clairc

Mine was the opposite, my urine sodium was 54. I'm still waiting to speak to the POTS nurse to see what that means.

Thanks for the replies. I didn't have any other sodium tests done, just the 24 hour urine collection. I found some websites that state normal values are between 40 and 220 mmol, which is probably why my GP said my result of 54mmol was in normal range. The POTSUK website says the goal is a volume of 1,500–2,500 ml and sodium excretion of 170 mmol/24 hours I was wondering what my low result indicated and what I should be doing about it? I was already eating more salt when I did the test. I estimated I drank 2,800 ml and I passed 2,500 ml urine. http://www.nlm.nih.g...icle/003599.htm http://www.potsuk.org/investigations

I had the itching with IV morphine. I went from passing out from the pain to be totally wired, sitting upright and trying to pull the canula out of my arm because the itching and burning was so intense. I was given IV Piriton and it went away. I was pretty out of it but I remember the nurse said I could have been allergic to something they gave me for nausea. I'm still not sure what exactly happened. I've had oral morphine on several occasions since then and I haven't reacted to it at all.

Hi! I just got diagnosed with POTS today after suspecting it for quite a while. My local hospital ran a 24 hour sodium urine test on behalf of the cardiology clinic and my GP told me the results were normal. The nurse at the clinictoday wanted to know what the actual numbers were. She said they should be over 150. When I got home I phoned the GP surgery and they told me my sodium was 54mmol. I'm guessing this is too low. Can anyone here explain what it means please? I've already increased my salt and fluid intake and I'm due back at the clinic in 3 months time. TIA! Clair

My husband has a low resting pulse, 50's or 60. His pulse went up 5 points when I tried it on him. My resting pulse is mid 70's and can go up between 25 -40 when I stand.

Hi! For those of you who have temperature regulation problems, do you get a fever after being cold? I've just been to the GP. The window was open in the waiting room and I got quite chilly, despite keeping my coat on. I was shivering by the time the doctor saw me and when she took my temperature she said I had a fever. This lead to her diagnosing an infection and prescribing antibiotics. When I got home and was comfortably warm I took my temperature and it was normal. An hour later I felt a bit shivery again and it was slightly raised but no where near what the doctor said it was. Could an overcompensation of my temperature regulation have temporarily spiked a fever? This isn't the first time I've had this problem. I spent a day at a friends house. We were in the kitchen and she had the back door open all day and I got quite chilly. On the way home I started to feel ill and the next 24 hours I spiked a high fever. I had a severe headache and my body hurt all over but I didn't have any other signs of infection. After 24 hours my temp went back to normal and I felt fine. Is this part of dysautonomia or am I just weird? TIA! Clair

I had an EEG done once that showed slow activity enhanced on hyperventilation. They said it was of unclear insignificance. They never did get to the bottom of why I have violent muscle spasms when there is a change of temperature in the room. Clair

I had a sub-total hysterectomy in December 2010. I haven't noticed any change in POTs symptoms but it was the right thing for me to do for my general health. I still have my ovaries and cervix, they just took my womb. I had a bicornuate uterus with a closed right horn and I had severe pain every cycle. I also had endometriosis and a lot of adhesions which had stuck my bladder in the wrong place and prevented me from emptying it properly. I no longer have excrutiating pain every month and my bladder is much better.

I have always been a bit hypersensitive. I flinch if someone touches me and even as a child I could not stand to be tickled, it physically hurt. I could always hear and smell things that other people could not. Walking into a department store past the perfume counters always made me feel very nauseous and some perfumes and chemicals now have a severe effect on me. The effect is worse when I'm tired or ill but I instantly get a really bad headache my nose gets all stuff and I find it hard to breathe. It's sudden, like being hit in the face with a brick. Sounds get me when I'm feeling ill too, especially repetitive sounds, like someone tapping their foot, and I cannot stand high pitched sounds like someone whistling. I instantly cover my ears it hurts so much. My sister used to whistle through her teeth and it hurts just thinking about it.

I'm not a medical profession but from what I've read pulse pressure is the difference between the 2 numbers of your blood pressure. So if you blood pressure is 120/80, then 120 - 80 = 40 so your pulse pressure is 40. A wide or narrow pulse pressure can sometimes signify problems. http://en.wikipedia.org/wiki/Pulse_pressure Clair

Thanks for your replies. My GP thinks I don't have POTS because the hospital TTT was negative, but I never even got the chance to speak to a cardiologist to explain what my symptoms are like and how I'm worse early in the morning. Hopefully the new doctor will take my readings on board and not think I'm just an anxious hypochondriac! LOL!

Hi! I've not been diagnosed with POTS yet, but I'm collecting BP and pulse readings to take to my cardiology appointment in 2 weeks time. One thing I have noticed is my symptoms can fluctuate quite a lot, some days I can't get out of bed without going weak and keeling over yet other days I'm a lot better. My readings show this too. My GP asked if my pulse rise was sustained so I've been going my own poor mans TTT. This morning my pulse increased 30bpm after 5 minutes and stayed at 29 bpm above resting for the next 5 minutes. 9 days ago my pulse went up 50 bpm, it peaked at 124 bpm and stayed at over 40 bpm above resting for the whole 10 minutes. My readings are most extreme in the morning upon betting out of bed, in the afternoon it takes 5-8 minutes for my pulse to reach the 30bpm increase and if I test in the evenings it often is normalish, only going up about 20-25 bpm. Is this typical of POTS? I've also noticed my diastolic blood pressure slowly rises when I stand up, but my systolic falls, although not enough to meet the diagnostic criteria for orthostatic hypotension. My pulse pressure often drops to below 20. I'm not sure if this is significant or not. I've already had a TTT which was negative. I don't know what the numbers were, they wouldn't tell me, but on the results of the test they said I didn't have POTS and I would not need to be seen by a cardiologist. The TTT was done at noon when my symptoms usuall start to ease off a bit. Luckily I've managed to get an appointment at a different hospital at the syncope clinic. I want to give the doctors the best information so they can try and figure out what is up with me. My GP wants me to give up trying to look for answers and said she won't refer me to anyone else so I have to make this appointment count, but I don't want to waste my time fighting for a diagnosis of POTS if my symptoms don't really fit. So is it normal for symtoms to fluctuate day by day and throughout the day? Or does your pulse have to go up over 30bpm every time you stand? Clair

I was diagnosed with ME in 1990. I was not tested for POTS. I believe the NICE guidelines (which the NHS in the UK must follow) states that tilt table tests should NOT be routinely performed. Go figure!

I just googled and joint and muscle pain is listed as a side effect of the drug. Does that sound like what you might have?

My symptoms are always worse in the morning, always have been ever since I was a teenager. When I was 15 I had such battles with my parents. I would be too ill to go to school in the morning but feel fine in the evening and want to go out and see my friends, but my mum wouldn't let me, but if I had been to school all day I would be so exhausted I wouldn't be able to go out in the evening, so I hardly ever went out at all! Even now I am usually much better in the evenings, whcih is confusing when I think I'm getting better and the next morning I get up and collapse again. My hospital TTT was done at 11.30am, which is around the time I start to feel better so they didn't catch my symptoms at their worst. This morning I did another DIY TTT at 7am and got some pretty interesting readings. Laying in bed: 112/60 p72 1min: 88/56 p121 3 mins: 98/66 p105 5 mins: 90/72 p115 8 mins: 95/78 p118 10 mins: 97/70 p116 Laying down again: 113/64 p77 Something weird is definitely happening when I stand up. My blood pressure did drop a bit, but not quite enough to qualify as orthostatic hypotension, my pulse increased by 49 bpm and it remained over 40bpm higher than my resting pulse for the whole 10 minutes. My feet and legs also went purple again, but everything went back to normal when I laid back down in bed. Maybe I should just stay in bed? LOL! I guess it's all good evidence to take to see the cardiologist, I'm just worried they are going to think I'm an OCD hypochondriac if I go in with a huge file of blood pressure charts and photographs of my feet! LOL! You look after yourself. Clair

Thanks! My blood pressure doesn't always drop. I just did another DIY TTT and my BP actually rose a little. Sitting down (feet up): 108/64 p77 1 minute: 115/71 p94 3 minutes: 109/73 p100 5 minutes: 113/77 p96 8 minutes: 107/79 p108 10 minutes: 112/80 p107 Sitting down (feet up): 122/71 p82 Sitting down 2 minutes: 120/65 p74 I felt slighly light headed and I found it harder to breathe around the 8 minute mark, when my pulse went up. I also took a photograph of my feet to see if I had any pooling and I was quite surprised! My feet went purple after I'd been standing for 10 minutes. I posted a photograph here: http://s1087.photobu...etest170712.jpg They never checked for pooling when I had my hospital TTT. That reminds me, I phoned to request the rest results and they haven't got back to me about that yet... Clair

I have an excel spreadsheet LOL! Anyway, I did my own TTT this morning and although the machine refused to give me a reading after 10 minutes I found out some interesting stuff. I do have a sustained pulse increase upon standing, not sure if it's enough for a POTS diagnosis but most interesting is that it comes right back down if I lie down again. This is what I got: Laying down: 113/59 p80 1 minute: 98/64 p115 3 minutes: 104/67 p106 5 minutes: 92/72 p110 10 minutes: ERROR (tried 4 times - could not get a reading) Laying down again: 109/66 p75 I'm going to keep doing this every day for a little while and take the results to the cardiologist in Sheffield and see what they have to say. From what I've read I might be borderline POTS, but whatever it is, the results are not exactly normal. Clair

I've been kind of doing my own TTT. Every morning I take my blood pressure and pulse before I get out of bed (I keep the bp monitor on my bedside table). Today it was 112/57 and my pulse was 76. I then roll onto my side, sit up and then slowly stand up as still as I can. I then take my bp again. Today standing it was 95/67 and my pulse was 113. That's a pulse increase of 37. I showed my GP a chart of all my readings. 14 out of 19 days my pulse increased by 30 or more, 3 days it went up 29, 1 day up 28 and 1 day up 22. My GP asked if the pulse increase was sustained, so now I'm going to keep standing and keep taking my bp to see what happens. Thank goodness I have my own bp monitor!

Thanks Rach! I went to see my GP today. The cardiology team who did the tilt table test wrote her a very short letter which said the test was negative for POTS and I would not be seen by the cardiology clinic. End of story. I never got to speak to a cardiologist or anything. I gave my GP the print out of all the blood pressure and pulse readings. She asked what did I want to do about it. I said I'd like to talk to someone who knows something about it! She asked who. Luckily this morning I'd found the name of a doctor on the internet, so she said I could see him, but she wanred me she couldn't keep sending me to people until I got what I wanted to hear! Anyway, I have an appointment on 13th August at the Syncope clinic at the Hallamshire. I hope it's the right clinic, they weren't sure where to send me, but fingers crossed they will be able to help me. I also phoned PALS and asked for a fully copy of my tilt table test. They are going to get back to me. I have no idea how negative my results were. I'm not sure if I fully meet the criteria for POTS as my pulse only seems to go over 30 first thing in the morning. If I take my pulse and blood pressure before I get out of bed it always goes up, but if I test later in the day, even after laying down for a little while it can rise anywhere between 15 and 25bmp, which is not enough for a diagnosis, but still more than it should be. I had my tilt table test done at noon so I'm guessing my pulse didn't go quite high enough. It must have gone up though as I got very short of breath and was practically hyperventilating for a few minutes. My GP asked how long my pulse stayed high so I guess my next job is to start charting it at intervals and take that to the cardiology appointment. From previous experience it goes high immediately and then comes down slowly as my body compensates, but it remains at least 20bmp above resting pulse after 5 minutes (I struggle standing for much longer). Does that sound like POTS? Or does it have to remain over 30bmp? Can you have POTS if you only get the symptoms first thing in the morning or does it have to be all the time? Editted to add: Oh yeah, my GP said I didn't have EDS because those people are very poorly! Yeah, and I'm a picture of heatlh! LOL!

Did you have a local anaesthetic ? I get ill if I have a local that contains adrenaline . If my dentist uses a plain local I don't get sick.

Thank you for all your replies. I saw an Infectious Diseases specialist 2 years ago. He tried to refer me on to Immunology but the consultant there refused to see me on the grounds that they had already excluded immunoglobulin deficiency, specifically immunoglobulin A deficiency, and that there were no further immunological tests that they could perform. He did not think that my symptoms suggested primary immunodeficiency. I had a subtotal hysterectomy in December 2010 (they took my womb but left my ovaries and cervix). The removed the endometriosis and repositioned my bladder as adhesions (from previous abdominal surgeries) had stuck it in the wrong place. When I was in hospital recently I had an ultrasound scan and they saw something at the top of my cervix, where it used to be attached to my womb. They didn't know what it was, but they did no further tests and I was not referred to Gynaecology. I was at a pain clinic a couple of weeks ago and the nurse suggested that my recent severe abdominal pain could be from the endo growing back and she was surprised I hadn't been referred back to gynae. I actually think the pain was inflammation from the severe constipation I've had due to taking pain killers. It's much better now I'm taking IBS medicine and laxatives. As for my pulse increasing on standing, it only seems to go over 30 first thing in the morning, or when I'm very ill with something else, like an infection. I took some readings tonight, my blood pressure did not go down and my pulse only went up 22 bmp, (73 laying down to 95 standing) which is not enough for it to be POTS but its more than you'd normally expect. I did the test again using my husband as a control. His pulse went up 5 bmp, but he is the opposite of me. I have low blood pressure and a high pulse, he has high blood pressure and a low pulse. I'm expecting the doctors to play the deconditioning card, but that doesn't make sense to me either. How is it my pulse can go as high as 129 bmp simply by standing up in the morning, but it doesn't go over 115 on one of my rare good days when I can do 10 minutes of low resistance pedalling on my exercise bike? I can almost understand my GP's opinion about giving up the search, but I don't give up easily and there is always the what if in the back of my mind. What if there is a treatment that could make things even just a little bit better? I have to try and find out. Thank you all for listening.

I'm not sure what tests they ran but I was assured that I had no immunodeficiency. I'm not even sure if my infections are infections or autoimmune inflammation. I have a lot of UTI's, they show white blood cels in the urine dip but cultures either show no bacteria or are dismissed as contaminated as they contain more than 2 kinds of bacteria. I had suspected pelvic inflammatory disease 2 years ago. I was very poorly so they did a lapaoscopy found pus and endometriosis in my pelvic cavity, but no bacteria. Almost every time I get a cold I get a chest infection, I have sinus issues, vasomotor rhinitis and a deviated septum, and I always have a sore throat. I get strep throat at least once a year. My glands are always up, I get swelling in the right hand side of my body, my ankle, thigh and upper arm especially. I have low grade fevers when my symptoms flare up. My normal body temp is 97.7 but I feel ill when it goes above 99, but the doctors dismiss that because it's not very high. Sometimes I just feel like I'm falling apart! I've seen quite a few doctors who have been unable to help me, other than confirm that my symptoms are consistent with CFS. My GP wants me to give up looking for a cause, because even if I find one there is unlikley to be a cure for it. I just want my health to be a little more stable.

I use my blood pressure machine before I get out of bed in the morning. My resting pulse is low to mid 70s and the average increase is 35 bmp upon standing. If I test during the day it only goes up by about 20-25 bmp. I guess that may have happened during the tilt table test - hence them saying it was normal. I can't see how it's normal to get tachycardic just by standing up though! I use a wheelchair/scooter when I go out because I have mobility problems. I've been ill for 22 years, originally diagnosed with ME/CFS because all the tests were normal. I have a lot of joint pain and walking causes me more pain and fatigue. I walk around with a cane indoors and I can walk short distances outdoors, 50-100 yards on a good day. I discovered this year that I am hypermobile which might explain some of the pain and injuries I have (bursitis, tendonitis, muscle pain etc) and as POTS is a common finding in people with joint hypermobility I wondered if that is what I had. I get a lot of infections, but I've been assessed by immunology and there is nothing wrong with my immune system. I ended up in hospital 8 weeks ago because of a UTI. I had a lot of pain and I kept going dizzy and collapsing every time I stood up. I collapsed at the GP surgery and they called for an ambulance. They took my blood pressure laying and standing and my pulse went up 33 bmp. The doctor looked at the chart and said it was normal, but luckily I'd been reading about POTS on a hypermobility forum and I knew it wasn't right so I told them and the sent me for the tilt table test. I'll take my chart to show my GP on Monday and see what she has to say.

I'm not sure I'm allowed a full copy of the test results, I'm in the UK and The NHS doesn't like patients having their own notes, but I will certainly ask. I believe the tilt table test was done properly, although it was a shortened test. I had breakfast at 7.30 (water, coffee, cereal bar). The test was at 11.30am. They didn't want to do it at first because I have limited mobility and use a wheelchair when I go outdoors. They told me the test was 45 minutes long and asked how good I was at standing. I said not very! But I said I would try and they agreed as long as I told them as soon as I started to feel ill. I was strapped on the table, laying completely flat. They put monitors on my chest and abdomen, a blood pressure cuff on my left arm and a monitor on my left index finger. They turned the lights down low and left me a while, not sure how long, probably about 10 minutes, then they tilted me up. I felt a little dizzy, I noticed I was breathing harder, it was like I was short of breath, which is how I get after I've been walking a minute or so. I felt that draining feeling I get when I stand up, like I'm a sand timer and all the sand is running through to my feet. They asked me how I was and I said had some discomfort but I could stand it a little while longer. They asked me again and said I'd done just over 10 minutes so I asked them to lay me flat again. When they laid me flat I had a sudden head rush, it felt like they'd turned me upside down and all the blood was rushing to my head. They left me there for a little while then they turned the lights back up and took all the monitors off. I asked what the results were and they said they weren't doctors and were not allowed to say. They said the results would be seen by a cardiologist and sent to my GP. After the test I was completely exhaused and had to spend the remainder of the day resting because I felt weak and wobbly. I telephoned the GP surgery today and the receptionist told me the test was negative, no referral to cardiology and no further action required. I'm going to see my GP on Monday and show her my blood pressure and pulse readings. I typed them all up and although they are not as high as some people on here I think they are indicative of POTS or OI https://docs.google.com/spreadsheet/ccc?key=0AkSngvLhCHQrdC1PbUdmaURfTHRiSnFSX1pKbjFOOFE Clair

I phoned up to get my tilt table test results. They said they were normal and I don't need to see a cardiologist. No further action required. I am very confused. I have been taking my pulse and blood pressure every morning for the past couple of weeks. I just charted the readings. My pulse increased 30 bmp or more (from laying in bed to standing still) on 11 out of 16 times. 3 times it has increased by 29, once 28 and once 22. My highest increase was 49 bmp. My systolic blood pressure fell 15 out of 16 times, 5 times it fell more than 20 points which I believe indicates orthostatic hypotension. I'm going back to see my GP on Monday and hopefully she will take my data seriously. Fingers crossed! Clair