How long to notice impact of joh regime?

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So I've been following joh for two months now and haven't really noticed anything yet. In fact ive had more occuring attacks of dizziness and vomiting. Even had to miss work one day. I also take serc 24mg twice a day. Don't smoke. very little coffe and alcohol. I am however a very nervous person prone to anxiety. what i don't understand with this disease is how i can be fine for 3 days and then bam noise in ear goes through the roof, fullness starts and world spins when apparently I'm not stressed feeling fine....Sorry for rambling I just feel helpless sometimes and scared.

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  • Posted

    Hi Peter this awful disease has been with me for 30years now and doctors and consultants have a knowledge of the disease but not fully understood I can not fathom out a disease that can give you respite but no warning of impending attacks and how long they will last The very nature of this disease creates an air of anxiety it's hard to plan ahead and you lose friends because of it .

    I wish you good luck for the future my friend regards John

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  • Posted

    Hi Peter

    Same for me, I have been on JOH for approx 2 months now, did not feel any difference, I had a major vertigo after 6 months and minor episode every week specially when sleeping, feeling positional vertigo as well, stopped taking Vinpocitine and positional vertigo got fixed but came again when starting Vinpocitine again. Feels like Betahistine has stopped working on me. Fullness is not going away, tinnitus is OK, feel sick some time, went to GP and finally asked for Diuretic which is helping me to control fullness and sickness but dizziness is not going away. Feeling little healthy and strong as well. Worst time is when I get up in the morning but after taking shower and taking medicines, things start getting better. Day part is better, can work without problem, keeping busy is the best strategy but after work things start again.

    Booked chiro next week for 4th session, it helped me to fix the neck and eye pain issue but things are coming back.

    Thinking to revisit the diet plan (most important), got one episode after eating Oats in breakfast, trying to avoid gluten as much as I can. From my last 15 episodes, probably 10 were due to eating food high in gluten, blood test for gluten allergy came negative, got confused but still trying to avoid gluten.

    I will move to total fruits and vegs as last resort because this helped me when MD was diagnosed.

    Did you try Diuretic? try leaving coffee and alcohol as well for a week or two.

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  • Posted

    Hey Peter, I'm sorry that you have not been feeling well. The JOH regimen says that it can take up to 6 months to work. I started feeling better after 30 days on it. I also am taking betahistine, 24mg every 8 hours – I have my complete daily regimen posted here:

    https://patient.info/forums/discuss/meniere-s-disease-my-personal-daily-regimen-686166

    The day to day battle with this wretched disease is awful. I have been feeling much better after taking the JOH for 3+ months now. By the grace of God I have been spin free for 60+ days now.

    I hope that you will feel better soon, hang in there brother...

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  • Posted

    Hi Peter, I'm sorry you're having such a bad time with menieres.

    I'm feeling really well myself at the moment thankfully, after coming through one of the worst prolonged periods of menieres since I got it 4 years ago. I started antiviral medication 3 weeks ago, but I had already started slowly, slowly to improve for a month or so before that, so it's not possible to say if the antiviral is having an impact or not (but I'm going to keep taking them!)

    We're all trying different things and meds and the JOH was next on my list. Each of us probably get remission periods at different times, and it may be linked to taking a certain medication, or it may not. But if something seems to work for any of us, that's a great thing. So I'm not recommending antivirals, as I think it's much too early to tell.

    But I've done other things which are definitely helping me, even if it doesn't 'cure' my menieres. I have been putting a huge emphasis on my overall general health, rather than just focusing on menieres.

    I feel the important things are:

    1. A good balanced diet;
    2. Enough good quality sleep;
    3. Lots of exercise, and this is super important;
    4. Good gut health - taking daily, a natural, live yoghurt, as well as either a Kefir drink, or sauerkraut;
    5. Emotional and mental wellbeing, and I strongly believe this is crucial for physical wellbeing. Each of us are a single organism, and if something isn't well in one area, it can impact negatively on other areas.

      I am trying to look after all of the above. It might not get rid of my menieres, but it's certainly going to give me the physical resources to better deal with it. But importantly, rather than feeling beaten, and controlled by my MD, I am feeling more impowered, and that is a really good place to be.

      I hope this might be of some help or encouragement.

      Take care.

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  • Posted

    thanks for your replies. when i get very dizzy i take anti anxiety meds to control the severity of the attack. it helps me. anyone do the same? Christ I'm like a walking pharmacy!!

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  • Posted

    have you tried any surgery's yet. I just had the Endolymphatic sac surgery a month a go and so far so good, . I still get fullness but never vertigo

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  • Posted

    Hang in there, the thing about MD is it seems to be ever changing. As easily as you feel dizzy you can feel dizzy-free. It's frustrating because what works so well for someone else may not work for you or me 😦

    Low sodium diet (a good healthy diet and not over indulging in general) seems to help my tinnitus, but not my dizzies. I wear bilateral hearing aids now (i've had MD for decades) as the disease is taking my hearing.

    I certainly completely understand your statement about being scared. I get paralyzed with fear sometimes. But remember that this isn't fatal, remission and management is possible... it's a matter of hitting on what works for you. Come here and talk to others who understand, And know, you are not alone. 😃

    Take good care,

    ~Mary

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