from it (asthma like allergic symptoms). I have lived in apartments that have had more or less severe indoor air quality issues (mold, chemicals used in the past that have now been banned etc.). I smoked for over 20 years but do not consider that a big contributing factor but quitting smoking is another thing, having all that tar being removed from my pipes ! When I quit, pretty soon I started to have these allergy attacks, even without CH activity, then asthma broke. None of the antihistamines have never touched these. Now I usually get allergy attacks if I get CH activity but not every time. It depends have I had exposure to something in the air recently. I get these year around evenly, even when there's zero amount of any kind of pollen - like now, we are having -10 to -20 celcius cold period, snow covered ground, no pets.

    I also think that in my case this could be linked to my gut health to some extent. The healthier I eat the less I have these allergy attacks.

    Nowadays if I have to talk to doctors about this, I call it "non-allergic oversensitive rhinitis" because that is the most accurate match in finnish medical literature - although I do not think that's what this exactly is. Everytime I get told to use nasal sprays with cortisone, which I never do because they trigger CH and more of this all.

    I also have self-diagnosed rather mild multichemical sensitivity (MCS) related to this.

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  6. I personally think that allergic reactions can be quite a contributing factors on some individials' CH's. I have some form of "Indoor Air Sickness" and if there's mold or some nasty chemicals in living quarters, it ramps up my CH activity. It has been quite difficult to connect the dots at times and keeping a diary helps me. Sneezing can help me and even prevent. I also see oxygen use as "flushing the lungs" if you are breathing air that's bad for you. Just my experience.

    Thanks for contributing and I hope you meet a fellow CH'r "in the flesh" soon B)

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  7. Long story short.
     
    I have been more or less PF for 10 years using psychedelics and Batch regimen (Vitamin D anti-inflammatory regimen). I was severe chronic before this so for me this was a working combination.
     
    In 2020 I became a father. I work as an Expert by Experience in my country, this means I speak publicly about how I got better including treatments I use. Due to psychedelics being illegal in my country there was a child welfare notification made.
     
    I agreed to go by the laws and rules and not to use psychedelics in the same house with my son. So I had to rely on Batch regimen alone. I was scared.
     
    Eventually Horton (cluster) woke up from the long forced remission and I adjusted Batch regimen dosing accordingly. At some point my neurologist had to consult an endocrinologist due to my S-D-25 (Vitamin D 25(OH)D) being so high. Endocrinologist freaked and told me and the neurologist that I have to stop using Vitamin D immediately. I was diagnosed with hypervitaminosis D and additional blood tests were ordered to see if there is toxicity or organ damage.
     
    I stopped and was more scared due to shadowing already present after stopping Vitamin M/L. Then all hell broke loose. You know what that is. I had to use oxygen again and triptans in emergencies - they started to increase frequency right away. Daily Horton robbed me from my ability to function and live life, I had to cancel whole week of work.
     
    After 10 years I started being self destructive again.
     
    I called the neurology department. Arguing with the staff and the nurses. I had to tell them I can't do this. Really can't. I feel sorry for my neurologist, an excellent doctor and great human being.
     
    I am on Batch regimen again - currently PF after loading doses. My S-D-25 (Vitamin D 25(OH)D) is very high but other blood tests came back normal. But I am doing things I am advised not to do.
     
    Next step is choosing psychedelics - again and moving away from my son to my own apartment because the law says so. As treatment I was microdosing but it's not possible to explain it to any one of the officials - how this treatment may or may not affect my fathering capabilities. I certainly could shed some light on it, being an alcoholic now sober for 8th year. But is is what it is.
     
    I'm scared but I will survive. I always have, we always have and we will.
     
    You guys are heroes living and surviving with this. You got this !
     
    PF WISHES 
    • Like 3
  8. Thanks @spiny - I love you :wub:

    Here in Finland the brand name is Concerta. I only had a very unsure assumption that it might not block or interfere but did not think of serotonin syndrome. In our language there is very, very little posts or discussion about ADHD meds and busting. I even thought are there less ADD/ADHD among clusterheads than among general population?

    Luckily, seeds can be obtained legally over here. Batch regimen is also in consideration.

    Her daughter is 15.

    I hope you are doing well !

    • Like 1
  9. I don't know the details. He said he is super sensitive to barometric pressure, I kind of thought it might be something like that in his case.

    I think his own tricks are at least partially because he has not had any contact with other clusterheads up until just very recently. He has had no idea what should or should not be tried.

    • Like 1
  10. 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.

    • Like 1
  11. 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.

    • Like 1
  12. 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 ?

  13. 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 :rolleyes:

    • Like 1
  14. 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 B)

    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 ! :lol: 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 ! :wub:

  15. 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.

    • Like 1
  16. Thank you all so very much for your input ! :wub: 

    @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 !

    :unsure: Keeping my thumbs up and will keep you guys and gals posted

     

    • Like 1
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