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Milelli

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  1. Milelli

    Chronic Cluster Patient Pain Free for 11 days

    It is very nice to hear that this method starts working for after only 11 days. I wouldn't get through with this diet so my deepest respect! Regarding the long-term effects one of the problems is that your body will loose the ability to process carbs. Not only because of this reason it is advisable to consider keto as a diet only! But as long as you are painfree it serves the purpose. The problem seems to be the point when returning to normal food. In the first paper of C. Di Lorenzo et al. [1] he wrote: One of patients that responded in the first month of diet decided to revert to SD and CH recurred after 7 weeks. It would be interesting to know if the were stopping the diet abruptly from one of the other day. Does a neurologist supervise you during the diet? However, I myself would stay on this diet a couple of month as long as it keeps me painfree. After that I would VERY slowly increase the amount of carbs week by week. I am thinking of desensitization like it works for people suffering from allergy reactions. Maybe this would have a similar effect. If this worked, I would add slow carbs like oats to my meal plan step-by-step. As a already mentioned above, on a slow carb diet you can stay for a long period of time. Please consider that these are only my thoughts and I am not an expert! I just want to share my ideas about this topic. Have you considered to ask the authors of the papers for advise? It sounds like they are really interested to help. Please keep us updated! Best regards, M [1] Cluster headache improvement during Ketogenic Diet, 2015
  2. Milelli

    Chronic Cluster Patient Pain Free for 11 days

    Hi Paula, thank you very much for sharing! I appreciate it! Good to hear that another one of us has found relief! Are you also restricted by 10 g carbohydrates/day like reported in the video? Just thinking of a long-term implementation,, maybe after a while on low-carb there is way to change to slow-carb and maintain the painless condition. Unlike the low-carb, one can stay on this diet for a very long period of time. Also, I found some hints that slow-carb can give benefits to CH sufferers. Some are guessing that it has something to do with hyperacidity. The slow-carb would improve the oxygen supply to cells and slow down the cell metabolism. Cheers, M
  3. Update on May 4th: Currently, it is not possible for me to do the meditation twice a day. But in case of an attack it helps me a lot. I combine the above mentioned TM technique together with shaman drums (https://www.youtube.com/watch?v=g96ylDk1oWg) which I am listening to via ear plugs to increase the efficiency. This kills the pain in 3 of 4 attacks within 5-15 minutes I am starting with the meditation right after the first sign but I am as well able to abort the attack at an higher KIP level. I am convinced to still increase the efficiency with training and more meditation practice. At the moment the weather is changing quite a lot from snow storms on one day to sunshine at 20°C at the next day with additional airborne allergens. This is the reason why nothing else is working right now. The only thing I can count on is the mediation. It would be interesting to know if any of you will have the same success with this technique. I would say it is worth a try. If you need more information please don't hesitate to ask me. I will keep you updated. Cheers, M
  4. Milelli

    Avoid attacks for a short time

    So 40 mg of Prednisone did the work, although I felt a little peak directly after the talk as the stress had released. I am questing myself if this actually happens because of the relief or if it is the swift change between stress and relaxation. What I mean, does this also happen the other way around? The thing is that the process of getting stressed is more continuously. It gets more and more slightly until it finally reaches a peak (for example the talk). Would a very sharp increase in stress from one to the other moment also causes CH attacks?? I would guess yes, since it would release histamine from the mast cells as well! Has anybody ever observed something like that? If this theory turns out right, it means that we not only have less attacks when we are permanently stressed, but also if we are permanently relaxed. What I would prefer!! Cheers, M
  5. Milelli

    CH triggers

    Same for me! I could use a massage since they are so intractable!
  6. Milelli

    CH triggers

    Cocolate contains a lot of histamine, so yes it could trigger an attack. If you can't get the finger from chocolate, i would recommond white chocolate instead! This only conists of cacao butter and has much less histamine. However, this is like with every trigger. I could for lots of us, but it is not for sure for everybody. Cheers,M
  7. Hi everybody, Lately I was thinking of why the busting helps so many of us (I think about this very often). I already have had a lot of success with meditation during a rising attack and thus it becomes more and more important for me. I am convinced of the fact that long term meditation can also have a large impact on the brain like the mm have after busting. Studies have shown an increase in grey/white matter in certain brain sectors, while other areas are decreased. I found out that certain meditation techniques affect different brain sectors. So my naïve approach was to compare the brain scans of longterm meditators with the CH scans from wikipedia. As many of you know, the hypothalamus is active during a CH attack and also the distribution of grey matter is higher in this region. The understanding of meditation seems to be still quite unexplored but I found some medical papers and also some talks and websites from scientists. Unfortunately, I found no match for Zen and Mindfulness meditations. However, at transcendental mediation (TM) I got lucky . So the right meditation technique seems to be an essential key! It was found that TM can decrease the activity and blood flow in brain areas close to (and also in) the hypothalamus. Furthermore, it seems to have a large impact on the amygdala - that part of the brain which controls anxiety thoughts. According to the PET scans from wikipedia, this region shows also high activity during an attack. I also have heard of improved anxiety feelings from e.g. cancer patients after the treatment with tm. Both, mm and TM can be used to treat PTSD. Proceedings of the Endocrine Society of Australia, 1976 even outline this: "The results suggest that TM produces a marked acute and chronic reduction in trophotropic anterior hypothalamic activity but little effect on ergotropic posterior hypothalamic function." (Yes, I know this was a long time ago but I just get started with that topic.) Furthermore, this technique also seems to change the serotonin behaviors, which is another connection to CH. Personally, I have the feeling that this TM is worth a try. I was googling around and found no connection between TM and CH yet. Maybe it is something that can bring us relief, even though it takes time to reach a high practice level. I think that the transcendence thing could possibly be connected to CH. So a lot of us find relief by trying out diets and unusual behaviors. If one, in turn, thinks about what really helped him and reaches a certain level of awareness, things can end up worse again! It happened a lot to me. From that, I deduce that placebo and awareness seem to play an important role. So developing a "I don't care whatever..." consciousness and getting rid of anxiety doesn't harm at all! At last a few sentences about TM. Transcendental Meditation was being invented in the late 50's by a yogi and it was very famous back then. Unfortunately, over the years it was commercialized by many people. Those are quite active in the web and you will find lots of advertisements. The price to learn this technique is not cheap according to them (around 1.200,- $). However, it is not necessary to join a course! The whole principle is based on mantras which you have to repeat very often in your minds. The only thing that matters is that you don't connect anything with the mantra. For example if you choose the word "apple", a thousand things would run through your mind! I took the mantra "So ham", which means "I am pure" (Don't ask me why, I just needed a Mantra). So what you are going to do is to repeat this as often as possible in your minds. If some thoughts come into your mind, you simply go back to the mantra. And that's it. You need to do this 20 min in the morning and in the evening, receptively. Additionally, you also can use music in the background if you want. The purpose of this is to bore your mind literately. For myself, this calms my entire body down. I just started a couple of days ago with that technique but I am planning to keep going at least 6 months. Maybe there is a chance to change anything in my brain! If you want me to keep you updated, I will do so! Cheers, M
  8. Milelli

    Avoid attacks for a short time

    Hey, thanks for the response. I noticed that thing with the stress,, At the rehearsal last week I did quite well, but after that the stress fade away and I had to endure my first KIP 6 since December during the presentation of my colleagues. Tomorrow I will give the talk under the influence of 40 mg Prednisone, which hopefully does the job,,, It's always the same with the CH. I hate conferences, although I actually would like them. I guess many of you know the feeling. Everybody is going for lunch at noon and you even can't eat anything unless the CH gets triggered. Then you always have to answer the same stupid questions. However, I was so often desperate of all these that I am starting to get use to it. Best wishes, M.
  9. Milelli

    New Med

    Hey Batch, Thanks a lot for your answer! I've also found the advice that the measurements/blood test should be around springtime. Also that taking Vit. K together with Vit. D would prevend the bones from losing calcium so one need not worry that much about hypercalcemia. Did you know? Cheers, M
  10. Milelli

    Dreams and clusters

    I am not dreaming either. Cheers, M
  11. Milelli

    New Med

    Hi Batch, thank you for showing us these interesting plots and for the explanation of the related calcium serum. So, how often do you check your calcium and D3 level if you don't enhance the dosage? Cheers, M
  12. Milelli

    Successful reduction of headaches with diet update

    Since how long you are on that potato diet? Usually it takes some time to start working. Indeed the second after you finish the meal is very early. Usually one can consider at least 30 min to get the substances from your stomach to your bowel or even more, I am not an expert,, I know that stress also releases the histamine (and I guess the same applies for tyramine and other biogenic amine) from mastcells into your body. So since this diet really seems to helped you, the first thing is to dont't panic and to reduce stress! Maybe the strict diet will bring you back on the track. I am sorry but this is currently everything I come up with and I know it's not a big help but I ask me the same questions everyday. Cheers, M
  13. Milelli

    Successful reduction of headaches with diet update

    I am very sorry to hear that! I myself have found release by avoiding histamine. Did you eat something or somewhere else than usually? Maybe there was a hidden trigger. Cheers, M
  14. Milelli

    Computer help....

    You're welcome In that case, it is also possible to get blue filter glasses. That way you don't need to change it back and forth. Take care and keep us updated! Best Regards, Milelli
  15. Milelli

    Computer help....

    Hey hugeser, hey Siegfried, same problem here. I am suffering from CH and I would say that working in front of the screen during the whole day is one of my biggest triggers. I am using Ubuntu which provides the blue filter as an internal option (I guess this is also applicable in the windows settings). Optionally, I recommend the free software "redshift". If you often have dry eyes, you could try to supplement omega-3. I am taking one capsule every morning and evening (total amount 400 mg EPA, 300 mg DHA) which also helps me a lot with the CH!! The vegan algae oil works best for me!! I also recommend you to do a small break every 30 - 45 minutes. If it is possible, let your eyes wander over green landscapes for 3-5 minutes. If your eyes are quite red, you also can use eyebright extract for 2 weeks. This will get rid of the inflammation. Cheers, Milelli
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