Posted , 7 users are following.
So I decided to get some vitamin D today with my granddaughter. I walked into Lake Michigan and the sand was rippled and the waves were coming in . I had to get out because it made me so disoriented. Funny how things I used to enjoy can make me sick now.
0 likes, 16 replies
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mary16977 Willow4
Posted
Do what you can. Enjoy all you can. Persevere. You can do this.
~Mary
Bluesmann Willow4
Posted
mary16977 Bluesmann
Posted
She can't lay down on a raft with her eyes closed...she'll drift out to sea and then we'll have to send out a search party to find her. Lol And since we're all dizzy and prone to vertigo I'm afraid we'd all get lost and nauseous and never find her
pick the kayak option Willow 
Willow4 mary16977
Posted
Lol 😂
dbmarie3 Willow4
Posted
judy2018 Willow4
Posted
Just watching TV or reading causes my dizziness, I hate this disease with a passion, the only good thing is I'm starting to lose weight because Im trying to really watch my salt intake. Even that is so hard because I love to go out to eat. Does anyone know if you really improve with the less salt intake regiment, if you can keep this at bay, I feel like I will always have to stay on my meds for the dizziness or floating away feeling, but not to have a full blown vertigo attack or more damage to my hearing.
mary16977 judy2018
Posted
For me, if I keep my sodium at 1000 mgs or less it takes my tinnitus down from a giant roar to slightly less than a giant roar. lol I don't think it helps ease my feeling of being slightly dizzy 24/7. But I'll take any improvement no matter how small.
Hang in there!
Willow4 judy2018
Posted
Bluesmann Willow4
Posted
so hard to tell for me as MD fluctuates and so many things can affect it....barometric pressure, salt, caffeine, etc...etc.... I do know that one time after eating sushi I felt horrible.......I think I figured out it wasn't the sushi it was the sodium in the sauce...so now if I eat it I don't put that sauce on it that used to make it taste so good....I find though thats once the taste buds adjust its all good......I was never one to salt my food anyway though...
tvbonnie Willow4
Posted
I had my 8th attack yesterday. Twice at my office. I am giving up on ENT's and am stepping out to different doctors. ENT's have offered no relief at all.
Trying an immunologist with auto immune issues speciality. They have to offer more than drugs and hearing tests over and over. I need the attacks to stop. Forget the hearing for now, the attacks are what is CAUSING the hearing loss! Step it up, ENT's! We are losing our faith in your efforts! Steroids are not WORKING FOR ME!
Keep faith people! Some smart scientist will think outside the ear and give us hope!
judy2018 tvbonnie
Posted
Please keep us posted if going to a different doctor helps. I read that most of it is probably caused by a bad immune . It is hard to believe that they can’t find a cure or operation that could drain the fluid. I have a blood disorder so mine is probably the immune issue so I worry about it going to my other ear😢. Hope you find relief , this disease stinks and I just want it to go away
dbmarie3 tvbonnie
Posted
Hi Bonnie,
Have you tried Betahistine and steroid injections in the ear? I've had this since Jan. The meds seem to be giving me a little relief and the injection put me in remission. Haven't had an attack for 15 days I was having at least 1 a day. I was seeing an ENT but she referred me to a Otolaryngologist who specialises in the ear.
Hope you feel better soon
mary16977 tvbonnie
Posted
My audiologist referred me to a neuorotologist. I haven't seen him yet but supposedly they are good with MD
~Mary
Willow4 tvbonnie
Posted
I was diagnosed in 2009 and I still have good hearing- about 30-40% loss in my right ear. I see a ENT, Immunologist and a Neurotologist. I dealt with 4 years of attacks and seen the Neurotologist and decided on the Sac Decompression. I’m so glad I did. It gave me pretty much symptom free for 4 years and no additional hearing loss. I take Dyazide daily Valium as needed, Promethazine as needed. I am also on a regimen for allergies which plays a roll in my symptoms. I am allergic to everything. I went through a very stressful period and had a severe attack in 1 months time I lost about another 10%. We tried the dexamethasone injections that helped a little bit but not enough so I had a revised Sac Decompression. I have had some complications which is part of the risk of this surgery. I have had some small episodes and 2 big episodes. My Neurotologist told me the next step would be gentamicin injections. I am starting vestibular therapy to help with safety due to falls. My advice to you is to find a Neurotologist they are the best to deal with MD.
Hope this helps
Willow4 mary16977
Posted
tvbonnie dbmarie3
Posted
Dbmarie,
What a delightuful post by you, so great to hear GOOD news for a change! the shot in the ear lasted 2 days, then a powerful attack that was hard to recover from. I now have a nutritionist and am going to try a neurologist. No idea if it makes a difference, but it's better than doing ENT's that are not helping even slightly! Cheers to your continued good health!