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Hmm. I feel a bit odd now. I actually think I tan more easily since developing POTS.

LOL. They're awesome.

I like #2 and 1 the most, in that order.

Wow I would *never* have expected anyone to say they like wearing high heels because it makes them feel better. My balance is shot so I live in comfortable birkenstocks, sneakers, hiking shoes and thongs. I think I may have some inner ear thing going on though.

Hi Blueskies, I too am one of those oddities whose BP increases when I stand. I haven't tried florinef, but when I increased my salt intake my average BP dropped. It's really really annoying trying to explain that concept to a new doctor now, but I reason that increased blood volume prevents heaps and heaps of adrenaline being released to cope with the change in position, and changes it to just heaps ;-p. Have you been on a high salt/water diet for long?

Maybe gradually build up your confidence again by walking around the block where you're nice and close to home, or go to a park when there's no one around and you won't feel like a dill if you have to sit down for a bit and rest? I used to have anxiety about this but only in a social setting. And the more I walked, the better I felt.......

I take a magnesium/calcium chelate about half an hour before bed to help me sleep - for me, if I can get a good night's sleep, all POTS symptoms are better the next day. Have heard as well that it's good for the nervous system and muscle contraction.

Hi Cat lady,

I'm sorry I'm not sure I have any tips beyond what you would know already, but I am in a similar situation!! Gave up work about 12 months ago to focus on improving my health and am about to head back into full time. Luckily, it's a research position which will allow me a certain degree of flexibility in organising my day and time management and communicating with people.

My plan for coping is to take lots of 'walky' and stretch breaks, avoid fluorescent lights where I can, not look at the computer screen the whole time, the usual water and diet thing, moderate exercise etc.

I'm pretty worried about having a relapse and also not being able to cope with the work because of fatigue/brain fog. My boss said otherwise, but I know my work suffered because of this when I first got sick. The other thing is that I don't want people to identify me as being sick or think that I'm being unsocial because I can't go out for drinks and all that. Might just go and have juice or tea when it comes up. I'm pretty nervous about the whole thing (also moving town and back out of parents place) so there's a bit going on. I think the longer I wait though, the more I'll doubt myself when the time comes so just trying to do relaxation exercises to cope with the extra nerves. And I know that I managed to push on at work for 8 (??) months when I was feeling a lot worse, so I think if I'm careful I can do this without going backwards. So.... we'll never know if we don't try hey?

Let us know how you go!!

Yeah, I only just watched it too and I think all of us can relate to the experience of having a crash and suddenly coping with these crazy symptoms, the struggle with doctors, being told you just have anxiety or depression or it's a virus, not knowing whether you should push yourself or rest, trying different medications, trying to mentally cope with that lifestyle change of being really fit and well to literally struggling to walk a couple of hundred metres. I remember saying the same thing as well, that I really wouldn't wish it on my worse enemy, because it really is so debilitating and life changing, but people don't understand how much of a challenge it is because you look well and I know a lot of us hide how we're feeling or make sure we organise our lives so we'll be able to do something. I have absolutely no idea how Brittany managed to have an acting career with dysauto, that's just amazing. How she even remembered the script is incredible, let alone the long hours and being on her feet. Like her brother, I find exercise, healthy diet, minimising processed foods and exposure to chemicals, and mindset to be most helpful coping with POTS. And sleeping properly and avoiding fluoro lights as much as possible helps too. While it's great to have more people speaking out about dysautonomia, I'm sorry it had to be for this reason.

Yup, symptoms can be there with high, good, or low BP! It annoys me too when the doctor is like 'oh your blood pressure is fine, you should be feeling fine' when I feel dizzy and tired and can't think clearly at all. I wish there was a monitor that could easily measure how much blood is actually going to the brain instead of just relying on the arm BP

Maybe your BP was fluctuating more than the monitor could deal with, within its accuracy parameter thingys?? I've had an error message from my heart rate doing that before.

Hmmm that's interesting. With me, there's also a general feeling of worse OI than I usually would have and yes, my stomach doesn't like fish or flaxseed oil at all. Alicia, what about you, any extra symptoms? I haven't had a big serving of oily fish in ages so not really sure how I am when it's not in supplement form..

I know!! Everyone says it's supposed to be really good for circulation, which is why I gave it a go, but it's just not worth the reaction..

Hi Alicia, I'm the same with flaxseed oil - it and fish oil make me feel terrible! I've never had that with magnesium though - but I only take that at night just before bed. Sorry, I'm not sure what it is with FO that makes us react like that....

I don't think so. I had all of the kidney tests done ages ago, but I don't think any tested adrenal function....

Interesting. I'll have to try eating next time it happens. It really only happens if I've been exercising (and then my muscles shake a bit too) or if something has startled me or I've gone into a shopping centre or I've been outside too long when it's really hot. Is this the same with you guys?

Hi everyone,

I just have a quick question - when my legs turn to jelly, does anyone know what is actually going on? I know it happens with excess adrenaline, but is it a build up of lactic acid in the muscles or something to do with balance or something else? I figure if I know what causes this, I'll be better able to deal with it when it happens. Does anyone else have this problem?

Thanks

i know, sinus infections really exacerbate POTS symptoms - i think all that gunk in our head puts pressure on the inner ear and i swear my sinuses didn't get inflamed like this pre-POTS. so you can't see straight?? that's odd. for me, the dizziness is definately worse and my concentration is shot, but my eyes seem to be ok..

I'm sorry being sick *****. I've had a bad cold and inflamed sinuses for the last week as well - was drinking so much water and living on soup because my teeth were too tender to eat anything really chewy or hard. I hope you're feeling better soon xx

Hi Lissy, I took the MOP when I was younger - before dysauto - and had nausea was the main side effect. And to be honest, I'm not sure if that was because I was crapping myself and having a massive panic, or if it was the pill itself. Either way, I spent the day feeling sorry for myself watching telly! Are your symptoms closely related to hormonal changes? That might give you an idea of how you'll feel after taking it.

I hope you have some success with him! Sorry though, haven't heard anything about him..

Off topic, you're the only other Queenslander that I know with POTS/dysauto - that I'm aware of anyway.

Hawthorn gave me palpitations when I tried it....

Hi Lina, I've heard that magnesium helps with restless legs as it relaxes the muscles... I'm not sure if that will interfere with any of your medication though

Haha I thought it was just me!! I *hate* the sound of someone slurping or swallowing or sniffling. So annoying......

Funny you should bring this up - I've been having gochi juice everyday, which is supposed to contain a really strong antioxidant, and have also been told I've had a lot of exposure to poisons/chemicals (by an iridologist, not a blood test). It seems to be helping which is great.

go girl!!