The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Cardiac issues -is it worth seeing doctor?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Lissyleigh, Apr 1, 2017.

  1. Lissyleigh

    Lissyleigh

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    I've had cardiac issues with the m.e for a long time - when they started I'm pretty sure it was POTS as I had to go into hospital with a heartrate of over 200bpm on sitting/standing only. That was a few years ago and I was given beta blockers as cardiologist thought it was stress. These days due to careful pacing and a general stabilising of my condition, I don't get it that severe, but I still get significant cardiac symptoms. The reason I'm posting is that I'm not sure whether it's worth going back to the doctor and being investigated for POTS. I'm in UK and there's a real lack of understanding of m.e but it seems to be better with POTS and so I might be taken more seriouslty. I don't takr the beta blockers everyday but I always need some just in case. My main experiences are

    Fast heartbeat on standing - usually an increase from 20bpm to over 30bpm so I don't strictly fit pots criteria all of the time
    Feeling dizzy/lightheaded when stand up
    Heart banging in chest
    Fast heartrate on lifting my arms i.e to get dressed
    Fast heartrate on any sort of movement/exertion but particularly repeated/sustained movement
    Fast heartate after a meal

    I also suffer from migraines, fatigue, bladder dysfunction and a lot of the stuff listed under pots.

    I know I have m.e due to the terrible PEM that isnt part of pots - exercise is a massive no no for me due to the immune and muscular symptoms.

    I'm not expecting anyone to say whether I have pots obviously, but just wondering if I should push for seeing a specialist or not? I feel that my cardiac issues have been written off as anxiety and apart from an ecg a few years ago, nothing has ever been done (partly my fault, as I haven;t been to the doctor that often to mention it). Not that much can be done I know, but I;m thinking along the lines of perhaps there would be a better understanding of what I'm actually dealing with.

    If I did go, should I mention that my heart rate doesn't always increase to 30bpm or more on standing? I do think I have dysautonomia and I know some specialists in UK have researched this, but am concerned I don't fit the pots criteria all the time.

    Any thoughts would be great thanks.
     
  2. Dechi

    Dechi Senior Member

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    Cardiac testing is usually the first step in dealing with non-specific illnesses like ME. I am surprised you haven't had it done. Ruling out cardiac problems as a cause for our many symptoms is very important.

    I encourage you to ask to see a cardiologist as soon as possible. And yes, bring detailled notes about your cardiac related (and other) symptoms to your appointment. it's a very useful starting point.

    I am also concerned about your GP. If he never thought about excluding cardiac disease and others, I wonder how effective he is at treating you. Even though ME is not treatable, doctors still have to find ways to help with symptoms. And foremost, their first job is to exclude other serious illnesses that might be afflicting you, and that could be treatable, contrary to ME.
     
  3. Lissyleigh

    Lissyleigh

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    Hi thanks for your reply. I probably should have made it clearer that I did have an ecg a few years ago when my cardiac symptoms were especially bad and everything came up normal. I was in hospital overnight then sent home with beta blockers. I've had all the exclusion blood tests several times since I first got ill 20 years ago but they haven't been done recently.
     
  4. trishrhymes

    trishrhymes Senior Member

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    Just read your last post which makes what I wrote irrelevant.

    Good luck.
     
  5. Lissyleigh

    Lissyleigh

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    No worries thanks for taking the time to reply anyway.
     
  6. SamanthaJ

    SamanthaJ Senior Member

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    I'm currently being investigated for POTS. I have my own blood pressure cuff and I took measurements of my heart rate and blood pressure for a couple of weeks - lying down, standing, after showering, after walking. Also performed an active stand test at home (which nearly caused me to black out! So I don't necessarily recommend it). I then showed these readings to my GP, who agreed it looked like POTS and is running some tests and referring me to a cardiologist.

    I think I'm very lucky with my GP, who admitted she didn't know much about POTS and read the NHS print-off I'd taken with me. But the readings I'd taken at home definitely helped, it guards against the problem of an untypically low reading in the doctor's office, and although I don't get a high heart rate every single time, it showed a clear pattern.

    The NHS website's POTS info usefully mentions that it is often misdiagnosed as anxiety. Might be worth showing that part to your doctor, if necessary.

    Good luck. You are entitled to get help with this.

    EDIT: Although the active stand test freaked me out, it was the reading my GP was most interested in... If I had to do it again, I wouldn't do it on my own.
     
    Last edited: Apr 1, 2017
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  7. Lissyleigh

    Lissyleigh

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    Thank you Samanatha that is really helpful. I hadn't thought about taking readings but that sounds a really good idea. I will take the NHS print out as well as she might take it more seriously if its the NHS. I'm thinking about going to a different doctor which would be a gamble but the one I've been seeing about the m.e has me down as chronically tired and suffering with anxiety! I thought starting with someone else might help who knows. But I will definitely take some readings, thanks for your help.
     
  8. SamanthaJ

    SamanthaJ Senior Member

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    http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

    "Some doctors may not be aware of PoTS, so it may help to print out this page and take it with you to the consultation."

    I liked this bit, as it spares the dr's blushes!

    I was worried about looking obsessed, with all my readings etc, but it does also save the GP's time. My GP is fairly new to me, and I don't know her stance on ME, but she's been respectful and thorough when I've gone about other things. It does sound like you have little to lose by trying someone new. Good luck.
     
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  9. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi @Lissyleigh,

    I see a very good cardiac electrophysiologist in London - not only is he very knowledgeable of dysautonomia, POTS, IST etc. he is also incredibly thorough and will investigate your wider problems. I had lots of testing & came away with referrals to 4x other consultants! In comparison, the two other cardiology consultants I saw prior to going to him had no clue about POTS or CFS and just sent me away with beta blockers...

    Drop me a PM if you want his details, he is private & NHS :)

    Ryan
     
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  10. Lissyleigh

    Lissyleigh

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    Thanks everyone for your help I really appreciate it. I'm going to go to the doctor next week with info and readings and ask to be referred to the specialist you mentioned Ryan. Fingers crossed I get listened to.
     
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  11. Lissyleigh

    Lissyleigh

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    I went to see a different doctor today and I couldnt be more pleased with the appointment. I brought some information and my heart measurements - some are under the 30bpm requirement for pots but some are massively over. It seems to depend on time of day and whether or not I had eaten beforehand. The doctor was really supportive and seemed to know a little about POTS although she had to look it up on her computer to get a more detailed picture. She has arranged for me to have the full blood work done again, plus have my vitamin D levels, thyroid and cortisol checked, AND she will write a referral letter to the consutant that you mentioned Ryan. I'm having a private consultation then will go back to NHS to skip the 9-12 month waiting list for an NHS referral.

    It makes such a difference when someone listens and takes you seriously. She believes that m.e is physical (well, of course) and says that we urgently need to know more about it. She said that many years ago doctors believed that PMT was all in the mind as well! It just shows that some doctors in the UK are on our side - just not enough being done by the powers that be, sadly. I felt a lot better for seeing her. I've been really low lately as it feels as though no one really understands - it's amazing the difference it makes when someone really takes time to listen and treat me as if I'm a person.

    Obviously the consultation with the specialist is yet to be seen, but here's hoping something positive comes of it.

    Anyway thanks so much for the help here and especially for the recommendation @ryan31337 I really appreciate it.
     
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