Jump to content
ClusterBusters

rockhopper

Members
  • Content count

    8
  • Joined

  • Last visited

Community Reputation

0 Neutral

About rockhopper

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  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 underlying concept is far from being a new insight. They could have come up with that much earlier.
  2. rockhopper

    I wish doctors would figure this out

    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 a "key ingredient"- we roughly know what happens and we can identify what goes wrong to some extend, but we don't know how it all works together to make a cluster headache. Think of it this way: neurophysiology itself is already very complex and we probably only know 1% of how it all works (if it's even 1%), then try to imagine how difficult it must be to figure out how how a pathological mechanism works when we don't even know how the "normal" mechanisms work. My doc is actually a researcher, too. In fact, he is one of the leading researches when it comes to cluster headache. He really does a hell of a lot for us CH sufferers but I guess it all just takes time (unfortunately). In research, paradigms play a big role, too. And I feel that CH research does need a paradigm shift in one way or another, because what has been investigated so far all seems to go in a similar direction. That's just my impression though. Perhaps one day we'll find out that we have found out so far may be correct, but that we have overseen or just simply ignored something of vital importance or even discover a completely new approach. I know, it's easier said than done, but hang in there! I'm pretty certain that CH research will bring about some really good results in the next couple years. Tim
  3. rockhopper

    Hi, it's Tim from Germany ;)

    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. But this does not happen to everyone and if it does happen, it is most likely going to be only temporary. Obviously, there is some risk that numbness/paraesthesia/etc. remains permanent (as with any other surgery). For me, the SPGS does not only abort acute attacks but it also reduces attack frequency and intensity. However, as I mentioned in my talk, if I don't use the stimulator for a couple of days/weeks, the attacks will slowly reach their old frequency and intensity after a while again. So, it's a bit like being episodic. I do get more shadows now. For instance, if started at 6-8 attacks per day, after 2 weeks of "stimulating attacks away", they won't come back for a couple of weeks. Then, after a couple of weeks, they will slowly ramp up to reaching their full potential again, so I'll have to start stimulating for a couple of days again- and then the cycle starts all over again, i.e. weeks of little/no pain followed by the "ramping" process, where everything gets worse until you start to stimulate. That's just what happens to me though. Generally, it seems to be drastically reducing attack frequency/intensity in a majority of people (list of publications see http://www.ati-spg.com/europe/en/ati-neurostimulation-system/publications/ to give you a rough idea). So yes, for me it has turned out to be much more efficient than O2, because with O2 I can only abort individual attacks without it reducing attack frequency. Knowing the complications associated with other types of neuromodulation, I think the risks associated with the implantation of the SPGS can be considered as relatively low, because it's only a very small device with no need for batteries to be replaced or other materials that may be subject to wear. Also, the implantation procedure is pretty straight-forward and doesn't require surgeons to mess with your brain (as opposed to deep brain surgery, for instance- which is a very complex and risky surgery). At least for me the benefit was definitely worth the "risk". But then again, yes, it is a surgery. And as with all invasive procedures, there are always certain risks ranging from complications associated with anaesthesia to other complications that one may encounter. Hope this helps! @Fabac: Thanks very much, really happy you like it! I hope I'll be abe to finish it all off soon. However, it is a lot of work, so it'll probably take me another couple of months until the website's completely finished.
  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. rockhopper

    Occipital Nerve Block - Injection

    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. rockhopper

    Hi, it's Tim from Germany ;)

    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. But it's definitely worth giving a try! Just don't let it put you off if the SPG block doesn't work. Apparently, chemical and electrical manipulation of the SPG don't necessarily have to have the same effect. Yes, please do feel free to get in touch with me whenever you like. I'll be happy to give you an internview or otherwise help you with your project. Giving online lectures sounds really good . I'd be happy to do that. I'll be heading back to Germany today. It makes me feel a bit sad, because I really liked staying here! I hope I'll get to see you guys soon again. Lots of PF wishes to you too! Tim
  7. rockhopper

    Hi, it's Tim from Germany ;)

    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 well for me. As a voluntary project back at school, I created website about cluster headache, which aims to explain, to all those who are interested, how CH works from a biological/neurphysiological perspective. I'm still working on getting it translated into English, however, there are already quite a few articles on there ready to be read! Feel free to drop by (I'll post the link on my profile, as I'm not allowed to post it on here yet). Feedback is always welcome and well appreciated! Best wishes and many pf days, Tim
  8. rockhopper

    Testosterone For Clusters

    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
×