cmep37

Sorry forgot to finish this sentence! Anyway the optometrist suggested it could be caused by compression of one of the cranial nerves. I know there is a theory that some cases of POTS are linked to high intracranial pressure which could compress cranial nerves. Or my very lax neck due to hEDS could also be compressing a nerve. Does your focus on an object improve after blinking? For me blinking seems to very temporarily reset the wandering eye and allow me to focus although it's only a few seconds until it takes off again!

I was pretty much bedbound like your wife for about 2 years - I didn't know I had POTS at this time ( I'd been having symptoms since I was a teenager but I didn't even know POTS existed and my symptoms were dismissed by doctors as anxiety or depression or just pure laziness!) Any day I felt a little better I would try to do too much (and at times too much could be as little as having dinner out of bed) and then I would spend days or weeks or months recovering before doing exactly the same thing! What helped me get out of it? Recognising this boom and bust cycle and forcing myself to do the same thing every day, regardless of how good or bad I felt. Doing small amounts of exercise multiple times a day to recondition my muscles. Modafinil (Provigil) gave me a bit more energy to allow me to start this exercise programme although I stopped taking it after a few years as the benefit had worn off. I did all this before finally getting a POTS diagnosis about 4 years ago swiftly followed by a hEDS diagnosis and a lot of my symptoms now make more sense to me. I'm still pretty much housebound as I did not respond well to any meds and unfortunately the UK does not support the use of IV fluids for POTS except in emergency situations. I use waist high compression, vast amounts of fluid and salt and try to do as much exercise as I can tolerate but I still get flares when I'll be stuck in bed for a bit again. My GP tells me it's a marathon, not a sprint - tell your wife not to give up hope! And please be kind to yourself - it can be very difficult caring for someone in your wife's situation so make sure not to neglect your own physical and mental health!

I have alternating exotropia caused by either POTS or hEDS (the optometrist wasn't sure but I've definitely developed it as an adult rather than never growing out of it as a child). It's basically when one of your eyes wanders outwards rather than looking at the object you're focusing on and in my case it alternates between eyes - the eye that wandered changed several times during my eye exam. It means my vision blurs or I get double vision, I have problems with perception of depth and distance and it is much worse in the evenings or when I'm tired. I'm not sure if this is the same thing as heterophobia or not! The optometrist mentioned it could be caused by I also really struggle with dizziness in a car on a motorway - I can only cope by closing my eyes, so needless to say driving is out for me.

I get throat spasms like you describe very occasionally - weirdly they seem to affect the right side of my throat more than the left. I also have problems with food sticking in my throat after I've swallowed. I mentioned both issues to my gastro and he sent me for a barium swallow test - when it didn't show anything alarming we agreed they were probably caused by hEDS.

Thanks very much Pistol - I will give them a go!

I get that short of breath feeling and sore throats that have no infectious cause. That feeling of not being able to get enough air is a major indicator that my HR is too high and I need to sit down. It's really interesting that exercises have helped your sore throat Pistol - I know my neck is really lax (my suboccipical muscles are rock hard) and my ribs sublux a lot. Can you describe what sort of exercises you do or is it a case of needing a physio to show you?

Thanks for your reply Pistol and I'm sorry to hear of your problems. I've had what I now know is POTS since I was a teenager (I'm now 41) although I was only formally diagnosed about 5 years ago. I have had several Holter monitors over the past few years which showed sinus bradycardia but no arrhythmias - my cardiologist didn't seem concerned when I discussed it with him when I last saw him although it was much less frequent then. He seemed to think it was just a different way my ANS was malfunctioning - my parasympathetic system was overactive in the evening. However I have noticed a tendency by all my healthcare providers to blame everything on POTS/EDS! I've never had an echo - when I suggested one my cardiologist said he didn't see the need! I will ask my GP for an urgent referral to my cardiologist although with the delays caused by Coronavirus I'm not holding out much hope! I wonder if it might be connected to vagus nerve problems - when my HR gets over about 120BPM and there is food in my stomach I get extremely nauseous and then retch violently until I vomit (usually only a mouthful) and then I'm OK. The gastroenterologist I saw thinks that my vagus nerve is stimulated by my high heart rate and I have read that sinus bradycardia can be caused by an overactive vagus nerve. However I've had the retching problem for nearly 5 years now and the bradycardia is only getting worse so maybe not.. My other thought was whether it could be linked to perimenopause - as I said I'm 41 and am probably approaching that milestone!

I've had POTS for 20+ years and my pulse pressure is always around 20 when standing. My standard BP reading after standing 5 minutes is 100/80 whereas lying down it is 100/60. When I'm in a flare it is usually about 15 and I have seen it as low as 11 so pressures of 18-21 wouldn't worry me!

I have POTS (I'm not on any medication as everything I have tried has either had no effect or the side effects were worse than the symptoms). My cardiologist has told me there is nothing left for me to try so I am just managing on increased fluids, increased salt, support tights and as much exercise as I can manage. My average heart rate after standing for 5 minutes is 140+BPM. I've always had the odd evening where my resting heart rate would fall around 7PM but in the last 6 months this has gone from happening once a fortnight to every evening. Now my resting heart rate which during the day is normally mid 60s drops around 7PM to mid 50s, by 9PM its high 40s and by 11PM it's low to mid 40s. I start getting symptomatic when my pulse is around 50BPM - I'm short of breath, dizzy and very tired and as my HR drops to low 40s I also lose feeling in my hands and feet. I think my HR drops even lower when I am asleep as when I do get to sleep I'm constantly waking up with a jolt of adrenaline yet my pulse is still low 40's . When I stand up, POTS kicks in and my HR rises but I can't sleep standing up! My blood pressure is also lower than usual although not awful - at night it's usually around 89/50. I have tried taking a walk late evening to try to get my HR up - that hasn't worked, I've also tried drinking coffee at 9PM - it works for about an hour but then my pulse drops even lower than usual. My GP says that in other patients she's be starting to think about a pacemaker but from what I've read it's not recommended for POTS patients. I haven't got an appointment with my cardiologist for another 6-9 months (I'm in the UK and all appointments have been delayed by coronavirus). Has anyone any similar experiences or any ideas of what I could try?

I saw the gastro yesterday and at least he didn't tell me my symptoms were all psychosomatic. His main comment was that he was a bowel specialist and that he didn't really know why I'd ended up being referred to him as my issues are more upper GI related. He's ordered an ultrasound of my abdomen and an endoscopy plus blood tests for celiac and vitamin deficiencies. He said when all those results of those are back he'll see me again but in the meantime to stick with the Ondansetron since it's keeping me from vomiting.

I think a lot of the problem stems from the public perception of all mental illnesses - people with depression just need to think happy thoughts, people with anxiety just need to relax a little. Until things change there will always be a stigma attached to mental illness. I do worry that given there is such a low awareness of dysautonomia that calling it a mind-body disorder will lead to it being seen as something which isn't a "proper" illness. The public (and even some medical professionals) hear mind/body and believe that means we could improve our health if we only thought positively and tried harder - I wish! I do think it's important to recognise the psychological symptoms dysautonomia can cause but it's also important to create awareness amongst medical professionals that symptoms which may appear psychological such as excess sweating, tremor, palpitations, nausea etc. can also have a physical cause. If I had a pound for every medical professional who told me anxiety or depression was the reason for my symptoms even after I'd been assessed by a clinical psychologist and been told I was no more anxious or depressed than the average person I'd be rich now!

This has been such a hard but good thread to read. Hard because I know exactly what you're going through and I wouldn't wish it on my worst enemy. Good because I feel less alone. Someone said on another support group that you have to come to terms with your illness every single day when you wake up and just because you coped with it yesterday doesn't make it any easier to cope with today. NavyBlue I know that hearing someone tell me my problems are psychosomatic is devastating, especially someone medical or someone close to me both of whom I think should know better! I've got a gastro appointment next week and am dreading them saying that to me. Amelia I'm so sorry I don't have any quick fix answers for you but I know what helps me is finding something that I can still enjoy however ill I feel. For me it's reading (I can no longer read anything literary as I don't have the concentration span so I often read books aimed at teenagers!) but it takes me away from my own problems into another world for a bit.

Sam, it was a very sceptical cardiologist who initially told me my problems were psychosomatic but later agreed that I have a lots of symptoms suggestive of POTS, dysautonomia and joint hypermobility syndrome. Before that I had a diagnosis of ME/CFS and fibromyalgia and for 13 years I just tried to get on with things thinking there was nothing I could do to help myself beyond pacing, doing whatever light exercise I could manage and making sure my diet was good. After my appointment with the cardiologist, I tried to talk to my GP about dysautonomia but he said he'd didn't know what it was, never mind know if my symptoms were related to it and after getting him to ask round the other GPs in my practice, none of them are any better. My GP is lovely, and believes there is something physical wrong with me and so I've no desire to change practice given that awareness of dysautonomia in Northern Ireland is very low. I've been referred to see a rheumatologist who specialises in joint hypermobility and for a TTT but the wheels of the NHS grind very slowly and it could be months before I see anyone or get any results. Believe me, I have no desire to take medication I don't need - for years all I have been taking for a list of symptoms as long as my arm is co-codamol for pain. I could deal with the nausea associated with slow digestion without the Zofran as I've had that for years but without taking it for the nausea associated with my heart rate speeding up I can keep nothing down. Before my GP prescribed it I had lost 10 pounds in three weeks (my BMI is normally around 19 so I'd fallen into the underweight category) and I was vomiting after just drinking water. I periodically try to stop taking Zofran to see if I can manage without it but after 2 or 3 days of being sick after every meal I always have to start again. I would love it if it made me drowsy - I have terrible insomnia and sleep problems! I've been taking probiotics for years but they haven't made any difference to my nausea - excuse my ignorance but are digestive enzymes the same thing? ChristyDrake thanks for telling me about your son and that he did find medication to help a bit - I've only left the house 4 times in the last 5 months, all of which to attend doctors appointments and I'm getting to the end of my tether...

Since hearing the word dysautonomia for the first time a fortnight ago I've been reading about it and have realised that my nausea is definitely related. I was referred to a gastroenterologist and have finally got an appointment (I've been waiting 18 months!). I think my nausea is 2 separate problems:- 1) Nausea related to orthostatic issues/POTS. About 30-45 mins after I eat (and it doesn't have to be a big meal a slice of toast is enough) my heart rate and temp spike unless I'm lying down. Sitting down even with my feet up isn't enough, my heart rate will still reach 120ish. Once my heart rate reaches 120ish I start to retch. If I don't take Zofran/Ondansetron I'll retch until I'm sick, with the Zofran I don't vomit, just retch. If I am sick the food is barely digested (sorry to be disgusting). 2) Nausea related to gasroparesis. I'm never hungry, full after I've eaten a couple of bites, have problem swallowing food or drink (it kind of sticks in my gullet) and about an hour after eating I feel sick. It's a milder kind of nausea than the first type related to my heart rate, I never retch but I feel very queasy for a couple of hours and it's worse if I eat anything heavy or rich. Even to me, this sounds completely ridiculous when I see it written down - after my experience with the cardiologist who told me it was all in my mind I'm reluctant to get another pyschosomatic diagnosis. Is there anything I can do to make myself seem more convincing? And does it sound like dysautonomia to you?

Really glad you've found some-one who's able to help you - hopefully things will start to improve for you now.

When I was first ill I was given an CFS diagnosis and persuaded my GP to prescribe Modafinil (Provogil) to try to improve my concentration. I was mostly bedbound and it was the first thing that helped me. It wasn't so much that it helped my brainfog (although it did) but it seemed to help reduce my level of fatigue. I never noticed any major effect on my heart rate. The effects didn't last forever (6 months ish) but they did last long enough for me to start an exercise programme (initially from bed) which helped.

I've just got the report back from the cardiologist and I'm wondering if I was at the same appointment. The report makes no mention of him telling me it was psychosomatic or psychological - instead it talks about how I may have joint hypermobility syndrome, POTS and dysautonomia. He has referred me to a rheumatologist specialising in EDS and arranged for a tilt table test and MRI. He asked my GP to carry out some more blood tests. All perfectly reasonable! So why did he tell me I'd caused my own illness - can you make your own central nervous system malfunction? Or does he think these illnesses can't cause the levels of disability I experience? At any rate I feel a complete fool for ringing my GP yesterday and complaining bitterly about him. I still never want to set eyes on him again though so I'm not sure where that leaves me. I've also got an appointment to see a gastroenterologist (it's completely coincidental, I've been waiting 18 months!) and from reading more about EDS and dysautonomia I think my problem is gastroparesis - when I am sick after a couple of hours the food has hardly been digested. So many pieces of the puzzle are clicking into place for me. Katybug the consultant rheumatologist suggested is Dr Adrian Pendleton who works out of the Royal Victoria Hospital in Belfast - I just hope he's more sympathetic than this guy was. I've also heard very good things about Dr John Purvis at Altnagelvin Hospital, Londonderry who specialises in POTS and who was the consultant I really wanted to see.

Katy and TCP - that's all really interesting - I really thought you needed dislocations to have EDS. Having read a bit more about EDS I think there is a family link although undiagnosed - despite not being hypermobile, my Mum has bad osteoarthritis in her shoulders and wrists despite only being in her 50s, is short-sighted and had a hernia in her early 30s. My brother had bad "growing pains" in his knees as a child. Mum's brother has been told he has scoliosis of the spine and has a hernia and Mum's sister has fibromyalgia and osteoarthritis. My Mum's Dad died young of cancer when she was 9 so it's hard to know if there was any history there. My palate is also very high; I had a retainer on my teeth as a teenager and everyone who saw it remarked on that. I know what you mean about thinking you're normal when you're not - I have a lot of stretch marks despite never having been pregnant and papery scar tissue on my knees from cuts I had as a child which I always thought was normal until I started reading about EDS. I've had a look at the Beignton scale today and I score 4 - I would have scored 5 in my teens and early 20's but I can no longer touch the floor with my hands. I'm trying to find someone in Northern Ireland with any knowledge of EDS - hopefully I'll have more luck than with the cardiologist!

Thank you so much for the replies. After yesterday I was really starting to doubt myself and I'm worried my parents think it's just anxiety now (they are very big on respecting authority figures). I have been prepared to consider a psychological cause - when I was first diagnosed it was me who asked to see a psychologist for an assessment to see if he thought my illness was psychosomatic - he didn't. He recommended CBT sessions to help me come to terms with my situation which the cardiologist seemed to see as evidence he thought it was all in my mind. Draven- it's a family joke that my feet look like they belong on a corpse - they are a grey/purplish colour when I've been standing and will swell a bit. Worst time for this is after I've been in the shower even though I use a seat. Katybug - I've gone away and read a little about EDS but neither of my parents, my brother nor any living grandparents are hypermobile and I've never dislocated anything so does that rule that out? I do have stretchy skin and a marfanoid body shape. Lily - There seems to be no-one in Northern Ireland who deals with dysautonomia - I was told that my first choice cardiologist who was mentioned on the POTS UK site wouldn't see me on the NHS as I wasn't in his Trust area and wouldn't see me privately as the private hospital he worked out of didn't have tilt-table facilities. I'm now wondering if I should get the tilt done with the cardiologist I saw yesterday and then see the other cardiologist privately for a second opinion.

Hi, I'm new here and I'd really appreciate some advice. My name's Cheryl, I'm 37 and I live in Northern Ireland. Apologies in advance for the lengthy post! I was diagnosed with ME/CFS and fibromyalgia 13 years ago and at my very worst was bedbound for 3 years although through pacing I had improved to the point where I could take a short 5 min walk and leave the house for a couple of hours once a month. Just before Christmas I suffered a serious relapse in my symtoms and am now housebound again. My main symptoms are faint/dizziness, palpitations, weakness, fatigue (I need a 2 hour lie down every afternoon), pain (joint pain in my knees and lower back, a burning ache in the muscles radiating from my shoulders, knees and hips and muscle spasms in my shoulder and lower back), nausea (it's worst at lunch but I have weeks where I retch uncontrollably after every meal unless I am lying down), sleep disturbance (I rarely sleep much before 2-3am and the first couple of hours after that are very disrupted), headaches, a tremor in my hands, a strong awareness of my pulse beating in my stomach, hands and chest, poor temperature control (I'm either too hot or too cold, there is no in between), poor concentration and memory and swollen glands in my neck, armpit and groin. About 6 weeks ago I read an article about POTS being frequently confused with ME/CFS and approached my GP. He had never heard of POTS but was happy to put me on a 24 hour Holter monitor which showed numerous episodes of tachycardia which all correlated to me being upright - my pulse was 178 when I was standing doing the dishes and 135 walking to the bedroom from the lounge. My resting pulse was 68-72 but when i was seated for longer than 30mins it was more like 85-90. I also had a 24 hour blood pressure monitor which showed my blood pressure was normal when i was tachycardic (113/70)( but low when I was lying down (85/55). My 24 urine sodium was 47 and all blood tests were normal. My GP referred me to a cardiologist who I saw yesterday. It seemed to me that he basically decided inside the first 2 minutes that my problem was psychological when he noticed a tremor in my hands. They do shake after I've been standing or sitting for a long time and I'd been sitting in a car for an hour and a half to get to his office. He asked me about my symptoms and medical history. I explained that it was gradual onset - I had problems fainting in school assembly when I was pre-menstrual as a teenager but had thought it was gynaecological as I had endometrosis. I explained I had glandular fever at university and after this had never the same levels of energy and had symptoms when pre-menstrual. I said over the next 4 years my symptoms varied until 2002 when I was in a very high powered job as a solictor for one of the largest law firms in London working long hours and got a virus I never seemed to recover from. When I went to my GP and mentioned palpitations they immediately told me it was stress and anxiety and prescribed anti-depressants wheich didn't help. When I went back to work after 10 weeks sick leave I realised I wasn't capable of my job any more so left and went to work in a smaller firm of solictors with shorter hours - I lasted 4 months there before having a complete collapse and being diagnosed with ME/CFS and fibro. I saw a neurologist who ruled out MS and then said they couldn't help me and also a psychologist for a few sessions of CBT to help me come to terms with my ME/CFS diagnosis - he told me he didn't think I was depressed or particularly anxious and suggested I come off the anti-depressants I had been taking which I did without any adverse reaction. I said that whilst ill I hadn't given up, I did voluntary work from home for a local charity and i travelled to the UK to visit my godson a couple of years ago although the trip took me 4 months to get back to where I had been. He listened to all this and told me that whilst I showed signs of dysautonomia he though my main problem was psychological - basically he told me I'd made myself ill because I didn't want to work in a high-pressured job in London any more and couldn't tell anyone that but no-one could blame me for leaving if I got ill. Which is so not true - I loved my job, I was good at it and at any rate I gave it up and went to work in a smaller firm before my complete collapse. And how he could determine this after speaking to me for 5 minutes I don't know! I'm not even sure if he diagnosed me with POTS or not - he never specifically told me whether or not I had it, described what it was or what causes it. He told me I needed to see a rheumatologist as I had a very high degree of hypermobility - but he didn't explain how that was relevant or how it would affect me. He sent me to have an ECG – while I was doing that my parents who were with me said he looked stuff up in books and online. My mum asked him if he specialised in POTS – he said no. I asked him what I could do to get better - his response was that I needed to try harder and to stop thinking of myself as ill. I asked about changes to my lifestyle - he said increase fluids. I said I already drink 2.5 litres a day and did he mean drink more than that - he said no. I asked about salt - he said he didn't believe it helped. I asked about compression garments - he said they wouldn't work. I told him I did 30 mins of gentle stretches and exercises lying down every day and aasked if he could recommend any other exercises and he told me that I should stand against a wall for 5 minutes 10 times a day. I told him that every time I stand for 5 minutes I either faint or retch - he told me ignore that and to keep trying! Everything I’ve read about POTS says you need to build muscle in the leg – surely standing still would only encourage blood to pool in my feet and not build any muscle. I asked if I could have a tilt-table test - he said he didn't think it would show up anything new but that I could have one if I wanted it. He said I should take venlafaxine – an SSRI anti-depressant which he said would help my sleep and make me feel better. I told him I’d tried it when I was first diagnosed and it didn’t help then and I didn’t like the way it made me feel numb. And that was that..... I came home and cried. So please tell me (if you're still reading this!) - is he right? Is it all in my head and do I just need to try harder and if so how cos I've been trying as hard as I know how for 13 years and I'm still very ill. Has anyone any idea what hypermobility has to do with anything? Or where I should go from here? Sorry for the ramble - I'd be very grateful for any advice.