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Is it POTS or am I NUTS?!

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

  1. Prefect

    Prefect Senior Member

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    I'm trying to figure out what the hell is wrong with me, and hoping folks here with autonomic issues can give some input. I'm going to state all involved in point form below:

    -I'm dizzy a lot, and have trouble concentrating. It's often worse when I'm standing up, especially walking around in a crowded mall or something.

    -Here's the kicker: If I carry something with weight while I'm walking around and start panting and my pulse goes up over 100 BPM, my symptoms improve.

    -I can exercise. In fact my symptoms improve during exercise. After exercise I go to the sauna and sit for 10 minutes and love it. It's when I get back in the car and start driving home when my symptoms come back. I don't get PEM though, my symptoms are constant regardless of my activity level.

    -At the end of the night after dinner I have a glass of wine. I feel better after that, not worse.

    -I've tried drinking 2 Lt of water with 6g of salt in the morning when I wake up, all I do is pee it all out by 10:30 am

    -My blood tests routinely show borderline high sodium and borderline low potassium

    -My pulse is 55 ish when I lie down and 85 ish when I'm standing.

    -I've had a bad flare up of my symptoms over the last year. Up to the flare up my BP was routinely 130/90 (during which time I thought I might be suffering from the hyperadrenergic form, my pulse was routinely over 100 BPM and threw off EGCs), after the flare up it's been constantly 100/70 (I'm a 47 yr old male!)

    -This conditions that has waxed and waned (this year and the first year I caught it have been the worst) did start 20 years ago with a GI infection. Before this illness I had slow prominent pulse. Since then my pulse has felt like a baby is opening and closing his hand really fast.

    -I would not be offended if you told me my symptoms are caused by anxiety, in fact I would love it because mental illness is easier to treat than any of the conditions on this site.

    I just want to know if I should try liquorice root or just give in and let my doctor put me on an SSRI which she has been insisting on for months.

    Thanks!
     
    ScottTriGuy likes this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    My 2 cents:

    Are you anxious? (Generally, besides about your health)

    Are you depressed?

    Sounds like your doctor wants to put you on an SSRI because she thinks you're depressed. (Quelle surprise)

    It doesn't seem very likely an SSRI is going to treat your physical symptoms.

    She's not following the trail of your physical symptoms.

    Personally, I would be seeking another GP to address the physical abnormalities.
     
    Zombie_Lurker likes this.
  3. Prefect

    Prefect Senior Member

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    20 yrs ago I got hepatitis abroad which resolved on its own in a few months.

    But the week I got sick I also developed severe anxiety and got my first panic attacks. That year I had a lot of the symptoms I'm having this year (as per above post). It's a lot like a catatonic "disassociative" type anxiety with no palpitation; I just get agitated and subtly hyperventilate if I engage with reality, and get all dizzy.

    But I also do notice vague pulse stuff as per above post, but those could have been there all along (last 20 yrs) and not bothered me all that much, I don't know.

    Once I got back to Canada they worked me up fully and found nothing wrong with me so put me on an SSRI (Luvox). It didn't immediately cure me but I stayed on it, and over the years my neurosensory symptoms mostly resolved but I developed agoraphobia and panic disorder.

    Last summer my "disassociative" form of anxiety came back which led to all the other triad of neurosensory symptoms I had back in 1997. I went off the SSRI last month seeing as it's no longer doing anything.

    My doctor is itching to put me back on the next one. It's actually an SNRI and I'm not opposed to going on it, just want to use this opportunity to dig deeper into what I may have. Even if it's POTS I've ready SNRIs help the condition.

    But what if it's something else I can use a very targeted med for without overhauling all my neurotransmitters with another psyche med? My current doc has done quite a work up too, there doesn't seem to be anything wrong with me that an OHIP doctor can catch, so she's getting quite fed up with me.

    And, ScottTriGuy (I've noticed you on other posts) I'm also a Toronto guy, so if you know any doctors (not naturopaths, don't trust them much, unless there's one you feel strongly about), but real OHIP doctors who know more about our type of condition and feel like passing on the name it would be highly appreciated.

    Cheers,
     
    ScottTriGuy likes this.
  4. Basilico

    Basilico Florida

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    Since you are looking for some alternatives to SSRIs, have you by any chance already tried inositol?

    https://www.ncbi.nlm.nih.gov/pubmed/11386498

    My husband developed a sudden and severe panic attack disorder a few years ago. It substantially decreased after doing a several month protocol with Mutaflor probiotic. We also later learned that my husband's anxiety/adrenaline attacks were often triggered by his screwed up vagal nerve responding inappropriately to changes in blood glucose and blood pressure. Sometimes, sitting up/standing up at night to use the bathroom was enough to trigger an attack. He also got better about eating more protein/fat and fewer carbs per meal, which helped a bit. The combo of Mutaflor and trying to avoid vagal nerve triggers helped big time.

    Afterwards, I learned how important probiotics were in controlling and regulating neurotransmitters. While Mutaflor may not be your silver bullet, it's possible that a good overall probiotic treatment could have a positive effect.

    https://www.sciencenews.org/article/microbes-can-play-games-mind

    https://www.theatlantic.com/health/archive/2015/06/gut-bacteria-on-the-brain/395918/

    From what you're describing, it doesn't really sound like anxiety is at the heart of the problem, it sounds like your autonomic nervous system is getting some faulty information and not responding appropriately.
     
    Learner1 likes this.
  5. Learner1

    Learner1 Professional Patient

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    My naturopath has run circles around the many useless MDs I've seen, who have argued with me, lied to me, yelled at me, fired me, and couldn't read the abnormal labs I brought them.

    I've since seen an MD CFS expert who agreed with what my naturopath has been doing and can offer me a little further nuance, and shook his head at the incompetence and attitudes of the MDs I'd seen.

    There are good and bad doctors, no matter what the letters say after their names. I've stopped caring if they're an ND, DC, DO, MD or ARNP - what matters is what they know and if they can help me.

    You need a doctor who practices functional medicine, which looks at the body as a system of systems, and can figure out what's going on and help you.

    From what you've described, you have a multisystem problem. Taking an SNRI won't solve your underlying problem, and all psychiatric drugs can damage your mitochondria, complicating matters.

    Look for a Bastyr trained naturopath, they have a rigorous, science based approach, or a doctor who's been trained by the Institute of Functional Medicine.
     
  6. Prefect

    Prefect Senior Member

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    But anxiety has profound impact on the autonomic nervous system, especially if you chronically low grade hyperventilate, which I know I do. If my anxiety is reduced and I do more slow belly breathing it would impact my autonomic nervous system.

    Last week I went on Florastor, I'll wait a couple of more weeks to see what it does before I add another probiotic. Mutaflor is definitely on my radar, though I've heard rumors you can't get it in Canada.
     
  7. Basilico

    Basilico Florida

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    We used both Florastor and Mutaflor. For some reason, Florastor didn't work very well, even though it should be the same E. Coli Nissile 1917. Either that was a weird anomaly or something about the different formulation (drops vs. capsules) affects how it travels/gets absorbed by the GI system, so it might still be worth trying Mutaflor, which can't be bought in the U.S. - we order it from a Canadian pharmacy in Ontario, so I know it can definitely be bought in Canada.

    I'm not a medical doctor, so maybe your anxiety is related to the ANS issues you are having, anything is possible. Unfortunately, doctors tend to not investigate all possible causes when it comes to problems like this, so it is possible that something concrete (like gut flora, a dysfunctional vagal nerve, etc...) is causing the physical reactions that you perceive as anxiety.
     
  8. charles shepherd

    charles shepherd Senior Member

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    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.

    Add picture of acrocyanosis:

    http://mddk.com/wp-content/uploads/2015/11/acrocyanosis-pictures-2.jpg


    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
     
  9. Prefect

    Prefect Senior Member

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    What? Really? How recent was this and the name of the pharmacy?

    Florastor is Saccharomyces boulardii, a fungus. Took it last week to see what it would do to my unending diarrhea after catching my 2 yr old's tummy bug. It stopped the diarrhea in ONE day, I was shocked.

    Then I got researching and found out it may also reduce the virulence of the parasite Blastocystis hominis which I recently tested positive for and I'm sure I caught from my girlfriend last summer around the same time as my flare up (she travels a lot to Italy and it's prominent there). I'm trying to think of ways to convince my doctor to eradicate it, she think's it's non-pathogenic and apparently it's hard to treat. Another can of worms I need to focus on no pun intended.

    I've read SSRIs and SNRIs can improve POTS because they change your autonomic nervous system through targeted vasoconstriction. Also, POTS patients show high circulating norepinephrine. This is my theory don't know how to prove it, but if that's the case it's possible through this process your norepinephrine gets depleted and an SNRI would help some of the mental issues associated with POTS by ensuring more norepinepherine remains in your brain so you can think and focus better.
     
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    PM'ed you.
     
  11. Basilico

    Basilico Florida

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    I've been ordering from them for years. My last order was about 2 months ago. I will send you a PM


    Whoops, my mistake. I was thinking of SymbioFlor.


    If the mechanism that is helping is vasoconstriction, I wonder why alcohol would make you feel better since that's vasodilation.
     
  12. Prefect

    Prefect Senior Member

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    No idea. I think alcohol help because it dilates blood vessels and improves circulation, but more importantly is an NMDA Antagonist so it helps with anxiety.
     
  13. bspg

    bspg Plant Queen

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    Reading your symptoms makes me think low blood pressure. Not sure what would be causing it though. You mentioned borderline-low potassium...Have you ever tried using potassium-based table salt to see if you feel better?
     

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