Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation on 09/15/2022 in all areas

  1. @CHfather, thanks for the link and reference to what Batch has written about mast cells. I am just "wowed" by the amount of great information and help available with this group. I appreciate the time and effort you all put into sharing your knowledge and experiences. It makes this condition much less lonely and isolating. What a fantastic group of people!
    3 points
  2. Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking.
    3 points
  3. 2 points
  4. Wow, hadn't been aware of EDS, but a quick googling reveals there are various types of it, and I have the same hypermobile left elbow as this kid, plus other related symptoms. I imagine that hypermobility in just one elbow, not other joints, might not impress an EDS diagnostician so much though. From Google What are the specific symptoms of Ehlers-Danlos syndrome? People with hEDS may have: joint hypermobility. loose, unstable joints that dislocate easily. joint pain and clicking joints. extreme tiredness (fatigue) skin that bruises easily. digestive problems, such as heartburn and constipation. dizziness and an increased heart rate after standing up.
    1 point
  5. Prednisone works quite well to stop attacks for many people, but for most people that's only during the time that it's being taken, or even, for many, only during the time when the higher doses are taken. Some people find that if/when the attacks come back, they can be quite severe. The recommended prednisone dosage for CH is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks. If your cycle typically lasts a month and you get up to three weeks of relief, that seems possibly worth doing. Some people also get relief from the standard prednisone "dose pack," which is shorter. I don't think Emgality would be contraindicated with prednisone, but I don't really know. Reports here about Emgality are mixed, as snafu says, but you have to keep in mind that not many people are going to show up here reporting on something that worked for them. You can see comments about Emgality by putting the word Emgality into the search bar at the top right of any page.
    1 point
  6. .....nope...separate by 4-8 hrs. ask your pharmacist...they really know this stuff....
    1 point
  7. ...CHfather has already discussed this elegantly. just to add my few cents. this is an odd combo i've never heard of and looks like a kitchen sink approach of old options. i have used all 3 (20+ total) and verapamil actually worked (at proper dosages depending on cycle) reasonably well (70% reduction in hits and lowered intensity).cypro and amitip were worthless for me (and that was maybe 18-20+ yrs ago (IOW he's reading old lit).....and little, if any reported, success with CH. guessing its the verap that's working. always my concern with multiple prevents, of these or others, ....that if this works....which one? ...there are newer meds i'm surprised have not been tried and i really second the urging of OXYGEN, energy drinks, and D3. faster, cheaper, safer alternative to traditional meds. ...then there are always the alternate methods discussed here... have the BEST track record....and make the above moot...
    1 point
×
×
  • Create New...