louloutinks

Hi all I finally had my TTT done on Friday. As soon as I went up my heart raced until it was over and I had a few waves of feeling giddy with fuzzy vision. They inserted the cannula which was fine but after about half a minute she asked if I was ok, which I was but as soon as I had said that, I felt I was starting to faint so I said 'maybe not' and she brought the table up and that was the end of the TTT. I had bloods taken laying and standing afterwards. Would this not give a false reading if the pre syncope was brought on by the cannula? She did say that they had all the info they need and the test was positive - what does that mean? For what? also whilst up on the tilt I was asked to count crack in increments of 7 from 331 at which I failed miserably. I done this later at home and was fine -what is this to test for? I do not get my results till next May

I dont understand - what would be possible causes of this autoantibodies?

Hi I would wait and see what your Original Neuro comes up with - someone that deals with DA. My neuro said that my functions were functional (caused by stress so all in my mind) and then at the last appointment he changed his tune and told me to wait till I get to the autonomic unit.

I also get dizzy in really busy places with lots of people weaving in and out and lots going on. Like NMPotsie I too get it in the shower so have baths instead. Just walking I get giddy.

hi and thanks for your replies. I used to always have a low BP too every time I went to the hospital or to doctors. But since these pots symptoms have kicked in it is all over the place. Why does it jump all over the place the way it does - I have been reading up about the sympathetic nervous system does not turn off when it should when we stand up - so why does it turn off when we sit/lay down! I am glad I am not the only one whos BP is like this (in the nicest possible way of course!). Does any of you go through periods of more stability and would this be classed as a 'crash'? I havent taken any of the BB's yet and have decided against it as if they make my BP fall really low then I will feel more dizzy and I certainly do not want that. I think I should wait until I see the guys in London. You all seem to be taking BB's along with other meds to counteract it in certain ways, so taking this from a doc that doesnt even know about this condition doesnt seem like the best idea!

my highest bp mainly diastolic was 131/124. The other day it was 166/87 and the lowest has been 82/35 (which my doc said was impossible and that I would be dead

Hi again all, I'm wondering if you can have a mixed type pots where you have both swings between high and low BP on standing. For example, this morning upon waking, supine 103/73 hr 69 up 92/77 hr 135 up 2mins 140/76 hr 149 up 3mins 166/87 hr 157 laid down 117/110 hr 103 lay 2 mins 112/93 hr 93 up 89/88 hr 145 I seem to be going through stages of having really high BP upon standing and am going through that stage right now and am feeling at my worse. Then maybe in a couple of weeks I will go into a different stage where my BP will go lower on standing with no high readings at all but still with a very high heart rate. There are times when I just get a small difference in my BP - so BP stays basically the same but heart rate still high. It just all seems so variable but why do I feel worse when I have my high BPs? What would cause these type of changes? I am also concerned about my pulse pressures. At the moment, I feel cold, trembling from inside (almost like I haven't eaten for days - which I have of course), feel like heart is pounding, I have serious trouble to stay upright without feeling like I want to faint - I cannot even shower right now but have to lay down in the bath. I took the dog for a walk the other day and I had to keep crouching down as I felt so dizzy but was dizzy as soon as I stood up again - it was relentless. It seems to correlate with the higher BP's more than at the times it is lower. Also I went to the doctor as I felt so bad and he gave me betablockers - to take as required - he said he does not understand about Pots and said to me to 'take a tablet when I got palpitations, but not to take one if I was driving' and I told him 'I would not feel bad if I were driving as I would be sitting down'! (yes I thinkI gathered he knew nothing!) The thing is, is I am on the cancellation list for autonomic testing right now and I may get a call at any minute to go to London. I am desperate to feel better but if I take these propranolol, will they have an effect on the results - should I just bide my time and wait for the tests and get medication to suit my needs or take these in the mean time....am at a complete loss. Especially as my BP is all over the place....is this normal for pots?

I have been feeling REALLY bad lately. When I take the dog for a walk I constantly have to stop and crouch down to stop myself feeling faint but as soon as I stand up I get the dizzies again. It is even stopping me from taking a shower and now I have to bath instead. My HR is going ridiculously high on standing and I feel just awful. I am waiting for a TTT in London but I decided to go to my doctor today as I cannot bare it any longer and he has given me 10mg of propanolol to take 'as required'. I will be taking it every 10 mins then lol. How do I judge when to take it, as if I took it every time I stand up when my heart races then that would be too much. What do I do and how should I take it....advice needed and thanks in advance.

I dont understand how they classify then as everyones HR rises on standing then drops doesnt it? How come mine goes faster and faster and then stabilises at a high point?

I'm no expert but looking at the numbers, I would say no pots. Correct me if I am wrong people but I thought the heart rate has to rise by 30 minimum but be at the minimum of 120 (anything less than 100 is not classed as tachycardia) so if your low numbers were noted on the TTT, maybe this is why they could not call it POTS because of the lack of tachycardia?? There may be a small drop in HR but then would rise high again and remain that way until you either faint or sit back down. Maybe it isnt POTS but as another poster said, it could be another form of orthostatic intolerance. Mine ranges from 60-70 laying then goes to 135-180 on standing, it may drop very slightly, but then it will just get faster and faster and then remain at the top number until I have to sit or fall down. Mornings are always the highest tachy times when I get silly high HR's.

I get painful tingling in my scalp, trembling and palpitations a few minutes after the injections.. Years ago I also had a severe reaction to the injection. I collapsed and was twitching on the floor of the waiting room whilst being fully aware of everything but having no control - with everyone watching me . I had to leave my car there and a member of staff took me home. What that was about I do not know to this day.

Hi ladies, I have noticed that if I stand from sitting and keep still (as all of us do!) my heart rate climbs to around 130-140 and stays that way, but if I bend over whilst standing my heart rate drops - not to as low as it would if I sat down but it still drops. Any explanations??!!

Hi naomi, yes they tested me for neuropathy - I had a babinski response in my right foot and arreflexia in lower limbs and they thought it was neuropathy but the test was all ok. My legs and hands get very dry - I use medication from the doc but my skin goes severely dry and my hands crack at times - not good. Do you have neuropathy Naomi?

We love our sons whatever though Bren wow very confusing...how do you know if you have vasoconstriction - you can see the pooling so that is vasodilation....right?!

Well with the weather over here Bren - getting the pooling is the only way I can get a healthy colour!! Yes the white patches - like the blood has drained where infact its the true colour of your legs underneath lol. Yes son is struggling at the moment and has a lot of 'professionals' involved right now so a few stressors over that. What is vasoconstriction, hypovolemia, and pooling - are they one and the same? We had a few minutes of heat yesterday and boy I struggled....

I had the test but no neuropathy. Haven't had it in sometime but now have it round my buttock, thigh and hip - but I have got a real painful hip too.....grinding, aching....

Hey Bren how are things your side of the ocean?! I thought it looked rather pretty especially when I get red measle spots with it too No one has ever told me what it is so I thought I would put it up on here and some helpful people would come along. I should have put up a pic of my legs when they are normal as you can really see the difference. Hope you and yours are well, Lou

Hi all just wondered if this is what is called pooling or vaso. Few pics on the link to my pbucket

I have this right now - my bed sheets, clothes, stroking my skin is all very painful but with nothing to see and I have come across something called allodynia. I did have a test for peripheral neuropathy but was told people with EDS get this often but not sure if in pots.

Hi Emma I was there the other day and am waiting for a 4 day in-patient app. I think they are SO busy as it is the only PROPER autonomic testing unit in the UK. I take it you already have had the TTT? When I went the other day, I was kept waiting for over 2 hours as the desk staff did not mark me in so they presumed that I hadnt turned up! I saw one of his associates,who was just on his way to somewhere else, and he had to squeeze me in as I had to get back for my son at school. I had to rush through the hospital with him to another dept and by that time I was all rushed and my mind went blank when he asked me my issues lol! There was SO many things that I forgot to tell him. I would contact them and jolt their minds about the MRI. Was Mathias any good? I have heard the waiting list can be months so you are lucky that your doc has wrote off to them

Hi all Just posted this in another thread...... but last night I thought I'd take my BP whilst standing for a while - normally I just take it after I stand up and then a couple of mins later My heart rate usually just gets faster and faster, but last night I took it every minute. Laying was 106/73 hr 79 stand 100/79 hr 104 1 min 98/77 hr 106 2 min 95/84 hr 108 3 min 67/59 hr 87 - but at this point I had to lay down or I'd fall down! Laying 104/72 hr 64 My BP slowly drops as above but usually as I said, my heart rate just gets faster and faster and always has a huge intitial raise as soon as I stand - whereas last night it was slowing down after a small rise with the BP dropping. Does this mean I am improving?! I have noticed the narrow pulse pressure too Anoj. Last year Ruby I would have a week here and there of really high BP readings but am not on any meds and was keeping a graph too. It was swinging from high to low and the graphs are great to get an instant visual. I am waiting a TTT and wish it would hurry but there is months upon months for the waiting list in the UK.

Hi all Sorry to hijack this thread but last night I thought I'd take my BP whilst standing for a while - normally I just take it after I stand up and then a couple of mins later My heart rate usually just gets faster and faster, but last night I took it every minute. Laying was 106/73 hr 79 stand 100/79 hr 104 1 min 98/77 hr 106 2 min 95/84 hr 108 3 min 67/59 hr 87 - but at this point I had to lay down or I'd fall down! Laying 104/72 hr 64 My BP slowly drops as above but usually as I said, my heart rate just gets faster and faster and always has a huge intitial raise as soon as I stand - whereas last night it was slowing down after a small rise with the BP dropping. Does this mean I am improving?!

Hi all, long time no speak so I hope you are all well?? I have been keeping note of my BP lately and have noticed that my BP specifically diastolic raises on standing but I am still getting HR increases eg lay 100/68 hr 71 stand 105/97 hr 124 lay 98/66 hr 80 stand 88/86 hr 135 I have even had a bp of 159/151, 131/124 and other high readings whereas I am usually on the lower side. Does anyone know why this is? x

I get cherry hemagiomas but I also get petechiae. I am waiting to be seen about this

No worries. Have now sorted out new one and logged in x