• 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.

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Search results

  1. PNR2008

    Has anyone had Midodrine make them sedated like a sleeping pill?

    I am still on midodrine. I can't get through summer or great changes in weather without it. My BP tanks and I still get pre-syncopy and syncopy.
  2. PNR2008

    An Update on the Mestinon Clinical Trial

    I have POTS and at 3X a day it made my eyes and muscles around the eyes quiver and twitch then turned into a migraine headache. I couldn't read, watch TV or use the computer, not worth it and it did not make me feel better at all even at lower dosages.
  3. PNR2008

    Despite Our Losses, People with ME/CFS Want More

    Helped me very much to read this. Thank you.
  4. PNR2008

    Retuximab coverage

    Great news.
  5. PNR2008

    Can only sleep at 7 am

    I know exactly what you are experiencing and it is very annoying to say the least. I have tried many things but for me it seems to come and go mysteriously. Meds help but only for a while. After all these years I still have night sweats where I change my bed clothes up to 3x a night. I end...
  6. PNR2008

    Clenching mouth while sleeping

    My dentist informed me of my TMJ. It's the little things that can blow you away sometimes even though it's not so little. I'm on moist heat and anti-inflammatory, soft food diet and sleeping on my back. It seems I have little or no cartilage in the jaw bone. Great, another damn syndrome.
  7. PNR2008

    Comment by 'PNR2008' in 'Not the last day'

    I have complete respect for you for sharing this part of your life. When I first got sick with ME, not knowing anything about the disease I felt like I was losing my mind on a daily basis. I slept the whole week-ends just to work less than a week, had mind blowing anger attacks and couldn't...
  8. PNR2008

    Calls for Ibuprofen sales restriction

    What gets me are the doctors that probably caused the heart attacks by prescribing NSAIDS at large dosages. In 1988 when I got CFS/ME my rheumy couldn't give me enough. I took 800MG of Ibuprofen up to three times a day, then time released aspirin, Voltarin, naproxen and they buzzed my head...
  9. PNR2008

    The Lost Years

    I have felt this too. Before I got sick at 39 years I was looking into adopting an older child but didn't even start after April 1988 onset. I felt that it was better for the child and myself not to have or be a sick parent. The choices that are made when one is well, owns a house and has a...
  10. PNR2008

    The Lost Years

    Almost 28 years, sudden onset but I had symptoms of POTS starting in childhood. One good thing is I got very sick at age 39 years. Therefore I had a life that I was proud of beforehand; had 2 careers, married, divorced, owned two homes by myself, raised German Shepherd Dogs and more often than...
  11. PNR2008

    Do we think CFS affects the heart or not ?

    As some of you know I went to the ER seven months ago because of vertigo and vomiting. I have POTS and my bp was low so I thought a saline infusion was all I needed. When I was waiting I noticed an unusual pain in my jaw and informed the nurse immediately. What was presented was a heart...
  12. PNR2008

    How does dysautonomia cause leg weakness?

    I've always have had leg weakness and pain but I have arachnoiditis due to back injury, surgery, oil-based dye in mylogram (take your pick).
  13. PNR2008

    Anyone else on clonazepam, trying to taper and experiencing serious HPA axis/hormonal issues ?

    Cold Turkey??? Absolutely not. I used klonopin to wean myself off lamictal (the worst drug I ever taken). I take klonopin .5m twice a day and in 27 years raised only once. It still helps me but if I ever want to go off I would learn all I could about weaning and use a knowledgeble doctor...
  14. PNR2008

    x-ray dye that caused crippling spinal damage

    In 1982 I received a mylogram before spinal surgery it was with pantopaque. Both Jesse Stoff MD and Jay Goldstein MD in 1988 and 1993 respectively said that it caused the CFS/ME in 1987. I do have arachnoiditis that nobody wants to talk about. When a medical professional gives me grief for...
  15. PNR2008

    For you are with me

    Be not afraid for I am with you always, come follow me and I will bring you peace.
  16. PNR2008

    Scared of the future

    I can empathize. I've had CFS/ME for 28 years, FM/POTS 25 years and guess what? Three months ago I had a heart attack. Never any regular heart problems but this was serious and I thought this could be my way out. Well it turned out to be Takotsubo or Broken Heart Syndrome and I am recovered...
  17. PNR2008

    New isolation and hopelessness

    @confetti11 I identify with you on so many levels that I don't know where to start. After crawling out of financial home problems, I should be happy but the fight made me so much sicker, I wonder if I'll ever get back to my "former" level of health. I was just in the hospital and only one...
  18. PNR2008

    Sinusitis worse when fatigued

    @Aerose91 Thanks that answers a lot of questions, many times my ears drum to my heartbeat or even the sound of tub water running or when I used to sing. I also have a deviated septum and polyps in my nose that some drs have tried to get rid of over the years. No matter what I must keep the...
  19. PNR2008

    Sinusitis worse when fatigued

    I wonder if sinus congestion can cause vertigo? I have this new devastating symptom 3 times in the last year. The first time I fell into an arm of a chair and broke my sternum. The last time, one week ago, I vomited so hard that bile was coming up but here's the thing, before that just mucus...
  20. PNR2008

    Why do I tell the truth?

    @Denisedodd1980 I am very sorry about your sister's death. It's just horrible to happen to all concerned. Pray for your relief from suffering and worry.
  21. PNR2008

    Religious OCD

    There is a condition called religiosity and also times when madness can seem like a religious breakthrough. Most mystics had mentors to keep them grounded and sane. Saints and Madmen by Russell Shorto is a coming together of Psychiatry and Religion. Many times the " insanity" can be helped...
  22. PNR2008

    My teeth are a mess

    Since having complex migraines from 11 years on I never took novacaine because the numbness made me feel like a migraine was coming on and sometimes it did. I used biofeedback while my dentist drilled away, then after age 21 I'd have an alcoholic drink or wine later as a reward and I could...
  23. PNR2008

    Stranded on Mars

    @RYO when I got sick in 1988, I could not wrap my head around the complications of this disease. So I just felt like I was a captive in my own home but in a foreign country with very odd rules. It was the only way I could cope with the drastic change in my life.
  24. PNR2008

    Stranded on Mars

    @RYO very well put.
  25. PNR2008

    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    I've had 4 TTT. The first two were in 92 and 94. Fainted on both within 7-9 minutes. I was put on Inderal and then an increased dosage. The last TTT I was on the Inderal and midodrine and did not faint but did not have a good stress test result, my skin biopsy was inconclusive for small...
  26. PNR2008

    Has anyone seen Dr Stoff in NYC

    I saw him in 1989 at his clinic in Great Barrington, MA. PM me.
  27. PNR2008

    Resignation

    I know I'll never get better and will probably get worse as time passes. Actually I never thought I'd live this long, 66 years. This is almost a shock to read because 28 years ago I was the CFS cheerleader. So long ago I have tried things that patients are doing now and I think, I hope it...
  28. PNR2008

    Possible seizures?

    I have a rest period always during a lot of stimulus, where I just stare for a few seconds usually at a neutral object like the wall or some other background. I am conscious of what's around me and even realize the time passing (about 5-8 seconds) then I'm back to real time and process as...
  29. PNR2008

    Pain without noticeable bruise

    @sillysocks84 I get the thumb pain lately whenever a migraine is on the way. I usually rub it gently until it subsides, which many times is tough to do. An accupressure person told me to do this when I get a migraine, it seemed silly until I realized I got the pain in between the thumb and...