1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Finally, something relieves symptoms of cochlear hydrops

Discussion in 'Your Living Room' started by Jimbo, Apr 8, 2024.

  1. Jimbo

    Jimbo New Member

    14
    3
    3
    Mar 20, 2022
    After 3 years of the endless head pressure, nausea, "feeling like crap all the time", I have finally found a treatment for the relief of these symptoms of my cochlear hydrops. I tried all the normal remedies that my ENT recommended (low-salt diet, diuretic, betahistine, prednisone, intra-tympanic injections, amitriptyline). I tried JOH's regimen, and anti-virals, but nothing, to my immense frustration after rigorously pursuing each of these possibilities, worked. I resigned myself to a miserable existence for the rest of my life. You all know the feeling.

    About 6 weeks ago I was in my GP's office and he said, "Jim, you have a rough set of symptoms to deal with here, and unfortunately nothing has helped. I strongly suggest that you try an antidepressant. The newest SNRIs can be very effective in alleviating not only anxiety, but also neuropathy. We can start on the lowest dose and monitor it closely."

    I wasn't crazy about trying an antidepressant. I wasn't depressed. I would be fine if I didn't have this god-awful disease that never lets up, reeking havoc on my relationships and social life, as well as my life as a musician. But I said yes, because to be quite honest, I'd try anything at this point.

    On March 1st, I started 20mg of Duloxetine once a day. It wasn't fun. The side effects made me super drowsy yet antsy and seemed to exacerbate all the symptoms I was trying to get rid of. I lost all motivation and basically lived on the couch watching every hockey and basketball tournament on TV (here in Minnesota we have tons during March). To make things even worse it was difficult to sleep. On top of that I started reading all sorts of bad reviews on the internet about Duloxetine (the generic of Cymbalta) that made the drug sound like the ultimate Faustian pact. I soldiered on as my doctor said it may take 4-6 weeks to kick in.

    Then on March 31st, Easter Sunday as it turned out, I woke up to get ready to go to a family gathering. I had been stressed out the day before baking a new recipe, Guinness Chocolate Cake, for 12 people and wasn't sure if I'd made enough. This could be a disaster in so many ways. As I got dressed I noticed something strange. My head. My head felt clear. WTF. I wasn't nauseous. I wasn't feeling shitty. The pressure was gone (well I still felt my right ear had cotton in it from hearing loss, but the awful aural fullness was gone). This was the first time in 3 years that I felt the weight lifted off of my head. I proceeded to have the most wonderful day with my relatives and by the way the cake was delicious.

    It's now 8 days later and I have continued to enjoy the relief from aural fullness and nausea. I do still have tinnitus (but even before this I could ignore it - now it seems even less of an issue). I do feel a bit of lightheadedness, but it isn't bad.

    I wanted to let the forum know about what has worked for me. I know everyone can have different responses to medications and it's a very personal decision about what to do in the search for an answer to this disease. I would never have started taking this medication if I didn't trust my GP. He assured me it was safe and if I had any problems we would work through them together. This Serotonin Norepinephrine Reuptake Inhibitor (duloxetine) succeeded in alleviating my discomfort. I don't know if anyone knows why. I saw my ENT today and told him the good news and he said, "Sometimes a GP has an overall viewpoint that can connect dots that we don't see as specialists. That's fantastic that he tried this treatment."

    I hope my experience continues to be positive and that it will give you a possible treatment for relief.
     
  2. Donamo

    Donamo Active Member

    447
    90
    28
    May 12, 2014
    That's great news Jimbo!! Congrats to you. I'm not sure that I would have stuck with the antidepressant when it made you feel so bad at first. It took a while to kick in.

    I had read somewhere about certain antidepressants help with MD and I even went so far as to get some but I chickened out and never took them.

    So you have almost eliminated your MD symptoms, but what about the effects of the antidepressant, motivation, couch potato, that sort of thing? Are they still around? Are you still "you"?
     
  3. Lilja

    Lilja Member

    93
    16
    8
    Sep 14, 2021
    Very good news, Jimbo. Your personal resurrection with enough of Guinness cake. (Do we get the recipe?)
    That's a very very nice story, happy to read it!

    This kind of medication needs a while for working.
    I had a similar situation with a neurologist, who wanted to prescribe an antidepressant against MD or psychosomatic vertigo. I am not depressive, I suffer from MD. No thanks.
    After a while my very good orthopedic Doc told me about the off label use of Amitriptylin against pain. The feeling was perfect, in the beginning I fell asleep instantly. Taking 37,5 mg before bedtime, starting with 25 mg.
    I could cut down the painkillers remarkably.
    And it is part of my coping journey with MD and pain. The only negative thing is my memory. Amitriptylin has not only an impact on my pain memory, but on my memory in general. But that's ok.
    Wishing you all the best !
    Lilja
     
  4. Jimbo

    Jimbo New Member

    14
    3
    3
    Mar 20, 2022
    Donamo and Lilja, thanks for your comments. I was very leery about taking an antidepressant. I didn't want to end up as a blob in the corner with no emotional involvement, and some people have a terrible time getting off of antidepressants once they've started. Scary stuff. The 4 weeks of waiting for it to get better was a difficult stretch for me and I almost pulled the plug various times. The only thing that kept me going was the will to discover if it would improve, and I didn't want to quit just to start another time. Also I had a follow-up on the calendar with my GP and I figured if it all went South he'd help me. So far, and it's only been 5 weeks, I feel emotionally connected, I'm not having any negative side effects beyond a bit of dry mouth at times, and my head feels clear. Some mornings I'm a bit groggy, but it goes away especially if I get busy. The next month should be instrumental in revealing if this will continue to be beneficial. I will keep you informed.

    I did try Amitriptyline for 4 months and I slept like a baby! My prescription was for just 10mg/day so maybe i never took enough to alleviate the head pressure. It's good to know it works for you Lilja and I may give it another shot in the future at a higher dose if I need an alternative. The Guinness Chocolate Cake recipe comes around every year on St Pat's Day in the NY times. I'd always wanted to try it because everyone raves about it in the comments. It's fantastic and easy to make.
     
  5. Steven Wm.son

    Steven Wm.son New Member

    16
    2
    3
    Feb 23, 2024

    It's wonderful you found something that works for you! My primary care doctor put me in Nortritilyne (Pamelor) at 20 mg at bedtime. It did take several days to make a difference in my spells of vertigo, which were near daily, if brief. It's been about 75 days now, and I had two breakthrough episodes where I couldn't walk, again these were brief. He added 10 mg more so it's 30 at night.

    I do not love the side effects--for me it's mood lowering, and stupid constipation. No change in the tinnitus or bonus pulsatile tinnitus. I see a UCONN (Connecticut University Health Center) in May to see about a different tactic. But for now, the antidepressant seems to be holding off the vertigo. I am very worried about another drop attack while driving, or even a mild one while driving.

    I wish you continued good luck. Do you know if you can try getting off it, or lowering the dose?
     
  6. Donamo

    Donamo Active Member

    447
    90
    28
    May 12, 2014
    Jimbo, just a side note about your dry mouth. I have a friend who takes a certain type of medication that has a dry mouth side effect. After several years of dry mouth, his teeth are just breaking off and he is spending thousands on dental care. It is important to keep adequate saliva in your mouth so please do a little research on that.
     
    • Like Like x 1
    • Agree Agree x 1
  7. Kevinb003

    Kevinb003 Active Member

    207
    67
    28
    May 15, 2014
    Just a clarification for anyone who may research this in the future: Are you sure you don’t mean Endolymphatic Hydrops? Cochlear hydrops tends to involve only issues with the hearing (loss, hyperacusis, etc.), whereas endolymphatic hydrops involves hearing issues as well as the fullness, dizziness and verigo. Splitting hairs here I know, but I’ve had both: endolymphatic on the right and cochlear in the left. And my cochlear hydrops does not involve fullness, dizziness, or vertigo-only hearing issues. I think it’s an important distinction.

    Glad you are seeing improvement! I think a lot of us here are on antidepressants for the simple fact that this chronic illness can be extremely depressing.
     
  8. IvanNew

    IvanNew Active Member

    227
    67
    28
    Jan 18, 2021
    Successful treatment of relapsed Ménière’s disease using selective serotonin reuptake inhibitors: A report of three cases - PMC (nih.gov)

    I shared it a while ago. As a result of that medical publication I asked for antidepressants, I didn't ask for them for Menie because I knew they wouldn't give them to me, I went to the psychiatrist and said I had depression (I really did, but at the time I thought I didn't). My life changed for the better completely since I started taking them, but the first weeks of antidepressant are complicated and not everyone can stand them, they take full effect after a year. I'm still taking it for maintenance, although reduced dose.
     
    • Agree Agree x 1
  9. Donamo

    Donamo Active Member

    447
    90
    28
    May 12, 2014
    Yes, I remember you sharing that link. However, you are still having Meniere's issues aren't you?
     
  10. IvanNew

    IvanNew Active Member

    227
    67
    28
    Jan 18, 2021
    Hello! I have hearing loss and tinnitus, but I have had no other symptoms since July 2021.
     
    • Friendly Friendly x 1
  11. Donamo

    Donamo Active Member

    447
    90
    28
    May 12, 2014
    Oh Wow! That's almost 3 years! I'm surprised you still come here! LOL. Congratulations.
     
    • Like Like x 1
  12. Fireblade

    Fireblade New Member

    8
    0
    1
    Feb 5, 2022
    Hi IvanNew - Good to hear you are doing well. Can you let me know what dose of sertraline you are on and if you take morning or night. Also - any increased sweating with it? thanks
     
  13. IvanNew

    IvanNew Active Member

    227
    67
    28
    Jan 18, 2021
    This website was the first place I found hope and people who could understand what I was suffering. So I try to read the website often, so I don't forget I have it in favorites on both my mobile and my computer. Also, this is where I can find out if new medical advances like the SPI-1500 appear. :)
     

Share This Page