I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Tuesday, 1 June 2010

What a great weekend!

I've made amazing improvements this weekend. I am putting it down to taking LIQUORICE ROOT. I read on the DINET site of a few people who'd found it helped them- it works similarly to florinef without the side effects. The important thing for potsies is to take the type that has the glycyrrhiza stuff in it, NOT the de-glycirrized type. (They sell DGL liquorice root for people who might end up with high blood pressure as it's the ingredient that can raise bp- now for some with POTS this is a GOOD THING!).

I still get the fatigue but since taking it I don't get the WEAKNESS. I started with that symptom only recently- around November last year, and crashed horribly from it. It was only then that I realised I even had tachycardia (because it got worse) and thus chased up my diagnosis of POTS by getting myself referred to a specialist. So, I don't know exactly how long I've had it, but judging by what happened to me at universiry, my guess is since then (9 years). Back then, when it first started, I had the weakness, nausea and panic attacks. It took me years to improve but I got stronger gradually year by year. Then in 2008 I got a mono-type infection in the Summer, followed up by flu and bronchitis over Christmas/January. Strangely enough, I joined a rambling group in March 09 to get my fitness levels back up after the mono-thing, as it did really weaken me, but it wasn't until November the following year that I had the weakness and the noticeable tachycardia. But, I've had POTS symptoms all along since at least 2001 and have probably had tachycardia all along, I just never realised.

Having 'survived' this long unmedicated, I recently decided I would only take pharmaceuticals for the POTS itself if I NEED to. I take them for one of the conditions I have thanks to POTS, overactive bladder, and couldn't do without those meds, so I'm not against meds but only if they are NECESSARY. As I am doing pretty well without them, I don't want to take them, for fear of what would happen if I got worse and was already medicated. So I am leaving those for a last resort!

So, for that reason I decided to try liquorice first as I was having issues with low blood pressure, and always felt worst when it was this way. Within two days of taking it, I was getting numbers in the low 100s over 70s, and my inappropriate sinus tachycardia is MUCH less significant- which in itself has helped immensly. (No more heart rate climbing to 120 just reaching for a glass of water!).

I had one day where I even had a normal standing heart rate (80s!). I got overexcited and did a load of working out. Too much, really- but it was worth it as I enjoyed it so much! I felt terrible the next couple of days though, extremely fatigued and brain foggy* BUT my bp was still good and stable. If it wasn't for the fact that my vital signs were good, I would not have gone out Friday night as I felt really bad... but I figured it was fatigue from over-exerting myself with the work-out on Tuesday, and that since my vitals were okay, getting out and seeing my friends would do me good because I knew if I stayed in just because I felt tired, I'd feel miserable and defeated, which for me felt like the worst of the evils.

I'm still learning how far I can push myself and when not to push so I figured I'd go out and come home early if necessary. The funny thing was though, going out perked me up! My two closest male friends were very considerate in that, as I couldn't stand up chatting with the rest of the group, they'd sit with me and keep me company so I was never left 'alone' or left out. I stood for a brief period socialising until I started feeling hot and sick. We were going on to a 90s bar/disco after that and I wasn't sure how I'd feel but was optimistic I'd be okay. I've always loved dancing and have always found my body to be amazing in its ability to allow me to do that- I even danced at my cousins wedding when I had the mono! (At the time I thought I had a 'virus' as I have been prone to getting random viral things ever since the original one in 01 that I believe gave me POTS!). I remember thinking at the time 'wow I can tell I have a virus, I'm running out of steam already!' but I still managed to dance long and hard. That's why it was awful when I had the pots crash November because I could only dance for a few minutes before I got breathless, tachy and weak; nothing had ever made me feel that way before!

So, Friday night I was hoping that wouldn't happen and thankfully it didn't. So I'm wondering if the weak feeling is the sign of my bp being low. I also got the weak feeling a lot when my hormones were unbalanced due to changing contraception methods- had a rough few months with that til they settled.

Thanks to feeling stronger, I managed to dance for a couple of hours and didn't get home to bed til 3am. Then I went to stay with my boyfriend and I slept barely a wink. I can't imagine why as I was exhausted after my exertions; his curtains don't keep enough light out for me but even despite that I thought I'd sleep, but didn't! So, on Saturday I really cannot believe how far I walked as I felt so beyond tired. But the strange thing is, I do feel better when on the move. So, we did a lovely walk (the new area we are exploring is mostly flat which is fine for me- I think my body is used to having a heart rate of 130-140 when walking around, it's when I climb hills it gets difficult) and it turned out it was around 9 miles! My bf wanetd to do another walk the next day and I, non-commital as I always am (there's no predicting how you feel one day to the next), I said I would see how I felt.

Next day, felt tired, legs felt a bit achy but stronger. No weakness. So we walked for 4 miles, had a rest, then walked all the way back. Another 8 miles clocked up!! That after a night of dancing, a sleepless night, and a 9 mile walk! The second walk even involved a few more hills!

Now that I have stopped, I do feel incredibly tired today. Like 'not with it' type of fatigue. Like as long as I don't have to do anything mentally taxing like buy a parking ticket** or go to a public toilet in an upstairs bar***, I'll be okay. Just sitting, typing, browsing the net, doing what I can to keep occupied and stay awake.

But the fact I managed to be so active, at a time when I wasn't sure I should be doing *anything* has really given me hope and a positive feeling. I still have to 'pace myself' and turn down activities and make sure to schedule in times when I can 'recover' or 'prepare for' things, but I am counting myself very lucky that despite POTS, I'm still standing, yeah yeah yeah! ;-)

*see my following post 'brain fog escapades'.
** you shall see...
*** keeping you in suspense, but all will be revealed...

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