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My story so far....

Discussion in 'Your Living Room' started by joebiosolid, Dec 27, 2017.

  1. joebiosolid

    joebiosolid New Member

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    Hello everyone, I wanted to share my story on this forum, (have already learned alot) and hopefully get some feedback on my "dance" with Meniere's

    I first noticed a problem with my hearing during the last quarter of 2014. I seen a ENT & audiologist, and after some tests I got some hearing aids and figured it was because of my age. (59) I had two very minor vertigo events during this time, but thought it was because of another medication I was taking. Fast forward 3 or 4 months and I started getting some "fullness" in my left ear. My ENT prescribed some steroids and the fullness disappeared. In the fall of 2016, I started to have some vertigo attacks, most minor, a few major. At this time I still wasn't aware I might have Meniere's. In May of this year, the vertigo attacks became more frequent and intense. My ENT was quite sure I had Meniere's by this time and instructed me to go on a low salt diet and prescribed a daily dose of a diuretic (Diamox). My symptoms immediately got better and for the next 5 months my hearing had improved to the point that I wasn't wearing my hearing aids, and my doctor started backing off my medication to three pills/week to see if that would be sufficient.

    The feeling of fullness and tinnitus started coming back in mid-October, and I had a vertigo attack on the 20th that put me in the ER because I couldn't keep anything down. I went back to the original dose of the Diamox which controlled the vertigo but it was ineffective for the tinnitus/fullness, so he referred me to the an Otolaryngology Clinic. the Doctor there wasn't much help and put me on a different diuretic which hasn't really improved my symptoms. We had the family over for Christmas Eve but I had such a bad case of tinnitus that I had to retire early after taking a valium. I also seem to be experiencing Hyperacusis lately which has been hard to deal with.

    I feel I have been lucky and blessed so far as that I have been able to be diagnosed early with the disease, so feel that some of the suggestions from this forum could really help me in the future. Any comments or advice that you may have would be very encouraging.

    Sorry for the long winding speech....
     
  2. Hi Joe. Wretched time of year for this disease to pick up speed. Other members on the forum will be giving you useful advice, and have been here much longer, so I’ll only say: As you already know, you’re not alone! ::hugs::
     
  3. scott tom

    scott tom Active Member

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    Hi Joe

    Welcome to the site. The vast majority of people find partial or full relief through various methods and are able to live quite normal lives. This forum has the really hard cases, as most people move on after they get relief. Don't assume that you'll be one of the tough cases. The odds are greatly in your favor. So don't be discouraged. Try everything.

    There are several things that can cause Menieres-like symptoms. You can find an exhaustive list here:

    http://www.dizziness-and-balance.com/disorders/index.html

    You should first have yourself checked for all the possibilities by various specialists. Be sure to get the full workup. For example, without an MRI, you cannot rule out tumors. Without a high-resolution scan, you cannot rule out SCD. There are a a lot of different tests for different things.

    Get a second and third opinion. A lot of doctors spend less than 10 minutes looking at your file and then make a diagnosis. A lot of folks here have been diagnosed with one thing (e.g. Menieres), only to find out years later they had something else (e.g. MAV). The treatments for these two illnesses are vastly different!

    Check your diet. MAV can often be controlled with diet. Viral-related Menieres requires that you control your Arginine-Lysine ratio in foods.

    A lot of folks have found relief from antivirals. Obviously, this doesn't work for everyone, but for those of us who are viral-related, it works about 90% of the time (this number is based on published data by Dr. Gacek in peer-reviewed journals). This is a good place to start reading about antivirals

    http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf

    https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf

    Many people have found relief from various supplements. The most famous one on this board is JOH. You can find his regimen here:

    http://www.zoominternet.net/~kcshop/JOH.PDF

    If you think you might have MAV, read this book:

    https://www.amazon.com/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&qid=1498501145&sr=8-1&keywords=heal+your+headache

    There are many other regimens that have worked for others, so be sure to read all the threads on this site. There is a wealth of information here that has been built up over 20 years of experience.

    Even if nothing works, don't panic, because you can always get a labyrinthectomy, which almost certainly will end your vertigo problems. Just make sure you know which ear is bad and that you're not bilateral (even then, you can laby both ears in a last resort scenario).

    Lastly, while it's good to listen to your doctor, also listen to your body. You are your best advocate. If you think your doctor isn't giving you the best treatment, get another opinion. Keep searching. Most people who found this site eventually left because they got better. Many of the remaining folks are the really tough cases, so don't panic and assume that you'll be one. Think positive and get started on your journey with both eyes and ears open.

    Good luck. We're here to help.
     
  4. joebiosolid

    joebiosolid New Member

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    Dec 18, 2017
    Thanks for the info scott tom. I've already ordered the supplements from JOH's regimen, and will talk to my ENT about the anti-viral medicines.
     
  5. joebiosolid

    joebiosolid New Member

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    Also, could MAV explain the tinnitus/fullness in my ear? I used to get migraine headaches frequently in my teens through my early 30's and then they slowly tapered off. I've had a couple since I was diagnosed with Meniere's but the headache that usually follows after the vision changes was very minor.
     
  6. Mac

    Mac Active Member

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    My only advice as someone who is 10 years into this...

    Your doctor has no invested interest in finding out the cause of your MM. That is entirely up to you. Try everything. Spend as much time on this site as you can digging through old threads and try to connect the dots for yourself. I just found this website after 10 years. your lucky your on it early.

    My mistake was listening to a surgeon for the first 8 years. Don't do the same...wishing you all the best!!
     
  7. scott tom

    scott tom Active Member

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    Yes, it could be. Try the migraine diet immediately and see if it has an effect.
     
  8. zotjen

    zotjen Member

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    If the hyperacusis is only in one ear, an ear plug might help, especially in noisy environments.
     
  9. joebiosolid

    joebiosolid New Member

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    Having a bad case of tinnitus right now. Last event was on Christmas Eve. Fullness is gone for the time being and no vertigo so I'll see how I am later. Also received my JOH supplements today so starting on that tomorrow.

    Wish me luck!
     
  10. PapaJoe

    PapaJoe Member

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    Sorry you find yourself here Joe.

    I've been researching this for a number of years and feel that MM is likely multi-factoral, meaning you likely have two or more concurrent stealth infections.

    Folks on the board here are good sources to ask about anti-viral and there has been success with anti-fungal treatments as well. Poor gut health and systemic yeast infections can contribute, and systemic yeast infections are pretty common.

    Additionally, I'm looking to see if there is a link between MM and stealth dental infections. Since dental infections are very close to the trigeminal and vestibular nerves (the blood flows from the teeth past those nerves) and the toxins may be what triggers MM symptoms.

    Please check this thread http://menieres.org/talk/index.php?topic=2830.0 to see if it's possible that you have any of the dental risks.

    Feel free to ask questions.

    Good luck!
    Papa Joe
     
  11. BayMama

    BayMama Member

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    Welcome joebiosolid! So sorry you are having these issues, and glad you have found this helpful place.

    I have both MM and MAV, which is very common. I also had migraines when I was younger, and started getting them more in recent years.

    I have had vertigo from both those, plus from BPPV. It's taken a while to sort it all out, but I have learned a lot and now when I get flare ups, I have a good idea of what to do.

    Antivirals, JOH, managing my migraine triggers, and the Epley Maneuver (for BPPV) have made a huge difference for me.

    I never did the whole migraine diet. For me the main migraine trigger setting of vertigo was eye strain at my computer. There are some foods I've cut out of my diet and others I eat in moderation. I believe that for me the hyperacusis is related to migraine. Take a look at the list of migraine triggers. You may notice some obvious suspects for you.

    Good wishes finding what helps!
     
  12. joebiosolid

    joebiosolid New Member

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    As I mentioned, I started the JOH regimen on December 29th, and I started taking valacyclovir on January 25th. My family doctor has been very supportive and agreed that the JOH supplements were worth trying and also agreed with subscribing the anti-virals after she read Dr. Gaceks paper and treatment dosage. My ENT, although hesitant at first, also agreed with the treatment after reading Dr. Gacek's paper.

    As of today, my hearing is greatly improved, and I've experienced no vertigo since January 27th. I still have some tinnitus, aural fullness, and hyperacusis/recruitment?(those symptoms always seem to run together) but nothing like I was experiencing in the last quarter of 2017. So, although I may have some bad days, I'm measuring my progress by the week.

    I'm assuming that my ear is still healing and that eventually the tinnitus and associated symptoms will gradually improve. What is really nice is the return of normal balance in my day to day life.

    I want to thank everyone here for your help and support! The information provided on this forum has made a world of difference in my life and I am truly blessed to have this place as a resource to turn to. I hope I can help other sufferers of this disease in the future.
     
  13. Mac

    Mac Active Member

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    That is awesome news man...Congrats!

    Hopefully your good health continues!!
     
  14. joebiosolid

    joebiosolid New Member

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    Dec 18, 2017
    Well, I may have spoke to soon....

    Shortly after my post on March 2nd, some of the menieres symptoms have started to re-appear. I think this is because I was following Dr. Gacek's dosage schedule for valacyclovir, and in the third week of taking two pills/day is when the problems started. I am back on three pills/day for the foreseeable future and will stay at that dosage until I see some substantial improvement. One thing is for certain, you have to have patience when combating this ailment. I will keep everyone posted on my condition in the hope that folks in the future can use this information, as I really wish I would have stayed on the maximum dosage longer until I felt that the virus was completely suppressed.
     
  15. June-

    June- Well-Known Member

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    While you are at it, try to reduce all kinds of stress if you can. Ie get enough sleep, dont aggravate allergies, try not to get sick etc. Good luck!
     
  16. joebiosolid

    joebiosolid New Member

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    Update - I'm still on 3000 mg/day of valacyclovir, and progress has been slow. On the plus side, no vertigo episodes and mild tinnitus. The only symptom that persists is the aural fullness that tends to get worse during the day due to loud sounds. With the increase in fullness there is also a increase in tinnitus. After work when I can control my noise environment better, the fullness will somewhat subside. I don't have the fullness when I get up in the morning. Of course, some days are better then others, with no rhyme or reason as to why. Has anyone else experienced this fullness that can get worse through the day due to loud noise?
     
  17. rwj6001

    rwj6001 Member

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    My pressure changes on a whim, with no reasons that I can identify as to why. I work in a fairly quiet place (IT support) and it can change several times throughout the day. What I have found that does seem to help is long lasting decongestant, like the 12 hour time release kind. It doesn't relieve the pressure, but it seems to help stabilize it. I try not to eat the stuff every day, but when it starts to get bad I take it and it helps.
     
  18. mbgphoto79

    mbgphoto79 Member

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    Yes. Tinnitus, even when not associated with MM, usually responds to noise by getting louder. This is a big deal for me at work as I’m in retail. Between the stress of the job itself and the varying noise level, my tinnitus can get quite loud.

    Another thing that does it for me is sodium. I’ve been on a strict low sodium (>1000mg/day) diet for a few months now. If I make a mistake and eat something even relatively salty I can feel the pressure start within minutes. This is always followed by worse tinnitus. Usually it subsides within a day.
     
  19. joebiosolid

    joebiosolid New Member

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    If I made a mistake and ate something with to much salt in it, I usually wouldn't see the results of extreme tinnitus and/or vertigo for 12-24 hours after the event. Luckily, that hasn't been much of a issue since I started on the anti-virals.
     

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