• 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. T

    How Low Does Your Blood Pressure Go?

    Pre- relapse 'normal' BP for me was 110/60 in sitting. Now my morning BP is about 85/55 (bad day) or 95/58 (good day). I can manage to get it up to 100/60 on a good day with lots of fluid & salt by the nighttime. My BP seems to fluctuate very quickly with postural change too.
  2. T

    Is it worthwhile getting a blood pressure monitor??

    Hey Tulip, Seeing as you are a fellow Aussie- I might be able to help you with names of Doctors who are dysautonomia aware and experienced with treating/diagnosing blood pressure disorders and autonomic dysfunction. It sounds like it could be neurally mediated hypotension/neurocardiogenic...
  3. T

    Is it worthwhile getting a blood pressure monitor??

    I've got one Tulip, my GP suggested it for keeping an eye on my BP with my POTS and how it changes. Especially when I was complaining of sharp headache type pains & increased brain fog. It was also suggested as evidence to take to a specialist/cardio. Doctors often suggest it to people with...
  4. T

    Does anyone else have a problem with vommiting or their colon not working?

    Thanks for sharing, its good to know that someone else has similar symptoms! I've found that I can have breakfast (a small one albiet) but I have to sit with my feet up for the next hour or two. If I have a busy day and have to get ready & go out, then I've discovered I need to not eat very...
  5. T

    is this a pots thing

    Six weeks is a long time! It should not take that long for a cardio to interpret the test. Can they send info to your GP/PCP? How frustrating, I hate waiting for results. I also had a thought when mulling this over last night, If you have a hyperadrenergic type POTS, you can have elevated...
  6. T

    Does anyone else feel revolting after a shower?

    Bargain! Yeah thats what I meant by a cheapie/discount store. In Australia there is one called Aldi. They often stock really random things, but you can occasionally get medical type equipment super cheap. So have a shop around!
  7. T

    POTS vs NMH in people with ME/CFS

    Thats really interesting info ahimsa re NMH. I've never really fainted (not since I was a teenager and I'm mid 20s now), but I have had some wicked bad pre-syncope episodes (pre-fainting). I get a lot of symptoms, nausea, dizzy/lightheaded, grey vision, dull hearing, hot/cold & sweaty etc so I...
  8. T

    is this a pots thing

    Oh also, It may take a bit for the HR to slow down/calm down after you sit/rest. My palpitations are worse after exertion (particularly climbing stairs). It could very well be an ANS issue affecting the heart, but you would need to get more detailed tests into your ANS function. What did the...
  9. T

    is this a pots thing

    By palpitations do you mean excessively strong or fast heart beats? I'm not sure about the ANS re- regulating itself. It is possible to have conditions such as inappropriate sinus tachycardia as well as POTS. I *think* that POTS is not normally over 100bpm at rest (unless you are really...
  10. T

    Does anyone else have a problem with vommiting or their colon not working?

    I have vomited a few times, from a severe gastritis flare up, and also from a really bad POTS episode. I also get IBS type issues (alternating diarrhea & constipation), I think thats probably a POTS/dysautonomia complication too. Do you have problems with orthostatic intolerance or POTS? The...
  11. T

    Does anyone else feel revolting after a shower?

    A stool would be better if you have a small shower. They can be a bit expensive, that price was for me living in regional queensland though (much more $$$ than in urban areas). You can sometimes get them from cheapie stores, like aldi (Aust store). An a (not currently practicing Occupational...
  12. T

    Does anyone else feel revolting after a shower?

    Most local chemists/pharmacies should have them. If you have a look for medical/disability equipment suppliers in your local area, they should also have shops where they sell them. I just googled the local ones and rang around to find the prices, then went and bought the cheapest one (they can...
  13. T

    Low dose beta blocker for P.O.T.S. is WORKING

    I've got a few POTS friends (POTS only, not ME/CFS) as well as ones with NMH and other forms of dysautonomia, and this topic has come up a few times. Its tricky to put POTS or dysautonomia on your medi alert bracelet if the docs/ambos have no idea what it is. A medi-alert bracelet is probably a...
  14. T

    POTS vs NMH in people with ME/CFS

    I think you are right that POTS is easier to diagnosed than NMH. As the HR changes (>30bpm or over 120bpm) must occur within 10mins of standing or head up tilt for POTS diagnosis. You are right that NMH needs a tilt table test of 30-45mins. My crappy local tilt test was only drug free for 20mins...
  15. T

    Is anyone else scared to go to emergency?

    I also never say ME or CFS, when I tried to tell the last hospital I had POTS (postural orthostatic tachycardia syndrome), the docs had no idea what it was. They just looked at my stats (I was hooked up to a machine while in bed) and said- oh you aren't tachy at the moment (well duh! I was lying...
  16. T

    Is anyone else scared to go to emergency?

    Thats a good point. Unfortunately in my current location (regional Australia) there is only one local ED. Thats the time I had to wait 4hrs and wasn't seen. When I was visiting family (in another state) there were a few ED's to chose from luckily.
  17. T

    Is anyone else scared to go to emergency?

    I've luckily had nothing but great experiences with the nurses I've seen (both in triage and when admitted), its the doctors who are usually always complete jerks or have no people skills whatsoever.
  18. T

    Does anyone else feel revolting after a shower?

    Oh Tulip thats awful! Showers really tire me out too, especially if I have to wash my long hair. I have POTS/OI so I think its a combination of- any prolonged static standing (not moving around), blood pooling in your feet/legs, warm/hot temperature, raising arms above your head.... I shower...
  19. T

    Low dose beta blocker for P.O.T.S. is WORKING

    The only IV saline I've had is when I was in the emergency department for stomach troubles (vomiting, pain & nausea) as I was really dehydrated. It did help me feel better though, especially as the dehydration was causing a POTS flareup. I have a few POTS friends (POTS only not ME/CFS) who...
  20. T

    What's causing post-meal crashing?

    I sympathise with your H.Pylori troubles. I tested positive about 2 months ago and went on a weeks worth of high dose anti-biotics and nexium (proton-pump inhibitor). Have you tried antibiotics for H.Pylori eradication? In regards to adrenal function, I found that licorice root helps to...
  21. T

    What's causing post-meal crashing?

    I dont know how much salt is ok, my docs just said use liberal amounts! As long as you dont have hypertension (high blood pressure) then you should be ok. Do you have a home BP monitor? Mine is usually pretty low in the morning and during the day and the best it gets by night-time is 110/60...
  22. T

    Total loss of appetite

    I cant really offer any advice but I do experience that most of the time too. I have lost most of my appetite. I only get a little hungry in the mornings, not really later in the day at all. I could just not eat. I do try to have small meals, something tasty/easy to eat. Does eating make her...
  23. T

    Low dose beta blocker for P.O.T.S. is WORKING

    LOL Its not like any/most docs actually test for mito disease anyway
  24. T

    What's causing post-meal crashing?

    Do you have a problem with OI or POTS? I have POTS and have noticed a worsening of the 'food coma' that occurs post meals. Like someone already mentioned, a great deal of blood is being shifted to the stomach for digestion. This makes my POTS worse. Having small meals and light food (avoiding...
  25. T

    Is anyone else scared to go to emergency?

    I've had to go to ED twice in the past few months. The first time I said I had moderate-severe 'CFS' and the second time I just told them about the POTS/dysautonomia (which they didn't know about either). The first visit I went for severe stomach pains, nausea & vomiting and waited in chairs...
  26. T

    Increasing Famvir Dose

    Good luck Heaps!
  27. T

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    No worries! How do you go if your upper body/head up propped up by pillows? have you tried raising the height of your bed? Florinef is also commonly prescribed for orthostatic intolerance and orthostatic hypotension. Increasing blood volume can help in all conditions. I was on florinef about...
  28. T

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I have POTS (postural orthostatic tachycardia syndrome) so I get tachycardia with a change in postural position (from lying/sitting to standing). My HR often goes from 70-80bpm resting to over 130bpm within 5 mins. I started a low-dose beta blocker (propranolol- 20mg split dose am/afternoon) and...
  29. T

    Why is Australia so behind the rest of the world in tests and immune modulators??

    Yup thats the one! A bit creepy I found, not very personable, not at all like Dr D
  30. T

    Why is Australia so behind the rest of the world in tests and immune modulators??

    I think I've actually seen that immunologist you are talking about Tulip. He is more a clinical allergist not an immunologist per se. I only saw him twice when I lived there for 6 months, he was a bit weird, made me feel slightly uncomfortable. I did see Dr Deed in person originally (as I'm...