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Nasal rinse for sinusitis - experiences?

Discussion in 'General Treatment' started by Sasha, Nov 2, 2012.

  1. Sasha

    Sasha Fine, thank you

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    That's impressive about your ENT doctor!

    Don't you use the irrigator daily? I was recommended to start with every other day but I'm having a run of sinus headaches at the moment (possibly because I'm titrating off Flixonase) so I'm going for daily. I don't know if there's a fine line between not doing it enough and overdoing it.
  2. ukxmrv

    ukxmrv Senior Member

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    When the infection was at it's worst, I was using it every day. Then went to every 2nd day.

    Put sea salt and tea tree in water that I have boiled and then let cool down.
    Sasha likes this.
  3. nanonug

    nanonug Senior Member

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    No worries, Sasha, you didn't upset me. I was just worried that I was upsetting you.

    I must say that it pains me to see people being diagnosed with ME/CFS because it means that nothing will be done for them. As my signature say, I am fairly convinced that ME/CFS is simply undiagnosed MCAD. It is for this reason that I try to have people checked for the condition.
  4. Sasha

    Sasha Fine, thank you

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    Thanks, nanonug, I'm glad I didn't upset you. :)

    I had a look at the threads where you discuss MCAS and googled a bit on it and came up with some NIH and other stuff. Perhaps because it can be a multisystem disorder, I'm struggling to find something that tells me what symptoms or constellation of symptoms (or perhaps number of symptoms) should send me to a doctor to ask for test for MCAS. I found the source paper for the list you mentioned and some of the symptoms, including sinusitis, fatigue and so on, are fairly common symptoms that on their own wouldn't seem to be specific to a particular syndrome. The symptoms that keep getting mentioned are cutaneous and GI symptoms, neither of which I have; I'm also not aware of clearly allergic symptoms, which also seem to be an important indication of MCAS (I don't know what is causing the sinusitis). I can see from the clinical papers that there are a bunch of tests that would indicate MCAS but presumably you need to have sufficient symptoms to suggest that you have MCAS for you to have those tests in the first place.

    Also, I haven't seen any mention (in the few clinical papers I've found) of orthostatic intolerance, post-exertional malaise (by which I mean delayed and building neuro-immune symptoms usually including fatigue) or unrefreshing sleep as part of MCAS, which also made me think I don't have it, although I appreciate that you see PEM as consistent with your hypothesis.

    I'm wondering if I've missed something somewhere where there's a decision algorithm for people to look at their symptoms and know whether that's likely to mean MCAS is possible/likely.

    Anyway, I understand if you'd prefer not to get into it - I just wanted you to know that I took what you said seriously as a possibility and I wanted to explain my reasoning for not immediately seeing it as a strong possibility.
  5. nanonug

    nanonug Senior Member

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    The problem is, because mast cells selectively release up to hundreds of mediators, everyone will have a different cluster of symptoms. I invite you to have a look at this long presentation by Dr. Afrin, a mast cell activation syndrome expert: Systemic Mast Cell Disease: An Update (PowerPoint). In this presentation, you'll be able to find a bunch of case studies that, at first blush, don't have anything to do with MCAS.

    This is the way that I see it: the symptoms you describe as having are all explainable by MCAS (or sistemic mastocytosis, for that matter.) Of course, this doesn't mean that MCAS is the right explanation. However, in my opinion, it is an explanation worth exploring. Why? Because, unlike ME/CFS, it is both testable and treatable!

    Fair enough. I see it then as a failure on my part to properly communicate what I was trying to say! :)

    Oh, by the way, orthostatic intolerance may indeed be associated with mast cell issues:

    Hypertension. 2005 Mar;45(3):385-90. Epub 2005 Feb 14.
    Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders.

    Shibao C, Arzubiaga C, Roberts LJ 2nd, Raj S, Black B, Harris P, Biaggioni I.
    Source

    Division of Clinical Pharmacology, Department of Medicine and Pharmacology, and the Autonomic Dysfunction Center, Vanderbilt University School of Medicine, Nashville, Tenn 37212, USA.
    Abstract

    Postural tachycardia syndrome (POTS) is a disabling condition that commonly affects otherwise normal young females. Because these patients can present with a flushing disorder, we hypothesized that mast cell activation (MCA) can contribute to its pathogenesis. Here we describe POTS patients with MCA (MCA+POTS), diagnosed by episodes of flushing and abnormal increases in urine methylhistamine, and compared them to POTS patients with episodic flushing but normal urine methylhistamine and to normal healthy age-matched female controls. MCA+POTS patients were characterized by episodes of flushing, shortness of breath, headache, lightheadedness, excessive diuresis, and gastrointestinal symptoms such as diarrhea, nausea, and vomiting. Triggering events include long-term standing, exercise, premenstrual cycle, meals, and sexual intercourse. In addition, patients were disabled by orthostatic intolerance and a characteristic hyperadrenergic response to posture, with orthostatic tachycardia (from 79+/-4 to 114+/-6 bpm), increased systolic blood pressure on standing (from 117+/-5 to 126+/-7 mm Hg versus no change in POTS controls), increased systolic blood pressure at the end of phase II of the Valsalva maneuver (157+/-12 versus 117+/-9 in normal controls and 119+/-7 mm Hg in POTS; P=0.048), and an exaggerated phase IV blood pressure overshoot (50+/-10 versus 17+/-3 mm Hg in normal controls; P<0.05). In conclusion, MCA should be considered in patients with POTS presenting with flushing. These patients often present with a typical hyperadrenergic response, but beta-blockers should be used with great caution, if at all, and treatment directed against mast cell mediators may be required.
    Comment in

    PMID: 15710782
  6. Sasha

    Sasha Fine, thank you

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    Thanks, nanonug - I'll take a look at that stuff in detail. Thanks for taking the time!
  7. Sasha

    Sasha Fine, thank you

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    Update - it's three weeks now since I started the nasal rinse and after the first three days I've been doing it daily, using Neilmed's sachets and four drops of grapefruit seed extract.

    I haven't had a headache for ten days (I think I was getting Flixonase withdrawal headaches before that) and the discomfort under my eyes is very much reduced - much better than it ever was with the Flixonase.

    I'm very grateful not to have had any of the awful headaches! I'm going to keep using the nasal rinse daily to see if I can get rid of the remaining discomfort and keep the headaches at bay.
    nanonug and ukxmrv like this.
  8. Lotus97

    Lotus97 Senior Member

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    I've tried the neti pot before, but I didn't like it. I'll probably give it a go later because I've heard so many good things about it. Recently I think I've had some success with grapefruit seed extract and colloidal silver nasal sprays. The colloidal silver one might have caused some herxing, but I'm not sure. I don't like jumping to conclusions about health related matters.

    Just a warning for anyone using a neti pot or making your own nasal spray. You MUST boil the water before using it:

    http://well.blogs.nytimes.com/2012/09/03/rare-infection-prompts-neti-pot-warning/

    Sasha likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    post nasal drip i find can get really bad and is hard to treat until i started using an atrovent nasal spray, this helps to dry the nose out and stop the post nasal drip which is annoying but also but also can wake one up with constant coughing to try and clear the throat at night. But its still only symptomatic treatment.
    Sasha likes this.

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