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Any meds for extreme acute POTS symptoms?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by keenly, Apr 27, 2017.

  1. keenly

    keenly

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    I am being forced to go on a family holiday in May and very scared.

    The last few months have been hell, and I can not breathe properly right now. I am awaiting an appointment to see a cardiologist on the NHS, and get a referral to local oxygen team for oxygen saturation assessments.

    Right now my resting heart rate is 85+, goes up to 110 when taking a few steps. I am worried about the heat in Turkey. I want to know if there are any meds I could ask my GP to prescribe that I could take away with me in case I have an acute episode where I feel my heart is going to burst out of my chest and I can not breathe.

    I have never tried any meds, I am not looking to be on anything long term, I just need to get through 10 days without having a heart attack.

    My GP knows nothing so I will have to guide him. I have never had any NHS help, quite frustrating to say the least.

    Any input would be appreciated
    thanks
     
  2. halcyon

    halcyon Senior Member

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    Beta blockers would be the main thing. I hesitate to call it a treatment as all it does is block tachycardia. Florinef and midodrine are often used as well but aren't advisable for every POTS patient, it depends on what your blood pressure looks like.

    You might also look into cooling vests if the heat is a concern.
     
    Last edited: Apr 27, 2017
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  3. adreno

    adreno PR activist

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    Anything cholinergic should help to bring your heart rate down, as it activates the parasympathetic ANS.
     
  4. charles shepherd

    charles shepherd Senior Member

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    PoTS and ME/CFS: Basic information and links from the MEA:

    1 The MEA has a brand 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 (2017) 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
     
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  5. keenly

    keenly

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    Anything specific?
     
  6. keenly

    keenly

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    Yeah long term it does not address the underlying mechanisms, but I am only after short term help. Any specific beta blockers?
     
  7. Basilico

    Basilico Florida

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    One thing you could try is Midodrine.

    https://en.wikipedia.org/wiki/Midodrine

    It's used to treat dysautonomia and orthostatic hypotension. I tried it a few years ago, but even at high doses it did not affect my BP at all, which is quite unusual, and likely points to some kind of receptor damage/downregulation (I think). In any event, I think it's very worthwhile to see if it could help you.
     
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  8. halcyon

    halcyon Senior Member

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    Probably one of the cardioselective ones, atenolol etc.
     
  9. kangaSue

    kangaSue Senior Member

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    Just be aware that atenolol can affect gastric emptying rate and is thought to be the cause of gastroparesis in those predisposed to this. Unfortunately, there is no way to determine who fits the criteria so if you get GI symptoms with atenolol, look to trying something else. Metoprolol is suggested to have the least negative effect on the GI system.
     
    Last edited: May 1, 2017
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  10. keenly

    keenly

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    Thanks I will look into that.
     
  11. Apple

    Apple Senior Member

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    Beta blockers will definitely help as a preventive measure, but will take 30-60mins to kick in so not overly helpful in an acute episode.

    This isn't a pots treatment, but I remember watching a real life medical show in which a girl had a condition that caused her heart rate to jump to like 170+ and stay there for prolonged periods. One of the treatments the doctors gave her (as the med didn't work) was to put her face in a bowl of icy cold water. I don't remember how or why, but it helped her heart rate to drop back down to a normal rhythm/rate.

    I wonder if you could carry a bottle of frozen/cold water around with you and if pouring a bit on you or even just holding it against your face or neck would help in anyway? It would at the very least keep you cooler.
     
  12. halcyon

    halcyon Senior Member

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    It triggers the mammalian dive reflex.
     
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  13. kangaSue

    kangaSue Senior Member

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    It also stimulates vagus nerve activity.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Atenolol & Midodrine allow me to have a semblance of a life and every time I have attempted to taper off Atenolol, even by 1/4 pill, my standing HR is back in the 160's within 1-2 days (but orthostatic issues are the core problem that I cannot resolve).

    I have found solutions to close to everything else. My doctor believes I have autoimmune POTS and I think the ultimate treatment that works for each person depends on the cause. I wish I had a better answer!
     
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  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    All these could work if your high HR is coming from the sympathetic nervous system. Except you would need to quickly drink the ice water rather than use it for cooling. Another thing is doing the Valsalva maneuver--all these things stimulate the parasympathetic nervous system (vagus nerve).
     
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  16. ryan31337

    ryan31337 Senior Member

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    Your mileage may vary but Ivabradine works better than beta blockers for my POTS. It is available on the NHS if you go to the right doc...
     
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  17. Revel

    Revel Senior Member

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    If you are going on holiday this month, I think you have probably left it too late to obtain medication. I know that my GP would not prescribe anything until requested to do so by the POTS specialist I was referred to.

    I had seen 3 cardiologists prior to this, none of whom were competent enough to diagnose the issue, and all suggested that I had anxiety/depression. So, ensure that the cardiologist you will be seeing is suitably knowledgeable (I ended up finding success with a stroke consultant who had an interest in POTS, rather than a cardiologist).

    As for medication, I was unfortunately unable to tolerate virtually anything prescribed including beta blockers, Florinef and Midodrine. I was expected to stick with each new medication for 4-6 weeks, to give my body time to adjust - each experience was hellish, and I certainly would not have wanted to be going through the adverse side effects whilst abroad on holiday.

    The only medication that did help for a while was Ivabradine. It gave me no negative side effects at all, but it only put an upper ceiling on my tachycardia and eventually it stopped working for me altogether.

    My worry for you is that, even if you can obtain a prescription before you go, POTS medication is very much a trial and error experience and you may not now have sufficient time to find out what will work for you before you leave for Turkey.

    I would concentrate on looking into management aids, especially those designed to keep you cool, and pursue medication options on your return.
     
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  18. adamtomlinson

    adamtomlinson

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    Seconded, this is a brilliant medication. I only need a 1/4 of a 5mg tablet twice a day so try building up for 1/4 doses and see where the sweet spot is.
     
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  19. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I take ivabradine, bisoprolol and I've been prescribed midodrine though personally I don't get on well with that. My POTS bpm is worse than yours without meds.

    If you can get it, I'd try ivabradine first. But in uk this has an amber warning and has to be initially prescribed by a consultant.
     

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