Tony Only Posted October 2, 2021 Share Posted October 2, 2021 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 ? Quote Link to comment Share on other sites More sharing options...
spiny Posted October 2, 2021 Share Posted October 2, 2021 I looked at the one on NIH. It was done in 1996 and mentions the septum touching another area in the face. I had my deviated septum repaired about 25 years ago with no help at all. It was not touching any other area that I am aware of, but did have a 90* bend in it. It is interesting Tony, but I imagine if it really held promise, more work would have been done in that area since 1996. 1 Quote Link to comment Share on other sites More sharing options...
Tony Only Posted October 2, 2021 Author Share Posted October 2, 2021 (edited) 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. Edited October 2, 2021 by Tony Only 1 Quote Link to comment Share on other sites More sharing options...
Juss Posted October 3, 2021 Share Posted October 3, 2021 Deleted, posting journals is forbidden. 1 Quote Link to comment Share on other sites More sharing options...
Juss Posted October 3, 2021 Share Posted October 3, 2021 Deleted, you aren’t supposed to know that information. If you email me about said journals I don’t know anything. Sorry, I’m not allowed to help. 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 3, 2021 Share Posted October 3, 2021 2 hours ago, Juss said: Unfortunately-and most don’t know-PubMed is not conducive to being much for information. It has propensities to be quite selective and be privy to what doctors chose to disclose to said John Q Public. Sadly, if free, you aren’t getting the entire picture. There is a lot that sadly outside of exposure to strict academia, you just wouldn’t know of the atrocities that occur between the doctor to patient relationship. Presumptuously, it’s a big God Damn esoteric veil of borderline conspiracy. That said, I am supposed to be doing other things, but piss on it. Here is what seemed to be relevant. Also, don’t let date assume relevancy, often something from a quarter century ago can be damning, quite exposing. Oh, and you should have full access to all of these. Don’t ask me no questions and I won’t tell you know lies. Sinus Headaches Reconsidered: Referred Cephalgia of Rhinologic Origin Masquerading as Refractory Primary Headaches https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1111/j.1526-4610.1995.hed3504185.x?casa_token=ZA6ojfPsch8AAAAA:Te-7-pBRJoJVBlF_rgbouNUq6zn6-B8t4pkTsdC3WdHp_17YqJ4n96836iNxVkGJLvZQez23-YZQCtWe Electrical Stimulation of Sphenopalatine Ganglion for Acute Treatment of Cluster Headaches https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1111/j.1526-4610.2010.01661.x?casa_token=qT0_4PIJbg4AAAAA:IZPX6TYzzpyks_7tdx4EoHfpOqF-8CRB_yTNxxl2Iu9cqiDcf1rYykP5fwAon_1F8KilewFDG3hrK73m Trigeminal Pathways Deliver a Low Molecular Weight Drug from the Nose to the Brain and Orofacial Structures https://pubs.acs.org/doi/abs/10.1021/mp100029t# Neuroanatomy, Pterygopalatine Ganglionhttps://www.ncbi.nlm.nih.gov/books/NBK545308/ Pharmacotherapy of Cluster Headache. That is the most current release, from Springer (major academic journal), unlocked, free, and you are welcome. You are very welcome. It’s from 2021, mind you! Pharmacotherapy is Medspeak for the practice and management of how and what drugs they prescribe you. Now, you know the latest practices. Again, I found the back door, and you are extremely and very welcome. You have no idea how hard it is to back door into the lead medical journals. FYI, it ain’t hacking either. Again, don’t ask don’t tell. https://link.springer.com/content/pdf/10.1007/s40263-019-00696-2.pdf A brief diagnostic screen for cluster headache: Creation and initial validation of the Erwin Test for Cluster Headache https://journals.sagepub.com/doi/pdf/10.1177/03331024211018138 I hope that this helps. It’s refreshing to see others research something besides psychoactive/psychedelics. For some, such as myself, it’s not realistic, and the worst idea possible (foment a psychotic reaction or go full blown mania with psychosis). I can try, but for every door opened, the publishers close a thousand. You got to find, PRINT ASAP, and move on. Nothing is static in the world of journals-well, less you want to take a Dunbar Armor truck and pay up the ass. Good luck. If you require further assistance I can do my best. I’m not the best, but keep in mind, my background required thesis for undergrad, most undergraduate programs don’t, and that meant hours of work, even the damn annoying microfilm. Am I the only one with the heebijeebies Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 3, 2021 Share Posted October 3, 2021 42 minutes ago, BoscoPiko said: Am I the only one with the heebijeebies I have the Bejeebiheebies if that helps any. 3 Quote Link to comment Share on other sites More sharing options...
Juss Posted October 3, 2021 Share Posted October 3, 2021 I didn’t know that was off limits either. That is deleted. My God this is turning to be deleterious denigration on ones freedom of expression. I will keep discussion, hell, what is safe now? 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 3, 2021 Share Posted October 3, 2021 6 hours ago, Juss said: I didn’t know that was off limits either. That is deleted. My God this is turning to be deleterious denigration on ones freedom of expression. I will keep discussion, hell, what is safe now? I don't think it's off limits just I got a little political once and just got told not 2. So I was just putting it out there for ya that's al 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 4, 2021 Share Posted October 4, 2021 Yep. Politics is off limits here as we have members on all sides of any political discussion. Stirring that pot is not helpful for anyone. Treatment info and discussion is great. New info is great, just no politics please. Thanks all. 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 4, 2021 Share Posted October 4, 2021 Bosco, 'A systematic review conducted by Ho et al. found that there is substantial evidence to support the targeting of the pterygopalatine ganglion via pterygopalatine ganglion blockade, radiofrequency ablation, or neurostimulation for the treatment of cluster headaches.' That has been stated as long as I have been researching - the last 17 years! They have cut nerves, etc, through the years. Additionally what I found was that it worked much better for SUNCT than CH. Yes, they did say that. But at the end, they said that further study is needed with trials. Having nerves burned or cut is not at the top of the list for treating CH. Not anywhere close either. Most papers will tell you that it is used as a 'last resort' and has a fair to good chance of not working, but leaving you with a mess to deal with in addition to CH. Some companies have come out with mechanical stimulators that work for some CHers by targeting nerves. The reviews are very mixed. Don't read so much that it scares you!! 1 Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted October 9, 2021 Share Posted October 9, 2021 On 10/2/2021 at 8:09 AM, Tony Only said: 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 ? Hey Tony, I'm 8 days post-op from balloon sinuplasty, turbinate reduction & deviated septum surgery. I would consistently have one side of my nose clog and impede getting normal full breath, mostly at night and it would occasionally shift to the other side. While I'm still recovering, I'm already experiencing improved breathing with much less effort. Full, satiated breaths from my nose that top off my lungs each time, it's really liberating.. makes me think I should have had this done long ago. I did not have this procedure to treat clusters, however..... I have not had any cluster activity since the procedure, zero. I'm chronic and experience shadows and spikes on a daily basis, but oddly nothing since. I'm cherishing this time as I approach my max # of days I can go without dosing ~21. I'm pretty certain the beast is simply regaining it's composure before resuming our "relationship" My pre-op answers to the survey would be: 1a 2b 3c 2 1 Quote Link to comment Share on other sites More sharing options...
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