• 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, 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. B

    Mestinon – why start with one dose daily and not 4 small dosages?

    It's when the sympatetic part of the ANC is more (very!!!) active than the parasympatic. It feels like my body is "high" and always on alert! I'm still bedridden. When I have this sort of reaction it takes +/- 200 days before the Sympathetic storm is "turned off". And after the "switch" turns...
  2. B

    Mestinon – why start with one dose daily and not 4 small dosages?

    Hello Mel9 My situation is still the same and I'm still battling with the "sympathetic storm”. I'm only on 4 x 5 mg mestinon due to the current situation. I will increase my dosage when i feel my body is ready. Hope it will be soon. It’s uplifting to hear that you are still doing fine on...
  3. B

    Mestinon – why start with one dose daily and not 4 small dosages?

    Hi I am increasing the dosage very slowly due to my bad condition. I have decided to increase the dosage with 5 mg every week until I feel my body is more “in balance” (I have been very sick since October. I have some sort of “sympathetic storm” – it’s horrible). I’m tolerating Mestinon quite...
  4. B

    Mestinon – why start with one dose daily and not 4 small dosages?

    I’m so happy for you Mel9 I guess you are right. The body needs time to adjust to the medication.
  5. B

    Mestinon – why start with one dose daily and not 4 small dosages?

    Hello Do anyone know why some doctors recommend starting with one daily dose? My doctor wants me to divide the dosage in 4 daily dosages because of the half-life. He has little experience with Mestinon and I see that most other on this forum start with one dosage and increase to two dosages...
  6. B

    Starting Mestinon treatment first week in January - any advice?

    I just explained how al my symptoms match the symptoms of low levels of acetylcholine. I also told my doctor that with my low quality of life I don’t have anything to lose. My doctor agreed. I started with very small doses (5 mg x 2 daily) and increased very slow. I’m now on 4 x 10 mg and are...
  7. B

    Starting Mestinon treatment first week in January - any advice?

    I'm happy for you @Mel9 I guess you have a new life now :)
  8. B

    POTS - huge pulse increase from very smal movements

    @sunshine44 @Belbyr @Sushi I had my first two small doses om Mestinon today. First a 5 mg dose at 10 am and a new dose at 13 pm (gave me an effective dose of 7-8 mg at 14.30 pm as a result of the half-life of the first pill). I had no side effects. Me feet (especially my toes) changed color...
  9. B

    Starting Mestinon treatment first week in January - any advice?

    I had my first two small doses today. First a 5 mg dose at 10 am and a new dose at 13 pm (gave me an effective dose of 7-8 mg at 14.30 pm as a result of the half-life of the first pill). I had no side effects Me feet (especially my toes) changed color from blue to a more normal skin color...
  10. B

    POTS - huge pulse increase from very smal movements

    Do you do anything to "break" this bad cycle when it happens to you?
  11. B

    POTS - huge pulse increase from very smal movements

    This also just happen with me when I'm at my worst o_O. I support your hypothesis but I think the main problem when we are in this state is that the parasympathic nervous system are unable to slow down the heart beats after the sympathetic nerous system has increased the heart beats (the...
  12. B

    POTS - huge pulse increase from very smal movements

    I use a pulse watch and goes to the toilet when my heart is at it's best (60-70 minuites after taking propranolol). Try this It helps!
  13. B

    POTS - huge pulse increase from very smal movements

    Yes, occasionally I have to eat at nights. Al the doctors I have meet say that I'm the most spesial patient they have ever met o_O
  14. B

    POTS - huge pulse increase from very smal movements

    @sunshine44 Have you seen this interview with dr. Systrom?
  15. B

    POTS - huge pulse increase from very smal movements

    It seem like we have exactely the same. I think our symptoms are caused by an unbalance between sympatic and parasympatic nervous system. The parasympatic nervous system are not able to slow down / create balanse in the heart (and the whole system).
  16. B

    POTS - huge pulse increase from very smal movements

    My pulse increase 15 to 30 beats just by moving in bed or by raising an arm. Anybody else who has this problem? What mecanism can be controlling this?
  17. B

    Starting Mestinon treatment first week in January - any advice?

    Hello @wigglethemouse Are you taking your dose 2 or 3 times a day? Or is the plan to increase to 3 times a day after a while?
  18. B

    Starting Mestinon treatment first week in January - any advice?

    Hello @Mel9 Are you taking your dose 2 or 3 times a day?
  19. B

    Starting Mestinon treatment first week in January - any advice?

    Thank you @RebeccaRe I will try to hold back if Mestinon works for me :)
  20. B

    Starting Mestinon treatment first week in January - any advice?

    I can live with that! 'm very sick at the moment, so nausea is "nothing" at the moment!
  21. B

    Starting Mestinon treatment first week in January - any advice?

    The doctor will give me antidote if needed :). Hope I won't need it :thumbsup:
  22. B

    Starting Mestinon treatment first week in January - any advice?

    Thanks @wigglethemouse Just to be clear : You mean to take 15 mg once a day for 7 days, and then increase to 15 mg x 2 times daily for 7 days, and then increase to 30 mg morning and 15 mg in the evening and so on…………………?
  23. B

    Starting Mestinon treatment first week in January - any advice?

    I'm starting Mestinon treatment in a couple of days. I'm very sensitive to medication and would like some advice concerning starting dosage from other members with experience form Mestinon. My doctor don't have any experience with this treatment, so any advice would be highly appreciated :)
  24. B

    Bad reaction after quitting propranolol

  25. B

    Bad reaction after quitting propranolol

    I'm back on the propranolol and hoping for the best :-)
  26. B

    Bad reaction after quitting propranolol

    Hello I think it helps my POTS more than it helps my CFS. My propranolol pills are German and the pharmacist told me that the pills had to be stored air sealed (she got the information from the producer of the pills). Thanks, I really hope to get back to an activety level of 18-20 % again :)
  27. B

    Bad reaction after quitting propranolol

    Thank you so much :)
  28. B

    Bad reaction after quitting propranolol

    Hello When I'm very sick I have to eat all the time (and I don't gain any weight). I'm also extremely sensitive to everything. Do you have POTS?
  29. B

    Bad reaction after quitting propranolol

    Hello I startet the propranolol treatment again in the end of October. This gave my a huge reaction. I got very warm and wasn't able to wear clothes for 2 months. I'm still on the propranolol hoping for the best.
  30. B

    Bad reaction after quitting propranolol

    I’m a European woman in my 40’s who has severe POTS, but I have had good effect from propranolol (5 mg x 2). Before starting this treatment my average shape/condition have been from 8 -12 % of what a healthy person can do. After starting using propranolol my shape has increased to 18-20 %. Due...