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Pilot with Menieres

Discussion in 'Your Living Room' started by Shayne Wolfe, Feb 27, 2021.

  1. Shayne Wolfe

    Shayne Wolfe New Member

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    Hey guys, new to the forum and relatively new to Meniere's. I'm in a sticky situation and would like some input. I'll try and keep this brief and avoid a long-drawn-out story.

    I was recently pseudo-diagnosed (not officially diagnosed) with Meniere's after a year of random bouts of dizziness and occasional vertigo. All the classic signs of Meniere's but not as extreme as some I've read about on here. As of right now, I average about 1 episode per week - all of which tend to be dizziness and not really vertigo. Since the symptoms started a year ago, I've only had rotational vertigo maybe 4 times and they all only lasted max an hour. On to the more interesting part:

    A year and a half ago, I began my journey into aviation after I got accepted into the American Airlines Cadet Academy which takes you from zero experience all the way to a pilot in the airlines. It's always been my dream to fly, so this was obviously fantastic for me and a major step towards achieving my goal. Right when Covid hit, I got an inner ear infection (Labyrinthitis). This was easy to deal with because my school had shut down so I just took it easy for a few weeks and everything seemed to heal up. I went back to school and the day after I got Instrument Rated, I got super dizzy again even though it seemed like my ear infection had gone away. Went to the ENT and they basically told me that I'd never fly again because I have Meniere's. He wanted to give me a Gent injection right there but I had no idea what was happening because I was so distraught about being told I'd never fly again. I saw two more ENT's after that where they basically reaffirmed what the first ENT said but were against doing anything other than me changing my diet. It has now been 8 months since I last flew, and although my diet change has helped slightly, I still get those pesky random days where I'm couch/bedridden - not enough of a change to give me the confidence to continue school...

    Here is the problem:

    The FAA says that a pilot needs to go 3 months "vertigo" free before they would even consider giving a medical certificate. There have been some reports of pilots getting the Gent injection and having no problem getting the cert and getting back to work. I am halfway through school and 50k in debt from it. My loan was put on hold to give me the time to figure out what to do, but that is about to expire and I'll need to decide whether or not I can continue going to school (I have until June).

    The question:

    1. Should I just assume aviation might not be a reality for me anymore?
    2. Should I take a break from Aviation for a few years to evaluate my situation and see what happens?
    3. Should I just take the plunge and get the Gent injection so by June/July I can maybe get back to flying?

    My current ENT is personally against giving me the gent because of my age (he said it's usually a last resort) but said he would if I wanted him to. He also informed me that it could just go away after a while but I'm not convinced mine is just going to "go away." I'm desperate for some advice, the anxiety is killing me. I just miss flying. :(

    Personal Context:

    I'm 29 y/o and consider myself very healthy. Since January 1st, I've only eaten a carb/sugar-free diet (mostly carnivore), and very low salt to no salt. I consume very little caffeine, quit smoking tobacco (used to smoke cigars regularly). I routinely work out and am on the John Of Ohio regiment. Since starting all these extremes, I haven't noticed much change in my symptoms although it's only been two full months at this point since making the changes.
     
  2. Mr. Tom

    Mr. Tom Member

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    Man, that's a tough position to be in. My Meneires cost me my class A CDL, my hearing in my right ear, and also cost me my job as a licensed pipefitter and eventually having to sell my house..... Damned expensive disease.... Anyhow. take a look at this thread: New Surgery For Meniere's - Endolymphatic Duct Blockage (EBD) This *may* be an option for you.
     
  3. Shayne Wolfe

    Shayne Wolfe New Member

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    Thanks for your reply! That really sucks man. I'm praying I don't have to give it all up.

    I haven't looked too much into that because most resources I find talk about the effectiveness of Gent injection over anything else. I should mention, my hearing seems to be mostly unaffected as of right now. Other than the fullness I get during an episode, my hearing always seems to come back to normal. The hearing tests I have taken have shown a decrease in the lower frequencies. My tinnitus isn't noticeable most days either. From some of the stuff I've read on here, it seems like some people have tinnitus really bad.
     
  4. Mr. Tom

    Mr. Tom Member

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    Hopefully you can find a good solution for you. One thing to keep in mind is that with Meneires what is normal about it is that there is no normal. Everyone has different symptoms with pretty much the same outcome. For years I had no hearing issues, but like you when an episode was coming my hearing in the bad ear would pretty much go away and come back afterwards. One day it went away and never came back. Also my tinnitus gets so pronounced at times it interferes with the other ear. This is not to try to scare you, but to give you an idea as to what you might expect. There are surgeries that you may want to look into. One is to cut the nerve in the ear (Vestibular Nerve Section | Severe Meniere's Disease | Ear Surgeon San Jose California) and another one is known as a laby (Labyrinthectomy for Meniere’s Disease - ScienceDirect).
     
  5. Shayne Wolfe

    Shayne Wolfe New Member

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    It seems like the Gent or the EBD might be my best option.
     
  6. Mr. Tom

    Mr. Tom Member

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    Explore all your options. You are making a decision that will last a lifetime! No pressure........LOL
     
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  7. Shayne Wolfe

    Shayne Wolfe New Member

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    :D:D;)
     
  8. Cheryl

    Cheryl Active Member

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    Hi Shayne, Welcome to the forum, though I'm sorry you have to be here. You're in a tough spot.

    Mr. Tom has offered good advice. Also, I think you owe it to yourself to see a neurotologist. Meniere's is over the head of most ENT's. You want to make sure you're actually dealing with Meniere's before you have any type of procedure. You need to move on from any ENT that tells you Meniere's might just go away. You need testing to rule out other conditions. Have you had an MRI?

    If you want to say what state you live in, someone may be able to point you in the direction of a good doctor to see.
     
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  9. Shayne Wolfe

    Shayne Wolfe New Member

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    Hey Cheryl, thanks for the reply. I live in South Florida. I have had an MRI and it came back clean.
     
  10. redwing1951

    redwing1951 Well-Known Member

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    I agree with Cheryl. Find a neurotologist. They specialize in the brain and vestibular system. If you live near a teaching hospital that is a good place to start. I am fortunate to live near Boston and my OTO is a Harvard professor and his practice is at Mass Eye and Ear Infirmary. He gave me back my life after living with meneier’s for 12 years. Best of luck to you.
     
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  11. Shayne Wolfe

    Shayne Wolfe New Member

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    I just looked more into my Doctor and according to his website, he specializes in Otolaryngology / Otology & Neurotology. His name is Dr. Drew Horlbeck in Fort Myers, Florida. The only tests he's had me do so far is the MRI, and a hearing test.
     
  12. arcticblueice

    arcticblueice Member

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    Hey Shayne,
    Definitely a sticky situation, sorry to read about it. You picked the right place for guidance. I developed Meniere's disease in 2015 which became bilateral in 2017. I also have been using the John of Ohio regimen, low salt diet and 24mg of Betahistine every 8 hours. I have not had any vertigo or dizziness for nearly 12 months now. You may have already come across there is "your Meniere's and my Meniere's", finding out what will bring your symptoms under control takes time, patience, trial and error. Betahistine requires a prescription and is available At just about any compounding Pharmacy. There are a few other things to try before looking at surgery. I wish you the very best...
     
  13. IvanNew

    IvanNew Active Member

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    I do not know how a Cadet Association works, but even if you find an unofficial cure, it is likely that they will never let you fly again because you are diagnosed with Meniere.

    That said, Meniere is a barrier to many things obviously, but many people in this forum have achieved things, for example one user continues to dive, others managed to raise their children and now they enjoy their grandchildren, I finished the Degree in Law and so far this year I have already passed half of the subjects to be a lawyer. A girl works as a nurse in the middle of covid, etc.

    You will have to adapt your life to the circumstances and intensity of your illness, but Meniere is not the end of the road, it is simply a new road without asphalt and some potholes.

    Each person finds improvement in different things, but the first thing you should try is a low sodium diet, quitting excitements (caffeine, theine, etc.), alcohol, drugs and tobacco. Second try taking betahistine, the first time it takes several months to take full effect, although in a few weeks you should already notice something.

    The above can be combined with the two alternative treatments that are giving the best results in this forum: the JOH regimen and / or antivirals. Both also take months to give results, JOH about six months, antivirals 2-3 months. You can find more information about them in the database (above the web).

    Having ruled out the non-invasive methods that I just said is when I would really consider intratympanic injections or surgery.

    And yes, it is very likely that with time it will improve. 80-85% of Menieres improve only with time, what happens is that it is not a rapid improvement, 8-10 years may pass. My uncle had Meniere at 40, the medications weren't working for him (betahistine wasn't prescribed then) and he didn't want injections or surgeries. He had a pretty bad time for six years, from then on he improved and from the age of 50 until his death he made the life he wanted: Cultivate large areas of fields, take care of cattle, beekeeper, etc. Of course this improvement is not total, my uncle simply stopped having vertigo attacks, but he always had dizziness, tinnitus and hearing loss.
     
  14. Autumninthefall

    Autumninthefall Active Member

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    Never say never! Remember Alan Shepard. Too bad the House Clinic isn’t east coast.
     
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  15. Autumninthefall

    Autumninthefall Active Member

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    Shayne, I don’t know if anyone on the forum knows, but people have told me good things about The Shea Clinic in Memphis. Gentamicin is jumping the gun.
     
  16. redwing1951

    redwing1951 Well-Known Member

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    I agree gent shots are a big step so explore every alternative. Here is the good news when you have reached a point in your journey where you just can’t do it anymore then there are some really good alternatives but make sure you are ready!
     
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  17. Nathan

    Nathan Well-Known Member

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    Is it possible to divide your studies into symptom compatible & symptom incompatible elements—theory vs. flying experience, for instance—so to pursue the former while undergoing treatment, & the latter when or if asymptomatic?

    If possible, this may allow you to obtain credit toward an alternative area of study within the field of aviation if the latter fails to materialise, too.
     
  18. lwhitehead

    lwhitehead New Member

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    Something else you could explore is Exercise with Oxygen Therapy (EWOT) to help reduce inner ear inflammation.

    I hypothesise that an ear infection/labyrinthitis results in inflammation in the tissues which surround the ear. This inflammation chokes the small capillaries that supply the inner ear with blood (oxygen, nutrients etc.).

    Unfortunately it seems very difficult to reengage circulation after an 'injury' to these capillaries which surround the ear. In your case the injury was caused by an infection, but could also be caused by stress, concussion, barotrauma etc. Although the John of Ohio protocol seems promising at restoring circulation, it's not always 100% effective.

    There's an interesting testimonial here from someone who uses a LiveO2 EWOT system and gains relief from their Meniere's symptoms:

    Here's more information about the LiveO2 system and how inflammation can cause an oxygen 'brownout' to tissues:

    The system is expensive to purchase, but there may be places in South Florida where you can pay for individual sessions: https://www.healingrestored.com/bookings-checkout/live-o2-session-w-infrared-sauna

    Could be worth a try!
     
  19. California Sun

    California Sun Active Member

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    It seems very unlikely that someone with Meniere's would be able to continue to fly. Meniere's disqualifies someone from having a CDL, and flying with Meniere's seems a whole lot more risky than driving with it.
     
  20. yellowboy

    yellowboy Active Member

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    You have my sincere sympathy that this has screwed up your career. I am one of the lucky ( ???) ones that got this shortly after I retired. I worked in law enforcement and could never have worked with this crap. I think one of the reasons I have so much of a problem dealing with this is because I was a guy who was always super aware of my surroundings, noises (gun shots), what people are doing, how are they acting, how they are dressed etc, etc. because I had to for my job. Now I am just another old man with Menieres .
     
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