• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. xebex

    very high morning cortisol

    @Gingergrrl thanks, No I’m not on any steroids.
  2. xebex

    very high morning cortisol

    @Gingergrrl thanks very much Ive not got my ACTH results back yet fingers crossed no tumor eeek!
  3. xebex

    very high morning cortisol

    Thanks @Springbok1988 yes I waiting for the ACTH result to come back I really hope doc did it properly as I managed to persuade him to come to my home to take blood but the result isn’t showing up yet up on the health app. i wonder if my old doc just wrote the high cortisol off as stress...
  4. xebex

    very high morning cortisol

    @Judee thanks yea I did a saliva one too now I come to think of it and that read normal. But that was back when I was mild I’m now severe. Panicking because I don’t want and can’t cope worth a load more test when I know I don’t have cushings. Doc is thinking I could have an adrenal or pituitary...
  5. xebex

    very high morning cortisol

    in 2018 i had a very hight morning cortisol test - i then took the dextro pill and had low cortisol next day so ruled out cushings. today i had another am cortisol test and its vey high again (not sure its been this high for 5 years can't have been cos in general ive been fairly stable) i have...
  6. xebex

    I have developed an arythmia

    Ah that’s makes sense but I really hope I don’t have a lesion not sure how TVNS could cause that so quickly. I don’t really have any other VN symptoms it seems strange I’d have a Racing heart but no other symptoms. Sometimes when I feel I’ve over done things the left side of my neck and throat...
  7. xebex

    I have developed an arythmia

    @vision blue thanks as a general rule the side the uvula deviates away from is the “weak” or damaged side but mine is deviating towards the side I stimulated which suggests it’s in spasm or over toned - it’s tone is stronger than the right side so the right side appears weak but actually it’s...
  8. xebex

    Visible symptom tracker app

    you put your finger over the camera light and the camera lens can read the blood flow through the finger, it detects BPM and apaprently HRV too though i can't imagine that being very accurate.
  9. xebex

    I have developed an arythmia

    @Gingergrrl i was using a tens at specific frequencies for VNS i think vision_blue was using something else.
  10. xebex

    O2 Levels Experiment

    my o2 alway seems to be around 96 even though i can feel the hypoperfusion in my brain - it frustrates me that hypoperfusion in the brain doesn't show up on an oximeter.
  11. xebex

    I’ve dropped to severe please help

    @t27r hi! thanks for your reply - yes i think there was something going on with the adrenals for sure - it was a massive adrenaline dump after taking an oral rehydration solution which i took because my HR had soared after doing vagus nerve stimulation. I thought i was in a POTs flare hence...
  12. xebex

    I have developed an arythmia

    Wow that’s exactly what I did, the vagus nerve stimulation was helping the ME for sure I was crashing less and PEM was less but it did have some side effects too but everyone in the Fb group seems to be having such success with it I kept going till one day it suddenly just spiked my heart rate...
  13. xebex

    I have developed an arythmia

    I mean Sinus node in the heart.
  14. xebex

    I have developed an arythmia

    thank you, yes i saw the post, i will bear Atenolol in mind if the propranolol isn't succesful - it does seem to be helping so far, but i think the fact its quick acting might be an issue. I have an appointment with internist soon - i'll mention the zio patch. But i think i need an echo...
  15. xebex

    I have developed an arythmia

    so update after 3 weeks of hell - the arythmia has gone. The beta blocker has lowered my HR, i'm upright for a few minutes more a day, i manged to walk downstairs and eat soup at the table, but then had to get back up stairs oops - probabaly shouldn't have done that - we shall see! Things are...
  16. xebex

    I have developed an arythmia

    i do have a BP monitor i have low BP but it's "low normal" ive checked it in the night when having sleep apnea and it was low but again not "dangerous" now i'm on this beta blocker and things have calmed a little my BP has risen to a slightly better number.
  17. xebex

    I have developed an arythmia

    Pretty sure I have central sleep apnea but only in a crash, it goes away once I’ve recovered. I’m actually having an in home test soon but I doubt they’ll find anything and I’m not going to deliberately crash myself.
  18. xebex

    I have developed an arythmia

    No I’m not vaccinated but I did have Covid a couple months prior, I see no correlation infact I actually started to improve after Covid weirdly. I was doing vagus nerve stimulation which pushed my HR up so I then took an oral rehydration solution which made my system go totally nuts and landed...
  19. xebex

    When did your unrefreshing sleep start?

    I think most people at my function level feel worse than me. Which is odd, I think Over time some of my immune stuff has got better. But I’m still plagued by orthostatic intolerance which leads to horrendous neurological crashes. My ME started quite typical but is probably fairly atypical now.
  20. xebex

    When did your unrefreshing sleep start?

    i get your point - as in sleep does not refresh your health - you wake up the next day and you still have ME BUT i often wake up the next day, even with low moderate condition, and can sometimes feel totally great and refreshed but that is soon snatched away and the drudgery of the day will...
  21. xebex

    When did your unrefreshing sleep start?

    i don't feel liike unrefreshing sleep has much to do with ME i think it's a stress response to the illness ather than part of the illness. When i first got sick i was mild and my unrefreshing sleep was horrendous (because i was so stressed about what was happening to me maybe?) - i would wake up...
  22. xebex

    I’ve dropped to severe please help

    @atkas interesting yes I think I have two types of POTs neuropathic and hyperadrenergic. I’ve found salt loading really doesn’t do much.
  23. xebex

    I’ve dropped to severe please help

    @Atlas - thank you - yes aggressive rest is certainly helping. am feeling a bit better now but am still unable to by upright for more than a minute. i think this has all been a massive hyperadrenergic pots flare up - i just thought i had pots didn't realise it was the hyperadrenergic type as my...
  24. xebex

    I have developed an arythmia

    Thank you, I think meds are needed for sure. What have you been taking? I’m starting propanalol. But am wondering about ivabradine. Salt and full length compression stockings did very little.
  25. xebex

    I have developed an arythmia

    Thank you very much @wabi-sabi that’s reassuring. I’ll give that link a read.
  26. xebex

    I have developed an arythmia

    I feel like potassium may have actually Been the culprit I took an oral rehydration solution for my POTs and everything spiralled out of control. My electrolyte levels are apparently fine now though. God I’m scared that’s I changed my heart rhythm somehow.
  27. xebex

    I have developed an arythmia

    Thanks @visionblue I really don’t know what is what is going on. I have POTs but It’s never fit a proper description. I think im More likely hyperadrenergic POTS but I have low/normal blood pressure it does rise a little when I stand I but doc said that was normal. i was not given a label of...
  28. xebex

    I have developed an arythmia

    Thank you I have used the proponalol but I think the prescription one doesn’t work properly the one I had In The hospital was better. I’ll check out the links and I might have some taurine I think - can I just take whole pill?
  29. xebex

    I have developed an arythmia

    Part of the reason I’m so sick at the moment is I have developed an arrhythmia on top of 150bmpm standing HR. I’ve been to ER twice and they can’t find anything (but have prescribed propanalolbut I keep trying to explain it only happens when I sleep. I haven’t slept for 2 weeks now because every...
  30. xebex

    I’ve dropped to severe please help

    Yes possible dystonia but also adrenal. I’m very very stressed at the moment and I think my body just can’t control its adrenaline response. The beta blocker helped but side effects are concerning.