noodlemaster

Like most of you, I have been told that I am simply anxious and doctors have sent me away feeling like a time-waster or worse. I was diagnosed with POTS and joint hypermobility earlier this year. A few months ago I had a "click" moment when I read about functional illnesses. These are, as far as I understand, illnesses where the body does not have an obvious problem with its structure, but it is functioning incorrectly. In short, I believe that POTS, in my case, has been caused by chronic anxiety, with hypermobility as a predisposing factor. It doesn't feel like anxiety, because I am always worrying and I have few relaxed times for comparison. I believe my body is frequently stressed by becoming ready for fight or flight, and that this has caused a semi-permanent change in how the body functions, but not in the structure of my body. Even when I do feel noticeably more relaxed, my body is still dysfunctional and feels odd physically. I think that there is a spectrum of ways that anxiety or stress can express itself, from anger to panic attacks to longer-term insidious effects. I think that for me, my body has changed itself in response to being stressed by my thoughts. If a doctor had told me this a year ago I would have been angry at them. I had to sort of feel this for myself. This realisation made me concerned at first, but I now feel more in control. I think I can beat it mainly by changing my lifestyle and outlook. I believe this will help me feel more in control and, over time, allow my body to spring back into its original functioning - at least some of the way.

It took me a little while to accept because I was so used to "fighting my corner" when seeing doctors before diagnosis that it wasn't anxiety - directly - because I experienced symptoms all the time and I did not have panic attacks. And I had a silly misconception that psychosomatism meant that you were consciously making yourself ill and being over sensitive. I'd been reading a lot about different lab measurements of PoTS people - the chemistry and other objective stuff, and I think I just assumed that this meant it was a problem with the structure of the body. I am glad that I have been diagnosed with PoTS and that I fought for it, but coming to terms with what I believe is an emotional cause has made me more positive and determined to get better. My cure - partial or complete - might not be quick and might have setbacks, but it's already started.

This is probably contentious but I have recently come to the conclusion that my PoTS is most likely to be the result of chronic undiagnosed anxiety, with joint hypermobility as a predisposing factor. I don't see another explanation of my autonomic nervous system having a measurable problem with its function and no measurable problem with its structure. I think it has been stressed frequently and as a result has become (semi) permanently distorted. It cannot be reversed in the short term by relieving anxiety, only in the long term. It doesn't mean I'm making symptoms up and it doesn't mean I can just think myself better - in the short term. What can be done is to address the chronic anxiety as best as possible, which is what I'm currently investigating. This could then reverse PoTS, I believe, along with possible medication and other lifestyle changes to help the PoTS itself. I've reached this conclusion myself.

I often feel better after a small drink. But I have to watch it as I also get drunk and a hangover with only a little bit more. I haven't measured it recently, but I did have a higher HR the morning after having three drinks over an evening last year.

Cool designs! I think number 3 is the clearest, although I find that the message gets a little mixed. When I see green on a traffic light I think "go", which doesn't fit the logo of someone lying down and the slowest heart rate, to my mind. But then again red fits well because it says "danger".

I saw a mug today which said: 'I'm awake and dressed. What more do you want?' Edit: not that this would be a good mug for someone with dysautonomia! The owner of this mug turned out to be very helpful and not at all lazy!

Hi Blueskies, I have a BP increase of around 20 diastolic and 15 systolic on standing (to around 115/75), from my home measurements. I have POTS secondary to joint hypermobility syndrome - not sure how this ties in with your question on whether it is a sign of hyperadrenergic POTS, I haven't learnt enough yet. I've read in other posts something similar to what sunburnt said - salt and fluid have been known to even out the blood pressure, not simply raise it across the board. I have been on high salt and water for a month now, but no change in symptoms yet, unfortunately. I was under the impression from my specialist that me going on to use medication is quite likely. I'm intending to do a poll on POTS sufferers' BP responses to standing. I don't think that a rise is all that uncommon. nm

Hi toddm, I was interested in your post. My BP goes up when I stand (diastolic by around 20, and systolic by around 10 - to around 120/75). I was wondering if you have any more information on the orthostatic hypertensive group of people with POTS? I'm not sure if my increase matches this. Thanks, nm

Well I've been going on this site: http://convert-to.com/table-salt-amounts-converter.html which says that 5g salt is nearly one teaspoon, and that a tablespoon is 17g. I'm assuming this applies to regular fine-grained table salt, none of the chunky stuff. I wonder if POTS patients noticed a rapid change in their symptoms when they first started taking extra salt and fluid (without medication) ? It's been a month for me now, and there has been no difference...

Thanks Jana I'm on the look out for some Gatorade type stuff. Not sure if there's an equivalent in normal UK shops

Hi thanks for the replies. Yes I agree it makes sense to add things gradually. I guess I'll add more salt to my current intake which is approximately constant, and keep measuring my BP. Cheers

Hello, I've been reading the DINET website and different medical articles about POTS, and I'm STILL confused about the amount of salt that I should be aiming for. My dysautonomia specialist didn't tell me any value. The DINET 'What Helps' section refers to two articles, one of which suggests 3-5 g per day, and another that suggests 10-15g per day. I wonder if someone could help me out? I realise that there is in no way specific guidelines for POTS meds or approaches that work across the board, but these values differ by quite a lot, and I've read that some people eat even more! I'm also worried that I could eat too much. Some info that might be relevant: I'm male, 6 ft tall, 68kg. My blood pressure tends to be around 100/60 - 110/65. My HR response to lying to standing is on the order of 60-90. POTS secondary to JHS. Thanks, nm

It's really interesting to read this. One of my symptoms is very cold extremities. In winter it's bad on cold, clear days, but worse on wet, warmer days. I'd noticed the correlation with damp weather, but I'd never thought about the barometric pressure. Does barometric pressure have a significant effect on blood pressure and/or blood volume? Since developing POTS, I have been in the UK, which I think has few very high or very low pressures. But they do change a lot (hence Brit's obsessive weather chat). I'd be very interested to see what I'd be like in a different climate.

Hi Shimoda, I think I can relate to how you're feeling. I was really going off alcohol when my POTS started, and I was studying at the time. I've also studied in North America so I have an idea of what it might be like. Lots of people around me were letting off steam by going out to parties and getting drunk. I was frustrated, but I started to realise that generally I wasn't actually missing out on much when I didn't drink and went home earlier than everyone else. It wasn't worth feeling like crap. I realised that I could still have a good time with my friends, and I like to think that I'm seen as someone who has good ideas of things to do that DON'T involve drinking. It's not very imaginative to just go to the pub. So I would ring them up and do something as simple as just going for little walks with them. Often we'd end up in an unfamiliar part of town, and get rained on. Stuff like this is more memorable than being drunk at another party. Plus sometimes my friends would be hungover and I felt a little pleased that I wasn't the only one feeling dizzy and nauseous etc. hehe. But yes, I certainly understand that it's hard when alcohol is generally used so so often as a way for people to be able to get to know each other.

Hiya, I'm not sure if you've seen this article on orthostatic hypertension, which mentions dysautonomia. It might be useful: Orthostatic hypertension: when pressor reflexes overcompensate http://www.nature.com/nrneph/journal/v2/n8...cpneph0228.html

Hello folks, In October '09 I posted here about my symptoms and received some great advice from members including Janey, persephone and firewatcher. Many people suggested that dysautonomia sounds likely. I had been taking home measurements of HR and BP. I emailed a specialist in London and got the referral from my GP. Previous GPs had been sighing and tutting at me. "We all get a fast heart rate when we climb stairs." I'm sure many of you are or were all too familiar with this stuff, unfortunately. There was a large waiting list to see the autonomic specialist, but I saw him and his team last week. I had two TTTs, before and after a sweet milky drink, and had various tasks to do while BP (arm cuff and finger thingy) and HR were measured, including putting my hand on ice, panting, cycling while lying down, blowing into a tube (Valsalva manoeuvre?), squeezing at a constant pressure, and counting down in 17s. I remained tilted up for around 7 to 10 minutes during each TTT. I was getting quite nervous in the waiting room before I had the results. It was warm. At one point I sort of drifted off and had a thought that this was all part of an Imperial University drama group project that had been created to fool me into thinking that I was being diagnosed. Then I woke up and I thought: that's probably fairly unlikely. I was called in and after a friendly chat and some brief examinations I was diagnosed with POTS and hypermobility. I was then floating out of the consulting room, down the stairs and out of the hospital door. This was partly due to cerebral hypoperfusion I gather, but also because I felt like a huge weight had been lifted off me. I have been advised to increase salt and fluid before the next consultation in a couple of months after which I might be trying some medication. I have also got a referral to see a hypermobility specialist in London. Thank you to the response to my debut post, thank you to DINET and thank you for the internet! I had some dark days googling my symptoms and getting worried, but if I hadn't done that I would have never had this breakthrough. I hope that anyone who was in a similar position gets their result so that they can get on with dealing with their condition. This forum is a fantastic place and I look forward to posting and getting to know members more. NM

Thanks for the info and advice, folks. Janey, if you could please send me Prof Mathias email address that would be useful, if you're sure he accepts emails from potential patients.

Thanks for the welcome and the advice from you all. Futurehope - I absolutely agree about keeping an open mind about what it is that are causing the symptoms. I don't want to jump to conclusions. Blood tests for anaemia and thyroid function came back normal. I should bring up Lyme disease with my doctor. Firewatcher - thanks for posting the test. I'll try this. I know that diabetes is unlikely to apply, since I've had a random and fasting glucose test that were normal. I'll bring up the suggestion of an endocrine issue with my doctor. MightyMouse - I used to spend a lot of time walking in the Scottish Highlands. I was certainly bitten by a few ticks, but I never had swelling, or indeed any symptoms, and the last time I went was over a year ago. Thanks for the info. I might as well mention two other symptoms that I forgot earlier: dry mouth and dry eyes. Oh, and I'm sure that I need to urinate a little more frequently than I used to - but not excessively. I've been told that my liver and kidney function from blood testing is normal. I had a quick urine test which was also fine. I'll let you know the outcome - if there is one! Regards, N

Hi all, I'm Noodlemaster, from the UK. Thanks for the information posted on these forums. I'm currently undiagnosed, but I wonder if I have POTS. I've been seeing doctors, but we haven't yet been able to find anything - most are putting it down to anxiety. Perhaps some of you could give me your opinion? I've had the following symptoms and signs for 18 months, coming on gradually: lightheadedness - a "drunk" feeling (I've walked out in front of cars in the road, and into people on the pavement) mildly disturbed balance difficulty concentrating (I was never too good at this! But now it's worse.) very cold hands, feet, nose and lips (they go white, and the capillaries can take a long time to refill) pins and needles in my hands and feet (if I cross my legs, the top leg will soon go numb - noticeably quicker than when I was younger) a feeling of fullness in my stomach and throat when I eat weakness, especially when noticeable when I'm carring bags, or using my hands above my head occasional points of light moving across my vision sensitivity to light and sound mild nausea/motion sickness the need to sleep for longer than normal dizziness when I stand up (for a short time - see below) sensitivity to alcohol and caffeine, it seems an odd sensation when I exercise - it's not lack of fitness (i.e. out of breath or unconditioned muscles), because I know those feelings, it's like my limbs aren't receiving enough "power". It's really noticeable when I climb a flight of stairs. I now feel my heart sink when I know I have to climb stairs! hearing my pulse in my head when I sit up straight if I get hungry I NEED to eat! dark circles under my eyes (I'm less convinced that this sign is related) These symptoms are experienced every day. They seem to vary in intensity from hour-to-hour, instead of day to day, for instance. The most irritating symptom is the light-headed or drunk feeling - this is what stops me from working and socialising in the way that I'm used to. I've had a series of blood tests, and an ECG, with no signs of a problem. I don't have any other problems with my health, that I know of, and I take no medication. The main reason I suspect POTS is because I always have a considerably higher heart rate when I'm standing compared to lying down. Here are some of the numbers (supine numbers are first, standing numbers are second - both taken after a few minutes rest in the position): 60 - 100 47 - 75 50 - 80 47 - 80 46 - 82 63 - 93 My blood pressure doesn't decrease when I stand up. I also seem to have a relatively low blood pressure. I've sat down in the morning and measured it over the last few months. Here are some typical numbers: 102/60, 98/57, 95/57, 100/54, 100/55, 110/54. From what I've read, the changes in heart rate are consistent with POTS. I'm wary of trying to self-diagnose, but I can't see the harm if I keep an open mind. Besides, the doctors are baffled, it's taking ages to get it sorted, and I'm more interested in my health than they are. Do you think that mild POTS is possible? I say mild, because after reading about some of the experiences of others on the forum, my symptoms seem relatively minor. I don't seem to have a particular problem with standing in a position for a long time. My lightheadedness increases when I first stand up, but then it seems to just stay at the same intensity as it was when I was sitting, if you see what I mean. But, this condition is a problem for me - I can't function in the same way that I used to. I'm sure most of you will know what I mean. I can't focus on what my friends are saying to me (I've had people ask me if I'm stoned!). I get exhausted climbing stairs. I have to sit down and try to warm up with a hot water bottle. If I don't sleep for nine hours, I have to catch up during the day. To my mind, the only thing counting against the diagnosis are the fact that I don't seem to become overwhelmed with dizziness when I stay standing. Although I haven't tested this for very long. Do you think I should? I'm male, too, which makes it more unlikely. I'm 6 feet and 65kg, if that's helpful! I don't know of any viral illness that may have triggered this, although I had a girlfriend with glandular fever when I was younger, and I have been in areas with ticks (which could carry Lyme disease). It came on slowly. But it does seem to be gettting gradually worse. I don't like to complain - I'm not in pain, I'm not suffering. But it's impossible to fully describe this to my able-bodied friends and family - they see a reasonably healthy-looking young man, and despite their kindness and patience in listening to me, I know that there is a part of them which is saying: 'it can't be that bad can it? I get tired and weak, too.' I don't blame them - I wouldn't be able to properly understand it either if the situation was reversed. I'm just annoyed that my body worked fine for 23 years and has now started to go downhill - about 50 years prematurely! Rant over. I have an appointment with a cardiologist at the end of this month. I'm going to ask for a tilt table test. Please let me know if you have an opinion on any of this! Thanks for reading, N