Happy Holiday Weekend, everyone, Does anyone else feel disequilibrium or "spaced out" all the time with Meniere's or Cochlear Hydrops? I have permanent low frequency hearing loss, aural fullness, tinnitus and sound distortion 24/7. I have not had vertigo yet. But, I always feel out of sync with events around me. This started about six months before being diagnosed with CH a year ago and has been constant for about 14 months with increasing intensity. I am still trying the JOH regimen, anti-viral, diuretic, Serc and sodium restriction as well as plenty of water. Nothing I do seems to shake this or even help a bit. I am hesitant to stop any of the supplements for fear of making things worse. I realize this may be "brain fog" but it seems more than that as I feel "spaced out" all of the time. Maybe it is the hearing loss that feels/sounds like a hole in my hearing. Any advice would be greatly appreciated! Sailing Guy
For me, I believe my hearing loss and sound distortion/sensitivity create this feeling of head pressure and "out of it" sensations. Disequilibrium is another good description. The sound sensitivity is my biggest adversary right now.
I agree with forever grateful. Did you try avoiding caffeine? That helped me. Diuretics made me worse in the lightheaded dept.
Thanks, forevergrateful and June! I did try no caffeine for a few months and now have about 1/2 cup in the morning. I can try cutting that out again. It is hard to identify triggers. I had a burnt end BBQ sandwich for the first time in a year. It did not change how I feel but sure tasted great! The sound sensitivity is really tough! SG
Sound sensitivity is the worse symptom for me as well as sound making me dizzy! I just started allergy shots and praying that works long term. I'm also trying to get myself tested for Candida overgrowth! We try everything and anything with this disease! Frustration is an understatement!! Hang in there!
Tonight I am dizzy and not quite sure on my feet but I con't have full fledged vertigo. It like being drunk without the fun part. I am out of it a lot of the day, especially when I get up in the morning. Sometimes I think this illness is so difficult to deal with, it leaves you confused and dazed mentally. It is not easy to live with.
The anti-virals helped a lot for me with that, but it took a little time (on the weeks scale). When I do have that persistent slight dizzy/nauseous feeling an acupressure wrist band really helps take the edge off for me. I carry one with me at all times, just in case. The ones I use are called "sea bands."
The antivirals did the most for my sound sensitivity, spatial unease, distortion and tinnitus for me. It took a month for me to get very noticeable but incomplete relief 60% maybe. The rest came over months and years and allergy shots helped with that, especially the parts that were eustachian tube related but inner ear as well. It seems it is a perfect storm of various assaults to the ear. I do know what you mean about sound sensitivity and mine is now gone. Take any bit of improvement where you can find it and then look around for more and be patient and hopeful.
Btw, the antiviral i used first was a generic acyclovir. I was very religious in taking it five times a day spread evenly throughout the day.
I can identify with your "spaced-out" feeling. For the past few weeks, I don't feel in sync with things around me. During the day, I feel like I had 3-4 glasses of wine the night before. It's like I'm dealing with a mild hangover. When I try to recall events or things within the previous few days, I feel like I'm sifting through a haze to recall them. My brain feels distracted and I am a little disoriented much of the time. It's scary as hell. Yesterday, my new doctor told me these are all common with MM. I think how she described it is that my brain is overworked trying to keep me in balance, and my vestibular area is inflamed and swollen with fluid. This is all taxing my body and making me exhausted and fuzzy headed. The vertigo is when it goes into crisis mode, boiling over and wrecking havoc. It made sense to me when she explained it.
sailing guy, have you ever tried neck exercises and aerobic exercises? Brain fog and space-out feelings can be due to cervical issues. They have others like migraine, feeling exhausted, drop in vision, functional issues in stomach and intestines, they can be all associated with cervical issues. Here is the paper from the neurologist who explains all of these. https://www.jstage.jst.go.jp/article/nmc/52/2/52_2_75/_pdf Because you like sailing, how is the neck positioning differently when you sail? You might also be aware that you had frequently clench whenever you apply power on something. Regarding aerobic exercises, walking at a little fast pace for at least 45 minutes can be recommended for everyone who is on average weight. This significantly increases blood flow including small blood vessels or capillaries. If the one is a little overweight, then exercise bike is a good alternative. I have done this walking every day, 7 times a week for two months that cleared most of my symptoms. One guy conducted a walking and cycling for 3 hours on his weekend and he said that his condition was so good for next 4 days. JOH is good too to improve blood circulation, so I can recommend doing them altogether.
I agree with the others. I'm like you as far as the symptoms go. They started in 1985 and have never stopped...just change occasionally. I'm not specifically a Vertigo person either. It's more like being Off-Balance for me.