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jojo2

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jojo2 last won the day on February 15

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  1. I tried it twice but it did nothing for me. I hope it can help you if you so choose to try it.
  2. I know there is a section on busting stories and people share what they have done, but I would like us to share our remission stories. My remission periods usually last two years. I am currently in headache season, unfortunately, but I spoke with an uncle who is in a 15-year remission, and we are investigating what changed in his life. How about you my fellow cluster heads? How long have you been in remission and what do you think contributed to it?
  3. Also, one other thing I have found in my 24-year battle with cluster headaches is that no procedure or drug has worked for everyone. So, dismissing one procedure or drug for not working on certain people is laughable. The more available solutions, the better; that way, most sufferers will be covered by at least one solution or a combination of solutions. I pray and hope that my sentiment is similar to every one's. I am a skeptic and I want the more realistic solutions to prevail and that starts by listening to every one. I won't talk for every one here but am willing to listen so any one out there with a remission story please come and share it even if you dont know what it is that changed in your life.
  4. Now, this begs an interesting question about this group. We need and can do better. I for one have made an annalysis that no single treatment is going to work for every one suffering from this headache because it manifests in many ways. I have switched doctors and nuerologists and even drugs but never have I ever called them quacks for failing. It simply meant that that solution is not for me. As I mentioned before, My uncle has been cluster headache free for 15 years now and we all don't know what happened with him. I think we should not throw people away when they suggest things that worked for them and we don't have an explanation for them. All the drugs we currently have like verapamil, no one even knows why they work but since they provide relief then we accept them and just use them for the time being. The reason I think Dr Shevel's methods may have some credibility is because when you say he zaps the nerves, that is actually similar to Occipital blocks except for him he zaps them while occipital blocks just block them. One time I went to the ER and found a doctor who also suffers from cluster headaches, and she told me every time when the season comes, she just sees a neurologist who does occipital blocks, and she is fine for that season. Again, she told me it may not work for every one but it works for her. If I were just to dismiss her, I would have missed out on the temporary relief I got from the same when I asked my neurologist. I think we need a section on remissions where we follow up on people with remissions and what they did. Busting won't work for every one, Oxygen wont work for every one, Verapamill wont work for every one, vitamin D3 and anti histamine regimen won't work for every one. One things as a cluster headache sufferer you come to realise that even what worked before for you refused to work later on. This is due to the fact that we are dealing with a changing body in changing environments. The more tools, methods and techniques we have at our disposal the better. Our hope in psilocybin should not lead us to close out other stories of success elsewhere. That is not science! In science you let the methods fight and the one with maximum benefits and less risk is the one which should take the day. Please apologize to that lady on our behalf and tell her we want her back. We need a section on people in Remissions and what they are doing or we shall forever be a group of crying people. We need positive stories on here and positive busting stories and remission stories that don't have an explanation. Oh and the neurologists who dismiss Dr shevel are the same ones we struggle to convince to give us oxygen! From what I gather he is just doing some version of occipital block. I will go to South Africa on my next vaccation . I may not necessarily have the procedure but I would like to document remission stories even those without an explanation. When Malaria was getting resistant to all the drugs on the market, every one was dismissive of chinese herb people used to treat Malaria, even the experts!..But many years later and we have Artemisinin as part of many anti Malaria Drugs. This disease is so statistically insignificant that we shouldn't expect sceintists to focus on us since there is barely any money to be made. We only have ourselves for help and we don't need to have any one, especially some one with a successful story feel like they don't belong here.
  5. This lady's video has been on the internet for over 8 years now and she was a member of this forum. Can anyone please find her and find out how she is doing? Is she still pain-free?
  6. I am one of the people who highly believe the vitamin D theory actually holds more water than any other theory, so I will get in touch and see if they can take me on. The only problem is that my Cluster headaches are so wild and they last 4 months in a 2 year period. Am currently in the cycle but will be done with it hopefully and face it again in 2025. I get them every winter of an odd year. I was so curious to know why I got the 2-year remission, and so far, only the vitamin D theory has provided me with a plausible explanation. Vitamin D3 and Calcium are involved in bone remodeling and it's regulation under the guidance of the PTH. With deficiencies, its very very possible for the side effects to be felt in 2 to 3 year intervals while the body restores the balance. The cluster headache may be the body's way of short-circuiting us into giving it more vitamin D3 and, therefore, calcium for maintaining our bones. In a similar fashion, Verapamil, on top of its effects on the blood vessels, may work by stopping muscular tissue from using up all the calcium in the body and availing it for our skeletal tissue maintenance (Bone remodeling). And that's the only way I can explain the remissions. I think if we all did blood work constantly, we would address a lot of curiosity in this part. Currently, I have an uncle in remission for 15 years. He tells me even if someone offered him a million dollars, he would never want to go through his 20s and 30s again because of cluster headaches. Interestingly, the processes that use up a lot of calcium reduce with age, so maybe he hit the acceptable range of Vitamin D3 and Calcium, and his circuit breakers need not bother him again. So I really hope this study helps. Also, what is our common denominator? There must be some thing about us clusterheads that is common and unless we partake in researches, we won't find out. When the body causes us unexplained pain, the likes of which we get during these episodes, it is trying to communicate something..it is telling us something, and unfortunately, it speaks so many languages that we have failed to understand what it wants.
  7. Firstly, I am glad you found any relief at all. The number one accomplishment I can't take for granted for any CH sufferer is relief. However, it's still to early to use the word cure. I have had an uncle who is currently in a 15-year remission, and even he doesn't know what happened. I believe if more stories such as yours are empirically followed and can stand the rigorous scientific scrutiny, then we shall have all the solutions we ever need. But first, we have to document it and follow it up. The past threads about this doctors methods indicated that the results were mixed. Some people got relief, and others didn't get relief. You mentioned that he is now using a new technique, which is good to know. Currently, we have you his patients, we have him and we have time. Let's continue to keep the records and see where it leads. Just know that even though I, for one, appear skeptical, I am cheering for your relief and hope it sticks. Now that you are going back to South Africa, please ask the good doctor to put up his work for international peer review. That would be a nice step in the right direction. I know this disease is not statistically significant enough to warrant a lot of attention from the sceintific community but I believe the solutions are out there and we should keep looking.
  8. I do not doubt your story one single bit because it is your story. I am hoping and praying you keep pain-free no matter what worked. However, I would like you to know there are remissions. I have an uncle who has been cluster headache-free for 15 years or more years! Even he doesn't remember what he did. He says my Dad had them worse too and that My grandfather had them until he passed in his 80s. I am increasingly finding people who find unexplained relief or remissions, but I will not be calling anything a cure for now. Please follow this post up with the great news of your relief every now and then. I am interested in your progress. In my first encounter with remission, I was as happy as myself. I would often think that I had discovered the winning formula only to go back to the drawing board during the next season.
  9. I don't Know if am the pessimist or not but the remissions in Cluster Headaches make cure claims very very hard to believe.
  10. I finally got Oxygen in 2 places. One was Boston orthopedic Respiratory in Charles town and another was community surgical 180003492990. Community surgical is experienced with supplying cluster headaches sufferers. For 140 Dollars a month they will refill your tank for as many times as you need. The trick is in having your Doctor write the prescription
  11. Oh my, This thread is so short. Did any one finally get an oxygen supplier around Boston?
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