louloutinks

Hey Lyn, thanks for the detailed reply and the link. I did ensure that I went to the same place to have my bloods taken each time. I will check out the link when I have done this post! I would have thought that it could have an effect - I was told that it could have an effect on everything in the body that is 'automatic'. So if the ANS in awry or having a hard time at sending the correct signals, I do not see how this is not a possibility. Lou The link did not work...took me to an ad page!!!

Hi Darlene, I used to get the aura that would start as a little blemish in my vision and then would start to glisten and arch over the top part of my visual field - like looking through a kaleidoscope - then I would get the full blown migraine. Lately, I have been getting just a dark spot in the left side of my field which is usually brought on by brightness - bright skies etc. I just deal with it till it goes.

That would be interesting to see what they say Firewatcher. I have charted my BP too and at the lowest GFR (eGFR)I see that my BP was very high. I am usually on the low side but I also do go very high on and off but because of my kidneys I have kept check on it the past few months. Surely if the ANS is not functioning correctly, and not dealing with the fluids and salts then it may have an effect on the kidneys over time. Unless as the docs say - coincidence. How can my GFR go from 49 - 70? I just do not understand it.

Hi all, over the past five years I feel I have fallen apart. I have ehlers danlos and was dx'd in feb with pots, autonomic dysfuntion. Last year it was fibromyalgia dx. This year it was kidney function CKD. I get loads of different rashes too. My first kidney function was stage 3 gfr49. My second test was 59 stage 2. And today my result was gfr 70 stage 2 but very mild. The docs have no reason for my kidney function being low. I was wondering if autonomic system has an effect on the way the kidneys function? When my kidney reading was at its lowest, I had terrible livedo reticularis, petechiae, felt extremely cold,my pots symtpoms were really bad...bp, dizzy, tachy, tired, RLS. My doc said it must be coincidence but am wondering if anyone on here jnows different as my local GP's didn't even know ANS could cause headaches! As the kidney function has improved, so have my pots symptoms...any links???

I can imagine that Lieze as I had a scare a year or so ago and was told I had a heart attack due to st elevations on ecg - then another doc said no as no tropanin in blood. Another ecg showed m shape p waves, and all this was such a worry why the ecg's were showing changes - but one good thing is that it led me to a dx of pots.

I am glad it is normal - well for us anyway! My heart rate tends to go up but has never gone low like this at rest. I do get an adrenaline surge type feeling even though my heart rate is only about 80 - but it feels it should be going about 140 when it actually isn't.

My heart rate at rest is usually between 84 and 90, but the last few days I have noticed that it is dropping to 60/62 when I have sat down. Mine is normally not this slow. I havent done any exercise in a few months so I am not keeping myself fit or anything, so wondered why the big drop in resting HR lately. It is not like me at all!

Hi MM and Lieze, so really they do not show up with much anyway and as you say MM, it is pretty useless without a log. I felt pretty 'potsie' that day too and was sure that it would show something. But yes I would call 149 tachy just by standing up and making a drink. Does anyone else get stages of feeling REALLY bad then pretty good. I can go 2 weeks feeling really dizzy, headaches, tachy, shaky etc then I can feel ok for a few days. I have tried to work out what I am doing different but there is nothing to note.It's like the brain is working ok then it isnt! I started the gym just before christmas and the trainer who was training me was shocked at my HR just taking an amble on the treadmill which I had to stop and sit on the floor lol! Annoying that the HR was not mentioned that was taken whilst at the hospital too, but my mum was there when they did it.

My lowest was 55/35 but my doc said that was not possible. I am usually about 89/55 but then I go up to 138/100. I vary so much day to day.

I went to see a cardiologist last November before I was diagnosed with POTs in January this year and they fitted a 24 hour monitor. Whilst I was at the hospital, they took my HR sitting 74 then standing 118. They asked me if this is usual and I said yes. The cardiologist told me to drink more water - which I drink lots of anyway! Well the post arrived yesterday with the results of the monitor (yes 6 months later) and it stated no brady or tachy. Few isolated PVC's and APB's. Max HR 149, minimum HR 55. What is tachycardia classed as then....so my HR rising on standing is not classed as anything. I dont understand. They did not request me to write anything down to compare to the monitor either. If I had they would have known that I had a day at home, just doing general things. Nothing was mentioned on the report about my sitting and standing heart rate either. Does pots not show on a monitor like this?

Just wondering if anyone can tell me if they have had this done, what they do and what the results mean. Thanks, Lou

Just 'bumping up' for an answer please lol

Before I found out I had Pots, I was taken to hospital with concave upwards ST elevations and was told that I had had a heart attack - then I was told I hadn't as there was no tropanine (sp?) in my blood. I had another ECG a while later and I had M shaped P waves .....so I was wondering, could it all have been Pots/dysautonomia related?

Hi Darlene, is the pain getting worse - if it is, it could be a dry socket - I had one and it is the worst pain in the world. Hope it isn't

Hi Naomi, I saw a top physio re this not a doc but because I am seeing a Doc in London (at the same hosp) about all my issues he said to tell him about the BP and the veins. He first told me to see my local doc- which I will not as they are useless then I told him about the UCLH doc. He didn't say it was caused by TOS but that it was a vascular thing. NOt sure how the health system works in the US so am of no help for you there! Are your symptoms constant as my are daily but intermittent. I usually have some form of numbness in my left hand/wrist daily, headaches usually daily, vertigo, few times weekly, ear problems often etc I get vertigo, nausea, painful ears, vibration in my ears too, chronic headaches, neck, shoulder pain etc. My left arm is weak too - this all started after I went to the gym once and I couldn't even pick up the lightest weight. The only thing that I had before this was the sunken veins. I am finding that I cannot even move things around my home like the other day I went to move a portable telly and was so weak I couldn't help but laugh. Maybe the London doc will look into the BP part of it for me - what worries me is my veins that sink in - if I hold my arm up or level the veins dip inwards in my forearm. There is also a dent in my muscle like someone has pushed there thumb in it. One thing I did not understand is during one test (when I had to hold my hands in the air and open/close my palms) why did the other hand go numb first. I never have problems in that hand - I can't have TOS both sides or can you! Have you got TOS in both sides Northerndarlene or is the both side weakness due to one side. I am seeing them soon and will have to go armed with my questions written on paper else I will forget!. Thank you for the link Northerndarlene I will check that out.

Hi Jana, no I havent - they seem to think it is thoracic outlet...going to see specialsit soon! Thank you for the thought

Oh meant to say BP difference and sunken viens were vascular issues. Oh GOSH I just noticed my terrible typing - having a mixed up letters night I think lol

Hi Naomi Are you in the UK? I just an appointment up London, after recievnign the results of an MRI that had minimal bone spurring and hypertrophied somethnig or other that would not be casuing all my symptoms. I mentioned what rissy had said and they did a few things but do not know what thye are called. Holding hands together whilst up and then the backs of hands together, holding hands in the air and opening and closing them. This was so painful and made both my hands go numb but especially teh left side of my left arm. Holding arms up with neck turned to side.Pushing on certain parts of my back,chest and shoulders - which really hurt - just under collarbone, on shoulder near neck and by shoulder blade wree very painful. 10 movements of head up, 10 of down, 10 to left, 10 to right.Erm cant remebmer any more! However they did say that the tests are not 'definitive' but I have to go back in 2 weeks for physio.And then on to see a doc at the end of June. One thing I have noticed is that the veins in my left arm are sunken and I have dents in my arm too. I am not sure wether this is related. I also get different BP's in each arm - like 131/100 in one and 107/82 in the other. What symptoms haev you been getting? I haev read that it can be neurogenic and vascular either or kind of thing.

Hi Rissy, just thought I would let you know that you left an answer in a thread for me re different BP in arms and you said to consider subclavian steal or thoracic outlet...went to London Hosp and it is thoracic outlet syndrome so you were right! So thanks coming your way for information as I mentioned it because of what you said and they did a few tests and said it was that. I am having physio for my neck, joints and now that - does anyone on here have this thoracic outlet and know anything about it please? Many thanks

Not sure if this may ease you but I have had pins and needles in my left wrist and hand since march 19th precisly. I have also been getting pins and needles in the back of my head. MRI showed minimal bone spurs and hypertrophy uncinate but nothing that would be causing this. Am off to London Hosp on Friday for pysio and am going to ask them as they probably know ,more than my doc. Really do hope it goes soon for you as it can be a worry

Yes, I do have EDS. But, you may be creating some of your problems by eating histamine causing foods - strawberries are a biggie. Ah Issie you have just helped a penny drop....I came up in single large hives each time and I thought it was down to the cream I was having with the strawberries...would that cause single hives? I have just found this: The foods most commonly reported to induce urticaria are shellfish, fish, egg, nuts, chocolate, berries, tomatoes, cheese, milk, and wheat. Foods reported to release histamine directly from mast cells are uncooked egg whites, shellfish, strawberries, tomatoes, fish, chocolate, pineapple and alcohol. Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels. Foods reported to be high in histamine are fermented cheeses (e.g. Camembert, Brie, Gruyere, Cheddar, Roquefort, Parmesan), brewer's yeast, shellfish, many fin fish, canned fish, tomato, spinach, red wine (especially Chianti), beer, unpasteurized milk (e.g., cow, goat or human milk), chicken, dry pork sausage, beef sausage, ham, chocolate, fermented soy products, and all fermented vegetables, such as sauerkraut. I eat lots of the embolden ones....ooh er I am really surprised. Does this mean I am allergic to these then?

Added ear and another chest pic!

That was an interesting link Dana. When I have a bath sometimes that happens, its like the water really tickles my skin, I scratch it and I end up looking like I have fallen in nettles and they come up where I have scratched. Hi Issie, I have been eating lots of strawberries, melons,etc drinking c-juice so wouldn't think I am c deficient. Have you got EDS? Why do skin issues just start? It seems all the skin problems started with hives and heatrash a few years back, sun sensitivity, then the perioral dermatitis, dischidrotic eczema, livedo, turning purple on chest and knees, brown dots, itching, swelling, red spots - in that order - would it be an immune thing or something like that. That's why I have wondered if it is to do with Pots as it all started around the same time. Oh and that link also reminded me that if I wash my hands in cold water,my hands and arms go really blotchy. When I have been swimmning I come out in the brown dots all over my trunk and legs and have had many a strange look from others! Why are these things intermittent too i.e cold water not all the time, sun most of the time - if I am sensitive to these things then why not ALL the time - I really just do not understand. Ah just to add - could it be to do with my kidneys as they are not functioining correctly?? Just a thought

Hi Reen, I have stopped taking naproxen for a while now as I have had abnormal renal function results. I wasnt taking these at the time of the last renal test which was still abnormal but it got me worried. I am only going to take them if I cannot bare the pain anymore!

Oh Macks Mum you have really made me chuckle...064 is my wrist and hand - very bony considering I am 11 stone! I will add a comment on each one -sorry I suppose because I know what bits they are..... what do you think the reddish spots are - they are more under the skin. I was covered all over my legs for about a week. The brown spots tend to appear when I get livedo or when my legs go purple. What is dermographism (?). The thing on wrist was very similar to what was on my chest and I also get it on my left ear. My left ear gets real hot and red with a bump. One thing I did remember this evening - just before Christmas gone I had what I thought was a liver or sun spot on my forehead(I am only 41) and then it started to swell up - from about 4mm to 10mm. It was raised too. I went to the docs as it was getting bigger, and he wasnt sure so he gave me cream and said if it didnt go to come back. I saw another doc as it did not go and he wasnt sure either. He said it might be a solar karatosis and if it had not one in a month to come back. But it went finally after 3 weeks and I have faint patch where it was. I have a few more of these 'liver spots' over my body. Thanks MM