Suspected POTS - advice needed!

[cmep37]

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.

[Guest]

I'm waiting for a diagnosis myself, but I definitely don't think it's in your head!!!  In October I was told by a neurologist (that spent a couple of minutes with me) that I was just stressed.  He said I didn't have MS or seizures (tests my family doctor had already done), so that meant I was stressed and had repressed memories because I had a surgery when I was a kid?!?!  How he came to that conclusion is beyond me.  Every time we asked him a question he would say, "That's far too specific" or "That's not my area."  

I'm waiting for an appointment with another neurologist, but started tracking things on my own.  I've realized I need to bring PHYSICAL proof with me to appointments, because just discussing my symptoms is not being taken seriously.   

I got a FitBit, that shows my heart rate goes crazy high when I'm on my feet.  The FitBit doesn't have medical level precision, but it's great for getting a good approximation.  With it I've been able to print out heart rate graphs, which show the same patterns repeating over and over and over again...my heart rate skyrockets when I'm on my feet, and slows to normal when I'm laying down.  Some days the spike is less dramatic than others, but it always goes too high.  I take a screen shot of each day's heart rate graph with my cell, email it to myself, then copy/paste it into a Word document (with notes about what I was doing during high heart rate times) that I'll print out before my appointment.  I have a good month's worth of daily graphs already (that show the exact same pattern).  

And I've noticed that after I stand for any length of time, my feet start to turn a purplish-blue colour.  I thought my leg colour was normal (because that's how it's been for years), until I happened to compare it to someone else's.  We took pics of our legs/feet side by side while standing for 5, and then 10 minutes....in both pics I looked like a bruised corpse compared to my friend.  30 seconds after sitting with our feet up, my feet/legs were way, way whiter than my friend's.  My legs/feet also start to swell up when standing...I got close up comparison pics of my feet (standing vs feet up) to show the difference.  Blue legs absolutely cannot be written off as stress.  I've printed these all out to bring to my appointment.  *I should mention too...my hands do the same thing if I leave them hanging at my sides for any length of time.  

I also get weird flushing.  Sometimes it's my face, but more often, just one ear will suddenly turn beet red and get very hot.  I've taken pics of my beet red ear, with comparison pics that show the same ear when it's normal.  

I'm really hoping all of this is enough to get the diagnostic ball rolling.  My story is actually very similar to yours.  I'm a 37 year old secondary school teacher now unable to work because of the disabling cognitive and physical symptoms I have.  

I really think you need to be referred to a specialist that understands dysautonomia.  On the dinet.org site, there is a list of good, experienced doctors (in different countries). 

xoxo

[angelloz]

First of all, I am so sorry that you are dealing with all of this. I don't know if this is possible for you but if possible I think a second opinion is in order. Many of us have been through the " anxiety ", label. You know your body, how it feels and reacts, trust yourself. The increase in heart rate upon standing is very characteristic but there could be other causes. A tilt table test would be a great place to start if your doctor is willing.

[Lily]

You definitely need to see a different doctor, preferably a dysautonomia specialist.  I think it is reasonable and intellectually honest to consider if there might be a psychological component, but dysautonomia proper is physical.

Hypermobility:  If you have joint hypermobility or Ehler Danlos Syndrome, your veins might also be "hypermobile," or stretchy.  They stretch too much and allow blood to pool in your feet instead of circulating.  The veins can't contract enough.  There are also other physiological things that can go wrong, other mechanisms that lead to the same symptoms.  Like Draven said, do your feet turn red/purple/blue and/or do your veins fill up and distend when you stand?  Is not normal!

Things I was told to do to feel better:

1. Extra water AND salt.  I see recommendations of 3 liters and 2 to 10 grams of salt per day.  The salt helps the water stay in and not get peed out.

2. Compression stockings, 20-30 mmHg if waist high, 30-40 mmHg if thigh high.

3. Sit with feet up, or legs crossed, or tensing your leg muscles.

4. Exercise, specifically cardio against resistance (stationary bike, elliptical trainer, swimming).  Weight training if/when you can handle it, too.  The idea is to make your legs stronger and more able to help your poor deficient veins to pump blood.  Do what you can, but also push yourself to go longer and do higher levels of resistance.

[Katybug]

I'm at a big appt so will write more later but the reference to Hypermobile type is because that is the most common sign of Ehlers Danlos Syndrome ( EDS) which is a common underlying cause or comorbid condition of dysautonomia.  

 

You're not having a psychological problem. Many of us were treated this way because docs don't like to admit that they don't understand some conditions. This is a rare condition and most average docs don't have a grip on it.

[dancer65]

Hi 

I Agree with the others this is not all your head! I like many others here  have been labelled neurotic etc in the past. 

I too think you should seek a second opinion and have a TTT.  I have fought really hard to get referered to a POTS clinic in London after my TTT was positive, I recently attended and it really helped mentally to be acknowledged and I am hoping the new meds will make a difference to my daily function . I too have Cfs ME and it is common to have POTS as well

I know it is exhausting to keep pushing to get a diagnosis but keep going as finding  the right treatment can help and however small or slow the improvement is it is worth it in the end. 

Wishing you all the best

 

[cmep37]

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. 

 

 

[TCP]

Hi cmp37

 

Firstly let me say how sorry I am to hear your story. Secondly it has many similarities with mine. 

Your symptoms are not psychological. 

I have EDS only diagnosed a few years ago and I'm in my fifties. I had ME diagnosed 8 years after contracting glandular fever in 1984. I had POTS diagnosed last year. I also have widespread neuropathic pain. I believe I also have Mast Cell Activation Disorder caused by the glandular fever and that brought on autonomic dysfunction or the ME symptoms.

My EDS symptoms weren't very apparent with just a few dislocations before 1984. No one else has it in my family and only IBS being a familial link. 

I see a cardio who is experienced in POTS and I take a low dose of Ivabradine. He set me drinking 3.5L of fluid a day. I also exercise starting with lower leg building and also the core area. 

A rheumatologist diagnosed EDS but only offered physio. You don't have to dislocate to get diagnosed. Have you checked out the Beighton Scale?

The Neurologists were all clueless about anything and refused to help with the neuropathy. I take Gabapentin and Nortriptyline for the pain. 

For MCAS I take supplements, low histamine/anti-inflammatory foods and it is helping me a lot. I follow Yasmina Ykelenstam on her website as she has had many of my symptoms. I have had multiple issues with foods and meds and that's been a strong indicator for MCAS. 

I hope you can find someone to help you and you're already clued up about a lot of it. To be honest, I've had to do more for myself than anything as doctor's can only do so much. Diagnoses are important and if treatment is offered then take it. I've found being proactive is the best thing. 

Good luck!

[corina]

Hi cemp, welcome to the forum. I'm sorry your doctor ist not very cooperative thinking your problems are psychological. I think it would be very worthwhile to ask for the TTT or (perhaps even better) a second opinion. In London is Dr Mathias (not sure if he's still taking on patients) and his specialized clinic so if you are able to travel there that might be the best place for you to go. I have checked our Physician's list for you but we have no one listed in Ireland (which doesn't mean there aren't any of course!). Hope you will find answers!

[jknh9]

It's so frustrating to get the "It's all in your head" non-diagnosis. I know many of us on this forum have been there--I can't tell you how many times I've been told "Just calm down. Just do deep breathing. Try meditating and you'll be fine. Just do ____ and you'll be 100% OK!" But you know your body, and it certainly sounds like it is not all in your head! 

I agree with those above who have suggested the TTT. For me, it was a smoking-gun POTS diagnosis and also gave the doctors insight into other issues I have, such as neuro-cardiogenic syncope. Best of luck finding someone who knows about dysautonomia in-depth.. I wish I could offer some names, but I'm on the other side of the pond. Distance aside, though, I'm rooting for you. 

[Katybug]

EDS is not ruled out because you don't see the characteristics in your family members. Also, Marfan Syndrome is another connective tissue disease that can cause dysautonomia.  If you have a Marfanoid body, I really encourage you to see a geneticist or rheumatologist familiar with these two syndromes. I had never dislocated anything prior to my EDS diagnosis.  I also took things as normal that are not actually normal in the general population but are not really obvious things you would notice. For example, I apparently have a remarkably high palate but I don't look inside other people's mouths often so never knew there was a difference between mine and their's.  Also, the Hypermobile type of a joint  can be hard to identify if you don't dislocate. For example,  my elbows and knees don't necessarily flex backward enough that it would draw your attention,  but when the angle of my joints is measured, these joints are several degrees more obtuse than they should be. If a doc who was this forward about the fact that he doesn't think there is a physical problem noted the Hypermobility, I would think it's worth pursuing.  Also, there are complications with EDS and Marfan that make it important to know if you have it. And, as TCP stated, it's not unusual to be diagnosed with these as an adult.

Edited April 7, 2016 by Katybug

[cmep37]

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!

[Katybug]

A great site for information and resources on EDS is www.ednf.org . They also have an international forum and a large membership. You may want to get on there and ask if there is someone in Ireland that can point you to some good physicians  (and if you find some, I would love to have their names so I can add them on the physician list here! )

[cmep37]

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.

[dancer65]

Well that sounds really positive steps forward, so pleased for you! 

 

[Katybug]

Cmep37, 

I'm sorry this has been such a twisted situation.  Maybe it's worth having the test and doing at least one follow up to get the results?? It sounds like all was not lost on the cardiologist, although I totally get not wanting to see him again.  (I just told my geneticist at our appt yesterday that there is a doc she suggested I see but I don't want to because it is his research from 20 yrs ago that is a major reason Lyme patients are held back from treatment today. He has now started treating "chronic Lyme patients" but won't call it that and it makes me mad. But he might be the guy that can help me, so at some point I may have to swallow my pride and just go. But I don't want to.)

Edited April 9, 2016 by Katybug
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