Alison
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Posts posted by Alison
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I raised the head of my head with planks by about 4 inches. After two weeks I was much worse, instead of occasional dizzy spells during the day It felt like life was one long dizzy spell, and I felt like I needed to lie down most of the day - I'm usually up and about, I work and do sport.
Has anyone else experienced this?
Somehow raising the head of the bed doesn't seem to make sense?
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Has anyone else had a bone scan, and if so, how were your bones?
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I'm wearing waist high sports compression tights, i feel so much better since I started wearing them, the brain fog has really decreased, I'm finding exercising easier too
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Im assuming I probably have low blood volume. I'm wondering what the implications of ths are for a whole load of issues:
Bones - does this mean that my blood may not be feeding my bones enough calcium and other nutrients? I'm hoping to have a bone scan - not sure if my GP will agree it s necessary
Thyroxine - I read quite a lot about low thyroid before I was diagnosed as my symptoms seemed similar, my blood levels relating to ths were okay, maybe a bit low, my doctor said they were fine. I read that some people who have slightly low levels really improve if they take thyroxine - maybe a Pots person would? If we haven't got enough blood, maybe the usual blood tests aren't really meaningful?
Iron, vitamin D etc - maybe there are a whole load of things that we'd benefit from taking a lot of?
General nutrition - does the low blood volume mean that our bodies are a bit starved generally?
Being new to the form I don't know if this as been discussed before - I have had a browse in previous topics.
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Did the doctor just measure you BP, or did he measure the heart rate too?
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Sorry to hear you are having a rough time Andy and , I'm so sorry to hear you have been told it is terminal - that must have been a hard thing to hear the doctor say. I hope the catheter works out - getting up ten times in the night must be making you and your wife exhausted.
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I wasn't sure how much to push my GP for a referral to a specialist. I'm feeling a lot better with compression tight, but already am a bit fed up of wearing them! I've also just started a high dose of vitamin d and that seems to have hugely reduced the dizziness. I'm planning to take a break from work, when I do that will give me more time to think about it all. I was wondering if it matters why I have Pots? I've been looking at my elbows tring to figure out if they go out more than other people's - whether I am hyper mobile? Thrre's no sign of it elsewhere in my body except I've noticed at yoga classes that when we squat I find it easy, and hang a lot lower than everyone else - I see most of the people in the class finding it an agonising position. I'm in Hertfordshire, so could see a doctor in London.
lyla you are right, it is hard to accept that I'm not 100% healthy - though I did know it really beforehand anyway - perhaps the doctors had managed to convince me it was all in my head.
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I'm so glad I found this forum. I'm newly diagnosed, it's incredible finding out there are people out there feeling similarly to me. I first went to my GP about five years ago at the age of 39 and said I was feeling lightheaded, it sounded daft! She ran some blood tests and they were all ok so that was that. I went back last year, and said the same story, and also that my memory seemed really bad, I could hardly bear to admit that, I had the usual round of blood tests, and was told all was ok. I was asked if I was anxious person, and I started to wonder myself if it was just health anxiety. I feel worse in the winter, don't know why? come November last year I was feeling was than ever, and having a sort of dizzy feeling in my head about ten times a day. And my lack of memory and concentration were scaring me. I saw a different G.P. who had thankfully recently read an article about Pots. She did a version of the tilt table test and sent me away to read about it on the Internet saying 'I don't think there any specialists'.
I fit the category of tall, skinny and am a runner. I think I'm a runner because of the Pots - all my adult life I have known that I only feel well when I exercise - only now it doesn't seem to be working - the exercise isn't keeping me well.
It's wonderful to have a diagnosis, but I'm finding that when I think about it my eyes well up. I had plans for my future - am I going to be able to them? Am I going to continue to get worse? Cognitively I have been feeling so bad I'm not sure if I'm fit for work. I keep telling myself to get a grip, especially as I can see others are clearly a lot more affected by Pots than me, I have three children and work parttime, Pots has barely affected me up till now, though I think I have always had it - I remember feeling lightheaded after a long walk when I was 21, at the time I thought that perhaps I didn't breathe properly. And now I realise why I have always felt the need to sit down, perhaps it also explains the worsening continence, and those restless legs that I had when I was pregnant. And it explains why I've never really been on top of my household chores, I always felt compelled to sit down after a bit and I truly believed I was lazy.
I have so much that I'd like to discuss, but don't want to do a really long post - I'll save the rest for next time. Just wanted to introduce myself, and say thanks to those who run this forum.
Hello I'm New, Another Potsie From The Uk
in Dysautonomia Discussion
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Thanks Kooky for your hugs and for the name of the specialist. Did the specialist help you at all? I don't really know whether to push for a referral - I'm going to see how I do for a while with lifestyle changes I think. The Pots is not affecting me physically very much - more cognitively, and that is a hard thing to measure - to know whether it is improving or not. Or getting worse.