I don't have much to report from the Meniere's front. That is good news. Early last evening I had the closest thing to vertigo I've experienced in six weeks or more. My ear suddenly started ringing very loudly, then I started to feel the creepy, wobbly, spinny sensation deep in head that usually precedes a full-blown vertigo attack. But after an hour or so, it eased and by bedtime I was feeling back to my baseline.
My baseline these days is an occasional mini-spin, now down to only a couple of times a day. My balance is much better and the tinnitus, for the most part, is just a constant, low hum. I feel very little pressure in my ear now, too. In fact, we just had a rainstorm roll through yesterday which, in the past, would have made my ear feel like it was going to explode with painless pressure. But now, little to nothing.
So I am still grateful for gentamicin. Just the other day I read a post on a Meniere's forum I follow from a guy who suffered for something like eight years with debiliating, weekly vertigo before trying, and getting relief from, gent. That could have been me. He was afraid to do anything "permanent" or risk hearing loss (a small risk with the low-dose method) as so many people have been warned not to do anything destructive. Instead he suffered, in my opinion, needlessly. But now he is preaching the wonders of this treatment, having his life back and perhaps wondering why he waited so long. Yes, no destructive treatment should be gone into lightly. You need to be sure you know what you are dealing with as Meniere's can be, and often is, misdiagnosed. But with the right tests and doctors, there is hope and the potential to control the worst of the symptoms.
I still promise to post more about different treatments I have tried and read about. But as this disease has taken so much of my life already, I hate to give it too much more time now that I can function again. I do know that someone else might benefit from my experience, so I will try to get back here soon and write more.
I'm so happy to hear when people get relief from Meniere's in any way!!
ReplyDeleteI'm bilateral, so they wouldn't do anything too destructive because I didn't have the other ear to fall back on. Actually, I had a very bad doctor for 7 years, then when he finally admitted he didn't know much about Menier's I found a specialist. Since then, I've had a couple of procedures. The last one, finding out I had low Cerebral Spinal Fluid, and having my leaks patched, has done wonders! So far...hopefully, it will be long term!
I hope you continue to have good results from the gent!
I saw you commenting on a couple of blogs I follow and found you, always happy to find another Meniere's blogger!
wendy
Hi Wendy,
ReplyDeleteThanks so much commenting on my blog! I have actually visited yours a few times, too, just didn't get around to commenting. I would love to link your blog to mine - is that ok?
I have read about CSF leaks. Wow! I am so sorry you had to suffer as long as you did before finding out this was you problem. I know how wonderful it feels to feel good again, or at least mostly so.
I wish I had more time to blog, but when I am well, my life just gets crazy busy. I am not complaining, just wish I had a little more time to write.
Take care and keep in touch,
Angelea
Angelea, I just got "officially" diagnosed with MM today. I am a 56 year old woman who has had 8 major vertigo episodes where I thought I would die in the last 18 months, but MANY slight episodes mixed in there, and a daily dizzy spell or two (lasting one to two hours) for the past couple of months. I am so glad to have found your blog. It's different from reading the ususal internet medical sites about this disease. Right now I am in shock that this is what I have, that I may lose some hearing (already have, in only one ear though, thank GOD), and in shock that sodium may contribute to this!! I want to deeply thank you for sharing and the sense of hope that it can get better you convey.
ReplyDeleteDebb
Hi Debb,
ReplyDeleteUgh, I remember the beginning for me, too. This is not fun, but I am glad you found some support already. The good news is I have come a long way, both physically and in accepting this disease. Be kind and patient with yourself as you navigate through this. When I clicked on your picture, I noticed your interests in yoga, etc. I am a huge fan of meditation and living in the moment. I suspect you already have a lot of skills that will carry you through the bad days. I have taught myself to practice gratitude and being in the moment when I am having (had) vertigo attacks.
That being said, everything from here on out will be trial and error. Read, read, read. If there is one thing that seems to be true about this disease it's that everyone is slightly different. There will likely be lots of ups and downs, but during the downs you have to remember that the ups will come back, too. When you are feeling well, take advantage of and appreciate every good moment!
Btw, my dad is from MN - Thief River Falls. I haven't been back since I was a kid, but I still remember what a beautiful place it is.
Keep in touch,
Angelea
Debb,
ReplyDeleteOne more thing. I wish I had this resource from day one: Medifocus on Meniere's. It is available on Amazon. I downloaded the computer version of Kindle (I have a Kindle, too) and read it on my computer. It has several links within the text which is why I like to read it on my computer. It provides an excellent description of what MM is thought to be and all the mainstream medical treatments that are available. It also lists centers where MM is treated and how to find a good doctor, etc.
Remember that 80% of people respond to conservative medical treatment, so there is lots of hope.
Angelea