Dysautonomia Appointment

Newcastle-upon-Tyne has a leading ME/CFS Research centre (see their Facebook page) based in the Biomedical Research Building at the site of the former Newcastle General Hospital, now the Campus for Aging & Vitality.  The Research is headed by Professor Newton, who specializes in fatigue (see their fatigue research website here) and the autonomic nervous system in particular Postural Orthostatic Tachycardia Syndrome (known as POTS).

During my early years of M.E., when I was severely affected, I had huge problems with Orthostatic Intolerance, ie. an ability to sit or stand upright without feeling dizzy, ill or fainting.  Thankfully as my M.E. has improved, and in particular the past 2 years as I’ve been able to start walking again, my ability to remain upright without wanting to pass out has improved substantially, at least in the early part of the day although I tend to go downhill mid-afternoon.

However, I’ve developed new problems with my heart beating irregularly particularly after eating and when changing from sitting to lying down, and due to my age, my long years of inactivity, and the fact that Ehlers-Danlos can cause heart issues this needed to be investigated.  I feel like my heart skips a beat, then I get a strong pounding beat, which causes the veins in my head to throb!  It’s quite unpleasant, even though I’m sure it’s nothing much to worry about.

Since contracting meningitis in 1996 I’ve also had constant, painful, pins & needles in my hands and the soles of my feet which I suspect may be peripheral neuropathy.  The sensation doesn’t come and go, but does have days where it’s more intense than others.  No-one has ever explained what this is and any doctors I’ve mentioned it to have just looked blankly at me and moved swiftly on!

So my appointment at the POTS clinic today was to address my heart rhythm abnormality, my pins & needles, and to assess whether I still have POTS or OI.

I had a short ECG done, which measures electrical activity in the heart.  This was normal (it always is!), but being as though my heart is usually worse after eating and in the evening when I’m relaxing Professor Newton decided that 24 hour (or longer) heart monitoring was needed.  She thinks I’m suffering from Ectopic heartbeats, which are usually benign and nothing to worry about, but we still need to know for sure.  She is referring me to my local hospital to have this done, so I’ll just have to wait for an appointment.

My pulse and blood pressure were measured both lying down for 5 minutes, then standing for 5 minutes.  All was fine and there was no substantial drop in blood pressure or rise in heart rate which would indicate POTS.  I didn’t expect anything to show up because I’m always at my best in a morning (my appointment was at 10am), but get progressively worse as the day wears on (it’s now 3pm and I’m in bed because being upright makes me feel rubbish).  The 24 hour heart monitor also measures blood pressure, so I’m hoping that a more accurate picture of any orthostatic issues will show up on that.  As it was, because my 10 minute test was fine Professor Newton didn’t think there was any need for a tilt table test (the gold standard test used to diagnose POTS).

We discussed my pins & needles and Professor Newton had no idea what the cause was.  So she’s referred me for an Electromyogram and nerve conduction test which measures the electrical activity of muscles.  I’ve heard that this test can be excruciatingly painful, so the thought of having one doesn’t do much for me!  However, I need to know what’s happening with my nervous system so I’ll just have to grit my teeth and get on with it.  Luckily this again can be done at my local hospital.

At the end of the appointment I was asked if I had any questions.  I told her about my chronic low blood pressure, and the fact my diastolic pressure becomes ridiculously low during menstruation which makes me feel absolutely crap.  She said that because I had a very ‘clean’ vegetarian diet and don’t eat processed food I wasn’t getting enough salt and I needed to increase that, but didn’t tell me how or by how much.  I was also told to drink 2 litres of water a day, which just made me laugh – the combination of permanent piddling due to my MCAD and the stretchy bladder of my EDS would make drinking that much water impossible without being permanently glued to my loo!  I just nodded politely and thought “dream on ” to myself, even though I know the advice was correct.

I’m not entirely sure what I thought today’s appointment would be like, but it was nothing like I’d imagined.  She’d read the notes sent by my GP and Consultant, but asked me nothing about my illness history or really anything about my symptoms, which I found quite odd.  And I did think it would take more than a 10 minute blood pressure reading to determine if I had some kind of dysautonomia!  But she’s the expert, so you have to trust her judgement.  The appointment must have lasted a massive 8 minutes from start to finish and I felt rushed, which made me feel flustered.  I thought at least I might get to talk to her about my EDS and MCAD, and how I feel these tie in to my M.E., but there was zero opportunity or time.  Worth travelling 180 miles for?  Time will tell.  At least all the staff, including Professor Newton, were really nice (well, apart from the receptionist who looked like her face would crack if she smiled) which trust me when I say is unusual because over the years I’ve met more stony faced, miserable, disinterested and arrogant medical staff than you can shake a stick at 😉

I’ll keep you posted on the tests as and when I hear anything.

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15 thoughts on “Dysautonomia Appointment

  1. Chris Heppner

    Sorry the appointment was not more satisfying! But she is a busy woman. I have had an EMG, and the administering technician was a delightful young South Asian woman–as a male, I found the whole experience fun–even flirtatious–and though I did say “yikes” a few times, I did not find the pain seriously disturbing. Hope you have an analogous experience! Chris

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    1. bertieandme Post author

      It’s reasurring to know you found your EMG not too bad Chris – I’ll keep my fingers crossed for a technician that looks like Hugh Jackman 😉

      I wasn’t necessarily dissatisfied with the appt, I think it just wasn’t what I expected really and it all went by in a foggy blur with me not really knowing what was happening (I was so rushed I didn’t even have time to put my belt round my dress after having the ECG done so walked out of the hospital with my belt loops dangling!). My brain fog makes me slow to think at the best of times, so being rushed made my brain totally freeze. Maybe I thought the clinic deals with a lot of older people so they’d make more time so I could think more clearly. Everyone was very nice though.

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  2. Lindsay

    I’m surprised they didn’t think it was worth a tilt table test. Your symptoms of orthostatic intolerance are very similar to mine with POTS. There are many journal articles suggesting POTS, MCAD and ME/CFS may be related, so probably worth testing. I hope the 24 hr monitor gives you some answers!

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  3. POTSNJ

    I wish she referred you for official autonomic testing, given your symptoms and especially your ME/CFS and EDS diagnoses. I don’t think 5 minutes standing is long enough to rule out POTS or other forms of dysautonomia. On my first TTT, I didn’t have the required heart rate increase until minute 8 or 9. Plus autonomic testing is more involved than just a quick standing heart rate and BP test. I would suggest when you do the 24 hour monitoring, you keep a log of what you were doing, what position you were in etcetera, so you can maybe match up results with activity and get clues that way. If the EMG is clean, maybe look into Small Fiber Neuropathy. EMG won’t pick it up. I’m surprised she didn’t mention it.

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    1. bertieandme Post author

      Thanks for the advice – I’ll definitely keep a record of my activities when doing the 24 hr ECG, that’s a really good suggestion 🙂

      I was very surprised at the appointment too I have to be honest. My friend has been there and her appt lasted wayyyyy longer than mine. And she ‘only’ has ME, not EDS or MCAD which as you say are often both associated with POTS.

      Jak x

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  4. Elizabeth Milo

    I’m surprised you’re not more annoyed. Any new appointment that only lasted 8 minutes would have me screaming, but you’ve already pointed out that I’ve been lucky with my lengthy consults, so I’m sorry this is the norm for you
    Regarding the TTT, I so regret mine, that maybe, just maybe, it’s a good thing she didn’t want you to it. I lost all feeling in my arms and legs while lying flat the point that it was painful. When they raised me, my BP dropped, my feet pooled painfully with blood and I had to stop after some time because I started get the sweaty tunnel vision that made me think I might black out. None of that was bad, though. I thought the test was pretty easy– and then spent two weeks in hell that I couldn’t figure out and didn’t really get back to pre-TTT functioning until about 3 months later. I have no explanation for the payback. And, joy, the neurologist said there was nothing wrong with me. He did the same lying and standing BP and HR tests in his office to prove it. And then told me to eat more salt. Don’t put yourself through it, I say! X

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    1. bertieandme Post author

      Thanks Elizabeth, and you’ve actually confirmed what I already thought re the TTT. I’m convinced it would have set off a mast cell reaction, and to be honest even if I had been offered one I would have refused. All my friends who’ve had them done have said “oh, it was fine don’t worry” but they don’t have MCAD! I had to be blue-lighted to the Emergency room after a 3 minute chiropracty appointment once – I just don’t do well when the equilibrium in my body is disturbed. I’ve also spent months in bed following acupuncture, reflexology and cranial osteopathy – my body just doesn’t like anything like that. It’s good to hear someone else say what my gut instinct was telling me x

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      1. Elizabeth Milo

        This is interesting because I never thought of it as caused by my mast cell issues. I, too, did not do well with chiropracty or acupuncture and I had one of the worst headaches of this last year after cranio-sacral therapy AND I just realised my horrific migraine this week came after hydrotherapy where she did cranio-sacral stuff at the same time! So, it’s simply our bodies don’t do well with the equilibrium disturbed? I’ve been convinced that, because I don’t move, I need these treatments to move stuff for me (blood, fluid, lymph, lactic acid etc.). Maybe losing my insurance in a month will be a god-send because all those treatments will go with it.

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        1. bertieandme Post author

          I didn’t know my awful reactions to physical stimuli was MCAD at the time. I just thought it had made my ME really, really bad. But the response was the same to all the treatments, just to varying degrees: drop in blood pressure, leading to tachycardia, pain *everywhere*, pins & needles, followed by muscle spasms, vomiting and extreme fatigue. I now know this is grade 2 or 3 anaphylaxis (see here for grades and symptoms http://www.allergy-clinic.co.uk/documents/medical-articles/Managing-Anaphylactic-Shock-Journal-of-Modern-Pharmacy-2006.pdf) and I’m absolutely sure caused by a mast cell reaction. Mast cells in some people are triggered by physical stimuli.

          Hope that makes sense – had another root canal this morning and my brain is totally fuddled! x

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          1. Elizabeth Milo

            Makes total sense, although I don’t think mine were anaphylactic-type reactions (the saline IV did that, though).

            Sorry about another root canal! Ahh! The worst. Rest up. X

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  5. Julie

    Went to see Professor Julie Newton on Monday in Newcastle. I didnt need the tilt table test apparently, am being referred to sleep clinic. Gave blood for new trial comparing blood with ME people, controls (normal) and srogens syndrome patients, then took funny turn, probably due to giving blood. Anyway asked to see Prof again and said not sure all this down to needing sleep clinic. Put in side room to recover lying down for half hour, then sent home. Will still do sleep clinic
    ic though I guess.

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    1. bertieandme Post author

      Hi Julie

      Must admit I was a bit disappointed with my appt with the Prof too. Not sure just standing still for 3 mins tells them definitively whether or not you have dysautonomia of some kind!

      I had my appt in June and was told I needed 24 hr blood pressure/heart rate test done. Had that at local hospital and then heard nothing for 4 months. Emailed them and got no reply. Rang them in Nov (6 months after appt) and told “all was fine or we would have contacted you but I’ll check and ring you back” but of course no-one has. I had this test done because I have symptoms for which no explanation has been given!

      I’ve had the sleep study done in Newcastle. If you have it in winter take plenty of clothes to sleep in – I had 1 blanket on the bed and slept next to a massive window with a metal frame – was so cold my teeth were chattering at one stage!! My study showed my sleep was absolutely rubbish. The explanation from the snotty neurologist was “well, you have ME what do you expect?” and that was the end of that!

      Let me know how you get on.
      Jak x

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  6. Sammy Armstrong

    I am kind of glad to hear you had a similar experience with Prof Newton as i did. A lot of others seem to only sing her praises. She didn’t ask me any questions at all, only about why I use a wheelchair. She only seemed to know about fludrocortisone & when i had issues with insomnia said I would have to put up with it, or stop the drug & get worse symptoms again! I have been too ill to attend several appointment (mostly due to dysautonomia), so I got discharged from her clinic & taken off her books!
    My pre-appointment with another doctor was much better, but as the head honcho decides treatment, my hopes were high.
    I am now going to the Autonomic Unit at UCLH, I sincerely hope they will be more helpful; iI had a telephone consultation with Prof Mathias & he seemed like he actually want to help me improve.

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    1. bertieandme Post author

      Hi Sammy

      Most of my ME friends who have seen Prof Newton have sung her praises too! Maybe she’s just not interested if you have something else on top of ME, like Ehlers-Danlos? She certainly wasn’t interested in my mast cell issues.

      I’m sure you’ll get much more help from UCLH – they’re supposed to be excellent. I just wish I felt well enough to get to London but I sadly don’t. It bugs me no end that people who live in the south get help and those in the north don’t :-/

      Let me know how you get on. Jak x

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