Jump to content

Tachy Phlegming

Members
  • Content Count

    235
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Tachy Phlegming

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female

Recent Profile Visitors

2,918 profile views
  1. (Somehow my mailbox is hard to clear out and I wanted to see if I could respond not as publicly.)

    If you're taking votes (and haven't gone to the doctor yet), here's one vote for Mestinon.  I started 15 mg. at first and got up to 2x a day.  I have taken up to 3x a day.

    When the med works, it's terrific.  If it doesn't, you'll know rather quickly.  (In many ways I have had a similar presentation of illness to yours). 

     

     

     

  2. Were you on Prednisone at all when you took Singulair in 2006? While I too might bet that the combination doesn't cause CSS and the story is exactly what you wrote above, if you indeed took both at the same time, doctors will --because of those studies (even if they're wrong) -- be required to take the idea that you probably have that disease very seriously.
  3. What a mess that steroids don't work for you. It would have made your life a lot easier (probably actually even without knowing what you had). Oh, and one more thing. I assume you never tried Singulair, and particularly not while you were on Prednisone. There are a number of studies which show people "get" Churg Strauss while on both -- and if that happened, it might be fairly easy to have CSS diagnosed.
  4. It will be interesting to see what they say. I think you're the only person on here who has ever brought up the topic of Wegener's granulomatosis (and I don't know that any of us really understood why you looked for or found anything like that at the time). If you thought what you had was maybe that too, well, maybe what you have is in fact Churg Strauss Syndrome. http://www.cssassociation.org/patient-stories-reader/items/solving-the-mystery-of-my-wifes-illness.html (if you haven't already read the patient stories on that site, read a bunch of them). Have you ever tried Prednisone?
  5. From your communications on here, did you come across a pattern with certain meds which worked for some people for 2-3 years and then stopped? I'd be interested in knowing if there were particular meds which worked that way. I've sort of seen on here that beta blockers can come and go and certain anti-depressants ... My sense is that some of the problem for people who have been trying forever (10 years) is that people can't get some or all of the meds they would wish to try. When you asked, do you know whether they asked for meds they couldn't get? It was hard for me to get certain meds.
  6. That all makes great sense Rich. I would have thought the same (would have=did). Lucky for me, it didn't work out that way. I take one which in theory raises bp and one which lowers. And here's the trick. It has seemed to all work out. I might not have expected it to as well as it has ... In fact, if what I take lowers my bp too much, it is a world of difference from when my body does it on its own. I feel nothing if a med lowers me a little too much. Yes, those are the best parameters we have to use to measure how we are doing. But hey, who among us is going to complain if we feel good
  7. Yeah, you can get them to stop ... When I said "stop, stop" the techs I had said, just wait a bit, we're getting good numbers. And they make you sign a release. You might want to make sure everyone they've tested walks out. I think I asked.
  8. Wasn't that a porphyria show? Haven't a lot of people on here been checked for that?
  9. You really need this kind of thing for patterns, whether you're looking at blood pressure or heart rate. There are certain things you'll find during the day to raise or lower one or the other of those and if there is anything volitional which raises or lowers it to a more desirable number (like lying down, using a/c, or whatever it is), then when there are things you can't control (time of day, time of month, whatever else), you can try to do one of the things you can control which gets it to a better number. Even if you have a machine which isn't wonderfully accurate, you get a general sense
  10. These people are cowards. You tell them you don't mind the pain and they are worried about things like a little screaming or moaning. I've told more than one doctor to do a painful procedure with little or no medication and you should see how frightened they get! I always wonder if they are they worried about their eardrums or whether this is where the conscience of a doctor surfaces (never seems to appear when they want to put you down and tell you about phantom anxiety, can't see how anyone still said that when you told them you'd endure pain nobody else does). Hope they told you you are
  11. From the first part of the article (not the latter part), it sounds to me like I need a blue pill. In fact, and not in accordance with what the article suggests, the best results I've had are on red and white pills and sometimes, an orange pill; other times a green or black pill. Does anyone care about taste? As far as taste, I like bitter so when it's a bitter pill to swallow, I do just fine! Not sure I'd like Verapamil. I have some idea that they do in fact work on people with problems with the cold as someone mentioned above. Guess they should be red ...
  12. I don't like trying herbs (too little known) but I accidentally had some (along with some other herb I never planned to try) in a commercial soup preparation and really liked the taste. The experience wasn't bad but I did feel a little different on them and would not have done it again but for the taste ...when I was sicker, I probably was more conscientious about avoiding them, now maybe a little less so.
  13. No personal experience but you might look up Rach73 (I think that's her handle). I think she had that problem on Midodrine. If it isn't that, you can look up Bethanechol. Again, no experience, but if I had that, I'd think about that med...
  14. There was nothing at all different about food or meds or med procedures right before the flare -- or an obvious change in weather or heating or cooling of where you were? Had you been off most meds for a while lately? Hope you are able to feel better very soon ...
  15. That sounds really neat. Do you have a link? What kind of scale is it? I'm assuming it doesn't do that with normal people ...
×
×
  • Create New...