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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. Awags1986

    Insomnia ideas?

    It was my PCP that suggested it. My functional doc started throwing out tests like CD57, Genova nutraeval, stool tests etc...and I nearly kissed him on the mouth. Yeah, I like visiting family in Michigan, but would only move if health-care was better...maybe someday?
  2. Awags1986

    Insomnia ideas?

    @Lipac I'm in Ohio, but grew up in Michigan. I am lucky in that I have the Cleveland Clinic and a wiekd renowned POTS doctor in Toledo, but the process of getting my insurance to allow me to go to either one of them is beyond slow. Also, neither one of them treat CFS to my knowledge. I can only...
  3. Awags1986

    Watching Unrest again, I'm noticing something.

    I've sat with my legs on the dashboard or crossed as long as I can remember. My dad always say with one leg crossed over the other as well. I was recently diagnosed with POTS, and my cousin was diagnosed with Ehlers-Danlos which I'm sure I also have. I was about to order the compression...
  4. Awags1986

    Insomnia ideas?

    I've literally switched PCP's 4 times in the last few years, and because I live in the armpit of America they all suck. My current PCP refuses to run anymore tests until I get my "hypochondriasis" under control. All this because I ask for specific labs to be run, and do my own research...I could...
  5. Awags1986

    Insomnia ideas?

    Oddly enough Clonazepam doesn't touch me. I take it and feel like I took a sugar pill...Not a bit of sedation. Same with Valium. I've tried CBD, melatonin, Valerian, magnesium, adjusting b vitamins...etc. I have really good sleep hygiene...I only have issues when in symptomatic, which ranges...
  6. Awags1986

    Can anyone recommend a good P.O.T.S. specialist in N West England please? And P.O.T.S./OI experience

    You had mentioned that you had atypical ME. What were your symptoms, and what made your case atypical? I've considered setting Blair Grubb in Toledo b because I live in Ohio. Not sure if I'll be able to get in anytime soon, but I'm glad to hear ivibradine worked for you both.
  7. Awags1986

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w Mind.Blown. My family's history of neck issues along with chronic health issues could all come down to this...I cannot thank you enough for this info. Please keep us posted on your health, and if you see continuous improvement(which I so very hope you do!) My 4 year old son complains of...
  8. Awags1986

    Widespread pain and altered renal function in ME/CFS patients.

    The trial and error aspect of this disease is maddening! It's shocking how strongly we can react to things, and how each one of us is so very different. What reaction did you have to the pre/pro biotics that didn't agree with you?
  9. Awags1986

    Widespread pain and altered renal function in ME/CFS patients.

    I've heard this mentioned before, and will be adding some to my next supplement order. Those are essentially prebiotics, right? Do you have a guess as to why that helped with polyuria?
  10. Awags1986

    Widespread pain and altered renal function in ME/CFS patients.

    @Richard7 @Learner1 @JaimeS Thank you all so much for the input. I am going to go forward being more consitent with my electrolyte drinks. I must admit I only drank then when I felt a crash coming on, and realize I would benefit from drinking them daily, regardless of current lack of symptoms...
  11. Awags1986

    Research update from Prof. Ron Davis (video!)

    Thank goodness he responded to medications! My uncle was at a small community hospital outside of Detroit, and I honestly feel that if he had been somewhere like U of M that it wouldn't have all gone downhill so quickly :(
  12. Awags1986

    Widespread pain and altered renal function in ME/CFS patients.

    Was it through trial and error that you realized it was calcium or did you have a test run to identify the need for it ? I do get nauseated at times too with it which makes me thing potassium, but I'm always scared to take large amounts of anything in regard to electrolytes...I know I need to...
  13. Awags1986

    Widespread pain and altered renal function in ME/CFS patients.

    I know this post is old, but I'm glad to hear this symptom went away for you! It's one of my most debilitating issues during crashes. It causes tachycardia, extreme flank pain, sometimes pelvic/abdominal pain, and insomnia that no med can seem to work for. I assume it's because my electrolytes...
  14. Awags1986

    Research update from Prof. Ron Davis (video!)

    My uncle passed away from complications of what they believed to be Auto Immune hemolytic Anemia that was unresponsive to medications....Is that similar to DIC? His hemoglobin was 6 at one point...
  15. Awags1986

    Vertigo and Horner's Syndrome

    Have you looked into POTS? (Postural orthostatic tachycardia syndrome) I have this, and gets bouts of vertigo. Some people have it a bit more severely, and get all the symptoms you describe. It takes a tilt table test to diagnose, but at home you can Google Poor Man's Tilt Table test, and check...
  16. Awags1986

    multi-day sleep cycle?

    I have a somewhat similar pattern with my symptoms. My pattern is a bit more erratic though. 3 days ON, 2 weeks OFF, 4 days ON, 1 month OFF. I also know when my ON days are coming due to agitation I start to feel mid day. From that point forward I know insomnia(sometimes so bad klonopin/valium...
  17. Awags1986

    Sensitivity to Meds -- What disease should I be tested for?

    anti parasitic, eh? My son and I tend to have increase of symptoms 3 days prior to the new and full moon...when parasites come out of hiding to reproduce. Had you noticed a similar pattern? What caused you to go the parasite route?
  18. Awags1986

    Chronic fatigue syndrome and idiopathic intracranial hypertension

    Not sure if it could cause IHH, but at the onset of my symptoms I asked to have my serum renin drawn and it was triple what it ought to be. Renin stimulates angiotensin and vasoconstriction, correct? What could cause such high renin? Does anyone else have this lab anomaly as well? Could this...
  19. Awags1986

    My very, very worst symptom is back :-(

    Yes, and thank you so much for sharing. My onset was very acute and the tachycardia/pots symptoms were at the onset. However, I'm not exactly sure what caused my crash. I had been on 4 rounds of abx for a group b strep infection in my bladder and uterus, and had been off of those for about 2...
  20. Awags1986

    My very, very worst symptom is back :-(

    Also, did you experience sleep disruption like this as well?
  21. Awags1986

    My very, very worst symptom is back :-(

    I haven't, and my doctor has just told me he won't run any other tests until I see psych. This has all been so hard :( I haven't even had a TTT done because my doctor wouldn't order it and m insurance declined me doing it at the Cleveland clinic...luckily my allergist (Mast cell literate)...
  22. Awags1986

    Insomnia ideas?

    If you don't mind me asking...what does your insomnia entail? Inability to sleep? Tachycardia? Do you get jolted awake while trying to drift off? Sorry, I'm just trying to determine if my insomnia is abnormal or not. Several days a month I have spells where my body jolts me awake every time I...
  23. Awags1986

    My very, very worst symptom is back :-(

    One last question if you don't mind...would this symptom last several days for you? My resting HR is always around 100, but the days where I get woken up every time I drift off last for days(3-4 on average), and eventually it feels like my body doesn't even have the energy to produce tachycardia...
  24. Awags1986

    My very, very worst symptom is back :-(

    Thank you for letting me know that there potentiallybis hope that this isn't permanent. I need to talk to my cardiologist because every time I bring it up with my GP he says it's just anxiety....of course.
  25. Awags1986

    My very, very worst symptom is back :-(

    I'm not sure how things are going for you now with this particular symptom, but I honestly feel like this is also my most debilitating symptom. My symptoms started acutely about 6 months ago, and from the onset I have had a resting heart rate of at least 100. It goes up to 170 if I even walk (no...
  26. Awags1986

    Mitochondrial Disease

    I forgot to answer some of your questions earlier...we have what's called an EPO I guess? Exclusive to the hospital my husband works for. It's through medical mutual of Ohio. I find it an insane video Flickr of interest for a hospital to have their own insurance plan like that....it's such a...
  27. Awags1986

    Mitochondrial Disease

    Wow!! So much great info, thank you. I actually called Dr Cohens office yesterday to talk to my sons doctor (she works there too) but they told me I have to talk to her first because he's been seen by her and she can potentially run things by him....fingers crossed :)
  28. Awags1986

    Mitochondrial Disease

    That makes complete sense. I did start at 200mg about 3 days ago. We shall see!
  29. Awags1986

    Severe palpitations and tachycardia.

    Whoops! Just realized this wasn't on one of my posts...my bad. Apparently the brain fog is strong in me today :/
  30. Awags1986

    Severe palpitations and tachycardia.

    I haven't. Is that a kit you order and then have done somewhere like labcorp?