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Antivirals and fullness

Discussion in 'Your Living Room' started by Rebecca, May 19, 2020.

  1. Rebecca

    Rebecca Member

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    I''ve read threads on here where some were saying stopping the antiviral meds helped to lesson the fullness in the ear. I've had MM for over 20 years. Low sodium, low sugar, no caffeine, very little alcohol, and taking a water pill, after a couple years, and for 10-12 years seemed to help keep me from vertigo and extreme fullness. Over the past year and half the fullness, pressure, brain fog, headaches, sometimes ear aches has gotten worse. At this time, it never goes away. Once in a while I have a day or a few hours of a day where It is a little more tolerable and I feel a "little" relief. ENT started me on Betahistine several months ago which I have to purchase from Canada. It doesn't really seem to be helping, but I'm afraid to stop for fear the tinnitus I'm now experiencing in other ear might be MM, and it "might" be keeping me from having full on spinning vertigo. ENT sent me to UC Davis in Sacramento CA to a doc that specializes in Otolaryngology (ENT/Ears, Nose, Throat), Otology/Neurotology, Otolaryngology ... I completed all the testing, VNG - CT Scan - MRI - hearing test. I spoke to him about the possibility of shunt surgery and a little about MAV and he said I could see one of their docs to see if MAV is a possibility. But, when I told him my fullness and pressure and feeling off balance is constant and a real problem for me having any type of life, he said I could consider the surgery. He doesn't do the shunt part because he feels it poses more risk and about 75% of the docs that are doing this surgery now feel they are getting the same results without the added risks for possible facial nerve damage or brain leakage and infection. He did explain to me that his 70 to 80% success with this surgery is based on vertigo. He doesn't have stats for the other MM symptoms relief, such as fullness and pressure. He said he can not guarantee they would be relieved, but, that the surgery could do that. Anyway, after 2 45 min to hour long visits discussing all this, I scheduled the surgery for June 1. After reading 4 or 5 posts on this forum of people who had bad experiences with the surgery, I'm pretty scared to go through with it. Going through surgery and having it not work is one thing. Having it make me worse is really scary. Sorry this is so long.... What peaked my interest was a couple people mentioning they think the antivirals made their fullness worse. So, I'm asking if there is more information on this? Or, are there people on here that had the sac surgery that good results to balance the negative posts??
     
  2. Brother_of_Nool

    Brother_of_Nool Member

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    Out of curiosity, how much sugar to you consume each day?

    I had the same fear as you - if I stopped taking my pills, would the Ménière's spread to my other ear? I don't have an answer for that. But I'd ask my doctor about dropping the pills for a little bit, just to see what'll happen. You can always start your pills again…. you can't undo a surgery.
     
  3. Daniel.E

    Daniel.E New Member

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    Jan 28, 2020
    MM is caused by a virus!?? Why take antivirals for MM? Latest studies show that MM is caused by a malfunction of the endolymphatic pressure valve (Bart valve).
    I don't take water pills anymore and I don't see a difference.
    I take B5 & B6, I think they help.
    If you are looking for a permanent solution why not gentamicin instead of surgery?
     
  4. John of Ohio

    John of Ohio Member

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    Why take antivirals for MM?

    Because large numbers of people who have done this, without the complications of an injection, have gained profound relief.

    Personally, I devised a regimen of several over the counter supplements, led primarily by the amino acid lysine, which is a herpes virus replication inhibiter. For over a dozen years, now, I've been free of Meniere's symptoms. I have over 250 personal reports from others who have gained relief from the components of this regimen.

    --John of Ohio
     
  5. Daniel.E

    Daniel.E New Member

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    Thank you for your reply and your help!
    I take 1000mg lysine and a B complex, I think it helps, but I’m not 100% sure. What kind of antivirals, valtrex? I asked my ent to prescribe me an antiviral, but my blood tests did not show that my body was fighting a virus..
     
  6. IvanA

    IvanA Member

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    In my country AVs are sold without a prescription, but they cost $ 60 for 15 days, with a prescription they should cost 80% less. For now I am going to try the JOH regimen, Vit B complex and Monolaurin. If it doesn't work or it works halfway, I'll try to convince my doctor.

    BTW, AVs are for herpes and you don't need to be prescribed an ENT, you can ask a general doctor too.
     
  7. June-

    June- Well-Known Member

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    Antivirals and allergy treatment took away the fullness as well as about every other symptom for me. I was treated by Dr Derebery of House Ear Clinic in LA. All i can say is I regained my hearing and lost a host of other miserable symptoms with her treatment.
     
  8. LadyG07

    LadyG07 New Member

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    How much healing was lost that you regained? How long did it take to come
    Back? Did you do allergy shots? How is tinnitus now?
     
  9. LadyG07

    LadyG07 New Member

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    Sorry I had a typo- I meant hearing...
     
  10. June-

    June- Well-Known Member

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    I took allergy shots for about 8 years. I think in 2-3 years i had gotten the full benefit, the rest was maintenance so to speak. I took antivirals for about 3 months with additional 6 weeks courses here and there. I got most of the benefit in the first three months. My hearing problems were of two kinds. I had hearing loss mostly in the lower registers. I dont have my old audiograms handy but i think i had 50 dcb loss in the low range at one pojnt. It was classified as a moderate loss. It was sensorineural loss. That returned to about 20 or 25 dcb loss which normal for my age which at that time was my 60’s. I also had a loss in the highest range which never returned. It was above the range of speech and not a great loss so it is not a bad problem. The dr said it is typical to be able to regain some of the lower frquency loss but the upper frequency structure is more fragile and usually does not come back.

    Even though i only have one hearing ear, Hearing loss was not my greatest problem. What was the hardest to bear was the distortion. I heard voices bouncing off glass, motors in big box stores no one else could hear, i had strange bangings and clangings, a jet engine tinnitus in my ear 24/7 and my own voice sounded like a kazoo.antivirals got rid of a whole lot of this fairly quickly. It seemed like the allergy treatment took care of the rest including the hearing loss over a long period of time. My hearing is not perfect but it is darn good and any remaining distortion and tinnitus is slight ‘White noise’. Changed my life. Good luck.
     
  11. LadyG07

    LadyG07 New Member

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    Thank you for this info. If you don’t mind me asking, how long has you had hearing loss when your hearing was restored? I have had MM for 5.5 years but my hearing really took a hit the last 2. I too have moderate loss. I plan to pursue allergy treatment after I have the baby I’m currently pregnant with. I have tried high dose antivirals in the past and they didn’t yield any results however I have had allergy testing which revealed I was very allergic to most environmental allergens despite me not having allergy symptoms.
    While I can’t pursue this pregnant I’m hoping I can get relief soon. Were you having allergy symptoms? Were you on high dose antivirals?
     
  12. LadyG07

    LadyG07 New Member

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    Hi John,

    I appreciate very much what you have done for the MM community. I however have some questions on this and I don’t mean for this to sound challenging just genuine curiosity. My MM flared up about 4 months after the birth of my son in 2018. I was diagnosed 3.5 years prior with very few symptoms (one vertigo attack a year with no other symptoms). I was put on antivirals immediately after diagnosis but noticed no real difference Bc again I was having so few symptoms. When my MM flared up I was having ear fullness, tinnitus and dizziness but no vertigo. Even to this day I rarely get vertigo (knock on wood). When my symptoms flared up I tried the Gacek protocol for antivirals along with your protocol.
    It made absolutely no difference. I stayed just as symptomatic. I reached out to Gacek and he said if I hadn’t had symptom relief within the first 3 weeks (specifically w hearing loss) then it was probably not my issue. I didn’t want to stay on 3grams of valtrex a day if it wasn’t going to Help me so I eventually stopped. Is it fair to say that for some of us a virus isnt the cause? I just so badly wanted the protocol and antivirals to work I have just never found benefit for myself.
    I am about to have my second child and really need to get thing best managed as the tinnitus and fullness toward the end of my pregnancy are becoming very difficult to manage. The dizziness that comes and goes is also a huge challenge. Any advice is welcome. Thank you so much. I just so badly want something to work for me. I’ve tried everything.
     
  13. John of Ohio

    John of Ohio Member

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    No doubt, not all cases of Meniere's are caused by herpes virus infections of the inner ear.

    The taking of B-vitamin complexes, in higher than RDA doses, has yielded relief for some (well, probably many). Very much worth a try. Here's a high-quality multivitamin with ample B-vitamins and other helpful components: https://www.vitacost.com/vitacost-synergy-once-daily-multivitamin

    --John of Ohio
     
  14. IvanA

    IvanA Member

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    Can you explain how to know if the cause is an allergy? Are there any other symptoms? Are there tests? Or just get vaccinated and check if it works?

    It is that my otorrinos only did an MRI, as nothing bad appeared in it, they told me that it must be either a small malformation that I have or meniere's disease. I have had an x-ray of the cervical because I suggested it as a possible cause and I am waiting for the result; but if nothing appears on the radiograph, I suppose I will have to propose again what tests to do next. I have thought about ordering antivirals and asking about possible allergies.
     
  15. JoannefromJersey

    JoannefromJersey New Member

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  16. JoannefromJersey

    JoannefromJersey New Member

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    Going through the same thing now. 2006, diagnosed with hydrops in right ear, 5 yrs later, had first vertigo attack, lost some hearing, eventually got hearing aid. Now, on June 6th, all of a sudden, started to hear tinnitus on left ear, my GOOD EAR. Within 4 hours, lost all hearing, started on Prednisone next day, also taking shots in ear. Will start on Antivirals tomorrow, also taking allergy tests. BTW, found my doctor on this forum years ago. Hope my results turn out like yours. Just so mentally taxing. If I didn't have the hearing aid, I wouldn't be able to function. Hearing test for speech discrimination sounded like two pieces of metal shard rubbing against one another. Some hearing has come back, but it's the muffling that makes it hard to understand speech. Hoping for more improvement.
     
  17. Weeba

    Weeba New Member

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    Jun 19, 2020
    John, should I be taking Vit. B5 and B6 along with the other compotents in your regimen?
     
  18. John of Ohio

    John of Ohio Member

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    The use of B vitamins (at higher than recommended daily allowances), particularly B-5 and B-6, has been posted by others; not a specific part of my regimen.

    Nonetheless, very much worth trying, along with the regimen. There is no conflict; probably a synergy.

    --John of Ohio
     

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