• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Ocean

    Zantac making me very drowsy, any different alternatives?

    That's great to hear. Any side effects from the feverfew?
  2. Ocean

    Zantac making me very drowsy, any different alternatives?

    Camas, has nueroprotek reduced your flushing? I was doing very well on zantac but eventually my stomach stopped being able to tolerate it and now I've had terrible flushing and sickness episodes several times a day every day again. The zantac was a lifesaver but began to cause a terrible stomach...
  3. Ocean

    Circadian Rhythm Problems

    I tried this and so far it hasn't worked for me. For me it seems I need to put them on when it gets dark out or else I still have trouble sleeping. Last night I put them on at 10 instead of 9 like usual and it was much harder to fall asleep when I went to bed. I will try a couple more times and...
  4. Ocean

    Circadian Rhythm Problems

    Very interesting, Perchance Dreamer. What time do you put them on? I had read that you're supposed to put them on at sunset so I've been doing that but I have had trouble with early waking, so I wonder if that's why. I just worried that if I put them on a few hours after dark they may not work...
  5. Ocean

    Circadian Rhythm Problems

    So true. When I remove mine for a minute after having them on for some time I feel all the light in our place is so bright and not just bright but distinctly blueish and harsh, not the warm yellow glow you see with the glasses. I truly believe these work, at least for those who may have a...
  6. Ocean

    Zantac making me very drowsy, any different alternatives?

    Camas, by "a little too potent," what do you mean? Did you get side effects?
  7. Ocean

    Circadian Rhythm Problems

    Maybe try Blue Blocker brand? I have a generic version of those and they are working much better for me than the amber ones I got from Amazon.
  8. Ocean

    Nasonex or Flonase?

    Sounds like you are having a lot of anxiety about it but as you can see from the responses here a lot of people did not seem to catch more sickness after using these sprays regularly. I've gone close to a year without a cold, which I think is pretty good, and I've been on these sprays forever. I...
  9. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Yeah in a small enclosed space like that it was awful!
  10. Ocean

    Nasonex or Flonase?

    Oh no! Poor husband! Hope he gets better soon.
  11. Ocean

    Nasonex or Flonase?

    I use rhinocort and love it. I don't think it's affected my immune system.
  12. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Good point. I was on one flight where a woman was putting on nail polish, the smell was awful. She has a hard time understanding why I asked her to stop!
  13. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    I like those same advantages of the car too. But I wonder if a long car ride would be too much for me, especially if it's only the beginning of a trip. The plane sounds nice in that it would only be a few hours total, door to door. But then there's the issue of being stuck in a close space with...
  14. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    So Kina, do you think if given the choice between a short flight and closeby airports, say airport is 20-30 minutes away on both ends, and flight is one hour or so, or being a passenger in a car to the destination, say 7-8 hours, which do you think is preferable for someone with cfs/me? One...
  15. Ocean

    Circadian Rhythm Problems

    For those who use the blue light blocking glasses, when do you put them on? I experimented with putting them on later last night and I ended up sleeping quite a bit later. Prior to that I was putting them on as soon as it got dark out. In winter when it gets dark early, will I have to start...
  16. Ocean

    Circadian Rhythm Problems

    I want to update that the glasses are working wonders for me. My bed time has gotten earlier by several hours. I am wearing uv400 glasses. I really recommend trying this method.
  17. Ocean

    Tips on taking florinef?

    Thank you. I do have asthma too, though mild. One more question about florinef, have any of you who are ladies noticed it having any effect on your menstrual cycle? I read that that could be a possible side effect.
  18. Ocean

    Tips on taking florinef?

    So the calcium channel blocker works to keep the heart rate in check with POTS? In what way is it different from a beta blocker? Why were you prescribed that rather than a beta blocker? Thank you!
  19. Ocean

    Tips on taking florinef?

    I like that it can be used as needed. I'd like to ask my doctor about it. Thank you!
  20. Ocean

    Tips on taking florinef?

    Thanks so much everyone. This is really helpful. My doctor didn't mention anything about taking sodium and potassium or testing the levels. Is midodrinealso a POTS treatment?
  21. Ocean

    Tips on taking florinef?

    I have been thinking of trying this especially as my POTS is bad with summer heat. Does Florinef need to be taken with salt? Potassium? Do you get potassium in a pill or in another form? I'm a bit scared to try it because of being sensitive to meds and because of the side effects of...
  22. Ocean

    Can florinef cause emotional swings? depression, anxiety.. im in hell at times

    I'm so sorry you're having those symptoms. It sounds awful. I was thinking of starting florinef today. I've had the prescription for like a year and with the summer heat lately my POTS is really bad but now I'm having second thoughts after reading this thread. I already am dealing with mood...
  23. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Thanks a lot Sushi. So, you don't have to reserve it in advance, right? You just request it when you arrive? Also, if you are with someone, does that person push you or does someone from the airport still do it? I'm one of the ones who is bothered by the dry airplane air, possibly the change...
  24. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Sushi, Do they wheel you around it or you push yourself or how does it work? Are you in the wheelchair all the way up until the time you get into the place itself? Do OI/POTS issues get exacerbated just by being in a place?
  25. Ocean

    Circadian Rhythm Problems

    For the bright light therapy in the mornings, does the light need to hit the eyes, the skin, both, or what? Would wearing sunglasses negate the effects. I'm using natural sunlight outdoors.
  26. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Thank you for all the info. Now, if I don't have EDS, should I still be worried about flying beyond the usual issues of exertion? Is a short flight that severe of a problem for CFS/ME or mainly only if you have EDS also?
  27. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    Thanks. I'll have to do more research on it.
  28. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    I'm in the US. Could you tell me more about what they look for if you don't mind as far as symptoms and family history.
  29. Ocean

    DId your ME/EDS symptoms first appear after AIRPLANE travel?

    How do you get diagnosed for it? I'm curious about this conversation since I was considering a short flight for the first time in years. Now, I'm questioning it after this thread.
  30. Ocean

    Circadian Rhythm Problems

    I wish there was flux for tv too. I tried adjusting ours but it's too much to adjust at night and readjust in the day each day. I'm on the computer a lot more than I watch tv anyway, but still would be great if there was a way for the tv lights to adjust at night too like the computer does with...