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rockhopper

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  1. Hmm, I don't know any renowned researcher who claims that CH had one single cause- so in my opinion this piece of research does not indicate that there is a paradigm change underway. I'm wondering why researches are coming up with cortical plasticity now or act as if its involvement in pain processing was a new discovery. It's definitely not. I'd argue that we, as humans, wouldn't be able to live in the way we do without cortical plasticity. The concept of "pain memory", which points in a similar direction, has existed for quite some time now as well. Sorry, if I sound negative. I think the un
  2. Hi, I can totally understand your frustration and that this annoys you like hell but then, cluster headache is a highly complex disease. Reseachers already know a great deal about the pathogenesis of cluster headache, but you should think of it as a huge puzzle- some of the pieces have already been put together but others haven't yet, because there are still some missing and/or doctors simply don't know how to put them together. When I tried to understand the pathogensis of CH, I nearly freaked out because it's so damn complex. One thing that researchers are still missing is something like
  3. Hi Lieutenant2, this just as a disclaimer: of course, I can only answer your question about risks/side-effects associated with the implant from my role as a patient, not as an expert on the device/health care professional. Apart from the usual side effects surgery can have (e.g. hitting blood vessels you aren't supposed to hit, irritating or damaging nerve fibers etc.), the risks/side-effects of the implant should be very low. What I can imagine could happen as a side effect is numbness/paraesthesia/edema in the area supplied by the nerves that traverse the SPG on the side of the implant.
  4. Hi guys, does anyone of you happen to know when and where the pics/videos of the conference will be published? I'd really like to show them to my gf and family back in Germany . Many pf days, Tim
  5. I had an ONB a couple of years ago. It wasn't overwhelmingly successful, but it managed to get me one pf day (which was quite an achievement for me, as I was suffering really bad attacks on a daily basis back then). It's probably always worth giving it a try. If it works then that's good, if it doesn't you have tried at least. As any other treatment, the extend to which is works (i.e. giving you a long period of painfreedom or a rather short one) varies from person to person.
  6. Hey guys, thanks, I'm so glad you liked my talk! And I'm also very glad I got to meet you all, you're such an inspiration for me as well. Also, I was so overwhelmed by the way you made me feel that I'm a part of your big cluster family, too. I'll definitely try to come back next year. I'll have to try and save up some money though, because, as a student, my budget is very limited. Michael- thanks very much! I'm really happy that my talk helped you. We discussed the idea of trying an SPG block prior to surgery and ATI told me that the SPGS might still work even if the SPG block didn't. B
  7. Hey guys, I just wanted to introduce myself. Those who attended the CB conference in Nashville last weekend, will probably remember who I am. I'm the guy from Germany who gave the talk about the SPG stimulator . For all those who don't know me, here's a brief introduction: I'm 27 years old, chronic, medical student trying to get through the hells of med school inspite of having CH. I have been suffering from CH since I was 10 years old, which is pretty much of a long time. After all conventional therapies had failed for me, I've decided to go for the SPG stimulator, which works really wel
  8. I receive testosterone HRT due to hypogonadism. The HRT does actually have an impact on my clusters. As I inject testosterone every 14 days, the cluster attacks are relatively mild for 8-10 days and then suddenly switch back to unbearable after 10 days. Obviously, this does not necessarily have to work for everyone but I'd recommend everyone to have their testosterone levels checked (preferably both testosterone and free testosterone/free androgen index) and try HRT if you're levels are low. Oh and try to see an endocrinologist about it. Best wishes and many pf days
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