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I can't take it

Discussion in 'Your Living Room' started by Megan Henry, Jan 31, 2020.

  1. Megan Henry

    Megan Henry Member

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    Does anyone else go through these periods where you absolutely cannot take this anymore. When you're working your butt off to get better and you only seem to get worse. This constant disequilibrium is hell. It's hard to stay positive sometimes. What do you do to cope because I just don't know where to turn at this point and every medication they give me makes it hard to breathe. What the hell! I feel hopeless.
     
    • Agree Agree x 1
  2. Fatboy

    Fatboy New Member

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    I know how you are feeling. It is terrible what we have to live with. All I can tell you is to really appreciate the times when you aren't feeling lousy. Do things that you like and make you smile.
     
  3. Gardengal

    Gardengal Member

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    Yes, I get that way. Then those times pass. I literally have to tell myself to wait it out, try to focus on something good, and know that most of these ppl on this board, one way or another, have found some relief. Keep trying. Don’t give up. It’s out there.
     
    • Optimistic Optimistic x 1
  4. Onedayatatime

    Onedayatatime Active Member

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    I cry. When I'm in the pit, I'm alone. So why not. Get it out and get on with it.
     
  5. California Sun

    California Sun Active Member

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    We have all been there. When I am having a bad time of it, I try to convince myself that things will get better, and so far they have, though sometimes it's taken a long time. And it is very difficult to stay positive. Coming here and sharing my feelings is helpful to me, because even though sharing my feelings doesn't change anything, it does make me feel better to know that others understand and have been there.
     
  6. Bulldogs

    Bulldogs Well-Known Member

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    Laby time!!!!

    Kill the beast once and for all and take back your life.

    the laby will give you a normal life.

    god Bless
    BD
     
    • Agree Agree x 4
  7. Kevinb003

    Kevinb003 Active Member

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    You are stronger than you realize. Lesser people would’ve given up long ago. You are somebody’s inspiration and you still have so much more to give. Hang in and know that you are not alone—we’ve all been there.
     
    • Like Like x 1
    • Optimistic Optimistic x 1
  8. redwing1951

    redwing1951 Well-Known Member

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    Have you talked to your OTO about the possibility of a laby? When all else fails and you are ready to throw in the towel it is the way to go. It will give you your life back just as BD said and many of us have experienced.
     
    • Agree Agree x 1
  9. Rebecca

    Rebecca Member

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    Megan, it seem unfathomable that with health science as advanced as it is, there are thousands of people with this disease suffering through day to day. Sometimes, hour by hour. We are all trying desperately to find ways to not allow this beast to win. My way is my Faith. Even as strong as my Faith in God is, I have lots of times when I feel like giving up and giving in. Then, someone will say something, or I'll see something beautiful, or one of my grandkids will tell me they love me, or someone will need my help with something & I help them, or I'll find myself chuckling or even laughing out loud at a meme on FB, or I will see someone who is suffering far more than I am.... SOMETHING Happens.... Then I stop and say, "Thank you God!" "You knew exactly what I needed to hear, see, or do!" "Please keep reminding me, because I can't do this without you!" That's how I get through. I pray you will find strength in your way. I've had this for over 20 years. The first few years were horrible. Then things got a little better, for several years. Things were bearable. This past year has been horrible again. I am going to UC Davis for more testing in a month and to discuss options. Laby will be one thing I discuss. Take care, and keep fighting the fight.
     
    • Like Like x 3
    • Optimistic Optimistic x 2
  10. Rebecca

    Rebecca Member

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    Bulldog and Redwing, may I please ask you about your Labys? As I said to Megan, above, I have had MM for over 20 years. After a couple really horrible years things got bearable for several years. This past year has been horrible again. Although no lengthy full out vertigo, the symptoms have changed to almost constant fullness, head pressure, disequilibrium, tinnitus now in both ears, lots of headaches, and brain fog. My ENT sent me to a Neorotologist at UC Davis Medical Center. I'm now scheduled in a month for more hearing test, a CT Scan, and VNG Testing. A week later I will see the doctor to go over the tests. What questions do you recommend I be asking? What prompted you to consider your Laby? Do you have strong hearing in the other ear to help with balance? Did your surgery remove the cochlea, or did you maintain that for a cochlear implant later? What was your recovery period and what should a person expect? Thank you for your input!!
     
  11. redwing1951

    redwing1951 Well-Known Member

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    Rebecca feel confident that your ENT referred you to a neuro-otologist. That is heading you in the right direction.

    I chose to have a laby after a gentamicin shot failed and I was experiencing drop attacks along with all the other ugly symptoms you refer to. I was so done with feeling less than a human being. I too have faith in our Lord Jesus and believe He directed me to my OTO.

    I had zero hearing in my MM ear so having a laby was an easy decision for me. Do you have any useful hearing in your MM ear? My OTO did leave the cochlear and he assured me that I would never have to live a life of silence as I am a candidate for a cochlear implant. My recuperation period was less than a month. I was very active before the laby and was advised to walk as much as possible in order to train my brain to single sided balance. You might invest in walking sticks to assist you.

    My life after laby is as normal as most people my age. I ride my bike, walk, hike and swim. I have some issues not knowing where sounds come from but my husband is great about helping me with that. I don't like noisy places and avoid them. I still have mild tinnitus but it does not keep me awake at night or keep me from doing anything I want to do.

    I have had 2 scares when my good ear acted up. Once due to water in my ear that blocked my hearing. That was scary! No hearing at all. It was resolved with a decongestant. And again when I had a head cold.

    Last year I visited my OTO and we discussed a cochlear implant. He said the technology today is so advanced since my laby 7 years ago. Again he said I am a candidate if my good ear decides to go south. I have no worries about having no hearing. If indeed I find my good ear starts with MM symptoms I would have no issue having another laby. Truly a laby gives you your life back.

    I wish you the best at your OTO appointment and please let me know how it goes for you.
     
  12. Rebecca

    Rebecca Member

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    Redwing, thank you very much for getting right back to me. I appreciate your input. No, I do not have any useful hearing in my MM, (R), ear. Haven't for several years. I do experience misophonia, (sound sensitivity), in that ear that seems to be getting worse and worse. My family has a history of bad hearing. My mother and brother have used hearing aids for several years. I wear a hearing aid in my left ear. Otherwise I would not be able to hear much of anything. I, too, believe God is leading me to seeing this new doctor. I was considering not even going after my ENT referral, because I felt it was a waste of time and money. That this disease is what it is, the medical field doesn't know as much as they should, and if there truly was a way to help MM sufferers more would be helped. There were a few things that happened and a few comments from my kids that made me think twice, and realize God just might be leading me. So, I'm going through with it. This conversation with you is a God send, as well. My initial visit brought info to light that I want to share with others on this site. I was going to wait until I received more info, but will mention it now, then follow up later. The first doc I saw at UC Davis Medical Center told me in the last few years they have found something within the inner ear structure that is sometimes mimicking MM. The the inner ear balance and hearing mechanisms are encased in bone. They have seen the bone at the top degrade and thin out, or even open up. This allows pressure on the balance mechanism. They have a surgery they can do to strengthen that bone to take the pressure away. This, is all in lay person terms, and the best I can describe this at this time. I am scheduled for a CT scan to rule this out as any reason why my symptoms have gotten worse. What's good about this, is confirmation the medical community is, in fact, doing some research for MM. Another thing I want to share with you... My older brother was diagnosed with MM about a year ago. He has been dealing with hearing loss for several years, like I said above, and has worn hearing aids most his adult life. The MM, of course, is not helping that ear. His ENT in the Sacramento area referred him to someone who is doing many Cochlear Implants. Within weeks he had an implant. It takes quite a while for the implant to start being useful for understanding words. The first month was not having the implant connected and allowing healing. Then, several levels of sound increases and schooling tools on the computer and with his wife, so that the brain will start actually understanding that what he is hearing is actually words. They've been on another cruise, so I haven't spoken with him for a couple weeks. But, before they left he told me things were progressing nicely, and he actually can hear words. It takes a while. It's amazing to think our brains are what allow us to hear speech, not just noise. The first week or so after the implant surgery, he experienced increased tinnitus. Then it got better. I think he still has tinnitus, but not as loud. Don't know if the implant has any bearing, but, when I spoke to him last he told me he hasn't experienced vertigo for a few months. Could be just the disease's cycle....??? Cochlear Implants are another avenue for improving our lives. Not everyone is a candidate. But, for those that are, with patience, they won't feel as alone. Thank you, again, for your response!
     
  13. California Sun

    California Sun Active Member

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    I think about that all the time. So many strides have been made in treating many diseases and conditions, but hardly anything in regards to Meniere's. Not much is different now in terms of treatment than when I was diagnosed in the earlier 1970s. No one dies from Meniere's, it isn't communicable to other people, and it isn't all that common, so I guess they think it isn't worth researching or finding a cure, or at least a treatment that actually works.
     
    • Like Like x 2
  14. Megan Henry

    Megan Henry Member

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    Hmm. Don't know if I'm ready to go deaf. I have it in both ears, don't get the rotational vertigo yet, just dizzy/off balance every damn day. Fuck this shit.
     
    • Agree Agree x 3
  15. redwing1951

    redwing1951 Well-Known Member

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    If you don't know if you are ready than you aren't. Believe me you will know when you are ready!
     
    • Agree Agree x 2
  16. Onedayatatime

    Onedayatatime Active Member

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    Well said!
     
    • Agree Agree x 2
  17. Philippa

    Philippa New Member

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    Hi Megan
    I have gone deaf in one of my ears and will be getting a hearing aid. I am really nervous about it as the ENT said that because of severity of my hearing loss there is a possibility that the hearing aid is going to vibrate across my forehead. But I will try anything at this stage.
     
  18. Megan Henry

    Megan Henry Member

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    Phillipa,
    What are your symptoms? Do you have the full blown rotational vertigo? I have constant disequillibrium/dizziness, tinnitus in both ears and fullness in both ears. Weather is my biggest trigger. I have brief moments where my hearing will cut out, but only for seconds.
     
  19. DianeD

    DianeD Member

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    Megan, what drugs have you been on that make it "hard to breathe"? Have you tried chiropractic care?
     
  20. Megan Henry

    Megan Henry Member

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    Betahistine was the top offender. Then I tried Spironolactone which didn't make it as hard to breathe, but I did feel like someone was grabbing the left side of my throat and choking me. I felt like someone had gone in and was squeezing my heart. I tried an upper cervical chiropractor and looking back think that may have helped. Might look into that again. Just took my first dose of 12.5 mg of HCTZ today. So far no breathing problems just racing heart and headache. Hopefully I'll acclimate.
     

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