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I’m 21 and was diagnosed with bilateral menieres. Well I guess my question is does it get better?

Discussion in 'Your Living Room' started by JustLiving, Jul 12, 2021.

  1. JustLiving

    JustLiving New Member

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    I was diagnosed recently but my ent has been doing hearing tests, steroid shots in my ear drum, oral steroids, diuretic, etc for about a year. He’s finally told me he will be sending me to the Cleveland clinic because he can’t do anymore for me. I have my first appointment there in a month. I lose hearing in both my ears, liquid comes out sometimes, tinnitus, constant headaches, and vertigo that can last anywhere from 14 minutes to 4 hours. The brain fog is honestly the worst especially since I’m in college studying. Does anyone else get that? I honestly just feel hopeless and that my life is ending before it has even gotten started. I can’t do any of the things kids my age normally do…
    Does anyone have any tips about what has worked for them, different treatments, or just advice?
     
  2. redwing1951

    redwing1951 Well-Known Member

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    I am so sorry to read your story but want to assure you that this website will give you a lot of hope. It sounds like your ENT is going to send you to a specialist, most likely an neuro-otolaryngologist who is trained in neurological disorders related to the ear ….known as an OTO. This is very good news for you as they specialize in vestibular disease where an ENT is trained mainly ear,nose,throat connection. Menieres is definitely a vestibular disease. I am sure you will receive a lot of input from our members. There are many options for you to try. One thing I will tell you do not give up hope! There is a way out of your nightmare. I know this first hand after fighting the beast for 12 years. Please keep us posted on your visit at the Cleveland Clinic. Good luck!
     
  3. Onedayatatime

    Onedayatatime Active Member

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    You need to get with someone new. Thats for sure. Constant headaches and liquid coming out of your ears seems atypical for menieres. Simultaneous bilateral onset also seems unusual. Get a brain mri when u get with your new oto/neuro dr. to rule out other causal issues. Also read Bucholzz “Heal Your Headache”. It can help you understand the potential migraine connection to all this crap. Its a inexpensive book for Kindle. Think i paid $9. God’s speed my friend.
     
  4. SurferGirl

    SurferGirl Member

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    Please keep us informed as to what the Cleveland Clinic dr. tells you. I'm in the mist of a serious 5 day vertigo attack, nausea, headache. Tinnitus is constant. I, too, have followed the usual regime as you. I am relying on Meclize to help me through the day, which spent on the sofa. It's frustrating and debilitating. I am happy to hear your ENT is sending you to a specialist for answers. Good luck....
     
  5. John P Kimbell

    John P Kimbell New Member

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    First, do NOT give in to despair. I suspect everyone who has Meniere's very badly has at some time been depressed. I have had unilateral Meniere's for over 4 years. It took me a very long time to find a doctor who may be able to help me. My current doc is 6th I have seen. Here are my suggestions based on my own experience:
    1) As suggested above, find a neurootologist. Also, look for one that explicitly states they work with Meniere's and dizziness specifically. No one knows for sure what causes Meniere's so a doctor with a broader expertise than just an ENT is good, I think. Your existing doc may or may not have recommended you to an appropriate doc. Find out and change if not.
    2) Do not be passive. You are in charge, not the doc. He or she is there to help you and provide expertise, but you are in charge. Example: a well-regarded OTO suggested I have endolymphatic sac surgery. I researched the procedure and found out (via an NIH paper comparing it with gent injections) its success rate is lower than gentamicin injections and it is massively intrusive head surgery. I said "No".
    3) Educate yourself. In my opinion, best web place for info is Meniere's Disease. It is the product of Dr Timothy Hain, a very well credentialed doc in Chicago who is in a clinic dedicated to dizziness and balance issues.
    4) Pursue science-based solutions. I have found lots of scientific papers published about Meniere's suggesting various treatments may be effective. I tried all the of the non-intrusive ones before finally getting gentamicin injections: betahistine; diuretics; low sodium, no alcohol, no caffiene diets for a month; acyclovir (per Dr Gacek at UMass); & Pycnogenol (for tinnitus only). None worked for me, but some seem to work for some people. I use the word "seem" because Meniere's is a relapsing/remitting disease that can apparently go away, then come back months later. Several times I thought something had worked only to have an attack again after many months of quiet.
    I got a micro gent injection from a well-regarded OTO in Portland at Oregon Health Sciences University. Made me worse, which I expected initially, but stayed worse. When I asked about follow-on treatment, the doc sympathized but offered me nothing, particularly the additional injection(s) that are the recommended treatment course when using that drug.
    I finally found a doc nearer to me and have just gotten my third micro-gent injection. Still having mild to moderate episodes, but yesterday had the first vertigo-free day in maybe a year, so I am hopeful that this will be the answer for me.
    If you go the gent route, do it ASAP and make sure the doc tests your hearing before each new injection. With bilateral Meniere's, you must be especially careful to preserve as much hearing as you can.
    Keep pushing. Read everything you can. Listen to your doc, but make clear the important decisions are yours. Don't give up. We all have deeper strength than we know until we have to use it. Help will come if you reach for it until something works. Good luck to you...
     
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  6. JustLiving

    JustLiving New Member

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  7. JustLiving

    JustLiving New Member

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    Thank you so much! Really appreciate the kind words. I will post about what I learn from my appointment
     
  8. JustLiving

    JustLiving New Member

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  9. JustLiving

    JustLiving New Member

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    I was told by my ent that Meclizine is like taking Tylenol for a headache. If it does not help you I would talk to your doctor about diazepam. I only take it when the room starts spinning and it stops the vertigo pretty quickly like 10-15 minutes for me.
     
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  10. JustLiving

    JustLiving New Member

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  11. JustLiving

    JustLiving New Member

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    Thank you for the advice, I definitely will be getting the book. I had an mri of my head before but nothing unusual. They even tested my blood to see if I had an autoimmune disease attacking the nerves but it was negative . My ent said my menieres is strange and progressing rather quickly for my age. That’s why he’s sending me to another specialist
     
  12. SurferGirl

    SurferGirl Member

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    Thank you! The room has been spinning for 5 days. I usually wait to take Meclizine until I really need it. I take 1/2 pill, taking the 2nd half later. It does make me tired, so I will try diazepam. Isn't it interesting that ENT's have such varying opinions. Meclizine was prescribed by my Duke University doctor. I'm up for anything at this point. Thank you!!!
     
  13. Bahamasoutloud

    Bahamasoutloud New Member

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    I have cognitive issues, especially when the tinnitus starts. I haven't heard anybody else mention this as a symptom but my husband and I have both recognized that as part of this. Sometimes I have a hard time trying to articulate what I want to say and I just zone out.
     
  14. Onedayatatime

    Onedayatatime Active Member

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    Read the chapter discussing MAV to get primed. The book is a quick read.
     
  15. jaypr

    jaypr Member

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    Buccastem or stematil is another alternative to meclizine. Can shorten an attack considerably. Wishing you well
     
  16. Bahamasoutloud

    Bahamasoutloud New Member

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    I was just recently diagnosed and I asked my ENT about antivirals because that seems to be a great option for a lot of people on here. I was told if it was truly Menieres then the AV would not help. They keep pushing the diuretics so I guess Ill do that even though they make me feel yuk. Not sure why a natural diuretic wouldn't suffice. Thoughts on antivirals and diuretics?
     
  17. redwing1951

    redwing1951 Well-Known Member

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    I never took antivirals but you are correct many folks on this board have had great success using them. My OTO from Mass Eye and Ear Infirmary in Boston was not a believer in the virus theory when I started seeing him 8 years ago. I did do low sodium and diuretics for many years and when I first started taking them they were of benefit. Once my menieres advanced nothing helped. I tried a gent shot that gave me relief for about 8 months from vertigo. However the side affects of feeling off balance and feeling like I might have an attack everyday lead me to a laby. I had developed drop attacks so that was the final straw for me.

    If you search this website you will find a lot of information on anti virals from people who have found relief from them. Good luck.
     
  18. Pa Cowboy

    Pa Cowboy Member

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    Antivirals haven't worked for everyone but because it's so simple you should at least give it a try.
    Send this link to the ENT and tell him/her you are desperate and want to try antivirals.
    https://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
    If the Doc doesn't agree ask your family doctor for antivirals, don't stop looking for a doctor that'll give you what you want. My family doc agreed and prescribed valacyclvoir, within 3 days my fullness disappeared but it took 6 months for the vertigo to abate, stick with it.
    About 2 months into taking antivirals I made an appointment with my ENT to get my hearing checked and told him about my progress with antivirals. His response was, "Never heard of that" and he brushed it off like I was dreaming.
     
  19. Bahamasoutloud

    Bahamasoutloud New Member

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    Thank you for this. I have an apt on Monday with my ENT..
     
  20. Marta

    Marta Active Member

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    Please look at To All the Newbies thread on here. Loads of thoughts and experiences described. Perhaps you will find your answer there. Best of luck.
     
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