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Those who have Meniere diagnosed with MRI.

Discussion in 'Your Living Room' started by IvanA, Jun 24, 2020.

  1. IvanA

    IvanA Member

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    Did any of you find a small malformation in the ear when doing the MRI?

    In my case, they found me a malformation: An artery that "could" be the cause of my symptoms because "could" be pressing on the nerve. The problem is that it is "could" and not "is".

    I have asked all the doctors I saw and they all start by saying that it may be the cause and that if it is not, it is Meniere. But then I keep asking and they tell me that malformations are very common and that everyone has a chance to have a resonance and that they do not affect life. Also that the malformations are from birth, they do not occur with aging. And finally, when asking if it can get worse or for the better, everyone tells me that a malformation never changes, so it will always stay the same.

    So, they themselves are telling me that I have this malformation since birth and that the malformations never change ... How can that be my cause if I have not had any problems until I was 30 years old?

    Also, my symptoms did not come suddenly. At 30 I noticed that my ear was blocked after a slight beep and I heard something worse. At 33 the tinnitus began and two months later the vertigo attack. After this attack I had severe dizziness, headaches, mental fog and hyperacusis in the following months.
    If a malformation does not change and always produces the same symptoms, it does not make sense that they have occurred in three years.

    I asked all of this to a medical friend and he said that 99% sure that the malformation was not the cause, precisely because it should have bothered me since I was a child.


    For me this is all a problem because I don't know what I'm fighting against. I am taking JOH, monolaurin and tomorrow I am going to order Valtrex; but they can't even tell me if I have Meniere. So if someone else around here has experienced a case similar to mine and improved by taking these things or others, I would be reassured to know.
     
  2. PleaseNoDizzy

    PleaseNoDizzy Member

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    Yes, my MRI showed something like this too. I forget the exact details, but my oto showed it to me on the scan. He insisted it was a coincidence (even though it was my affected ear) and my ENT husband agreed, said he saw them all the time in residency. So far, my other/good ear holds strong. I am pretty sure it didn't have the malformation.

    FWIW, oral and injected steroids, JOH, and AVs did nothing for me.
     
  3. IvanA

    IvanA Member

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    Thanks for answering. At least I confirm a little my suspicion that this malformation could not be asleep for 30 years and suddenly start attacking.

    I have been with JOH for a month, in five days I will do a month with Monolaurin and today I have started AV Valtrex. Since I started JOH I noticed my ears less clogged and the tinnitus has had enough days when it goes down, the daily dizziness has stopped for the first time three days ago. I cannot say that it is for all those things that I have taken, it could be the remission of the disease itself; but at least it encourages me to keep trying. Anyway I have started saving for more expensive treatments, in case my ENT confirms me once that it is Meniere.
     
  4. Weeba

    Weeba New Member

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    My MRI showed a small cyst on my sinus which the ENT said was very common and nothing to worry about.
     
  5. Steven Putnam

    Steven Putnam New Member

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    I go in for my MRI next week, anything particular I should ask my doctor about?

    A little background male 55 overweight, I had intermittent ringing in my left ear for years. But about a year ago was driving and I turned my head left and was swamped with the dizziness, immediately felt warm and clammy thankfully I was close enough that I made it home. Went to the doctor one look in he gave me a steroid shot, boom it was gone but then it blooms into a nasty case of shingles.

    So I start to have extreme vertigo about 2 weeks ago and I notice a couple of small patches of shingles rash so I get a prescription for Valacyclovir about 4 doses in a begin having extreme vertigo, waves of numbness on my face and hands, heart racing etc.

    I finally go to the emergency room get and EKG and cat scan ER doctor speculates Meniere's disease and gives me a prescription for Antivert to use as needed and we schedule an appointment with an ENT, he takes a look and tells me it is likely Meniere's but he wants an MRI first. That was Friday and we are eating and drinking from Meniere's diet spread out. So first of all, the Antivert from the ER doc had my heart racing face feeling numb and like it was swollen too so I cut that back, Benedryl seemed to be a better alternative even though I had one or two of the same episodes though not as severe. But finally, about 4 am Saturday morning the ringing stopped ear still feels full but it stopped till I had another brief less severe episode Saturday night basically heart racing, and my nervous system is pinging. Used a massager on my head and neck took a couple of benedryl and it knocked it off mostly. Didn't sleep great and I've been up since about 5.

    Id do just about anything to avoid the vertigo episodes,they are scary as hell, Ive downloaded the JOH regimen

    any ideas to ask the doctor because he mentioned blood pressure meds and I really would rather not do those unless it's completely necessary. Thanks for listening.
     
  6. IvanA

    IvanA Member

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    The only thing you need to know about the resonance is that you have to be very still while they are doing it and it makes a lot of noise, ask for earplugs that give them to you and put them well deep.

    About your case, it has too many strange things. Were you diagnosed with herpes zorbes without testing yourself? And they only gave you 4 doses of valaciclovir? The only clinical trial on viral overdue shows that there was improvement after taking 1000mg three times a day for three weeks, then 1000mg twice a day for three weeks, and then 1000mg a day for another three weeks.

    In this forum many people have had to be on the maximum dose for 2-3 months before being able to reduce to 1000mg twice a day. It is something that the patient himself calibrates according to how he improves or not over time, but what seems certain is that with only four doses nobody has improved. From what I have read because high and constant doses (of any medicine, supplement, etc.) are needed for them to penetrate the blood barrier of the inner ear.

    Personally I would ask my doctor to let me take antivirals for a month to see what happens. On what things you can ask your doctor, there are a lot; but this is pure chance. There are people on this forum who got better while taking antivirals and healed everything with a steroid injection for a muscle injury that was unrelated to the ear. Other people get better by treating allergies and getting vaccinated for several years. Others improve leaving gluten, others going to the osteopath to put the cervicals, others taking vitamin 100mg of vitamin B5 and 100mg of B6, others do it with JOH and I have not seen anyone in this forum yet, but I read that a thyroid problem in many people could be the cause of Meniere.

    In summary, you can ask your doctor for an appointment with an endocrine, with an osteopath, with an allergist, with a nutritionist, etc. I would start with the antivirals, JOH and vitamin B5 and B6 because in this forum it is where the most good news has been given and it is the most, relatively, easy to get. If you are from the USA, I imagine that making appointments with specialists will cost much more money depending on the health insurance you have. In my case, at each appointment with my doctor and my otorrino I ask for tests because they are by public insurance. It will take longer to get done, but at least I can discard things without breaking the bank.
     
  7. zotjen

    zotjen Member

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    Well if you have Meniere's the MRI probably won't show anything. The purpose of the MRI is to rule out other possible causes for the vertigo such as an acoustic neuroma. Have you had a hearing test yet? Hearing loss, specifically in the lower frequencies, is one of the main symptoms of Meniere's.
     
  8. Steven Putnam

    Steven Putnam New Member

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    Thanks for the reply, yes I had the hearing test and yes there is some hearing loss in my left ear. The ENT doctor wants the MRI to make sure it isn't anything else. He seems to think it's Meneire's and said something about blood pressure meds
     
  9. Steven Putnam

    Steven Putnam New Member

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    Jun 28, 2020

    No have more prescribed valaciclovir I was just having bad side effects from it. Thanks for the reply
     
  10. IvanA

    IvanA Member

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    Valaciclover is the best AV for most people, but in this forum other people improve with other AV like famiclovir or aciclovir. Perhaps these do not produce side effects. Also, keep in mind that one of the side effects when AV works is feeling worse the first two weeks with worsening symptoms.
     
  11. Jedirusty

    Jedirusty New Member

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    They found a vascular loop around an auditory nerve when i had my MRI. This could be causing my tinnitus and hearing loss.
     
  12. IvanA

    IvanA Member

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    Well, the otorrino who has touched me today in consultation (every time I go there is a different one) has told me, without asking him anything, that in the resonance everything was fine except for that small dilated artery, but that it was not the cause of my symptoms. Something he already told me on the phone a few days before, also without asking him, to tell me what day he should go to his office.

    It is not good news because I am still ill, but I prefer to have Meniere that there is always a possibility that a cure will appear in the 30-40 years that I have left of life. A malformation of an artery in the inner ear is inoperable because it is very risky, there is also the possibility that they will invent improvements in microsurgery that will allow it to be safely treated, but I see it as more difficult.
     

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