Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Ivabradine / Corlanor - 80% Response Rate in POTS Patients (Nov / 2017 Study) + Poll

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Jesse2233, Dec 28, 2017.

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How has ivabradine affected you?

  1. Significant improvement

    0 vote(s)
    0.0%
  2. Minor improvement

    1 vote(s)
    5.3%
  3. No change

    1 vote(s)
    5.3%
  4. Minor worsening

    3 vote(s)
    15.8%
  5. Major worsening

    0 vote(s)
    0.0%
  6. I have not tried ivabradine

    14 vote(s)
    73.7%
  1. arboretum

    arboretum

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    I doubt that CFS being misdiagnosed as POTS has much truth - in terms of severity, symptoms of CFS would be much more severe than POTS. POTS and CFS, also, I think are pretty distinct conditions, even if CFS very often also has associated POTS.

    Most drugs, especially ones with relatively little evidence, and especially ones for other conditions, turn out not to be helpful. It isn't really worth the time, energy, money and stress to go around trying them until there's enough evidence that one is almost certainly effective.
     
  2. Hip

    Hip Senior Member

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    I found that taking more than around 2 grams of salt in one go would irritate the stomach, so to prevent this irritation I used divided doses, three times a day. Also drinking a lot of water with the salt helps prevent irritation.

    It sounds unhealthy to be taking all that salt, given that we are always told excess salt is bad for us, but if you think about it, provided you are drinking extra water which you then retain, to bulk out your body, you are not actually increasing the salt concentration in your body. Each liter of body fluid naturally contains 9 grams of salt.



    Yep, here in the UK we are still back in the Middle Ages, where illnesses were once thought to be caused by bad spirits that you needed to exorcise.
     
    Last edited: Dec 29, 2017
  3. AdamS

    AdamS Senior Member

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    @Jesse2233

    About a week...it made me so tired that I had to stop taking it. After attempting 3 treatments for POTS - Midodrine, Ivabradine and Propranolol, none of them worked (2-3 month trials for Mid/Prop) and I was essentially discharged from the system.

    My only management option since then has been pacing really, which all of my consultants reccommend. I haven’t been able to work for almost 12 months even despite pacing very carefully.

    *I did try salt loading and Nuun too but the benefits were barely noticable.
     
    sb4 likes this.
  4. sb4

    sb4 Senior Member

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    United Kingdom
    My experience: Took recomended amount for first 4 days, kept getting progressively better with heart symptoms, then after day 4 I experienced a big worsening which continued until I stopped the drug and it then took a few days to get back to base line. Can't remember what the exact symptoms where however it was a year ago, felt like my viens where being pinched, worrying heart symptoms (more than usual) and overall worsening.
    Tried again at half the dose, same thing execept it took longer. Tried again after that, same thing.
     
  5. Revel

    Revel Senior Member

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    Why so? POTS can be mild, moderate or severe and be every bit as disabling as CFS. I have had both for over 40 years and remember having a near total remission from CFS symptoms, only for POTS to come to the fore. It can be a pretty scary and brutal condition in its severe form.
    In my experience, when you have both at play, it can sometimes be very difficult to distinguish between them in terms of certain symptoms.

    Also, in the UK at least, very few clinicians understand what they are looking at in regard to CFS and POTS. Here, it's not unusual for a patient to go undiagnosed, not just for CFS but also POTS, for years. I saw 3 cardiologists, not one thought to test me for POTS. Instead, it was suggested that I had anxiety, and possibly depression, caused by "worrying excessively" about my health, and that these mental health issues were most likely related to my diagnosis of CFS.

    I eventually had to "diagnose" myself with POTS via the internet, change my GP then persuade him to refer me to a syncope consultant who had an interest in OI. At first, both my new GP and the syncope consultant were 100% convinced that I had been misdiagnosed with CFS and that I had severe POTS only. Two years further on, they finally agreed that I have both.

    In theory, you would expect that a medical professional could easily differentiate between the two physiological conditions, but in practice it's not that simple.
     
    Last edited: Dec 29, 2017
    Jesse2233 and Gingergrrl like this.
  6. AdamS

    AdamS Senior Member

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  7. ryan31337

    ryan31337 Senior Member

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    South East, England
    I've been taking Ivabradine for almost 12 months, 2.5mg twice a day.

    I find it to be more effective than low dose bisoprolol (less side effects too). Personally, I feel the Ivabradine has an overall positive effect on my energy levels & capability. If I had to be specific I would say I particularly notice:

    - Reduced tachycardia & breathlessness on standing
    - Reduced POTS 'anxiety' surges on busy days spent upright for longer
    - Greatly reduced nocturnal tachycardia that caused sleep hyperventilation and waking

    I had a 5 day break from Ivabradine, cold turkey, in prep for a repeat CPET off-meds. It was not pretty. For the first and only time in my life I felt I was close to experiencing an anxiety attack and my heart rate was 120+ seated.
     
    sb4 likes this.
  8. manasi12

    manasi12

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    I have inappropriate sinus tachycardia and POTS too. My pulse goes from 100 + at rest to 140 + on standing. BP initially drops and then goes up. So basically I have severe OI resembling hyperadrenergic POTS. But intriguing piece is catecholamines drop on standing.
    When I first tried ivabradine, I got catchlike chest pain. On my cardiologist's insistance , tried it twice again but any drop in pulse rate causes same chest pain. Then once again tried in evening withl low dose Atenolol and florinef in morning. Finally was able to tolerate it at 2.5 mg. Reduced evening tachycardia but couldn't control BP surges so back to Atenlol.
     

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