Whatever you decide to do I wish you the best. I do believe if you go forward with the laby you will have an easier recovery due to the gent. I understand your anxiety. After I had gent I was vertigo free for 8 months. Once they kicked back in I had the laby. I am convinced my recovery was relatively quick due to 12 years of MM and the gent. The monkey was finally off my back. If your hearing is gone and you still feel light headed and off balance and full of anxiety than the laby is the way out. Not for everyone but definitely a way out.
My hearing isn’t good word recognition goes between 40-60%. 60 on a very good day with no symptoms which changes the next day so.... pretty much shot I think. I do get off balance still. Probably from gentamicin more than menieres. But the anxiety? That’s a killer. The fiancé and I got into it a little tonight. I was weighing options and he is only concerned about me being out of work much longer. I cried so hard. I don’t think anyone other than people who live this actually get the anxiety and fear that comes with Ménières. I am afraid I’ll not get the laby and then in a few months be right back where I’m at now and have to go through this all over again with time off work and that stress of lower income for a period of time. I wish he’d just say “it will be okay and I support you and money will be tight but together we will get through it for another six weeks and then get back to our normal life. We will make it” Instead he’s worried about my only making half my income for another six weeks and how much of the surgery wouldn’t be covered by insurance. Not my constant fear or inability to even be on the computer for more than one hour before I feel like vertigo is coming and super nauseated. How can I work like that? My job is full time on the computer! Or how about not being able to drive far for fear I’ll have another drop attack and kill some innocent family? Or not being able to grocery shop because the lights make me sick and then I have panic attacks because I think vertigo must be coming because of how I’m feeling? Nope. Money. Money. Money. Sorry to rant but ugh I just feel so disappointed and alone right now.
Mind Over Meneires has a video titled "What it is really like to live with Meneires Disease". He made the video partially to explain to our loved ones what we experience. ❤️
I am so sorry that you are dealing with all the ugliness of MM and on top of it having an unpleasant conversation with your fiance. You will be seeing your doc soon and see what she offers in terms of waiting out the affects of the gent vs the laby. Do you think your fiance would be interested in reading some of the threads on this site so he might better understand what living with MM is? Anxiety is the worse (other than sitting on the bathroom floor holding onto the toilet while one pukes)....I hope the two of you can have a better conversation today. Will he go to your doctor's appointment with you? It might help. I am praying for you to have a better day. Peace.
Yes he will go with me. He apologized. And feels bad. I know money matters and I understand his worries. But I am doing the VERY best I can right now to play the role of provider and sick person at the same time. I would much rather be healthy and working and loving life like I was during my remission or whatever it was. That is so much easier and stress free than what I’m loving now. We see the doctor tomorrow and I will be very frank with her about everything and see what her experience and recommendation tell me. Thank you for letting me vent and get it out there. I was very unnerved by his comments and sometimes he just doesn’t think and is insensitive to my feelings. He’s a human and screwed up. I forgive but I won’t forget for awhile I’m sure. This has been a hard 5 weeks so far and my memory is long. Hugs and thanks again for the support.
Oh Saera your post made me cry. I am so sorry and have such empathy for your situation. The unknowns of this disorder we have makes it so evil ..especially when we have to worry about jobs and money. It is so much to deal with, for both the person with the affliction and a loved one who has to watch. The only thing I can offer is to pray your fiance will come to a peace and understanding of the situation and have more empathy. Stay connected!...even though I know it may be difficult....but in between the dizzy spells. Blessings to you. Bonnie
I have not seen the video but wondering how a video could possibly convey what it's like to live with this nasty condition.
I felt so much anger towards the man when I read the post, and also so thankful that my husband isn't like that. I became bilateral just a couple of months after I married my current husband. I told him that he didn't sign up for this, and if he wanted to end the marriage being that he didn't have all that much time invested in me, I was OK with that. He said that he understood that none of it was my fault, that he married me for better or worse, sickness or health, and that right now it was "worse" and "sickness" and that we would manage. And we have. I've been dealing with this monster a lot in the last several years, and as tired of it as he gets, he doesn't complain. He's retired so that makes things a little easier now.
There is a new website where a woman who has Menieres is trying to create a documentary about what it’s REALLY like. They even have a video simulation of our tinnitus. It’s pretty cool. I hope she can get the funding to make the film a reality. The Ears of Meniere's | New York, NY
This post warmed my heart. I don’t think my fiancé means to be like this. But he’s just worried about money. And I get it. But I’m also worried about all the things I feel and experience right now too. No surgery would probably equal more lost wages and more medical bill than the surgery at this point.
I sure hope this documentary gets made. A big part of the problem is the lack of awareness and understanding, and the ignorance surrounding this vile disease.
This would be amazing. I was looking for a Virtual Reality depiction of what Meneire's sufferers experience. This sounds as close as it gets. It would also be good for health care providers to truly understand their patients.
The A/C simulation in the above linked video does not really simulate what I hear 24/7. Plus, my noise pulsates.
Also, I still carry Diamox with me, and take it when I eat restaurant food. And I’ll probably always carry it, Ativan and gravol or meclizine... everywhere I go, for the rest of my life! I still have low computer and fluorescent light tolerance. I wear TheraSpecs glasses for that, and they seem to help.
I am hoping that I can get back to working almost right after surgery. I think I’m going to just do it. And get on with it!
Fiancé is driving me there as I type this! Hearing test first then meeting the doc. I’ll update right after!