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Tony Only

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Tony Only last won the day on July 20

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  1. I'm sorry I can't say anything about the scripts you are asking and may even confuse you further but these are what came to mind for me. I think I have seen others think about the same things, post covid CFS (or sometimes just regular CFS) somehow interacting with CH. One treatment I remember seeing often in finnish CFS sites is LDN (low dose naltrexone, an immunostimulant) and (in there) I have seen claims that it would also help CH. I have used it myself for Chrohn's disease, it was super efficient but turned out later I do not have Chrohn's - at least not a typical one. I am personally
  2. And another one https://www.lumc.nl/over-het-lumc/nieuws/2021/juli/LUMC-onderzoekers-vinden-eerste-genetische-risicofactoren-voor-clusterhoofdpijn/
  3. I myself and my living family members gave blood samples for study of genetics in Horton's neuralgia few years ago in Finland, but this is probably a different study. Still makes you think if Vitamin D is affecting the genes in question https://consumer.healthday.com/b-7-19-geneticists-probe-origins-of-painful-cluster-headaches-2653791014.html
  4. Thank You Batch - will do. Couple of people have sent me their lists, I will save them and share the products here. We have a system where there's an annual maximum for healthcare costs (including pharmaceuticals) for an individual. While that's great, one result is using vitamins (especially if bought locally, lightweight but pharmacy grade) being way more expensive than any amount of any prescription meds. This together with not getting approval from your doctor is an (annoying) issue over here.
  5. Does anyone get all their vitamins and co-factors in the anti-inflammatory regimen (Batch regimen/Vitamin D protocol) from iHerb ? I have been struggling with this for years, buying locally (in Finland) those that I can find and buying from iHerb the ones hard to find locally (vitamin K2 and such). It's been difficult since our local products are very lightweight for this use. For the first time I am down to 6 different producs (Vitamin D, vitamin K2, magnesium, fish oil, 2 multivitamins) but I think I am still getting way too much things that are not required in the regimen. I have
  6. I too would say show it to your doctor. I think solely as cluster related it's rare to happen to a degree it's affecting your vision, but it does happen. I would estimate seeing that around 1 in 500 clusterheads (but don't know if there are other things causing it) ...
  7. Thank you @jon019, @CHfather, @Luis Interviewing X's daughter further there's a special place (garage) where X spends lot of his time smoking and doing crossword puzzles so there might be some of those environmental / allergy issues right there. I did my searching and looks like we don't have diphenhydramine available in Finland anymore. I'm not sure could you get that imported if your doctor writes a special license for that. X has started Batch regimen (anti-inflammatory regimen) today on a 2 week loading schedule. I recommended melatonin since nights are worst but not h
  8. Aww, that's sorry to hear @Vipul Possible changes in CH are not a life sentence. You can go from chronic to episodic too. I just found your other thread and will reply to that one. Wishing you strength
  9. Thanks for the link @CHfather ! If I were to think that all the CH pain and pain related signaling is traveling through these old neuronal connections, and when new neuronal connections are established they don't know what CH is. But to us that means these new connections are free of pain signaling = PAIN FREE I love the image when beast is overrided and overtaken and it stands powerless as distance grows in the rear view mirror. Also an important publication for suspicious minds
  10. Thanks @jon019 ! He was actually away from home in motorsports event and was unexpectedly pain-free which might suggest towards some environmental factor. I don't know about his diet other than that there are no clear triggers he would be aware of. Good thing to consider ! I will pass along your suggestions, thank you again Edit: I think our european Benadryl is somehow different from yours (and thus useless). Benadryl 8mg sold in here is acrivastine.
  11. We have been trying to help an older fellow clusterhead who is not on the internet with a little team of buddies. The challenge is a presumed cluster cycle that does not seem to respond to treatments that would work for most. I guess I am asking if someone sees some other condition or cause between the lines or has some ideas what should be checked to outrule any other causes for such a tenacious situation. Here goes ... Case is with male patient, I just call him X here, close to his seventies. Cluster headaches started in 2018 when diagnosis was set right away and incredibly lucky X
  12. The title, "Educating Health Care Professionals" is not possible done as single patients, spouses, family members. Join the nearest local headache organization, create a CH sub-group if needed and working as a network you can and will start making a change. When we are giving feedback or demanding a change after an ER or doctor's visit backed up by our local and possible mother organizations patient after patient that will be noticed. We seem to be very fragmented, isolated and alone in many countries. And at the same time each of us are dynamos. Pf wishes to your family
  13. Thanks @Pebblesthecorgi Here's a brief update: All the tests reveal nothing and they are clear. Fever is back up at 40C/104F and her erythrocyte sedimentation rate (ESR) is 140. Examinations have been very thorough. She is fearful for the nights. Getting spinal/cluster/migraine attacks but not non-stop anymore. Unfortunately hospital tells her to wait a week until they will do a blood patch.
  14. My dear friend is in absolute hell. She has multiple headache disorders, including cluster headache, she is managed chronic. She was hospitalized with high fever (40 celsius/104 fahrenheit) and a migraine-like headache was non-stop at KIP level 10 when they checked her in. They did not figure out the cause for it, oxygen was not touching it, she got IV antibiotics. Nephropathia epidemica or some insect bite were suspected, and cerebrospinal fluid sample was taken. She is now home, in weak condition, needle hole in the spine leaking so she must lay down and not move but is getting cluster
  15. @eileenbunny How about posting this on your Facebook page ? Then we can share it on different FB groups. There are tons of people there.
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