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Echo

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About Echo

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    Female
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    Southern Hemisphere ;)

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  1. Echo

    Testosterone - for the ladies?

    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...
  2. @StayAtHomeMom I would say about 2 litres. Yep, I know everyone is different I also have the feeling that salt and water are kind of a band aid and it seems like it's not necessarily one that I need.
  3. Hi all, I'm not sure how many people there in this community that have non-POTS dysautonomia but I thought I'd share something I have found useful lately. When I was first diagnosed I was told to load up on salt and water, the same as if I had POTS. I did this for about a year a half (more of the water, was not consistent with the salt). I did see improvement but I don't know if that was the salt and water or just time. Anyway, I have a pretty regular water schedule and make sure to have a big drink every one - two hours. Then a couple of weeks ago I was at work and forgot my water bottle so I had to visit the staff kitchen every time I needed a drink and since that wasn't practical I ended up drinking about half the water I usually would. And I didn't feel sick! So over the next week I experimented with halving my regular water intake and I was surprised that since I have done that I find I have more energy and less brain fog. I've done this for two+ weeks now and I still feel better than when I drink a lot. I know it's crazy, and I'm not saying it will work for everyone with non-POTS dysautonomia but it also makes sense. When I was drinking all that water it was going right through me and I'd be in the toilet almost every hour. I read up on it and apparently too much water can be just as bad as not enough. It means your kidneys are constantly working (that's why I think I have a bit more energy now) and you're flushing away electrolytes which you constantly have to be replacing. I guess I'm retaining more electrolytes now that I'm not drinking so much and that is probably helping my body. So not a cure all by any means but I have noticed enough improvement to make a post
  4. Hi @Pippie, I know exactly the feeling you're describing and I'm as frustrated as you to not have an answer for it. I too have experienced the feeling faint, shaky and a hot flush crawling up through my body that is relieved by passing gas or having a bm. I had this a long time ago as well, before I was diagnosed. I Googled it then and there are many people out there, not just in the dysautonomia community, who feel this but they just get told it's a panic attack. I was very sure that something in my digestive tract was being "triggered" by the gas or the bm and that it was setting off the uncomfortable feelings. I'm not so sure now. Because if that was true then any gas or bm passing through would trigger it but for me I can go for eons with bms and gas not doing anything to me and then one day it comes back and then goes away again. What I mean is that if it there was some structural/physical abnormality like a damaged or extra-sensitive nerve, it would be getting hit every, or almost every, time. I think this because I've had bms of every size and texture you can think of but there isn't one in particular that triggers this feeling. (I used to think that large bms would do this for sure, but actually they didn't.) I think now that it's not a bm or gas bubble that causes the feeling but that the feeling is triggered by the nervous system and just happens to end with a bm or gas release if that makes sense? I'm sorry I don't have any answers for you and I'd like some myself!
  5. Hi all, I was doing some reading and researching into the blood-brain barrier and it turns out there are two areas of the brain that are not protected by the blood-brain barrier. One of them is an area that produces spinal fluid and the other is a collection of areas called the "circumventricular organs". When you do a little more research into these areas it turns out most of them are areas that act on cardiac, blood and fluid regulation. E.g.: Area postrema Vascular organ of the lamina terminalis Subfornical organ (SFO) Subcommissural organ Full info: https://en.wikipedia.org/wiki/Circumventricular_organs So since these parts of the brain are not protected by the blood-brain barrier, I wonder whether this has any links to so many people coming down with POTS/dysautonomia after an illness or infection? I don't know whether any of this has any relevance but I thought it was a pretty big coincidence. Let me know what you think. Best, Echo
  6. Echo

    How to get tested for Dysautonomia/POTS?

    Hi @WarpedTrekker, where I live I think only one hospital has the equipment for a TTT and I was told very frankly by one cardiologist I would not be getting referred for it because it was for extreme cases only. I went to another cardiologist and he had me do a full ECG (laying, standing, running) and what happened was that when I stood up from the laying down portion of the test, the T-waves turned upside down. It is normal for a couple of the T-waves to turn upside down upon standing, however mine was "widespread". Almost all the leads turned upside down. He actually had a puzzled look at the monitor, said "Ummm...I'll be back shortly." and then came back and said that he did some researching and apparently this is associated with autonomic dysfunction. My heart rate didn't go up by 30 (I think it was like 29 or 27), so I was diagnosed with a generic, non-POTS dysautonomia.
  7. Hi all, just came across this article about probiotics being related to brain fog: https://neurosciencenews.com/probiotics-brain-fog-bloating-9659/ Apparently you can have too much of a good thing and for some people probiotic bacteria in the small intestine can cause too much lactic acid which contributes to brain fog.
  8. Hi @banana I know it's a few years since you posted...but on the off-chance that you're still around I wanted to tell you that the lens material could be the problem. Some optometrists, especially the chain stores, will try to upsell you the expensive "thinner" lenses. These are usually made of polycarb. This is usually material 1.59 or 1.6. Their only advantage is that they are thinner and more shatter-proof than standard 1.5 plastic lenses. The downside is they have the worst vision quality out of all lens materials. Two independent optometrists have now told me that they steer clear of polycarb as it causes issues for lots of people, especially people who are quite sensitive. If I were you, I would go back to where you got the glasses from and ask what the lens material is. Ask for the actual number. If it's 1.59 or 1.6 it is polycarb. I had terrible headaches with polycarb glasses which the chain store glasses shop basically didn't want to acknowledge. They kept saying it wasn't possible because I had the most expensive, newest technology lenses and so therefore I "didn't give it enough time" but I am what is casually known as a "polycarb non-adapt". No amount of time was going to help me with polycarb lenses, you might be the same. 1.5 plastic lenses are the least expensive and also provide the best vision quality out of all lenses except actual, real glass lenses.
  9. Echo

    ☺️Finally got a good doctor

    Thanks @zerohours000 ...what is PA? 🤔
  10. Echo

    ☺️Finally got a good doctor

    Hi @Pistol so does that mean if the B12 test comes back normal then you don't have issues with absorption? I've had mine tested several times but it always comes back normal, right in the middle of normal range. Or can you have a normal blood test but still be deficient?
  11. Hi @samuel0404 I'm sorry to hear about your reaction to this thing. I haven't used it myself but read about it briefly about a year ago. Can you please explain how it works/what you did in the sessions? The best I can tell you is that I had inner ear testing done last year and this test to which I was supposed to have a "mild" reaction completely screwed me over but I got back to my normal after about a month. Hopefully you will get back to your baseline as well with time.
  12. Echo

    New neuroscience

    Thanks @Gerbera! I think dancing is just good for the soul in any case. Do you ever get the shakes after one of your dancing sessions?
  13. Echo

    New neuroscience

    Hi @KiminOrlando I mean an optometrist. Opthamologists don't provide vision therapy as far as I'm aware. I said it should be a licensed optometrist because I have seen people offer vision therapy who do not have training in optometry and I'm sure what they're offering is not the same thing.
  14. Echo

    New neuroscience

    @zerohours000 Take it as a good sign that you no longer need to hydrate or compression stockings etc. Two separate cardiologists told me that basically everything is up in the air and they have seen people spontaneously recover or get much, much better with time and without doing anything really. I don't believe that everyone who gets dysautonomia will have it for life. I think it's different for each individual and depends on so many factors. I would love to hear your experience with HIRREM if you ever give it a go because I don't live in the US/Canada region of the world so I doubt I would see it any time soon. If you ever decide to look into vision therapy make sure you go for a neuro-optometrist/behavioural optometrist. They should be a properly trained and registered optometrist who specialises in vision therapy. It didn't necessarily help dysautonomia but I feel like my eyes get less tired now and I learned what kind of lenses I should be asking for when buying glasses which is a big help. (High index thin lenses are actually the crappiest when it comes to vision quality. Who knew.)
  15. Echo

    New neuroscience

    Hi @Gerbera do you mind explaining what you mean by aerobic dance? Is it like a specific class you take or a specific style of dance? Hi @zerohours000 To be honest my symptoms seem like POTS dysautonomia and the things that go with it minus the tachycardia. Though I'm sure I had transient POTS when it first started. (Heart rate went up by 29 bpm at cardiologist's office. Not 30 go figure.) I apologise in advance but I would prefer to not go into detail because I don't really like talking about it and prefer to focus on healthy times. My diagnosis was not from a TTT but from an ECG. I apparently have "widespread T-wave inversion" upon standing which my cardiologist says is a sign of autonomic imbalance. For a long time I thought I had falling blood pressure when standing but after several measurements at the doctor's office on different occasions when I felt particularly "dizzy" it seems that that's not the case. It always comes back normal. (We take measurements lying down and then again after standing for a while.) Same as when I felt like I had sinus inflammation/congestion...went to the ENT, had a CT scan of sinuses and it came back crystal clear. I have also done vision therapy and the wonderful behavioural optometrist who I did that with said he could tell there was some imbalance in the autonomic nervous system from the way my pupils were dilating during different tasks. (Pupil dilation is controlled by the autonomic nervous system which I didn't know until then!)
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