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M.D for 20 years, Drop attack’s last two years

Posted , 9 users are following.

la67156
la67156

Hello all- I have had MD for 20 years and what started out as extremely dizzy moments where I could feel the attack coming, two to three times a  year, and be able to plan and Medicate to sleep it off, has now moved on to severe drop attacks, where I suddenly drop tot he ground, vomit, and can’t get back up for hours at a time, until the meds kick in.

I live in NYC, and I really can’t find a doctor who is aware of MD or drop attacks who can help me.

 I thought this was only during the summer when allergies were out there, but this year I have had two attacks in the middle of winter. 

If anyone can help me with a reference to a doctor in the US, NYC , tri state that would be much appreciated.

Further any advice on what to do as next steps- I’ve tried all the meds, diet, diuretics, shakes, etc. wondering what people in my situation have done and what we’re the results. 

Thanks 

0 likes, 24 replies

24 Replies

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  • tanney
    tanney la67156

    Posted

    You have had MD for 20 years, live in NYC and have not found an ENT to treat it??  Wow! That's hard to imagine.  I'm in Pittsburgh and there are at least 4 ENT here that specialize in inner ear diseases.  There has to be at least one in NYC.  Have you been seen by any ENT doctors?  If so, they most likely know of inner ear specialists in the City.  Another idea is to call the University hospitals to ask for their advice?  I know there is an ENT specializing in inner ear diseases/Meniere's Disease that is affiliated with University of Pennsylvania in Philly.  I do not recall his name but he has reputation of being one of the best in the world.  I'm sure someone in the ENT department of Penn could help you find this doctor. 

    There are several ways to treat MD vertigo attacks.  Two of the most common treatments are Betahistine taken orally and Intratympanic steroid injections.  Have you tried either? 

    • la67156
      la67156 tanney

      Posted

      Betahistine I’ve taken before usually when I feel it coming, I’ve never taken it continuously.

      I have also taken oral steroids which clear it up but also keep me awake and can only be used for a week at a time.

      I haven’t done injections, I am very nervous of anything surgically done or injections, I don’t want to lose my hearing, and I am dizzy all the time and don’t know if o could take aftermath of those which I read are dizzy.

      Have you or anyone done the injections? Or surgery? 

      Was up all night and had another attack at 4am this is getting worse- any advice is helpful

    • tanney
      tanney la67156

      Posted

      Betahistine has to be taken EVERY day to be effective and usually takes a month to "kick in".  Oral steroids are often not effective unless given in higher dose for longer time....and have side effects that can be quite bothering....as you discovered.  Intratympanic steroid injection into the middle/inner ear is much more effective with almost no side effects. It is aimed directly at the problem and does not circulate through your blood system like oral steroids do....and the injection is almost a pain free procedure done in ENT office.  Just be certain the ENT has experience doing this procedure.  The steroid injection removes the inflammation/fluid that causes vertigo and ear fullness.  Most patients require multiple injection and find significant improvement.

      If Betahistine regimen + steroid injections still do not eliminate the severe vertigo I highly recommend you consider Gentamicin injections which will deaden the balance nerve in the affected ear.  Once deadened the dysfunctional balance nerve will no longer cause vertigo.  This procedure is effective in a great majority of severe MD patients.  The procedure is done almost identically to the steroid injection and is an out patient procedure and practically painless.

      For your information, I had the gentamicin injection 40 years ago when it was a relatively new procedure.  It completely eliminated the vertigo in my left ear.  It did NOT negatively affect my hearing at all...and in fact my hearing has improved over the years following this procedure. And, the loss of the dysfunctional balance nerve is compensated by the healthy balance nerve in your good ear.   I am currently taking Betahistine and I recently had the steroid injections in my right ear because last August I developed MD in that ear....I now have bilateral MD.  The combination of steroid injections + Betahistine has (so far) eliminated vertigo, ear fullness and most of the tinnitus from right ear.  It's too bad that Betahistine and steroid injections were not available/protocol 40 years ago when I had gentamicin injection in left ear or I obviously would have chosen them before the gentamicin.

      Good luck with your doctor's appointment.  I'm glad you found someone in NYC.  Let us know what doctor says and the course of action you decide.

    • Bluesmann
      Bluesmann la67156

      Posted

      I'm on betahistine 16mg 2x per day....it def helps you need to be on it continuous for it even to work..it takes around 2 months for it to get into ur systemm.....its not a quick fix drug......ive also had injections...the ones (steroids) that don't effect your hearing....they helped for about three months.....I had 3 injections 1 per week for three weeks.....

      interested in Tanny which doc do you see in Pittsburgh...I live close to Pittsburgh and would love to see one just to compare.....Good luck all

  • Willow4
    Willow4 la67156

    Posted

    I’m in the US also.  Cold, blustery MICHIGAN.  I was very lucky to be referred first to a great ENT, then to an Otolaryngologist.  I have a dr at the Michigan Ear Institute.  Look for an Otolaryngologist.  I was diagnosed in 2009.  Luckily I have not had the drop attacks, but balance is awful.  I was told stress and allergies can bring attacks on.    And I truly believe that.  Have you had any surgeries?  I had 2 Endo Sac Decompression.  I also have positional vertigo.  I research and everyone is different.   I pray you find the right doctor.   Please be careful.  Drop attacks have to be scary, and you don’t want to be hurt.  Good luck to you. 

    Willow

    • la67156
      la67156 Willow4

      Posted

      Thanks willow,

      Problem it seems is the surgeries I hear don’t fix it - and the ENTs I have gone to have really only said to go to surgery and lose hearing- which I do not want.

      I go to a homeopathic doctor now who massages my head and also provides a concoction or shakes, pillls etc, which helps but really just delays the inevitable drop attacks.

    • Willow4
      Willow4 la67156

      Posted

      Hi 

      Menieres if goes untreated will harm your healing.  That is why I opted for the Sac Decompression.  The 1st Sac Decompression I had on 9-13-13.  I had a hearing test July this year and I only lost 3% of high pitched hearing.   So since 2009 I have only lost 37% and I believe I lost most of it when they were trying to figure out what was going on with me.   Not all treatments cause hearing loss.  The diet, low salt, low stress, meditate, yoga.  You’ll find what is right for you.  I pray you have no more drop attacks and you find the right Doctor who will treat the way you should be treated. 

    • Bluesmann
      Bluesmann Willow4

      Posted

      what does sac decompression do?...ive not had that
    • Willow4
      Willow4 Bluesmann

      Posted

      They remove part of the mastoid bone to make more room for the fluid to flow.  It’s the increase of fluid that makes you have the vertigo.  It lessens vertigo attacks.  
  • Bertman
    Bertman la67156

    Posted

    Paul E. Hammerschlag, MD, FACS

    863 Park Avenue Suite 1E  ∼  New York, NY 10075

    OFFERING A COMPREHENSIVE APPROACH TO ADULT AND PEDIATRIC EAR DISEASE

    • la67156
      la67156 Bertman

      Posted

      Bertman- thanks,

      I read in the forums and see that you may have lost complete hearing. This I am very scared of and this reason I have not done surgeries the ENTs I have seen have recommended.

      Any chance you can let me know how yours went and if the symptoms have all gone? And of hearing is restored?

    • Bluesmann
      Bluesmann la67156

      Posted

      There are surgeries that do not mess with your hearing even the drastic balance nerve being cut on  one side....that would be a last resort IMO
  • gerard90471
    gerard90471 la67156

    Posted

    For doctors in New York City, you might try:

    Otology Program

    New York Head and Neck Institute

    Lenox Hill Hospital

    or

    Department of Otolaryngology

    NYU Langone Medical Center

    I have used both and they have doctors with extensive MD experience.  

    • la67156
      la67156 gerard90471

      Posted

      I think i am going to go to NYU Langone Otology - Daniel Jethanamest. Anyone know anything about him? 
  • stephen61100
    stephen61100 la67156

    Posted

    High there,

    It sounds to me that you are extremely anxious also very stressed out 

    and rightly so..Im not in the states but i suffer the same symptoms as

    you and can..i have M.D. in my left ear and the symptoms are showing

    up in the right ear which i have tell you i was told by the E.N.T. is about 50/50

    to happen ..ive sufferd 17yrs..It sounds as though the sugery your talking

    about is a last resort and any E.N.T. surgeon will exaust all the other options

    first im thinking after 20 yrs you must have some hearing lose and also no

    if its in the left or right or both ears..for me stress and anxiety are a catalist

    and common symptoms of M.D. ..if your not already recieving help with these

    issues i should talk to your doctor about meds and coping methods..

    Drop attacks are the worst symptoms and are unpredictable as you said..

    going out is very stressful for me its like information overload..like a sauce pan

    of toxic liquid in my inner ear that spills over when i walk making me unbalanced

    ..to much information in my eyes does the same thing i.e busy paterns.. roundabouts

    ..tv that pans around or goes up and down also seround sound from tv ..and the list goes on..

    so your ears and eyes work together and to M.D. sufferers it gets all to much..

    i asked my E.N.T. when i first see him if it was due to my playing electric guitar

    ..he told me that would be classed as industrall hearing loss and would effect both ears

    and menieres in most cases only effect one...

    You have to except  with menieres theres no cure only periods of remission ..

    me myself have only ever be clear of attacks for a month or less but some people

    can have years and not have attacks then they come back..the best you can wish

    for is that it only effects the one ear and it can be controlled by meds..this is a list i think 

    in the u.k. a typical and are what i take..

    Betahistine 16 mg + times 3 a day..

    Bendroflumethiazide 2.5 mg +1 in the morning..

    Cetrizine 10mg + 10mg + 1 in the morning..

    i also take Propranolol for Anxiety 3+ a day

    and duloxatine for deppression 1 + nightime..

    Learning to breath properly was the best

    thing i learnt also light medication and relaxtion

    methods that involve light exercises in bed i.e.

    lifting a leg just to the point of taking the stain

    then letting go and remebering the relaxed feeling

    then work the other limes the point is we can forget

    how to relax from adrenaline in the body that build from

    anxiety....i hope some of this helps you..but you must

    seek out an ENT specialist in M.D...best wishes..

     

    • la67156
      la67156 stephen61100

      Posted

      This is great advice. Does yoga really work? and i have xanex, but i am nervous to take it every day, i drive and have an office job, and not sure if I can take that with my other drugs. 

      Also i take advil cold and sinus every day to manage the sinus pressure - but perhaps this isnt helping much.

      Thanks

    • stephen61100
      stephen61100 la67156

      Posted

      High Again,

      I dont no much about yoga ..

      from what i can make out yoga is a body

      and mind thing and involves a lot practice

      and some incredible positioning of the body..

      what your trying to do is literaly relearning how

      to relax again ..when you suffer from anxiety for long

      periods and even panic at times without you nowing it

      your panting for breath and your breathing as changed

      i.e. your breathing up into the chest this brings on some nasty

      symptoms of anxiety and you are literaly overdosing on c.o.2

      ..look up on youtube the right way to breath..as for excercise..

      excercise is the wrong word as your trying to remember what relaxing 

      feels like..so i go to bed and make sure im breathing correctly I.E

      filling the lungs from the bottom the stomach move up to the cieling

      and straight back down like a baby does it take practice and you

      trying to keep it steady both ways..again it take practice  ..dont beat yourself up

      if it feels uncomftable the first time ..then with my eyes closed i work round each

      limb gently lifting my leg remember your learning what the relaxed sensation feels like

      and not the straining muscle tension..so im hardly lifting it from the bed then letting

      the muscle tension go and remembering the relaxed sensation then i work round doing the same

      thing with head and neck arms and legs and also i might do some stretches i.e. pushing my toes out

      to the opposite wall again letting go..im my mind im tying to burn off access adrenaline and tension

      simply to turn off at night and find if my bodys relaxed it helps my mind to steady..remember anxiety

      and tension all spell fear which is our basic instincts as animals..it called flight or fight mexanisme..

      I forgot to tell you i take Buccal tablets really help me with the sickness and other symtoms of M.D..

      I now it would probably mean you would have to give your job ..but is it really wise to drive..

        

       

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