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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. artaylo7

    Anyone have seizures?

    Hi Everyone, I recently had a 24 hr EEG on and the report was uploaded, but unfortunately I don't meet with the Neurologist to go over results for quite awhile. I've requested a sooner appt., but to no avail. Not looking for medical advice or diagnosis, but wanted to see if anyone has had...
  2. artaylo7

    Narrow Pulse Pressure

    Wow. Thanks so much for all the information! That is incredibly helpful!
  3. artaylo7

    Narrow Pulse Pressure

    Thanks!!!
  4. artaylo7

    Narrow Pulse Pressure

    Thanks so much! So sorry to hear about your suffering! That is really interesting to hear what has made a difference for you. Mine continually narrows as I stand as well. After a few minutes, my monitor can no longer read my BP. Lately, I seem to hit a wall around the 10-15 minute mark and have...
  5. artaylo7

    Narrow Pulse Pressure

    So sorry to hear this! I'm trying everything with little results yet. Although, I have noticed in the past week the severe brain fog that made me feel like I had dementia seems to be lessening. Not sure if it's a combination of everything or what. The compression socks are a pain! I live in...
  6. artaylo7

    Narrow Pulse Pressure

    That sounds like fun! hah. I'm not on LDN, nor know much about it, but I really appreciate reading different experiences. I know these types of things are very individual specific about what works or doesn't work. Hoping one of these random things I throw will stick. :)
  7. artaylo7

    Narrow Pulse Pressure

    Never heard of this! I'll have to check it out. Thanks!
  8. artaylo7

    Narrow Pulse Pressure

    Thank you! I honestly didn't realize how complex it was until very recently! I haven't looked into Ivabradine, but will... I have an appt with a specialist @ Mayo in late August and I'm hoping they'll be a little more versed, able and willing to spend more time on my case. Thanks again!
  9. artaylo7

    Narrow Pulse Pressure

    Thank you for the reply! I get neck tightness and my throat and glands feel sore (externally). Not sure if that is what you mean by sore throat... I can usually feel it coming and it starts with throat tightness/pressure that leads up to head pressure and headache along with severe brain...
  10. artaylo7

    Narrow Pulse Pressure

    Hi Everyone! I'm new to this forum and would appreciate any input. I'm undergoing lots of testing right now, but recently had a positive tilt test with Orthostatic Hypotension. Cardiologist prescribed Midodrine in the short term and am waiting for Northera. I've noticed that on standing my...