louloutinks

Hi Tia I know how miserable hives can make you feel. I went to Dubai and ended up in a huge rash from head to toe for the whole 2 weeks. Kept seeing the hotel medics and they just sold me cream after cream which made no odds at all. I caanot sit in the sun much at all anymore since then as I come up in the rashes and they spread - doc said I must be allergic to the sun. Could it be the anti b's you are taking? Have you any antihists to take?

Ewwwww prunes lol!

Hi Diane, I think after todays episode I should really go to see the gastro. Some nuts that I ate nearly a week and half (or more) ago have just appeared and it was not a flusher lol and very very painful. 7 attempts at the bucket later!!! Too much info but it may be of relevance? Julie, you mentioned nausea, and the past few days after eating I have felt rather queezie and have had a watery mouth like just before you vomit. Saying that, I have found that I am also getting nauseous in the evening time for some reason. I have also been getting quite bad vertigo to but that is separate from the nausea. Thank you all for being so accepting of me talking about this and not judging me on the graphic detail. Do you think I should mention all this to the GE? The GE I will be seeing is a specialist at the London Hospital that I was diagnosed at so I should think they would be thorough. Thanks again

Hi Diane, well this morning I received a referral letter to a gastro enterologist!! I didn't mention too much about my bowels at the app when I was dx'd with eds/pots. I said I only get pain before I need to go/constipation and bloating only after meals. I didn't tell them the nitty gritty I have here but they are sending me to one anyway. Do you think I should accept it? I just feel that there must be more needy people out there than me - people who get more than constipation and pain! And Todd, thanks for that - thats how I seem to be. Up and down - one minute BP levels even though it is still low, daily headaches ease off, bowels change etc then the symptoms all come back with a bang. I could wake up feeling fine - then an hour or 2 days later I will have all the bad stuff back. What causes this irregularity of the brain functioning and then not functioning? Thats the part that I really do not understand about it all.

Hi Nicole not sure if it is the same thing but when I close my eyes I get illuminous like sparks -almost electric blue and silver, that flash in front of my eyes. I have only had this since I have had POTS and when I get flare ups. I have found that my systolic reading has usually taken a huge dip and HR tachy so maybe thats why the sparks - not enough blood to my eyes? Hope you feel better soon x

Hi everyone thanks for the replies. Very sorry to have to talk about such a personal subject but was hoping that at least on here some of you guys would know if there was a link between this and pots. I am not on any medication at all - I have painkillers - naproxen - but do not take them as they do not work. I have just upped my salt/water intake but had to stop due to hands swelling up. Another embarrassing moment to follow....it is not necessarily rock solid, it is the size of it - I should be a rhino lol - that is where the issue seems to be. It seems like I am not digesting properly. I do drink plenty of fluids daily - always have done. Just cannot understand it. Still eating fruit and veg the same as normal. So is it to do with pots do you think as I was told it is becasue the brain is not sending correct messages to parts of body so wondered if stomach is included in it?

Hi Firewatcher thanks for your reply. I haven't had this all life but it comes and goes - more comes than goes though! I will have weeks of this then I will be ok for a couple then back to the bad stuff again. I have kept an eye on what I eat and there is no change in amount or type so could not understand why the changes....but now I knowI have pots I wondered if it could be linked. I get spates of being really dizzy, tachy really high, stomach issues, neuralgia, pains etc then I get good times - well good for me now so not sure if that is all linked. If autonomic dysfuntion is where the brain does not give the right signals to body parts, I just dont understand the fluctuations!

Hi all Have only been dx'd with pots a couple of weeks but have had symptoms for a long time. The question I have to ask is about changes in bowel habits....my diet has not changed at all but my bowel habits have. I am really embarrassed to ask this on here but here goes..... my poops are so heavy and large and guaranteed they block the toilet every time - so much so that I have to pour a huge bucket of water down to unblock it. I do not eat a great deal - just small meals and cannot understand why this is happening. I also get terrible pains just before I need to go that comes on suddenly. I have terrible pains whilst going too as you could imagine. I have also had to physically remove them as I just cannot pass them due to the size. I know it is really gross to speak about but I haven't had the guts to go to my doctor. Is this to do with the autonomic dysfunction??

Well tonight I started to get a new type of dizziness - obviously vertigo. I was sitting down watching TV and everything started to wobble when I moved my head. Started making me feel real nauseous. It's like being spun around, stopping then things start wobbling. I still have it hours later. If I move my head it feels like I have to wait for my eyes to catch up and it doesn't feel too good. I hope I don't keep getting this vertigo and nausea on top of the usual dizziness. The usual dizziness upon standing for me is kind of like a white out - like my vision is engulfed by white pixels from the outside inwards until all I see is white then I have to hold onto something or sit down. I have stopped taking salt after 15 days as my hands were swelling up, so not sure if this is the cause of the vertigo

Hi and welcome. I get the opposite of losing weight then it goes back on then losing it etc etc for no reason - no change in diet. It drives me nuts and I have to keep all sizes of clothes handy! I too hide from the phone - just do not want to speak and I say I have been busy. My house looks tidy on the surface most days but I just chuck everyhitng in cupboards etc so when you open thm they are in such a state lol Heck who cares!! Washing up gets left for days until I need somehting or I feel better and my fingers are not working today buy the looks of my spelling but I'm sure you dont mind lol!

Hi GG, Mine is like that too but with serious BP drops. Take it straight after and get a high reading etc etc I walk up one set of stairs and sometimes it makes me go to pieces - another day or even the next hour I will be fine doing it. Really wierd. The longer I am having this pots the more I am getting used to the sensations despite feeling real bad IYSWIM. I actually had my monitor checked as I thought that it sure must be faulty - but it was ok and it is my own body playing up! I will keep an eye on this thread as I would like some answers too.

Hi Naomi It was rather annoying but at least the time before with the rapid large rise was on my notes. I have taken the monitor back to the pharmacy to have it checked - all was ok with it - it is just me! I know some days are better than others for me,but even when I feel ok, my BP can be real low. I have so much to learn about this POTS. I also scored 19/30 for autonomic dysfunction but am not sure why I wasnt given a tilt test - so not sure if this is because it is a relatively low score. I just don't understand! My sys reading goes up and the dias goes down when I stand .... or they remain around the same or reverse -I just seem to be all over the place!

Hi I was just wondering if POTS can be a cause of concave upwards ST elevations on an ekg. I think I have had POTS for around 3 years now. I was dx'd on the 8th feb this year with POTS and eds. Around new year 2009/2010 I was taken to hospital and wsa told that I had had heart attack and was drawn a picture of how a heart attack happens etc etc. Then a doc came along and said I hadn't despite these elevations and that there was not a certain chemical in my blood. Then over the next 3/4 week period, I was given more scans and was told that there were changes on the EKGs, that I had had an MI etc etc. I then had holter monitor which was ok apart from a few blips and was once again told that I was fine. So now I know that I have this POTS thing, I am wondering if it could be to do with that? Thanks, Tinks

Hi KC Oh yes am very relieved to have a dx for all the wierd and wonderful symptoms I have been getting over the past few years. Some were so odd that I felt I did not want to bother the doc about them. Even when I did report my tachy on standing to the local rheumy, all she did was take my heart rate sitting down and said that I was fine! I have checked the BP again when they have been real low readings and they come out round about the same. This is what I do not understand is why I never seem to get the same readings either - is this a POTS thing or is this usual? However last week I did visit my doc (after dx) about my neck pain and headaches and she had to google dysautonomia. She also said this had noting to do with the daily headaches or the painful tingling feelings I have on my skin. But this is not what I was told and not what I have read! Ah to find a doc that knows these things! I was thinking of stopping the salt because of my hands but not sure if it is a good idea as I was told to take it! Tinks

Hi I have recently been diagnosed with ehlers danlos and POTS. Now when I was at the hospital, my HR rose by only 27 and my BP dropped slightly on the top number. I have had various readings from monitor at home, in which my HR can rise dramatically sometimes by 60/70bpm on standing. I have also noted that my BP can either go low to 87/30 or high to 150/92 or it can remain approx low normal. Are these up and down readings usual for POTS? I am new to all this and am rather confused. I have always had a low BP. But some of the readings are really worrisome - like 35/30 was my lowest and that did not seem possible so I took the monitor back and had it checked! I have rather odd readings like 67/60, 102/35 and then an odd 'normal' one thrown in around 120/80. It seems to me that when I can really feel my heart pounding when I stand, the top number of my BP is low - is this normal too? I didn't really have much of an explanation of POTS at the hospital hence I am sure I will posting quite a lot on this forum!! Since upping my salt/water I am waking up with really tight puffy hands and am not sure if this is ok either. Many thanks in advance, Tinks