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lauralulu

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  1. This is all so interesting, I only wish I could add something useful! Thanks to Issie and to those who have given input.
  2. Hi! I too used the forum when I was pre-diagnosis and found people to be extremely helpful. I'm in Derbyshire, UK. There's a facebook group called POTSUK started by a girl in Sheffield that's also helpful and friendly too.
  3. It was DEFINITELY the magnesium then, as my systolic wasn't too bad but the diastolic was diabolical! lol. Incidentally, I've started trying motherwort (herbal remedy) as it's reputed to be good for palpitations and tachycardia! I noticed since taking this my tremors have stopped, at least for now- which is pretty amazing to me as the only thing that stopped them before was a beta blocker.
  4. This is reassuring to me too, as my symptoms have gotten markedly worse since having a mono type illness AND flu AND bronchitis all in the same year, within a few months of each other. I was starting to panic somewhat that it was going to get progressively worse and worse, but maybe not, perhaps it's 'just' the viral things that have given me a hard knock and I'll see improvements little by little. Thanks for sharing.
  5. Thanks for the warning issie- I've had to stop taking it as I noticed every time I did, I felt terrible and my DIA bp was terrible. I had heard it can lower bp so I figured (rightly) it was the magnesium causing me to feel so bad, once I stopped, I felt better. I'll try the yoga stretches instead!
  6. Thanks jump, so happy to hear it's been that good for you, that's wonderful.
  7. Thanks for the replies -- I am going to try a magnesium, calcium and vitD combined vitamin and see how I am with that. I agree that the feeling of not being able to breathe enough along with the tremor feeling is the worst! I also feel like my heart is racing when it isn't so perhaps the muscles in my chest are twitching, how odd. I get the tremors in my legs and chest/torso most too.
  8. Thank you for the info and reassurance, I feel much more positive about trying it now!
  9. So I was given my prescription without any inernal info (the leaflet thingy you usually get) so I looked it up online and found some stuff that's scared me half to death! So I guess I must have a drug phobia because this keeps happening! But god, long term use can cause glaucoma and cataracts?!! That is super scary and makes me feel very nervous to even start taking it, in case I become dependent and end up on it for a long time. I'd rather be dizzy, tired and tremulous than lose my sight!!!!! Is this just a case of them having to report the worst case scenarios when it's not generally very likely?
  10. Feels like it could be restless leg but I also get restless arms and torso syndrome with it too!!! And yes, I've also noticed tiredness or stress worsens it. I wonder what causes it... so puzzling. My guess is sympathetic overactivation...
  11. No, I haven't had any sort of investigation for it, I just have my POTS diagnosis. TXPOTS glad you found something that helped with yours, they really are a rotten thing!
  12. I get these troublesome shivery jerks/jumps and trembly spasms that run through my body at times when I am very tired and trying to relax. It feels like although I am exhausted, my body won't relax and if I try to lay or sit still, these jerks run through it- often in my legs and my shoulders/torso (when it's my torso it turns into more of a shudder, when it's legs and arms, they will jump up). I also get like a full body shudder when I'm laying in bed trying to sleep. I hate these! Not only are they irritating they are also accompanied by an unpleasant 'restless' feeling, like I feel as though I NEED to keep moving (like jiggle my legs up and down) even though I'm exhausted and want to rest. Also get a feeling ilike there is excess energy running through my body and although I am breathing just fine, it often feels as though I can't get enough air. It's really weird. Does anyone else get those symptoms? Do you get the strange feeling of not being able to get enough oxygen along with the feeling of overactivity and spasms? Does anyone know what causes this? And does anyone know anything that helps to settle/get rid of it? There are times when I just cannot sleep because of this!
  13. How bizarre and very interesting, sandalwood is my FAVOURITE aromatherapy oil above all- maybe my body was trying to tell me something! Thanks for posting!
  14. Thanks for the positive input from those of you who've found taking CCB a help. I've decided to try it after the bank holiday weekend, as I'm not working much so if I have any 'bad' effects, it won't matter so much or 'spoil' anything.
  15. That's good to know Emma! Yeah, my hr can be high a lot of the time as I also have inappropriate sinus tachycardia. I am currently taking liquorice root in the hopes of boosting my bp and so far it seems to be working reasonably well and I've only been taking it two days. It's meant to work in the same sort of way as florinef. I got my diltiazem from the Dr but haven't taken one yet, but I've got them ready so I can start taking them if I feel my hr is staying problematic, although there have been times since taking the liquorice that it's gone normal, which I'm amazed at. (Like 60 resting and 80 standing!!!! I could have fainted from the shock at that, LOL!). It would be nice if I didn't end up needing it, but it is there if I do. :-)
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