Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Can anyone recommend a good P.O.T.S. specialist in N West England please? And P.O.T.S./OI experience

Discussion in 'ME/CFS Doctors' started by Kes, Oct 23, 2017.

  1. Kes

    Kes

    Messages:
    28
    Likes:
    37
    I'm seeing a GP (not my usual) on Thursday. I've had atypical M.E. for many years (18) but never given much consideration before to possibility I could have P.O.T.S. I've had my worst relapse starting in March this year from a very short (2 minutes) but stupidly intense punchbag session. For a minute I thought I was Rocky with Eye of the Tiger in the background :ill:. My heart rate is going up about 45-50 beats per minute within seconds after going from laying down to standing. I read that if it goes up 30bpm within 10 minutes it's indicative of P.O.T.S. but I don't get blackouts or dizziness. I was just wondering about other people's experiences and how best to approach my G.P. for a referral and what specialty I should ask to be referred to if the G.P. isn't too familiar with this please?
     
    MeSci likes this.
  2. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,228
    The best place for POTS/Orthostatic intolerance in the country is maybe Newcastle at the Royal Victoria Infirmary (RVI),run by Prof Julia Newton. it's probably too far away to be referred to.

    An alternative locally for you is to be referred to a syncope specialist, this is somebody who specialises in falls. A friend in Leicestershire is seeing such a specialist.

    https://www.nhs.uk/Conditions/Fainting/Pages/Causes.aspx

    Hope this helps :)
     
    Kes likes this.
  3. Kes

    Kes

    Messages:
    28
    Likes:
    37
    Thank you @Demepivo! That's very helpful of you :)
     
    Demepivo likes this.
  4. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,190
    This is the list of PoTS specialists held by the patient support charity PoTS UK:

    http://www.potsuk.org/doctors

    Professor Julia Newton in Newcastle is a recognsed expert in this area of medicine - if you can get an appointment

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Demepivo and Kes like this.
  5. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,190
    PoTS and ME/CFS: Basic information and links from the MEA:

    1 The MEA has a new information leaflet covering all aspects of PoTS in relation to ME/CFS:

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/

    as well as a leaflet covering the management of orthostatic intolerance:

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance-2/

    2 Information on POTS from the MEA purple book - clinical assessment section:

    Postural orthostatic tachycardia syndrome (PoTS) sometimes forms part of ANS dysfunction in ME/CFS. PoTs is defined as symptoms of orthostatic intolerance associated with an increase of heart rate from supine to upright position of > 30 beats per minute (or 40 beats per minute in the 12-19 year age group) or with a heart rate of > 120 beats per minute on standing, can occur in ME/CFS (Hoad et al 2008; Kavi et al 2016).

    In the recent British Journal of Cardiology review of patients with PoTS and their experience of healthcare in the UK, Kavi et al (2016) found that 81% of respondents were between the ages of 18 and 49 years and 92% were female. The most common symptoms at presentation were fatigue (91%), light-headedness, dizziness or presyncope (90%) and palpitations (86%). Syncope or blackouts were experienced by 58%. Other commonly presenting symptoms (in over 40%) included difficulty thinking (often described as brain fog), physical weakness, visual disturbances, breathlessness, vertigo, shakiness, chest pain, sweating, bloating, symptoms of anxiety, poor sleep, daily headache, acrocyanosis (purple-blue discolouration of hands and lower limbs), tingling in peripheries, nausea, abdominal pain, heat and exercise intolerance and ‘coat hanger’ pain (thought to be due to ischaemia of neck and shoulder muscles).

    Clinical evaluation should therefore include a response to standing. Research aimed at characterising ME/CFS patients with or without PoTS found that those with PoTS were younger, less fatigued, less depressed and had reduced daytime somnolence (Lewis et al 2013a). They also had greater orthostatic intolerance and autonomic dysfunction. Those with PoTS may require further investigation and consideration for therapy to control heart rate (Lewis et al 2013a).

    Further evidence relating to the important subgroup of ME/CFS patients who also have PoTS comes from Nijs and Ickmans (2013).

    For a review of PoTS, see Benarroch (2012) and Kavi et al (2016).

    NB: In patients presenting with chronic fatigue and/or orthostatic intolerance, low ferritin levels and hypovitaminosis D may be present, especially in those with postural tachycardia (Antiel et al 2011).


    From MEA info leaflet on PoTS: How is PoTS treated?


    Treatment involves a combination of self-help measures and in more severe cases the use of drug treatments.


    Activity management: Carefully planned and monitored activity management involving the lower limbs can be helpful. However, this obviously creates difficulties when PoTS is combined with ME/CFS. Doing so in a recumbent position is one option here.


    Avoidance of exacerbating factors: Alcohol (which dilates blood vessels), dehydration, heat and hot baths, and large meals should be avoided.

    Compression tights and support stockings may be helpful. These should be waist high and provide at least 30mmHg of pressure at the ankles (ie Grade 2 compression) to be of maximum benefit. This helps to prevent the pooling of blood in the legs. Support stockings and tights can be purchased from department stores and pharmacies. Doctors can also prescribe compression tights on the NHS - where appropriate. Detailed guidance can be found on the PoTS UK website.

    Diet: Small frequent meals that are low in refined carbohydrate are recommended – as is eating plenty of unprocessed foods such as vegetables, fruits, beans and foods that contain whole grains. Avoiding rich sugary foods and those containing white flour can be helpful. Symptoms will be worse after large meals because this diverts blood to the stomach.

    Driving and flying: The law states you must tell the DVLA of any health condition that may affect your ability to drive. Failure to do so could lead to prosecution and invalidate your insurance. Problems that you should consider reporting include tachycardia, syncope and dizziness.

    Drink more fluid that normal if you are flying and wear compression tights or socks. Elevate legs where possible and take any important medication in hand luggage. Make sure you are covered for PoTS with travel insurance.

    Fluids intake: This should be increased to at least two to three litres per day to boost blood volume. If symptoms are worst in the morning it may help to boost fluids before getting out of bed. In an emergency, two glasses of water can help to rapidly elevate blood pressure and lower heart rate. Intravenous fluids have been used but can cause serious complications if misused. Caffeine and other caffeinated drinks (which can raise the pulse rate) often worsen symptoms but some people find them helpful.

    Salt intake: This may need to be increased but should only be done under medical supervision because excessive intake of salt can be dangerous. Slow sodium tablets, which are coated to reduce nausea, are available on prescription from the doctor.

    Posture and movement: Try to avoid sitting in one position for long periods. Move around as much as possible within your limitations.

    To avoid fainting take notice of early warning signs – dizziness, feeling light-headed. Lie down immediately and elevate the legs.

    Working or studying with feet up may help to reduce brain fog. Try not to sit in one position for too long.

    Temperature extremes: As excessive heat worsens symptoms the condition is often worse in summer. During hot weather dress in layers which can be easily removed to prevent overheating. Extra salt and fluids will be required if you sweat a lot.

    There is some excellent and more detailed advice on all aspects of general management on the PoTS UK website:
    http://www.potsuk.org/general_advice

    Drugs

    Existing drug treatments should be reviewed because some drugs can exacerbate PoTS. Examples include tricyclic antidepressants, diuretics (water-losing tablets) and drugs that lower blood pressure. Check with your pharmacist before using over the counter medications.

    Drug treatment should be considered in more severe cases. As none of these drugs are licensed to treat PoTS, they should initially be prescribed and carefully monitored by a doctor with experience in treating this condition. Examples of drugs that are sometimes used are listed below:

    ·To reduce tachycardia/palpitations: beta blockers

    ·To increase the blood volume: fludrocortisone – causing salt and water retention

    ·To constrict blood vessels: midodrine

    ·Improving central/brain blood flow: selective serotonin reuptake inhibitors stimulate the standing up vasoconstrictor reflex


    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
  6. Kes

    Kes

    Messages:
    28
    Likes:
    37
    Thank you Dr Shepherd for the information and for the tremendous work you do on behalf of those with M.E.
     
    NelliePledge likes this.
  7. dreamydays

    dreamydays

    Messages:
    35
    Likes:
    58
    United Kingdom
    Hi, when you see a cardiologist I would recommend you ask about ivabradine. I take 1.25mg twice daily and its got my heart rate under control with no side effects.
     
    Jenny TipsforME and Kes like this.
  8. Kes

    Kes

    Messages:
    28
    Likes:
    37
    Hi thanks very much @dreamydays. I appreciate you mentioning that. I'm glad to hear you found something that helps without side effects. Has that led to a reduction in your M.E. symptoms and/ or improvement in your quality of life?
     
  9. dreamydays

    dreamydays

    Messages:
    35
    Likes:
    58
    United Kingdom
    Yes, it has improved all symptoms. 30 minutes after taking the first dose I felt better. Also, less can be more in terms of dose as I only need a quarter of the standard 5mg dose, if I take more it doesn't work as well.
     
    Kes likes this.
  10. Kes

    Kes

    Messages:
    28
    Likes:
    37
    Once again thank you for sharing your experience. One last question(s) if I may, do you wear a heart rate monitor, if so may I ask which one? I had a cheapish one but the sensor has gone AWOL but wearing it was stressing me out
     
  11. dreamydays

    dreamydays

    Messages:
    35
    Likes:
    58
    United Kingdom
    I have an oximeter, but the gold standard of heart rate monitors is a Polar chest strap. Cruelly, my girlfriend also got ME at the same time as me, she also takes ivabradine and she also finds it very effective. Our heart rates would exceed 120 on a regular basis and now consistently 70-80. Unlike beta blockers it doesn't lower your blood pressure which would cause more circulatory problems.
     
    Kes likes this.
  12. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,228
    As some background Dr Peter Rowe John Hopkins Children's Centre for CFS in the USA gave a talk on Orthostatic Intolerance/POTS at the September CMRC conference. Would say it's worth a watch.

     
    Kes likes this.
  13. Kes

    Kes

    Messages:
    28
    Likes:
    37
    Thank you dreamydays and Demepivo for all your help
     
    Demepivo likes this.
  14. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    406
    Likes:
    2,228
    You're welcome. Have orthostatic intolerance myself so happy to share resources. :)
     
    Kes likes this.

See more popular forum discussions.

Share This Page