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Menieres or EBV?

Discussion in 'Your Living Room' started by Nicole76, Sep 24, 2019.

  1. Nicole76

    Nicole76 New Member

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    Sep 24, 2019
    Chicago
    How do you know if it's Meneires? I've had some off balance issues every so often but no vertigo or drop attacks. I've seen a total of four ENTs over the years but none have suggested Menieres either but I'm still concerned.

    My history -

    Oct 2013 - Suddenly felt like I was going to tip over to the right. Feeling came back off and on for awhile over the next year.

    Aug 2014 - Saw ENT about on going balance issue. Did VNG tests and hearing test since I was also having intermittent tinnitus (which went away before the actual appointment). Hearing fine. Conclusion - virus attacked right inner ear. Balance weakness of 35%. Opted not to do physical therapy. It would come and go and wasn't too bad.

    Oct 2014 - MRI with contrast to rule out tumor. None.

    Jun 2017 - Started feeling weird. Lots of pain in neck, teeth, and fullness in left ear. Anxiety attacks, depersonalzation, and brain fog. More off balance again. GP prescribed Methylprednisone pack. Helped neck and nothing else.

    Jul 2017 - Right ear starts ringing (very low).

    Sep 2017 - See new ENT about the ringing. Hearing test reveals high frequency hearing loss (4000hz-8000hz) of 10db in right ear, left ear normal. Tested for allergies which come back positive. Start taking Zyrtec daily.

    Apr 2017 - Same symptoms from Jun 2017 start plus some weird head tingling and complete loss of appetite. Sinus infection diagnosed with possible eustachian tube dysfunction. Sinus infection clears on own but right ear tinnitus which never changed volume or was reactive during the past year and a half starts becoming bothersome. ENT does hearing test and shows identical results as test in Sep 2017. Thinks allergies.

    May 2017 - MRI of head clean except cyst in right maxillary sinus. X-ray of neck clean.

    Jun 2017 - Tons of blood work reveal positive for reactivated epstein barr virus and a high ANA (1:320) which was only 1:40 during routine wellness exam months prior. GP and rheumatologist unconcerned.

    Jul 2017 - Integrative doctor starts me on Lysine and Vitamin C. Also taking vitamin D, magnesium glycinate, probiotics, and melatonin.

    Jul 2017 - See another ENT when I notice a low level ringing in left ear when lying on pillow. Does hearing test. No change from April. Diagnoses eustachian tube dysfunction based on symptoms (no testing of inner ear pressure which was done in April and was normal). Try nasal spray but doesn't help anything.

    Aug 2017 - See allergist for retesting. No allergies. Claims ENTs testing method in 2017 was faulty. Also see neurologist about nerve pains in head and sensation at night like my head is being crushed. Claims migraines and says my supplements should help but will take time. Suggests methylprednisone for more immediate relief. Take it and it lowers the tinnitus and helps me sleep at least while on it and for a week after.

    Sep 2017 - See new ENT because tinnitus was getting louder again and am having fluctuating fullness and itchiness in both ears. Uses scope to check opening of eustachian tubes and there's no inflammation. Suggests my issues are anxiety based. Tells me he has tinnitus in both ears and just deals with it.

    CURRENTLY ---

    I'm having more annoying tinnitus in my right ear, sometimes noticeable tinnitus in the left ear during the day (so not just when lying on the ear now), head buzzing, fatigue, brain fog, and worst of all - sensitivity to noise. Certain noises are causing my ears to close up. I've become a hermit because going out in public is painful. My hearing feels muffled but over sensitive at the same time.

    Sleeping with the ringing is difficult, and I'm experiencing the head crushing pains at night as well as pains in my joints. I got a night guard for teeth clenching from the dentist but it seems to make me feel even worse the next day.

    I don't know if all of this is the ebv wreaking havoc and I just need to continue my supplements, or if I need to look for more causes. Note - I started taking monolaurin on 9/4 and just got up to 1/4 scoop three times a day. I read to go low and slow with it.

    I also just convinced my doctor to prescribe Valtrex but am having second thoughts about taking it. I'm worried it could make the ringing worse and it's already taken its toll on me. Also seems like the valtrex really only helps the vertigo for most people which isn't my issue. All I know is that my ears are malfunctioning and feel weirder every day which is causing me distress.

    Please Help! It seems like I'm getting worse instead of better and just desperately want relief.
     
  2. Bonlyn

    Bonlyn Active Member

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    Dec 29, 2017
    New York
    Hi Nicole and welcome.

    Sorry you are having such a bad time. It is interesting all the things we seem to have to go through in order to find the right remedy for what is triggering our attacks. As members reply to your post you will find that not everything works for everybody, but we are here to be a sounding board and try to help you out.

    First, you say you wear a teeth shield for teeth grinding...did you ever get treated for tmj. It seems there are special dentists and chiropractors who you really need to see to heal you of that. TMJ can play havoc with the vestibular system.

    A lot of what you mentioned sounds migraine associated vertigo (MAV) related. The tinnitus, sinus infections, hearing fullness. If you haven't read Heal Your Headache by David Buchholz, get it off of Amazon ASAP. In addition to giving food triggers, it explains a lot of misconceptions in regard to Migraines.

    I was diagnosed with MAV a few years after menieres, but one thing that put my MAV in remission for a year was taking 400 mg of vitamin B2 ( riboflavin) 600 mg of Magnesium glycinate. Since then I have added COQ10. I also take a high dose of vitamin c and lemon bioflavonoid for my menieres routine, but I think it helps for migraine too. Unfortunately weather is a big trigger of mine, but can't t control that.

    When I have menieres attacks I have spinning vertigo. When I have MAV attacks it is terrible ear pressure, off balance, tilting..not spinning vertigo, head pressure and neck pain. I generally vomit more with MAV attacks than menieres.

    There is a search box on the top, if you type in Epstein barr, you may get some hits. There may be an active member now with some experience.

    In regards to the menieres did you look up John of Ohio's ( JOH) regime? You mentioned you are taking lysine, but is it a high enough dose? Also are you taking lemon bioflavonoid with that?

    Whatever you do, start one regime at a time, so you know what works. Also give the regime some time, sometimes things like Valtex can make you feel much worse for a couple of weeks, before you feel better.

    I know other members will chime in that have more expertise than I, but just want to start you out with some tidbits and not overwhelm you. I hope you can find some answers and support as you go through this experience. Best to you. Bonnie
     
  3. Nicole76

    Nicole76 New Member

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    Sep 24, 2019
    Chicago
    Hi Bonnie, thanks for your reply! I am currently taking magnesium glycinate but only 225 mg nightly. Maybe I need to increase it.

    I have seen the JOH regime. Unfortunately the lemon bioflavonoids, while they seemed to quiet the tinnitus a bit, would give me headaches and weird heart palpitations in the middle of the night. I tried them a few different times just to make sure they were indeed the culprit. That was disappointing.

    I'll look into that book for sure.

    I did search this forum for ebv already and did some reading before positing. I feel like all I do lately is research trying to figure this all out. :) So much conflicting and antedotal information out there makes it hard to make decisions though. :(

    Of all my ailments the one I most want to get rid of is the tinnitus and it seems to be the most stubborn one too.
     
  4. Nicole76

    Nicole76 New Member

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    Sep 24, 2019
    Chicago
    Oh forgot to answer the lysine question. I'm taking 3000 mg per day (1000 mg 3x).
     
  5. Bonlyn

    Bonlyn Active Member

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    3000 mg per day seems like it should do something. Since you tested positive for EBV maybe you should try the Valtex. There was a member named Scott Tom who said they cured him. Since he was cured, he does not check in on the forum as much, but in regards to anti virals he has a wealth of information. Search for his name and you will find a lot of his posts. I think he deemed himself cured February, 2016 ( for searching purposes.)

    EBV is a type of autoimmune disorder (AD) in which for some-- menieres is also. I read once you get one AD, you are susceptible to get more. Basically you have inflammation in your body...from what -- you have to find out. I know for me Gluten is a killer to my system.

    Have you ever gone on an anti- inflammatory diet? It can be very helpful. Once my vertigo attacks were getting longer in duration and number of episodes, it became easier for me to forgo a lot of foods like dairy and sugar. Nightshades ( tomatoes, peppers, eggplant, etc.) are a killer for me too. Which is so sad for me because eggplant parmesan is my favorite food in the world.

    I still have to follow a strict diet because I do not have my symptoms under control, but some people can be more lenient once they go in remission.

    I think you work your way up to vertigo attacks and when you are in the later stages of mm you may get drop attacks. In the early stages it might just be balance issues. I had tinnitus for years before it developed into vertigo.

    Also not all allergy tests can pinpoint food sensitivities that can trigger things.

    I have non stop tinnitus in my left ear. It varies in intensity, but it is always there. It can be annoying, but I seem to tolerate it. What is more annoying and debilitating to me is the ear pressure. It varies at times, thankfully I take betahistine and that seems to help a bit with the ear pressure, but not the tinnitus.

    When I have a MAV attack I get pressure in both ears, maybe a little tinnitus in my right ear, but it is not as discernable since the left ear is so loud. You mentioned at times you have issues in both ears, that seems kind of MAV like.

    I remember coming across a site a year ago, that was like this, but its main focus was tinnitus. It seemed like most of the people were from Britain. Did you ever come across that forum...most of them did not have menieres, they just were overwhelmed by their tinnitus. I WILL try to find it again.

    Finally in regards to the bioflavonoids, did you try a different brand or form? I can't take tablets, but do better with capsules. But even if you can not take the bioflavonoids, it is good you are taking a lot of vitamin C.

    Well I hope from all of your researching, you can come to peace about what step you want to take next. Let me know what you think of MAV after you read the Headache book. Best to you. Bonnie
     
  6. Nicole76

    Nicole76 New Member

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    Sep 24, 2019
    Chicago
    Yea, I've seen his posts about valtrex and they were the inspiration for me requesting the prescription. I think I'm going to have my doctor run the ebv testing again first to see where I stand. Sometimes I think my ear issues are more neck and posture related but I'm not positive.

    I have been on an Anti-inflammatory diet for two months now but haven't seen much difference in symptoms. Maybe I'm expecting too much too soon, I don't know.

    I know what website you're talking about - tinnitustalk. I'm on there. It's good and bad. Lots of info but also really scary. I am still hoping mine will go away one day or at the very least go back to a lower level and stop being reactive. If it's softer and can be masked then at least I won't notice it 24/7 and I can find some peace like I had the first year and a half after it started.
     
  7. Bonlyn

    Bonlyn Active Member

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    New York
    Hi Nicole,

    Unfortunately everything they tell you to do, they say do it for at least three months before you decide to quit. I was on some migraine drug for a week, it made me feel like a zombie, I could not do the 3 months, but in regards to the migraine disorder diet and anti inflammatory diet, give it at least 3 months.
    The only thing that ever gave me relief in a week was when I cut out gluten. That was a terrible trigger for my menieres and diabetes.

    In regards to the forums, I understand..it can be scary. A lot of the people that go in long term remission never come back to post, so most of the members who post are people with the most extreme case scenarios.

    That is why I recommended you look up Scott Tom's post because he is a success story on anti virals.

    Since not all doctors know much about menieres, or mav..this forum is also a good way to get insight from people who have access to renowned vestibular specialists like Dr. Rauch and Dr. Gacek. Since it seems to take months to get appointments with these specialists. I live north of NYC, I called a noted center near me in August, the center told me next available appointment was April 20, 2020. No words for that.

    So try not to get discouraged, do the best you can a day at a time. :)
     
  8. Bonlyn

    Bonlyn Active Member

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    New York
    Hi Nicole,

    Hope it is a good day for you! I sent you a message...under start a conversation. Not sure if you used this before, but look up at the top right of your screen after you log in. Should have a red alert button. Tootles, Bonnie:)
     

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