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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. LauraB

    Starting Mestinon treatment first week in January - any advice?

    I'm not tolerating Mestinon very well, was wondering what was the other medicine your Doc put you on?
  2. LauraB

    Starting Mestinon treatment first week in January - any advice?

    what kind of reactions was he looking for?
  3. LauraB

    Poll: Mestinon Trial

    Did you get the IVIG infusions, and if so did they help?
  4. LauraB

    Poll: Mestinon Trial

    Here are the pros and cons of me taking mestinon right now after my crash. Pros: more energy, but wired energy Cons: Raises heart rate, and blood pressure, and after a few hours may bring down heart rate. increases inner tremors, wired, unable to get comfortable laying or in one position...
  5. LauraB

    Poll: Mestinon Trial

    If you don't mind me asking, who is your neurologist? I live in the Charlotte NC metro area and would love to find a neurologist who know about dysautonomia.
  6. LauraB

    Poll: Mestinon Trial

    my sleep improved, but so far not much else.
  7. LauraB

    Poll: Mestinon Trial

    It also makes me feel wired and emotional. I can't get comfortable in any position, sit up, jump up walk, lay down constantly in a vicious circle. I find I'm not resting like I should be to try to recover from this crash. I did have a lot of weakness after the crash, but I wonder how I would...
  8. LauraB

    Poll: Mestinon Trial

    two years ago I used to be on 90mg of Mestinon and took Propranolol as needed, no more than 20mg. I had no drug interactions, then a Doc had me wean off the Mestinon, I was off it a little over a year and then I had a really bad health crash in mid January. Now I think I'm drug sensitive...
  9. LauraB

    Poll: Mestinon Trial

    Which beta blocker are you on? I had a Bronchospasm one night and my doc told me bc I took propranolol and mestinon can cause this, even tho they were spaced out by 5 hours. I had done it in the past with no problems, but I did up my mestinon that day from 30 to 45 mg. I need both so not...
  10. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Thanks!:)
  11. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Laurel W, I was wondering what was the dose you worked up to, and did you experience side effects from Xyrem? I experience occasional bladder twinges, increased POTS in the morning and chest discomfort, and I noticed my expressive language is effected, specifically word finding when I talk. I...
  12. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Brooklyn Laura, Have u checked into the Patient Assistant Program? I don't quite understand why I qualified, but I'm so grateful I did.
  13. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Thank you for the supplement links, I should increase my potassium. I think I need to eat more salt, on occasion I will use a little fludrocortisone, but take it just to take a break from beta blockers. I've currently established a routine of 3 days on xyrem then 2 days off bc of the POTS and I...
  14. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Yes check with them, I'm just guessing because I can't think of any other reason than maybe they would like people diagnosed with ME to try the drug. I just looked at the paperwork and SDS it is a subsidiary of Express Scripts. So I don't know if you have to have that RX coverage or not.
  15. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Hi Perchance Dreamer, Good to hear the narcolepsy has decreased. Do u think xyrem helped with your fibromyalgia at all? i know, getting used to not eating in the evening is hard, but for me right now small price to pay for more solid sleep. My sleep was so fragmented. Also I have more...
  16. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    Thank u so much everyone for your informative posts! I've been on Xyrem for a little over a month but taking breaks here and there because of the increased POTS ( beta blockers help)and bladder twinges. On my nights I take a break from xyrem, i use Lunesta to sleep. My doctor's nurse told...
  17. LauraB

    Xyrem/sodium oxybate experiences? Advice needed

    I have primary ME/CFS and started Xyrem on August 25th. I am still trying to adjust to it. I'm currently on 2.25cc 2xs a night. I have had to take breaks from it from time to time as it increases my POTS, I also have OI. Seems to cause some bladder issues, but nothing that interferes with...
  18. LauraB

    Tips on taking florinef?

    Hi All, Just started florinef. I'm titrating up. I'm at .05 and I noticed various symptoms, on the good side, it has helped my sleep. On the bad side I wake up feeling more hung over because with MECFS it seems the more I sleep the worse I feel the next day. Also I have noticed I am feeling...
  19. LauraB

    Plaquenil/ hydroxychloroquine

    Thank you all for your input. Yes, I read Dr. Montoya was prescribing plaquenil for ME and that piqued my interest bc of my brother's success with it. My brother was also on it 1 1/2 years. Jah, how long have you been on plaque nil? I guess we all respond differently to different...
  20. LauraB

    Plaquenil/ hydroxychloroquine

    Kati, I was wondering how you are doing now? Are you still on the plaquenil? I'm thinking about trying it because my brother came down with a very serious auto immune disease CREST. One doctor was only giving him two years to live. I had to take him to and from a rheumatologist at Johns...
  21. LauraB

    Who has severe and disabling CFS/ME without Pain?

    I've been diagnosed with clinical CFS/ME. I have no pain. When I first became sick I had some tender lymph nodes in groin and armpits, but that has subsided long ago. My major symptoms are crippling fatigue, pretty much housebound, need to lay down much of the day, horrible insomnia, this was...
  22. LauraB

    Comment by 'LauraB' in 'Everything I Needed to Know About Managing My Health I Learned at Disneyland'

    Just wanted to say your blog has been so insightful! I'm starting ampligen treatments tomorrow and appreciate your chronically your experience for those of us on this quest to find healing from this horrible illness.
    • LauraB
    • Blog entry comment