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Newly Diagnosed - Meniere's Disease

Posted , 5 users are following.

Outfielder16
Outfielder16

I began experiencing vertigo last August. First attack put me down for a week. Finally got in to see a specialist in October and by December, we discovered I had a tumor growing inside my head - it had completely eradicated the endolymphatic sac and was pushing against the dura. It was removed in January and while I had some hearing deficiencies, the vertigo was gone instantly. Fast forward to two weeks ago and I went down with the worst vertigo attack to date. I got back in to see the doctor and he has diagnosed me with Meniere's Disease. I am apparently a strange case because I do not have the endolymphatic sac in that ear but the pressure and fluid build up is tremendous enough to take me down again. Placing a shunt into my ear is not an option. I was originally told to take 25mg HCTZ, but discovered yesterday that the dosage is way too high since I already take 12.5mg in my blood pressure medication. We are going to cut it back to 12.5mg in the morning and then my BP meds at night to see if that stablizes me some. I am on a low sodium diet - no more than 1,200mg of sodium per day. This has been extremely difficult for me because I work full time, am a part time student and a competitive roller derby skater. I have used all my PTO up already and forsee me having to take more time off if these attacks continue. I am just looking for a place to gain insight on this condition, tips to manage it and overall support. Many people do not understand how debilitating vertigo is. My last attack was 24 hours long and the residual effects lasted 3 days after that. It is impacting my mental health and while I know stress does not help, it's difficult not to be stressed out. I am terrified to go to sleep at night because I dread waking up to my ceiling spinning. I have to be careful now exerting myself in skating and my gym routine because of the diuretic. I had my pity party over the weekend, but I am still struggling with the what-if's and fear of vertigo attacks.

1 like, 4 replies

4 Replies

  • JMJ
    JMJ Outfielder16

    Posted

    Dear Outfielder,

    I'm so sorry to hear what you're going through, and wish you didn't need to join this "club"!  It must have been pretty traumatizing to first find out that you had a tumor, to have it removed, and THEN end up with MD anyway!!  Geez.  What an awful thing to go through!!!  

    I was diagnosed with MD last July, and I could hardly believe that anything could be so debilitating as this (the vertigo!).  Like you, my episodes were quite long in the beginning, and the "hangover" could so on as long as 5 days.  Vestibular retraining and balance therapy (a series of 12 sessions in an outpatient physical therapy setting) helped me to learn how to cope more effectively with the episodes, but it wasn't until December when I began steroid injections into my inner ear, that I began to feel a true reduction in frequency and severity of the vertigo.  The hearing in my right ear has left me at an alarming rate, and the tinnitus is crazy loud and fluctuating.  I really need to stay on the Dyazide (HCTZ & Triamterene) and the low sodium diet.  I guess what is most distressing to me, is that life has become so unpredictable.  For the longest time, I didn't make ANY plans, because invariably, I would be sick. I was a hermit for quite a while. Now, friends and family finally seem to "get it" and I make plans with the understanding that if something happens, I'm just not going to be able to make it.  I've been in dangerous enough situations where I now have a GreatCall emergency button with me at all times, which gives me more confidence in terms of moving about outside of the house. I think it's normal to go through a phase of self pity....It's such a huge and unexpected life change.  I agree that vertigo while in bed is pretty scary.  I often woke up feeling like I was falling out of the bed.  High stress, getting dehydrated, and over exertion, tend to bring on my symptoms,  so I try to keep everything pretty even and constant. Before MD, I used to be in the gym 6 days a week, and I'm just now thinking  of starting some walking and eventually going back to the gym.  I don't know if it will shake things up, but I just don't feel good after a year of being so inactive.   The upside is that people don't die of Meniere's, and some lucky ones have spontaneous remissions!  And I have to say that I'm a true believer in the the inner ear steroids - They take a few months to kick in, but it was worth it for me.  

    You really have to be gentle with yourself.  Fighting it won't help.  I've heard many member say that they've had their ENT write a letter for them, explaining the problem, that they can give to their bosses at work.  

    Do you keep "rescue meds" with you at all times?  Meclazine and something for nausea & vomiting?  (I use Zofran ODT when I can't swallow anything, and Glycopyrrolate when I can still take a pill.). 

    Well....I hope you find that as time goes by, that symptoms become less frequent and less severe.   I'm sure you'll get a lot of help from people on this forum.  They're really great, and willing to share their thoughts and experiences.

    Take good care....

    J

  • victoria86526
    victoria86526 Outfielder16

    Posted

    Welcome aboard.  There is SO much good information on here. Read through some of the older posts that have a variety of coping methods - everything from diet and exercise to massage and medical treatments. Most important to continue this very cool sport that you love. Not only will that help you mentally but the physical act of keeping your balance and sweating is a big help. You need the fluids in your ears to keep moving.

    The fear of the next attack is a HUGE issue and if you are able to include therapy (group or personal) in your regimen of healing, that would be an important ingredient. MD can really mess with your mental life, so the sooner you can include therapy the better. Stay connected to this excellent community and hang in there!

  • happysue
    happysue Outfielder16

    Posted

    Dear Outfielder16 and anyone else looking for info on meneires.

    I had this about 18 years ago and am now a 60 year old female.

    I would get up in the morning and my head would swoosh so bad I would fall back into bed.  Then I started getting migraines where I could not go to work 3 days a week because it hurt so bad I couldnt get out of bed.  Then after about 5 months of this, I went on a diet that required you give up coffee for a week.  Lo and behold I had no dizziness or headaches after about 3 days. 

    I have been off coffee and have not had an episode of meneires since.  I have occasional headaches (which go away with excedrin) when I would accidentally get caffeine in some food I was not aware of but rarely a migraine! I can eat some chocolate but no coffee or tea (except for herbal caffeine free)

    I believe MD is caused by an allergy to something.  Mine was caffiene.  I suggest you do an elimination diet and  see if you can figutre it out.

    I believe we are what we eat.

     I hope you all get relieved of your health problems and live long happy lives.

    I believe all these long term drugs lead to other health problems and more drugs.

    Sincerely

    Sue

    • wendy93095
      wendy93095 happysue

      Posted

      This is really interesting. I've just been referred to ENT for testing and diagnosis of MD after a couple years of struggling with severe vertigo. I've had to eliminate certain foods to control my rheumatoid arthritis symptoms and had great results, so I guess I'll start working through the caffeine, sodium etc.. and see if it helps with this as well.

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