clairc Posted July 17, 2012 Author Report Share Posted July 17, 2012 Thanks!My blood pressure doesn't always drop. I just did another DIY TTT and my BP actually rose a little.Sitting down (feet up): 108/64 p771 minute: 115/71 p943 minutes: 109/73 p1005 minutes: 113/77 p968 minutes: 107/79 p10810 minutes: 112/80 p107Sitting down (feet up): 122/71 p82Sitting down 2 minutes: 120/65 p74I felt slighly light headed and I found it harder to breathe around the 8 minute mark, when my pulse went up.I also took a photograph of my feet to see if I had any pooling and I was quite surprised! My feet went purple after I'd been standing for 10 minutes. I posted a photograph here:http://s1087.photobu...etest170712.jpgThey never checked for pooling when I had my hospital TTT. That reminds me, I phoned to request the rest results and they haven't got back to me about that yet...Clair Quote Link to comment Share on other sites More sharing options...
rach73 Posted July 18, 2012 Report Share Posted July 18, 2012 Hi Clair,yep thats blood pooling you can see my gross feet here http://themyastheniakid.blogspot.co.uk/2011/05/blood-pooling.html it aint pretty! I really hate my feet! lol!I really laughed when I read you had a table too! OMG we are peas in a pod! Keep a diary like you are doing noting your symptoms. My blood pressure rises initially on standing and my pulse goes mental then my BP drops a little but pulse still stays high. But I am also at the point where even rolling over in bed elevates my pulse, even turning my head can do it so I feel horribly potsy all day everyday.Some people do find they have POTS attacks and arent potsy all the time maybe you fit into that category? I dont know to be honest my head is all over the place today! so shouldnt have even started this post!Rach x Quote Link to comment Share on other sites More sharing options...
clairc Posted July 18, 2012 Author Report Share Posted July 18, 2012 My symptoms are always worse in the morning, always have been ever since I was a teenager. When I was 15 I had such battles with my parents. I would be too ill to go to school in the morning but feel fine in the evening and want to go out and see my friends, but my mum wouldn't let me, but if I had been to school all day I would be so exhausted I wouldn't be able to go out in the evening, so I hardly ever went out at all! Even now I am usually much better in the evenings, whcih is confusing when I think I'm getting better and the next morning I get up and collapse again.My hospital TTT was done at 11.30am, which is around the time I start to feel better so they didn't catch my symptoms at their worst. This morning I did another DIY TTT at 7am and got some pretty interesting readings.Laying in bed: 112/60 p721min: 88/56 p1213 mins: 98/66 p1055 mins: 90/72 p1158 mins: 95/78 p11810 mins: 97/70 p116Laying down again: 113/64 p77Something weird is definitely happening when I stand up. My blood pressure did drop a bit, but not quite enough to qualify as orthostatic hypotension, my pulse increased by 49 bpm and it remained over 40bpm higher than my resting pulse for the whole 10 minutes. My feet and legs also went purple again, but everything went back to normal when I laid back down in bed. Maybe I should just stay in bed? LOL!I guess it's all good evidence to take to see the cardiologist, I'm just worried they are going to think I'm an OCD hypochondriac if I go in with a huge file of blood pressure charts and photographs of my feet! LOL!You look after yourself.Clair Quote Link to comment Share on other sites More sharing options...
rach73 Posted July 18, 2012 Report Share Posted July 18, 2012 Hi Clair,Im still out of it! I would keep a log as you are doing but when you go to the appointment just take the last five days worth of charts plus any which show really massive HR increases (but a max of 3). You dont want to get completely bogged down in your tables and not be able to discuss everything you want. Provide photocopies of the charts for the dr to keep that way he / she can look at them properly ion their own time.My POTS consultant loves it when I provide copies of info for them even basic things like my most up to date prescription list - Im lucky my drs surgery has the facility to order on line so I can print off an up to date list.Dont worry about being seen as a hyperchondriac as most Drs who have knowledge about POTS know that most of us have been written off by drs saying its anxiety or all in our heads long before we get to them. I have lost count of how many consultants, registrars, jnr drs, gps I have seen who were out of their depth and had no clue what was wrong and were comfortable to tell me it was all in my head - just because they lacked the knowledge!! If I hadn't found DINET I still would be without a diagnosis and I still would have never heard about EDS.It was only when I saw the symptoms list and read the posts o the forum I knew what was wrong with me. It took a year for me to convince the drs to do the TTT.So dont give up keep doing what you are doing and you will get to the bottom of this!Rach x Quote Link to comment Share on other sites More sharing options...
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