louloutinks

I had quite a good day today thank goodness. Couldn't go in the swimming pool with my son as I had a headache but hey he still had fun. However, I noticed a few black mole looking things on my butt today. A while ago I noticed that I had some come up under my breasts. I was only looking as I have been really itching lately and have been coming up in huge bruises in the places that are itchy and so I was having a look. These 'moles' were not there a few weeks ago. When I was young I only had one mole and now I seem to have acquired lots of them along with lovely brown freckly things too! Any ideas?? Not sure if the itching and bruising is down to my kidney function?

I thought it sounds like a murmur too. About a year ago,I had a 24hr holter monitor and they said it was okay - few PVC's and pacs but that it was normal. No brady or brachy either. Max HR 149 minimum 55. They did not ask me to keep an event log or even ask what I was doing (most of the day I was holed up in bed) just popping down for drinks and some food later on in the day. They didn't even mention my BP rising from 74 to 118 in the letter but just wrote BP ok on the day. He did tell me to drink more water - this was before my dx. I hope you get it sorted Potsyturvy!

Compared to Allene and misstraci I have had a pretty un pre-syncope day except for the morning!! Mine always is real bad in the morning then just a few times during the day usually. Sometimes I can get it all day but that is when I am only real bad. Agree with how we deal with this thing Traci - we must be pretty sturdy to get through it sometimes! My BP and GR are sitting nicely right now - 104/74 HR64. Am sitting up in bed and it has just turned midnight. Cannot lay down right now as when I do I am in pain through my TOS in my neck but hey What is catecholamine test potsyturvy? (like the name!)What relation does it have to pots (if any?) I have watery blood too and I bruise real easy, if I have an itch, boy I am left with scratch mark bruises. Be great if you could get the job, keep you mind and body active, so good luck with that! Well I finally managed to sort out the transfer of the MRI scan and report and it is going up to London ready for Wednesday. I am due to see a rheumy - can someone enlighten me what they deal with as the first time I saw one I just told them about my joint problems. Thing is,I am a bit literal with docs....dermatologist - skin, orthopaedics - injury, rheumy - joint and muscles, nephrologist - kidneys etc. But my local doc questioned me why I did not tell the first rheumy about all my rashes - I said 'because he wasnt a dermy' (d'oh). Would they know about pots, TOS, kidney function issues, rashes...not sure why I am seeing a rheumy to be honest Hope you all have a good day x

Hi Rockies girl. Strange how the days can be mixed - good and bad! Just wondered if the salt helps you and what it does to make you feel better. All it seemed to do to me was make my hands swell in the mornings!I had to mix mine with drink - dont think I could have eaten salt neat I have been really silly today and have not eaten a thing (wasn't good earlier, went out to sons summer scheme party, home and had headache so didn't want food) now it is 7.30pm, and I HAVE to eat as my eyes feel wobbly and weird and I am shaky!!

Just thought it would be a nice idea to have a daily update thread on how we are all doing - good and bad, meds, appointments etc Today I am real tired (exhausted infact) with headache and high BP (128/110). I have an appointment next wedsnesday at UCLH in London and have had to call the local hospital to send over the MRI and full report to the London Hospital (as they are taking so long!!) Want to discuss meds in London for my pots as salt and water is not helping. My BP is all over the place - high and low and want it sorted. Also need to go over the MRIs for thoracic outlet syndrome. Yesterday was a really good day for me except for the AM. Had energy and felt quite good. How are you all today x

do not drive after the drops - my eyes felt quite uncomfortable and the light was painful. Did not like it very much. My mum had it done and she wasnt too bad though...

Hi sophia, with the polar, its the watch that beeps when you programme your low/high HR but you can turn that off

Hi Ginger...it certainly has changed a few things here in that respect! I know some people with pots do get rid of it i.e teenagers etc and also if the cause is dealt with then the pots should go (not gospel but have read this all somewhere) so true or not I am not sure???

Hi Cat lady - sorry to make you remember how crappy you feel I was just thinking yesterday whilst feeling crappy, how I manage sometimes, as my mum rang the other day and said she came over all dizzy, trembly, heart rate real high, red faced, dilated pupils, and she had to sit down on her path in her garden - she said she felt awful for a while after too and not 'quite right' so she had to go indoors and relax for the rest of the day. It sounded so similar to POTS symptoms and she too has EDS, so I hope it isn't. But it got me a thinking that I am like this ,most of the time on a daily basis and wondered if others felt the same or I just couldn't be that bad if I can manage to do what I do sometimes, if you see what I mean. How do we manage to get through it really, with all that is going on inside us all??

GInger, I do think things are getting worse this end (tachy and BP wise). I woke up a tad late today, went downstairs for a drink, came back upstairs and HAD to sit down for a bit. I have Ehlers danlos as the cause for my POTS and I read somewhere , that because it is not idiopathic it will never go, is this true? Day off for me today and have to take the cat to the vets - the hoovering needs doing amongst other things but heck tomorrow is another day - I am taking it easy! I remember it got to a point with me a couple of years or so ago, that when my child came home from school, I had to suggest games like boardgames, cards, puzzles - things I could sit down to do with him - that's when I knew something was definitely wrong and went to the doctors. Gym, volleyball and bike riding are such a thing of the past, I am now usually a spectator of my child running around whereas it was always me joining in! Sad really

Me too Volley - thing is on the good days I do way to much and that doesn't help matters none. I went though a spate, where all I coud do was to wake up, get my son on the bus for school and then I would sleep...for hours! Then I would once again feel awful later and want to go to bed by 8/9pm. I do really struggle with sleep patterns with my son as he has autism and most nights he doesn't sleep till midnight and some nights as late as 3am. That has really taken it's toll on me too. Tomorrow night is his melatonin night so maybe I may get a good sleep then - just hope I feel ok to sleep!

Hi Autumn - sorry I missed your post earlier as I was replying to Naomi! What does your Mum say about your POTS - do your family understand or not take any notice because you DO get on with things. Even when I am with my family, and I get tachy and dizzy, I tend not to say anything and do not understand why I don't to be honest - think we are so used to it that we just accept as part of our everyday routine. When I feel bad, I do not speak to my family on the phone as I am feeling too bad so they don't know about it as I dont really speak about it. Once my mum seen me really bad was when she turned up and it was a really bad day for me. My HR was really bad and she was very surprised and worried. When you say vision losses can you explain what you get please? I have noticed that I get black spots in vision (not floaters) that I thought was start of a migraine (but I usually get bright colours with that),can be very light sensitive and can find it hard to read as the lines seem to jump all over the place or things get a bit blurry. I didn't know you could get vision problems with this and put it down to thoracic outlet!

Hi Naomi, sorry to hear you feel the same -mornings are usually always the worst! Back home now with son and his friend on board - they are playing together so I can chillax a bit until meal time. I am on no meds just told me to drink more and have more salt, but if there was no improvement to go back for meds. Thing is I have noticed, is that when I first noticed my HR upped on standing it was going up by 30/35 but as time has gone on it is getting faster and faster, now raising more than 50/70bpm extra usually. Am back to see a specialist soon (not my EDS one) and will discuss it with them then. I am going to request a TTT as I was only dx'd by taking my HR on occasions and by the symptoms (even though the DX was by a Professor, I still want REAL confirmation with TTT) but now I feel it is progressing, I want to know what type of POTS this actually is as my HR and BP are really ALL over the place.Am worried about salt intake too as since I was put on it I have had blood tests and my kidney function is not the best either. Do you have meds Naomi?? What meds do you get for this thing and the side effects if known - I did read that because of the autodys the body reacts bad and that they give more meds to counteract that too. Keep on ploughing on Naomi!!!

This morning the alarm went off and as usual, as I went to turn it off, my heart started to get faster basically because I had to turn over in bed to reach it. We were late as I hadn't heard the alarm again so I done a silly thing and jumped out of bed to wake my son. Dizziness and tachy hit me so lent on the bed till it passed. Had to rush around and was breathless and getting dizzy but had to get my son to the paediatrician real soon. Went downstairs and made his breakfast. Came up the stairs and it was a struggle. Had a shower which gave me a headache. Put on some make up feeling trembly. HR by this time was over 150 even though I was sitting.Got breathless walking up the hill to my car and legs started to burn and ache. Sat in the car and breathe a sigh of relief. Got to the Childrens Centre and whilst in the lift, I had to sit down or fall down. Came home after dropping my son off as I need to eat and now I am laying here on my bed with headache and feeling worn out already but I have to go to work soon (luckily only for a couple of hours) and hope that I am not the only one in today as it killed me last week being by myself. I really feel like I just need to lay here for the next couple of hours but I can't - just hope they let me sit down at work today! The question I am asking, or something I have come to notice, despite feeling like this all the time, I still get on with it all and wondered if you are all the same. Just working through the day and the dizziness, tachy, adrenaline surges, pains, feeling cold, headaches, shaking etc - looking nigh on as nothing is wrong to outsiders?? (Don't get me wrong, as there are days that I feel I just cannot cope with anything but I must as I am a Mum and my child doesn't look after himself)

I dont tense my chest but I tense up my stomach every time I stand for some reason?

For the past two nights I have been woken up by my arms tremoring. It has been a bit worrying to be honest, as I have never had this before in my sleep. Both arms are vibrating quite badly to wake me up and it is a bit of a blur as I am woken from a deep sleep. My right arm today feels rather tense like I have overdone it with exercise - which I haven't of course. I do have thoracic outlet syndrome but only in my left arm. Could this be a cause of it? I know I have had tremors in the day but now it has started at night too (maybe they were there all along but now is waking me up - I just do not know). Edit to add,, but not sure if this is relevant but I am also getting terrible flank pain at night as well. No infection but stage 2 CKD.

Hey I just found this link and it says it is physically impossible to be allergic to epi and some other stuff http://www.dentalfearcentral.org/fears/allergy-novacaine/ I don't see it as anxiety - I do not like the dentist but I react within a minute of the injection and not before.

Me too. I told my dentist that the injection makers me feel awful but that day it didnt - so I am not sure if he used one without adrenaline? I too get the tachy and terrible shakes. Once I even collapsed (years ago) just after the injection and it was as they sent me to the waiting room to wait for it to go numb....so there I was on the floor in front of all the strangers having a siezure of some sort. The dental nurse drove me home - but I never did find out why I reacted in such a way.

Hi chaos I read yesterday that it is 25%. What I dont understand is why my BP goes high on standing or low on standing. I dont know what type of pots I have - found a link saying that there is low flow/high flow/hyperadrenergic pots. It all means nothing to me as I have had no explanation of any of this from ANY doc/specialist I have seen. Just you have pots/autonomic dysfunction.

Interesting about the kidneys. I was having some general labs done and they found my gfr was 49 stage 3 CKD. I have since had 2 more tests and there is an improvement to stage 2. I have had no explanation why my kidneys are having problems - could this be autonomic?

Hey Naomi and thanks for the reply. Mine only dropped by 19 so that clears me for that. As for narrow pulse pressure - what does that actually mean, I really do not know what is normal/abnormal, right or wrong lol. BP now is laying 113/74 hr80, stand 128/119 hr128...completely different to this morning! SO I would love if someone on here can give some simple explanations for it all!

What IS supposed to happen to our BP's upon standing? Normal BP not pots BP though. Sometimes mine goes up and sometimes it drops. Some days like today, my systolic drops but my diastolic goes up on standing. HR went up by 44bpm. 113/72 laying. 94/83 standing. Is this normal? Its ok me taking my BP but its not of much use if I do not really understand what it all means!

I have just read another post re taste and it got me thinking if all the senses are affected by dysautonomia. I get funny taste in my mouth at times, I smell things that are not there or I can detect the faintest of smells on people/things. I get flashing lights in my eyes that look like alchemy from windows media player. My hearing can be very painful with the strangest/simplest of noises....womens and childrens voices are the worst and can be very painful as the echo bounces round in my ears! Anyone else get issues with there senses and is it to do with ANS?

Hi I'm in UK. My HDL is 1.77 and my ratio reading is 2.5 total 4.40. So good all round I suppose for someone who eats cakes, biscuits, full fat milk/cream, red meat galore and all the other goodies! Oh but my glucose was 6.8...not surprising really!

Hi Tanzanite, have read up on that and it sounds rather familiar...have never had it whilst asleep but have woken up with a huge gasp for air but not choking. Get the sharp pain in throat, that leads to coughing or choking and some other bits I have read. Thing is, is if it was this, then surely it would be happening more like you have? I have noticed that I have now got broken blood vessels round my mouth and nose and one under my eye. I have never got this before but then this was the worse choking fit I have had. Is this usual?? Should I tell the specialist when I see them and could this choking have anything to do with thoracic outlet syndrome a it has all started approx the same time. Please, not something else lol!!!