Hey so I've done the poor mans pots tests a few times and took a few general readings of my blood pressure an pulse. Sitting up my blood pressure is about 110, 70 with pulse 75. Lying down on a good day it's 118, 80, 65 but on a bad day which is often it's the same as sitting. Standing depends every time a couple of times my pulse went to 130 but others it stayed the same and once my blood pressure dropped to 90 60 and I felt like i was going to black out( I know this isn't that low so I don't know why I felt like that) but I stayed standing and it went back up again after squeezing my leg muscles. When I was really relaxed and did the test my systolic did drop by about 20 but another 2 mins later by heart started thumping and it went back up. One of my big problems is i wake up in the night to go the loo and my heart starts thumping althought without an increase in speed and stops me getting to back to sleep and leaves me chronically sleep deprived and more dizzy!
So I haven't really reached any firm conclusions it certainly isn't obvious I have postural hypotension. Although I do feel massively better when lying down and usually have to lie down at least every hour during the day and the dizzyness when sitting or standing is by far the biggest reason I very rarely leave the house. Today I was very dizzy I really wanted to watch tennis but was too dizzy to sit up and concentrate on the screen. When I lay down I felt better but still like I needed to lie down even though i was. I just felt like that there was no blood in my brain. However my bp was 110 70 sitting up so no obvious correlation. Finally i decided to eat loads to see if it helped so i ate aload of pasta(gluten free corn pasta which has a very high hypoglycemic index with very salty bacon and loads of salt and suddenly I felt sooo much better! I could sit up and focus and my vision wasn't blurry and my bp went up to 120 75 which I thought was interesting but mostly the correlation of how dizzy and brain fogged and feeling of no blood in my brain has a pretty poor correlation with BP. I've tested blood sugar and I don't go that low, never below 4 although i do seem to be very sensitive to it.
Anyway sorry that's a bit of a mess of writing, any ideas what i should do next or if theres anything which would help me feel better sitting up! Not sure what to say to my GP I think it's unlikely he would give me any drugs without any solid evidence and he doesn't seem to like reffering me to the hospital. I'm going to try the compressions socks.
Also weirdly I had dizzyness and brain fog sitting up for most of my life. I got U's in all my mock exams over my whole school time and spent every day staring into space because I couldn't concentrate on the teacher and had the classic no blood in brain feeling. But when it came to revision I was ok as I got 12 hours sleep a night and lay down every 20mins and did the work with my feet up. I passed the exams which were all an hour long except a few 3 hour ones which i failed. I wasn't able to do any sport because of fatigue and dizzyness upon extertion but I could walk. I could walk forever I walked 190miles coast to coast and I've understood how. I was pretty brain dead while I was walking but i still did it. Now i struggle to walk 25m. I just wondered if that could be due to OI because walking pumps blood back up increasing BP. I certainly have PEM now and i thought i had it then but it's hard to mix that with walking 190miles even if if I've got stupidly big leg muscles and had been walking miles since being 5. Anyway just thinking outloud.
