The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

M.E + POTS - A few questions

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by AdamS, Apr 5, 2017.

  1. AdamS

    AdamS Senior Member

    Messages:
    263
    Likes:
    766
    For those who have M.E + POTS I have a few questions...

    1) Did one come before the other, or both at the same time?

    2) What would you say are your main POTS symptoms? (Other than PEM/flu like symptoms, I find it hard to differentiate between M.E/POTS)

    3) Which would you say affects your day to day functioning more, POTS or M.E?

    4) Do you think fixing the hypometabolic state found by Ron Davis, Fluge, Mella and Naviaux will also alleviate POTS/dysautonomia/OI symptoms found in M.E?

    Thanks, Adam
     
    dangermouse, taniaaust1 and SamanthaJ like this.
  2. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,907
    Hi @AdamS I was diagnosed with ME 27 years ago – two years after onset. I only became aware of POTS four years ago. My initial orthostatic problems involved Neurally-Mediated Hypotension (NMH), diagnosed shortly after the ME. I’m not sure at what point I changed from NMH to POTS.

    My main POTS symptoms are: an immediate increase in heart rate of 30 – 50 bpm from supine to standing (with poor recovery); high HR when upright, especially using my arms (either sitting or standing); heart palpitations/pounding; exercise intolerance; shortness of breath; tremulousness/shakiness (without anxiety); sweating; fatigue/weakness; headaches; cognitive problems; poor sleep; gut and bladder problems; coldness and pain in the extremities; and small fiber neuropathy.

    Like you, I find it difficult to know whether to attribute my symptoms to ME, or POTS. Currently, I’d say POTS affects my day-to-day functioning more. I’m wearing a HR monitor as a pacing tool. Unfortunately, if I were to obey it, on most days I’d do nothing – not even personal care.

    With respect to your last question, I’m probably among the least scientifically-qualified members on the forum. I have no worthwhile opinion on whether there might be a connection between orthostatic intolerance and the hypometabolic state identified by researchers.
     
  3. AdamS

    AdamS Senior Member

    Messages:
    263
    Likes:
    766
    Thanks for the reply! It's interesting that you say POTS affects your day to day functioning more. I also wear a HR monitor (Fitbit Charge 2) so can relate to disobeying it :D
     
    Old Bones likes this.
  4. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    PoTS and ME/CFS: Basic information and links from the MEA:

    1 The MEA also 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 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).



    3 Information on symptoms and diagnosis of PoTs from the new MEA information leaflet

    Why does PoTS sometimes affect people with ME/CFS?

    PoTS can affect people with ME/CFS, especially those in younger age groups and at the more severe end of the spectrum. This is because the ANS is commonly involved in ME/CFS – where the malfunction can cause what is called orthostatic intolerance (difficulty in remaining upright – as in PoTS) and cold hands and feet. The ANS also affects bowel and bladder control and may therefore cause irritable bowel type symptoms and ‘irritable bladder’ symptoms.

    Primary PoTS and overlap with other conditions

    Primary PoTS often has an abrupt onset and may follow acute infections, immunisations, surgery, pregnancy, or trauma – all of which can trigger ME/CFS. As with ME/CFS, there is evidence of an autoimmune component and there is a genetic component in some cases.

    PoTS is also more common in people who have hypermobile joints (which can also overlap with ME/CFS), people who are deconditioned after prolonged bed rest, diabetes, sarcoidosis, Sjogren’s syndrome, SLE/lupus, antiphospholipid (Hughes) syndrome, and mast cell activation disorder - which should be checke for this if flushing and allergies are present.

    What are the diagnostic symptoms and signs?

    Characteristic symptoms, which occur on standing and are normally relieved by lying down, include:

    ·fatigue or weakness (91%)

    ·palpitations or awareness of the heart beating (86%)

    ·dizziness (90%)

    ·feeling light-headed, pre-syncope/feeling faint (90%)

    ·sometimes actually fainting/syncope (58%), or having a transient loss of consciousness

    Percentages are taken from a PoTS UK patient survey.

    Other common symptoms, which occur in up to 40% of cases, include:

    ·nausea and other irritable bowel type symptoms

    ·headaches – which may be caused by lack of blood flow to the brain,

    ·sleep disturbance

    ·shortness of breath and chest pain

    ·visual disturbances – including blurring

    ·‘brain fog’/cognitive dysfunction – as occurs in ME/CFS

    ·‘coat hanger pain’ - which is thought to be due to poor blood supply to muscles around the neck and shoulder


    Acrocyanosis – a puffy bluish discolouration of the hands and feet that is caused by blood pooling in the veins occurs in around 50% of cases.

    Symptoms are often described as being more prominent on rising after waking up. They are frequently exacerbated by standing up too quickly, heat, some types of food or large meals, alcohol and stress. They are often exacerbated during infections and may be worse during menstruation.

    For some people, the disability caused by PoTS is considerable, especially when this is added to the health problems caused by ME/CFS. Patient evidence collected by PoTS UK indicates that 23% are wheelchair users and 37% are unable to work. Although severely incapacitated, PoTS patients often look well.

    Acrocyanosis:

    [​IMG]

    How is PoTS diagnosed?

    A diagnosis of PoTS is based on the characteristic symptoms and what is called a 10 minute active stand test and/or a tilt table test.

    The Active Stand Test: Under careful supervision, heart rate and blood pressure are measured after resting/lying down for ten minutes, then immediately upon standing still (unsupported with hands by sides) and after 2, 5 and 10 minutes. This test may bring on symptoms of PoTS and some people may faint. If the result is uncertain the test can be repeated on another occasion.

    Head-Up Tilt Table Test: This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 beats per minute within the first 10 minutes, this upright position can last between 10 and 45 minutes. The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure. The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed.

    If facilities are available, some patients are tilted after a carbohydrate drink (liquid meal challenge), exercise or heat.

    Serum catecoholamines should be checked in supine and upright positions, especially if a hyperadrenergic form of PoTS is suspected.

    A heart rhythm test/electrocardiogram test should also be arranged to exclude heart problems that can cause a tachycardia as well (eg inappropriate sinus tachycardia) and thyroid function tests. Other cardiac/heart tests – eg 24 hour heart rate and blood pressure monitoring, echocardiogram, autonomic function screening tests - may be required in more complicated cases.

    Unfortunately, many doctors still know little or almost nothing about how to diagnose PoTS and how to manage it. As a result, many people with PoTS are left undiagnosed, may even be misdiagnosed as having anxiety, panic attacks or hypochondriasis, or be labeled as ‘heart-sink’ patients.

    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    697
    Likes:
    2,299
    Hey. Did you get a TILT test and other associated tests for Autonomic Dysfunction like a Valsalva Manoeuvre? If not please make sure you do and all the other tests, because it's important not to leave symptoms that feel like POTS that might be another diagnosis in which someone could help your health improve.

    My apologies if you have been diagnosed, just wanting to look out for you.
     
    Old Bones likes this.
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    697
    Likes:
    2,299
    1) ME came on first as a child, very slowly, before I was 10. I'd probably have met a Fukuda criteria by age 12 but never knew what ME was until it was too late (as teenager) when I got post viral ME age 16, by which time a few years later (still not diagnosed) the psychiatrists lapped it up as delayed childhood trauma - e.g. misdiagnosis.

    So compared to POTS, it was a weird slow burning cognitive dysfunction first, with almost elements of Autism to a degree but most noticeably with poor recovery from viruses, like getting a mini ME each time I got sick and sent home from school for weeks on end and fed on antibiotics like smarties - back then, GP's commonly gave out antibiotics for infections, even viruses. So I just got on with it, and accepted I had crap immunity and was a bit 'slow' at school (couldn't remember much that I learned) until by 16, I got a virus and was never the same again - like these mini ME events, but this time it 'stuck' for good. Didn't expect that obviously, so spent years trying to find out what it was: Addison's, Diabetes etc - all wrong. Didn't find out until I collapsed and ended up in hospital, semi paralysed from an infection that took me over a year to sit up in bed from. Then they simply repeated, delayed childhood trauma and ME doesn't exist now, it's called 'CFS' and you need CBT-GET to stop thinking you're ill.

    POTS came on suddenly, literally woke up with inability to sit up without chest pain and a bizarre feeling like no blood was in my head at all, yet my BP was normal, but pulse very fast, my heart felt worn out sitting at a PC desk within minutes, keep upright chest pain only put me in hospital within a few hours. Also I kept feeling really anxious and having panic attacks - when upright, totally bizarre. This rapidly de-conditioned me within the home and put me in a wheelchair inside the house (I was already housebound with ME) and then within a few weeks, I couldn't sit up at all without ending up in the hospital as my pulse was so fast without medications (130+ sitting, 180 standing after 5 mins) and so I basically developed some weird 'have to lie down disease'. So my heart was keeping me prisoner basically, it hated me sitting or standing up never mind walking. ME was always like this, but in ME you can do things (some things), yes you also get elevated pulse rate (not as bad) but exertion in ME wacks you senseless and you get an extreme delayed response, or straight away actually. In POTS you literally can't do it at all via what feels like a failed circulation - so ME all over again. Too SOB to stand up and brush your teeth sitting on the toilet without getting consumed by tachycardia or seeing stars, for example. That was the first thing, and getting convulsions from things like viruses, low blood sugar (or pseudo low blood sugar to be exact), and stress. Basically with ME I wasn't used to minor stresses putting me in hospital even things like a basic argument. This all made me realise this was different to ME. With ME you live within your limits, and somehow get through a day. With POTS you always have some kind of drama, symptom wise, without fail, 24.7. I'd say that's the difference, the complete instability of symptoms, at rest, without provocation and provocation isn't ''boom and bust'' it's eating, drinking and peeing never mind sitting upright or walking or washing, or bending, or looking up (top shelf vertigo).

    2)
    I'd second what Old Bones says, however in my case they tell me I have more wide ranging Dysautonomia than POTS. This is because, technically, someone can have POTS and nothing much else, or they can have POTS and three other autoimmune diseases! I was unlucky.....to get ME + POTS. The worst thing at onset was chest pain, and having to race to hospital getting strapped up to ECG's. Did that for a few years as no one would admit me to hospital for any tests! So I'd say POTS symptoms are different to ME, although ME involves circulation without doubt and makes you feel like you're made of lead, POTS is far more dramatic and 'observable' to other people, even skeptics primarily as your veins in your hands are all plump, hands go like salami, and feet turn purple. Yet to observe it, you have to be on a hospital ward first - catch 22 - when the hospital won't give you a bed because the believe ME CFS = functional somatization. Why give a somatizer tests, you'll only make them worse - belief of hospital doctors.

    3)
    I'd also agree with Old Bones that POTS is worse than ME in terms of unstable nature of the physical disabilities (ME tends to be more of a 'static' disease in which if you do nothing, you get less symptoms), although I would imagine POTS on it's own, is not as bad as ME, due to ME's wide ranging systemic nature - POTS is more CNS/Circulatory, ME adds more immune problems, brain dysfunction etc. Both are very very similar though, perhaps even directly related. Which links me to answering question 4.....

    4) As I've had experimental autoimmune markers which are thankfully positive for both POTS + CFS research findings (good news as it implies POTS + CFS really are different), then I think I'll need Fluge/Mella for Autoimmune ME, Dr David Kem for Autoimmune POTS and Dr Davis/Navieu for core organic CFS - if i have that at all.
    That's why I'm desperate for the Metabolon test. Do PWME, PWPOTS test positive or 'just' people with CFS.
    E.g. is the Metabalon test going to detect 'Pure CFS', or 'Atypical CFS' (to use Dr Lipkin's and Dr Horning's proposal from their latest paper). I'm desperate to then find out, if POTS has the same results as CFS, or POTS + CFS.
    What if we all have the same results, yet we all have 3,4 different labels?! I wouldn't bet against that either.

    One last thing to consider re: POTS + ME.

    The vast majority of diagnosed ME CFS patients, never get access to further complex testing post diagnosis if they become housebound or bedridden. So when Julia Newton estimates that 1 in 4 CFS patients have POTS in her paper, I'd love to know the true percentage of how many severe housebound ME patients who (when tested) also have POTS. Is it 1 in 4, or it is then 4 in 4.

    When you have ME, badly, it's easy to attribute everything to ME, because doctors tell you ''that's just ME''. We thus think we have extreme ME, when we might actually have 3 diseases at once. If no one tell us this, we just rot away in society, totally clueless.

    In fact you're more likely to find out about allied health conditions from this form and other patients, than from your own doctor! Think how mad that is for a second. Patients having to play doctor, to help other patients get a diagnosis as the people who are meant to educate you, aren't educated about the multiple illnesses you develop over time.

    That's no way to run a professional health care service, in any country.
     
    dangermouse, Sidereal, AdamS and 2 others like this.
  7. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    I am no expert in POTS but it seems most likely to me that the POTS is caused by the ME. Not two distinct diagnosis. This much in the same way that our sons Atypical Migraines were secondary to ME. If that is the case (not saying it is) then improving the ME would improve the POTS. Treating the POTS in this circumstance would be treating symptoms but that can be helpful.
     
    keenly and AdamS like this.
  8. Murph

    Murph :)

    Messages:
    534
    Likes:
    2,714
    I don't know if I had POTS from the very start, because I'd never heard of POTS and just knew I felt sick and tired, especially after exercise. I came to distinguish POTS and ME only much later, after getting the standing test (poor man's tilt table test) which showed all the classic signals for a positive POTS diagnosis.

    However, looking back, I notice a few signals that were there from the start. A lot of thirst and a tendency to try to keep my body in the horizontal plane. (Imagine a man in a suit sitting in an office, on a swivel chair with his legs crossed under him like a yogi. I had no idea at the time why that was the most comfortable way for me to sit but thinking back maybe I was trying to prevent blood pooling in my legs!)

    I have a hypothesis tying together ME and POTS that takes endothelial cells as the common point. Endothelial cells are all along the circulatory system. They are also very important immune signalling cells. If the endothelial cells are unable to do their job of creating proper vasoconstriction and vasodilation, you can get two results.

    One is blood in all the wrong places when vasoconstriction is required. The second is that the very same endothelial cells notice that during exercise, when vasodilation is required, it doesn't happen properly. Endothelial cells are trained to notice something called shear stress on the walls of blood vessels. When the heart pumps harder shear stress rises and the endothelial cell should dilate the blood vessel. In my hypothesis, after trying and failing to do so, they call in an immune response. This is what we recognise as PEM.

    I really like this hypothesis for its neatness. It would explain the problems people have with alcohol, exercise and heat. It also explains PEM as an acute immune response within a broader dysfunction. (One problem I have with a lot of hypotheses is they lack a mechanism to explain both the chronic issues CFS people have and acute bouts of PEM.)

    But of course, when I think about my CFS more broadly, it doesn't explain everything, especially not gut flora problems. And it is not clear whether any hypometabolic state would be upstream (causing endothelial dysfunction) or downstream (a result of the endothelium calling in immune responses time and again.)
     
    ScottTriGuy, ahimsa and AdamS like this.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,776
    Sth Australia
    Like most it seems, I got ME before I got POTS and didnt have POTS at all at first with it. My POTS is a coexisting condition due to the ME.

    I find it easy to differentiate. My ME has many different symptoms and even my ME headaches are different to a POTS headache. My ME headaches usually happen at the temples or front (stress headaches happen at the front for me too). My POTS headache is an all over one with dizziness too an is more like a feeling like a pressure has built up in my head and is like pushing from inside as if my head is going to explode.

    They come on differently too... POTS doesnt happen post exertionally but is there all the time to a degree eg I stand up and are immediately uncomfortable due to POTS (I dont like standing up or being on my feet due to it). ME comes on slower and gradual, where as POTS can often just slam. With ME you can push yourself and things will just get harder and harder.. with POTS you cant just push yourself as to do so is for me to end up in hospital due to being collapsed.

    My main POTS symptoms are -
    * head pressure (it used to be dizziness which was my most common one but now it is horrible pressure feel in head)

    *unsteadiness on feet, starting to loose balance, having to focus a lot more to keep my balance

    * weakness (the weakness is something which also flares with the ME, once again POTS and ME weakness though are different, ME weakness just makes things harder to do, POTS weakness one's legs suddenly can just out of the blue give way and send one crashing to the floor). Its unsafe to stay on feet if one is feeling weak with POTS.

    * fatigue (note not the same kind of fatigue you get with ME, its a less deep level of fatigue in POTS flare).

    * feeling nausea and like Im going to throw up (that one feels the same for me in both ME an POTS)

    * anxiety (POTS anxiety is in relation to standing or sitting.. being upright. When I had ME anxiety though at one point that was a constant ongoing anxiety which POTS anxiety never is. I took benzos for ME anxiety for a while)

    If I continue on feet after I get these symptoms.. I can then go into blurry vision (or even go completely blind right before a collapse) or just collapse either unconsciously or consciously collapse to floor so I have to stop immediiatly on getting POTS symptoms as right away Im in danger zone of having a collapse and always are in a rush to sit back down (or lay down).

    POTS also has different triggers to ME eg eatting a large meal can trigger off my POTS more, stress seems to be able to trigger my POTS off more, heat triggers the POTS.

    currently the severe POTS affects me far more though I have fairly severe ME. The POTS though prevents me from doing much at all so its much harder to flare up my ME then it would be otherwise (so it has a protective action so maybe there is a good reason to have it)

    as reseach 1st said and I agree completely with this so I will quote her
    With POTS, every little thing one does one is having to watch eg dont go and lean with arms up on that counter or it may cause a POTS collapse (i collapsed on floor of a shop as I'd put both arms up onto the counter top), dont go and sit with legs down as you will then end up needing to lay down, dont eat a large meal in a warmish room, dont go sit to stand too much as each time risks a collapse, avoid chemicals as they can also set off my POTS, dont do this.. dont do that.

    Its crazy. Im constantly in monitoring mode of myself to not cause myself a sudden POTS collapse. Ones with only ME need to monitor how much they are doing but its nothing at all like the monitoring one has to do when one has POTS and forget to monitor something and you've then got the consequences of it and that then is often a trip to hospital on the ambulance.

    A trip to hospital due to a POTS crash is very bad as that usually then leads to a ME getting worst as the not being able to rest at the hospital, too much noise with the beeping monitors, to many lights, not being able to sleep.. = then ME worsening. (ME symptoms, sore itchy throat, feverish, worst fatigue then the POTS fatigue, ME headache etc). You leave the hospital after a drip for the POTS able to sit and walk again feeling great POTS wise but now "feeling very ill" with ME so go home straight to bed.

    Doing the self monitoring of the POTS for those who have severe ME is exhausting (mentally faitguing).. hence why I find it so very hard when Im taken out anywhere. Its extremely challenging and also extremely challenging for whoever is with me when Im out.

    I have read that stuff but cant remember it so unable to comment on this.
     
    Last edited: Apr 5, 2017
    Mel9, ahimsa, dangermouse and 2 others like this.
  10. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    Yes I was describing classic POTS symptoms for the past 3 years to my primary doc, various specialists & not one of them picked up on it. Knowing what I know now this is ridiculous & unacceptable. Just last week I asked a medical assistant at my local small town doctors office is she knew what POTS was and she said "Yep" and proceeded to give me a brief description which was indeed correct. Doctors should know this!!!

    I have not had a tilt-table test or the 10 minute NASA lean test, but my ME/CFS specialist diagnosed me with POTS based on my symptoms and I recently begun taking a small dose of a beta blocker (metoprolol) daily which has definitely helped. My POTS symptoms began right before my 2 year downward spiral into severe ME/CFS began (I have been severe for 1 year now). However my POTS symptoms have always seemed to fluctuate a bit and are not always present. Some days I don't get the spike in heart rate when standing & other days I struggle to be upright for more than a minute or two. Do others get this fluctuation in symptom severity day to day?
     
    Last edited: Apr 11, 2017
    Mel9, dangermouse and Valentijn like this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,776
    Sth Australia
    Severity of POTS symptoms depends on other things too as not just standing triggers them, eg they can also be triggered off by chemicals, heat or things like whether you've just had a large meal. The more POTS triggers coming in in combo, the worst the POTS symptoms may present.

    You may find you are okay at certain POTS triggers when individually presented only to have problems when two or more or coming together at same time eg Im okay with eatting a large meal but if I eat a large meal when its warm (not hot but just fairly warm)... most of the time in that situation if Ive been out.. Ive then POTS collapsed onto the floor.

    Level of your hydration at the time also can majorly play a part too when it comes to POTS.
     
    Mohawk1995, Mel9, ahimsa and 3 others like this.
  12. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
    This is interesting. I've had this happening for around 14 years now. It began after 2 infections. It has fluctuated in nature but I can now pinpoint what triggers it. Standing, hot large meal, heat, walking etc.

    Recently it's become much worse and is very debilitating. I'm wondering if the medication that I take for Microvascular Angina (Ranolazine) is making it worse? I doubt it, though, as it's always brought on by triggers.

    I'm seeing the surgery Nurse Practitioner about it this week. I'd emailed explaining my increased severity in lightheaded, dizzy, loss of balance, nausea, headaches and sweating, and asked them to consult my cardiologist but they want to see me.

    I've described my symptoms to my GP (OI or ?POTS) several times and he just said it's the ME or that these things can happen sometimes? This is one of my worst issues currently and is worsening.
     
    Last edited: Apr 11, 2017
    Mel9 likes this.
  13. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    My POTS symptoms began not long after a major surgery, I also developed a staph infection in my surgical wound after this surgery.
     
    Mel9 and dangermouse like this.
  14. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
    That's interesting. I'm finding the symptoms difficult to deal with. I'm drinking more water with salt in it, I've also bought some shapewear to see if it helps.
     
    Mel9 and TrixieStix like this.
  15. AdamS

    AdamS Senior Member

    Messages:
    263
    Likes:
    766
    @TrixieStix Interesting, I also had a Staph infection/reactive cellulitis a while before I got ME/POTS.

    @dangermouse Have you had a tilt table test? Does your heart rate increase by 30bpm or go above 120bpm within 10 mins of standing after laying down? There are quite a few types of POTS, Neuropathic, Hyperadrenergic and Secondary etc. Blood pressure on standing varies between the different types and means that specific treatment strategies are needed. It can also be caused by deconditioning, which I guess is almost unavoidable if you have ME. It could actually be the case that Ranolazine is causing your light headedness though, dizziness is listed as a common side effect...i'm not a doctor, just a few thoughts.
     
    dangermouse likes this.
  16. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    "In a significant number of patients, the symptoms of POTS are manifested shortly after an infection, as occurred in our patient’s case, or following other stressful events such as surgery or trauma."

    http://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1279&context=tmf
     
    dangermouse and AdamS like this.
  17. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    1) Gradual onset leg pain, fatigue & migraine first. POTS after EBV kicked me repeatedly whilst I was down, some months later.

    2) Assuming POTS/dysautonomia is the culprit, most definitely the disruption caused to gut motility. This is probably the root cause of my problems with SIBO/MCAS and poor blood glucose regulation, which has caused significant disability & pain that can't be immediately helped by just lying down. Check out dumping syndrome and gastroparesis and see their prevalence in POTS. Often the basic overview POTS literature talks about gut problems but doesn't actually go into detail...

    3) When untreated definitely POTS. With ME I can pace with good effect 99% of the time, limited activity but stable.

    4) Couldn't say if my problem is the same hypometabolic state, but during long remission after adolescence my POTS symptoms also disappeared, so yes to notion of same underlying cause.

    Yes, objectively tachycardia & symptoms do vary seemingly dependent on hydration, inflammation and other things that can change day to day. Its important to note that according to studies there is no correlation between symptom severity & degree of heart rate elevation - some people have a 30bpm increase on standing and are far worse off than those with 50bpm increase.

    Agree with you on tailored treatment but its worth remembering that the underlying 'types' are not mutually exclusive. Most POTS patients will have multiple problems all contributing, one just might be a little more dominant than the other.
     
  18. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258

    Thanks for the information, I'll be discussing some of this when I see the Nurse Practitioner this week.
     
    AdamS likes this.
  19. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    Also the testing needs to be done correctly. When I first mentioned OI to one of the doctors I saw it was a neurologist. She had a nurse simply take my blood pressure while I was laying down, then had me stand up and took it again. She said it was normal. I now know of course that this was not at all how you test someone for OI/POTS!!

    Not sure about this but given that OI/POTS symptoms can fluctuate wouldn't it then be possible to have have normal test results one day and abnormal results another? I wonder if this is why my ME/CFS specialist has not had me do a proper test with a doctor? I had had OI/POTS symptoms for the past 3 years and at home I have measured my heart rate myself showing increases of 30+ bpm after standing for a few minutes.
     
  20. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
    I'm hoping that my appointment goes well and that the Nurse is knowledgeable. It'll be a big effort to get there and I really want some kind of help.
     
    Mel9 likes this.

See more popular forum discussions.

Share This Page