louloutinks

Todd I have had no studies done as I haven't told my docs about this before today. Sarah thanks for that - I have not heard of that site before.

Hi all, I rang out of hours GP and they said that because the blood was bright red then it must have been from broken blood vessels from choking, coughing and being sick as there are no signs of infection or temperature. They said if it happened again with blood to see GP if still worried. My throat/tonsils looks horrendously dark reddy purple today - like raw steak almost and very very painful so maybe they are right and it is broken vessels that caused the blood. Tanzanite that is exactly what happens to me but I do not get them as regular as you. I may get this 10 times a month (rough guess!) but with gagging and tears streaming down a bright red face! When I am choking it is like I breathe in kinda continuously making an awful noise but cannot breathe out - if that makes sense and my throat feels closed. On a funnier note about last night after I was trying to get my autistic child to hit me on the back, he did and then he tried to do the heimlich manoeuvre which of course didn't help lol! So as you say Bellamia, bless him!

Hi Sue, there is A and E but think that is a bit dramatic for this. Am seeing rheumy specialist in August sometime - wonder if they would know

I have been choking on drinks and usually for no reason on and off for a while now but have not really taken much notice. I was engrossed in my programme tonight when I started choking and I was gasping inwards but could not breathe out, I had tears streaming down my face and knew I was bright red..I had to get my 8 year old to hit me on the back (which was extremely hard as he is autistic and didn't really understand why I was hitting myself on the back until I grabbed his hand!) As soon as I got a breathe I had to get to the bathroom and I vomited - it had specks of blood in it. I coughed lots more then vomited again and it had a large bright red clump of blood in it. Do apologise for too much info! I have also noticed that when I lay down I get the feeling that some food is stuck and is moving slowly behind my breastbone - even though I havent eaten. I also have been getting the sensation of a bug being stuck in the left side of my throat. Havent really thought much of all this until tonight but would be great if anyone could offer their thoughts

If I hold my hands above my head I get weak arm and pins and needles- my hand goes white and weak too. Oo er Sue, I wonder what is causing the redness you have - have you been to your specialist about this?

Hi Sue, hope you are well. What other things do you get along with the swelling? Mine started when I couldnt lift anything - not even a teaspoon - lost control of my hand, painful arm, shoulder and neck. Pins and needles in my hand/arm. I went to A and E. I started to get headache daily before that and since. A few days after that all started the base of my hand started to swell up and went red - I phoned my gp who told me to take some naproxen (they refused to take notice of A and E recomendation to check this out further). This lasted for days but has since gone down but my thumb still has a swelling on it, which I did not mention or think of until I read about the clots just now. He did some tests with arms in differnt positions, looked at my collarbone, checked pulses and that was all - so was very surprised when he spoke about decompression surgery - I want more than my pulse taken and a couple of other tests, to make sure it is this. He will not do EMG but wants an MRI. I get horrendous pain Sue - the other night it was so bad that I wanted to cry as I had no naproxen to help it. I have also noticed a lump in the side/back of my neck so I need to show the specialist that too. How long have you had swelling?

I have been having problems for the past few months with pain and numbness in my arm and surrounding areas. I have ehlers danlos so my physio did a few tests and said I may have TOS...told my GP...sent to a specialist. Told him about my pain, sunken veins, swelling of hand, headaches, vertigo etc He did a few tests and said 'yes it seems you have it' and started to talk about decompression surgery. He said he will not conduct an EMG as my gp requested but he wants an MRI. I am very worried as I have just read that it can cause blood clots. Which I am very surprised at - I just thought it was a nerve thing and was nothing to worry about whatsoever. I havent been told anything about this condition so can someone please help me. I only know what I have read so far. My mum had a clot in her subclavian and aorta, she told me the other day, so now am worried after reading this and what this condition really is about,,,please help!

Just an update on this post.....as well *** the twitching when need to pee, I have noticed the past couple of days I get an adrenaline surge, then the need to pee and twitching, jittery legs - what is going on?! (edit just to say it has only happened 4 times in the past 2 days)

I used to be a size 8 uk then within 6 months I was a size 14/16 ....for no reason - no meds, no diet change. Now the past two months it has started to go again now I am a size 12. Maybe it could be your meds - could you not see the doc who deals with you - have a look at the med inserts and check out the side effects

Thats pulsatile tinnitus - if it is in time with your heart beat.

Yuliya thats interesting as I have been getting tremors in my hands and lower back/butt upon standing. The only thing is is that I carry on trembling for a while even if I sit down so it cant be postural. I have been getting tremors on and off and also lots of muscle twitches - last night I was woken and kept awake by twitching just above my right ear on scalp - very odd place to have a twitch. Not sure if it is all related to RLS, TOS or what but it is very annoying!

Sounds just like the UK!! At least the dermy is behind you. My fab doc left the surgery and I was left with other docs, as you say, if it is out of the ordinary rather than a cough or cold - they make you out to feel stupid. A new doc has thankfully come to the surgery who is superb and he has got this thoracic issue to be dealt with - the other two docs completely ignored a letter from A and E that I needed to see a neuro/have MRI - but this one is on the ball and very welcoming and willing to help. I have been hearing a lot about this masto on here - is it a thing that runs alongside ANS dys? Hope you get some answers soon enko...keep smiling

Yes they are driving me nuts too! The pain I get is in my arm, neck, shoulders and chest - something to do with compression in the thoracic area and boy it is Pain (with capital P!). I wanted to cry the other night as I was in agony - I cannot wait for this to be dealt with properly! Have you got EDS?

Hi enko, you have just reminded me about when I stand up I have noticed that I get shakes in hands and arms and my muscles tremble in my lower back/butt. Pins and needles, numbness, pain, hearing problems, headaches, and this darn twitching - can it all be TOS! At least yours has gone Enko

Hi all I started to have thumb twitches a while ago on and off. My thumb would move by itself and you could see the muscle moving at the base of my thumb, small, regular movements. It happens at rest. Well I ignored it but have now started to get my two second toes doing the same thing and I just cannot stop them moving. It is getting more and more frequent and longer with time. Also, they all seem to start twitching together - usually. I have been told I have thoracic outlet and am having an MRI to confirm it - but the twitches are on the other hand to my TOS. To be honest they are starting to drive me nuts now - my toes and thumb are having a dance competition right now lol....seriously though, what is this about?

What are mast cells - keep hearing a lot about them but have no clue what they are and how they affect you? Luckily here the heat has dropped some due to a storm clearing the humidity.

Hi all, I have noticed that when it is hot here in the uk and I sit in the sun I get very bad tachy. Yesterday it started within 5 mins of me sitting in the sun. I could feel my heart pounding when I was laying down outside so I wore my HR monitor to keep check on it and also noticed that even when I was indoors after this, my heart rate was all over the place. Just making a cup of tea it was 149 and the highest was over 200. I also ended up with an awful headache too and very very dizzy. Does the sun make pots worse?

Hi Enko, thanks for detailed replies! Not sure if I will give him any salt extra in his diet as he is only 8. I have read a few bits on MVP and just as you say, it will be kept an eye on - when it is your child, it is such a worry but I feel better now. Just waiting for report back from the local and London hospital to see what they have to say. Thanks again Enko

1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.If BP goes up on standing it is orthostatic HYPERtension - if it drops a lot, it is orthostatic HYPOtension.MIne tends to go up on standing 2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?My heart rate goes up by 25 to 70 on standing. I use a heart rate monitor and it shows (usually) the longer I stand, the faster my heart goes. I have also read it goes up by 30bpm OR over 130 for Pots 3. Does your heart rate increase when you eat? By alot?I know my BP drops a lot when I eat carbs and get very tired 4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL Often. Some days/weeks are more 'POTSY' than others - not sure if other people are like this too? 5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?Always had poor sleep - as someone else said - am always tired but not sleepy 6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??they think my constipation is to do with ANS dysfunction - waited for ages to be seen by specialist 8. Tachycardia - how high is too high?Not sure how high is too high but doing the simplest of things can make mine race to 130/40. Whilst shopping mine was 219. My HR is terrible in the mornings especially - get very dizzy,tachy and breathless in am. When son goes to school, I have to relax for a while before I can function properly. Good luck with the app with doc!! Good to see others answers on here too!

Hi Enko and thanks for the reply. Littlelegs drinks lots of water - his fave drink so we are covered there. My son is very thin and very tall. I don't know how big the regurgitation is Enko (does it make a difference then?),I know there were blue flashes on the echo where the red was and this is the blood going back into the chamber, the doc said. She said the valves do not meet together like they should do. She said it will not improve, it will either get worse or remain the same - I hope it is the latter.He seems very young for this though? The scan is going off to the London Hosp to be checked over - why would they do this if they can see it on the scan there and then - why verify in London Hospital. I am not sure what is low BP in 8 (well nearly 9) year old but his was 90/64 - they didn't say anything about that. When you say about energy reserves, do you mean take it easy? He has never been the most active of children as he tires easily. He used to cry as a toddler if he ran back then - but then he has autism too so.... What symptoms do you get if you dont mind me asking!Are you fit and well despite it? And one last thing, is this serious or nothing to worry about? Thanks for your help Enko

Hi Lieze, I just hope that it all stays as it and does not get worse for him. I feel bad as I sometimes felt he was being lazy and making excuses...he was probably telling the truth!

Hi all There is Ehlers Danlos syndrome in our family, including myself and my son has Benign joint hypermobility syndrome. Today he went for an echo and I was told he may have MVP. The valve was not meeting up properly with the other one and was letting some blood back into the chamber (not quite understanding this by the way)think they said regurgitation. I was told it was related to BJHMS. The results are being sent off to St Thomas's for verification by the Consultant there. Can anyone explain to me what this all means. I was told that is why my son gets chest pains and fatigues easily, getting breathless. They said he will need yearly checks. They also said that his autonomic system is not working properly and this can cause him to go blue. I have AN dysfunction too so I understand that part. Could MPV cause headaches? He seems to give up really easily when it comes to energetic things too. I am really worried. Thanks, Lou

Hi FW, These tests were ordered as part of some checks they were doing few months back at my local docs. They have requested that I go back every 6 weeks for the blood test but now it is 70 they say to test in a years time. I did not do a 24 urine test and I havent seen a nephrologist (?) as all this was done by my local GP. They told me it corresponded to CKD stage 3 and 2,but they asked for a urine sample which I dropped in today - checking ACR/PCR whatever that is.They said that eGFR of 70 is nothing to be concerned about and that he was happy with the result. I was in hospital with nephritis...or pyelonephritis(I had one and my mum had the other so we get confused who had what!) 22 years ago so the doc is going to check my records for that one. I am certainly not dehydrated - I used to drink lots of water but have drunk lots more since pots dx. I hope that your results come back with more improvement. Are you in the UK or the US? If you are in US, do they use the same methods over here in UK? Wonder why they didn't bother testing my urine previously when I had the highest creatinine. I did ask them if this could be the reason for my hands swelling badly when I take extra salt for Pots and I asked them if I should stop salt but they said no (but I did). Thanks for all your help in this - you have opened my eyes a bit!

I tell my dentist that the usual stuff makes my heart rate really fast, makes me shake and that I can still feel the pain so he gives me more. I am not sure what I have though!