Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Echo

  • Rank
    Advanced Member

Profile Information

  • Gender
  • Location
    Southern Hemisphere ;)

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. This physiological study that came out recently suggests that fight or flight is driven by a bone hormone. Not sure right now how this could relate to POTS but very interesting. https://phys.org/news/2019-09-bone-adrenaline-flight-response.html?fbclid=IwAR08hq2sYw6fBF0wxnGLdzKHUi7mg8JL2xgn_-byZv2jj6Z9tzICdXalIYQ
  2. Hi @StayAtHomeMom, I think the problem is not with vaccines but with our bodies. So many people vilify vaccines as "causing" this or that but the vast, vast majority of the population who get vaccines have absolutely no problems with them. Also, it's actually hard to prove that the vaccine caused any particular issue to arise. There is simply no way to tell and people who do this are committing the post hoc fallacy. Classic correlation/causation issue. I think if someone starts experiencing issues after a vaccine, it's because their body already has problems. I personally doubt that a healthy person whose body systems all work well will suddenly become incapacitated after a vaccine. For example, when I took the pill I had an extreme reaction to it. Doctors don't believe me but my reaction was so bad and my blood pressure went so low I actually blacked out in my own home. I literally fell to the ground and my mum found me collapsed in the kitchen (and that was only one of the bad symptoms of the pill for me). For years I was very angry and would think "If only I didn't take this stupid pill, it has caused all my issues etc." But now, after many years, and reading about other people's experiences, I realise that the pill didn't cause my issues. My body already had issues, otherwise it wouldn't have such a hard time dealing with the pill. Does that make sense? If you think your children already have health issues then sure, be cautious, but I wouldn't say the vaccine can cause any issues, only make existing ones worse. Having said that, I have been fully vaccinated as a child/adolescent and get the flu shot every year and I have not had any reactions to those vaccines. I am aware of the HPV vaccine controversy but I'm not sure what people are afraid of in this vaccine. Is it the adjuvants? The preservatives? The HPV strains themselves?
  3. Hey guys! Just came across this and didn't realise this was an actual thing! There are some studies showing that floatation therapy calms down the nervous system in people with anxiety. Here is a sample article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040829/ Has anyone here tried flotation therapy? If yes, did you experience any benefit?
  4. @potsiebarbie That was my first symptom. And it was all on the right side of my body as well. Doctor was like, well it's carpal tunnel. And I said ok, that's my hand/wrist but what about the ones in my neck, hip, foot etc? They do just stare at you blankly. It is indeed a nerve thing. Mine have decreased in frequency quite a lot over time so I hope yours will too!
  5. Hi @gossamer4448, it's trial and error getting the right ratio of salt and water. While many people are helped by drinking lots of water you also need to remember that the more you drink, the more electrolytes get washed out of your system so if you're drinking a lot of water you need a lot of salt. This is also why sports and electrolyte drinks are recommended. Try different amounts of each over time and keep a diary to see how you feel. I have non-POTS dysautonomia and actually feel better when I cut down on my water intake. This may be completely the opposite for you.
  6. Hi all, the lining of your nasal passages is under control of the autonomic nervous system. Its swelling and constricting is an autonomic function. I felt all the things you guys are describing but my CT scan was absolutely "crystal clear" of any disease (ENT's words lol!). So apparently you don't need to have sinus disease to feel congestion and pressure and the like. https://www.karger.com/Article/Pdf/109439
  7. Hey @potsiebarbie, I get this often in my face. I don't think it's anything dangerous but do ask your PCP about it. It's a nerve thing, sometimes they just seem unhappy. The FitBit I just got for Christmas did it to me too. As soon as a I put it on I started getting a tingling and painful numbness (yes, that's an oxymoron but I don't know how else to describe the feeling) in my hand wrist and hand. And I was so looking forward to having a fitness tracker too. Oh well. I think your tingling and numbness will probably go away and then come back and go like this in flares/cycles if it's part of dysautonomia.
  8. Hi all, A while back I posted about a non-invasive neuroplasticity device called HIRREM (can't recall off the top of my head what the acronym stands for) which is meant to balance your autonomic nervous system and brain. If you search HIRREM on PubMed, 7 or 8 articles come up. I've just been made aware of another device called Cereset which uses basically the same technology and is available at special clinics. I am not promoting this as a cure, however, a new study just came out that shows it was helpful in reducing symptoms of PTSD in military personnel and improving sleep. Right now the Cereset clinics are only located on the North American continent, so unfortunately not possible for me to try myself. Otherwise I'd be there in a jiffy! Improved sleep and emotional state sounds like a great thing to me, even if it doesn't eliminate all symptoms. If anyone is interested the Cereset website is https://cereset.com/ and the recent PTSD study is here: https://www.ncbi.nlm.nih.gov/pubmed/30302866 If anyone ever gives it a go I would be very keen to hear from you. Best, Echo
  9. @Peter Charlton Hi Peter, my T-Wave abnormality is that it turns upside down/inverts when I'm standing. It's the right way up when lying down and then turns upside as soon as I stand. My cardiologist says this is a sign of autonomic instability.
  10. @Peter Charlton You can definitely have dysautonomia without blood pressure and heart rate problems. I have non-POTS dysautonomia and I've seen there are other people on here who have the same. Mine was diagnosed by ECG because of T-Wave abnormalities but other than that I'm like you I have a lot of the symptoms minus the heart rate and blood pressure. Do not give up with the medical care. Insist there are problems. I would go to the dysautonomia international site and read up on the symptoms, print out and take to your doctor. POTS is only one type of dysautonomia. Wishing you luck!
  11. Thanks @MomtoGiuliana, I have had it tested a couple of times in the last two years and it always comes back smack bang in the middle of normal range I might try some B2 supplements though. That is also supposed to help with nerve issues...maybe.
  12. @lamp_girl Two years...it was one of my first symptoms. But I can go for a really long time not feeling any of it and then it will flare up again. I haven't tried any supplements because I'm too scared to be honest. So many people seem to be reacting badly to various things on here so I'm cautious... I also get restless legs at night sometimes. It also comes and goes.
  13. Hi @lamp_girl This happens to me. And mostly on the right side. Exactly like you say, face (including teeth! Dentist did x-rays and says my teeth are perfect), hands, legs. Sometimes neck. It seems to flare up when I am sick (like have colds or whatever). I have had nerve conduction tests done and they came back normal. I don't worry about it too much, it seems to come and go and just be one of the various annoying symptoms of dysautonomia. I wonder if inflammation has something to do with it since I get mine when I am sick? Have you had any testing done?
  14. Hey all, it's clear that for many people their autonomic issues started after an illness, usually a viral one. I also think that dysautonomia that starts in pregnancy is not always caused by blood volume/expansion issues but by a reactivation of a virus since the immune system goes down when you're pregnant. (This is so that the woman's body doesn't reject the embryo/fetus.) I just came across this article by chance https://www.ncbi.nlm.nih.gov/pubmed/30281036 . It's titled "Restoring antiviral immunity with adoptive transfer of ex-vivo generated T cells". It's only an abstract but from what I can gather they are working on eliminating viral infections (even dormant ones) not by using anti-viral drugs but by creating specialised anti-viral T-cells and then transferring them into patients. T-cells are specialised blood cells that fight and destroy pathogens. (On a lighter note, if you want to learn about the different types of cells in your bloodstream and what they do I highly recommend watching the anime Cells At Work!) I'm very excited because I feel that my issues started with my immune system becoming compromised during my short-lived pregnancy and I'll be watching this research with interest.
  15. Sorry I don't have any experience or knowledge of this but I just wanted to say I agree with you about the menstrual blood thing. I never thought that related to anything to do with blood volume. Your period is not like a hemorrhage as if someone suddenly opened up a large vein and you were bleeding out. When you have your period that blood doesn't come out of the general circulation, it's the stuff that's been building up in the uterus for a month...
  • Create New...