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  • Vestibular Neuritis Support

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    Old 08-12-2014, 01:19 PM   #1
    CBS2424
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    Vestibular Neuritis Support

    Hello- I haven't seen many recent posts on this subject but I thought I would post to see if anyone out there is currently dealing with this. One night in June I went to bed feeling completely fine and woke up the next morning with vertigo, nausea, headache, and neck pain....completely out of the blue. I have yet to feel normal since that day. The first two and a half to three weeks for me were the worst. I have a 2 year old and an 11 month old that wake frequently throughout the night, wake for the day at the crack of dawn, and spend a large majority of the day crying, whining, screaming,etc, all of which seem to exacerbate my symptoms. I had a very difficult time caring for my kids and completing any productive work at my banking job (which requires a high level of analytical thought). I could not focus and had difficulty concentrating. I have an amazingly helpful husband who has been a big help but he also has a demanding career, so I had to find help caring for my kids, which was devastating to me. I was also fearful I would have to take a leave of absence from my job because I was having so much trouble at work. Around the 2.5 week mark I started taking meclizine, which was a huge help for me. After taking this, I really felt like I got my symptoms under control and I could start to somewhat function again. None of my symptoms went away but they seemed to lessen to a point where I could function again. Around this same time I had a n MRI, which found nothing, so I think my outlook on the situation got much more positive. I would say up until this point, I was having pretty significant anxiety over the situation but that has since gone away.

    At around the one month mark, I had an VNG that identified a 23% weakness on my right side and from this I received the Vestibular Neuritis diagnosis from my ENT dr. I begin my VRT this week.

    I would say for the past month my symptoms have pretty much stayed the same. I don't have what I would consider vertigo anymore but just a constant sense of imbalance and unsteadiness. I have good days and bad days but I am at a point where I have learned to function. I had a day last week where I was running with my son and I stopped for a moment and thought wow, I feel great, maybe I am actually starting to heal. After a terrible night of sleep with my kids, I woke up the next day and was right back to how I felt in the early days. That happened almost a week ago and I still am not feeling anywhere near where I was that day I was running with my son. My nausea is back and I feel very dizzy and "floaty" again. It is so frustrating and I don't understand what caused the regression....lack of sleep? I also started last week with some noticeable ringing in my ears, which has continued intermittently over the last week. Is it common to develop tinnitus in the recovery stage? I also have noticed the return of some visual disturbances, that had previously gone away. For the most part, I have had no problems driving or shopping. Only once at a store early on did I have issues, when I thought I was having sensory overload.

    I am hopeful the VRT I start this week will help me get back to normal. I try to maintain a positive outlook and on days where I am feeling good, this is much easier. I think the worst part about this is the unpredictability of it. I have no idea how I will feel from one day to the next. In addition, trying to explain this to friends and family is exhausting. No one seems to understand and I think most are tired of me talking about it and doubt that I could have something that has lasted this long that can't be cured by medicine. I guess my point in writing this is to see if anyone else is currently going through this and how long yours has lasted. I am at the 2 month mark now and am currently feeling defeated by my recent setback. I don't feel like I've made any progress in the last month and I worry I will not ever get back to normal. While having two young kids has made this even harder on me, I am thankful for them because they have forced me to get out of bed and move on with life. I have days where I feel sorry for myself and ask why this happened to me but I try to remind myself how much worse it could be and how blessed I truly am. I would love to hear from anyone else going through this, if anything for support.

    One last thing, six years ago I had a vertigo attack that appeared out of nowhere and lasted about 5 days and them completely went away with no residual effects. The only similarity to this experience was the vertigo I experienced in the early days, otherwise, they have been completely different experiences. Do you think the two are related? My ENT dr hinted that there was a heightened possibility of Meneires Disease because I have had two vertigo attacks but I was curious if anyone else had any thoughts on this? I had a hearing test at 2.5 weeks and my hearing was fine. Do you think there us possibility I have Meneires? How do I know the difference?

    Thanks to anyone who has read this incredibly long post. I wish everyone luck who is in the same situation as me and hope that we all recover soon. In the meantime, keep positive!!

     
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    Old 09-30-2014, 07:28 PM   #2
    alij1021
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    Re: Vestibular Neuritis Support

    I have been dealing with the EXACT same issues for about 1.5 months now. I was at work when it hit. Late morning, close to lunch. Out of nowhere. BAM. I got hot, lightheaded, severe nausea, and I felt completely off balance. The room was very unsteady. Like the floor was wavy. I left work because I seriously felt like I was going to vomit. All I wanted to was lie down. Drove myself home (slowly) and as soon as I got home I went to vomit, and nothing. But I didn't feel well at all. It was like that the whole weekend.

    Monday came and wasn't better so I went to the doctor. Viral infection, he said, so a few days of rest and come back Thursday if I wasn't better. Thursday came and I was feeling a tad bit better but still not well. Went back to doc, and did a urine and came back bladder infection. Prescribed Cipro and went home. 2 days later I went to ER bc my face was tingling and the pressure (not headache) in my head was intense. Plus the vertigo/dizziness was out of control. CT scan was normal and she diagnoser me with acute Labrynthitis. Told me to keep taking Cipro, and prescribed steroids and meclizine. Few weeks went by .... Little improvement but not a huge change. Went and had both of my ears cleaned out (impacted ear wax) and that NP told me to start taking Sudafed and Claritin, atop everything else. No change. Pressure would subside while taking Sudafed, but that is about it. And at this point my anxiety was through the roof and I wasn't sleeping well.

    A few nights later I had severe pain behind my ear on the back of my head. Went to an express clinic and was told that my middle ear bone was "protruding" and my ear drum was retracted. No fluid behind either ear. Told me to keep taking all the meds, PLUS, put me on dome ear drops and Ibuprofen. The next day was the worst. I literally couldn't stand up for anything. Called the "hotline" nurse at the hospital and said the weather change was causing me to feel that way. I had to call hubby to come home because I was scared out of my mind. Not just for me, but our youngest son who still isn't in school. What if I passed out??? He would've been helpless. Anyway, hubby came home and it all got worse. So back to the doc I went. This time I saw an NP who worked for ENT for 15 years. (Keep in mind by this time I had convinced myself I was crazy). She found no middle ear bone protruding and saw fluid behind both of my ears. Told me to stop taking all the crap everyone else had me on. It was just making matters worse. Put me on amoxicillin and Zyrtec and forced me to take the meclizine. She also was shocked that no one had already sent me to ENT. I shared my surprise. Fast forward a few weeks...

    ENT couldn't tell me anything. I'm lost and feel so alone. I can't seem to get anyone to understand me. The vertigo is manageable now, but I do have my bad days. Still dealing with neck, shoulder, and "back of my head" pain. Its difficult to drive a lot of the times or stay focused straight on reading or walking through the store. I hope you see this, bc our stories are so similar!!! Mom of 3 here!! This is making it so hard to function as Mom, employee, wife, etc. Just want real answers!!!

     
    Old 11-02-2014, 04:31 PM   #3
    Grapes1986
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    Re: Vestibular Neuritis Support

    Hello!

    I have also been having a weird time with VN, I found both of your posts comforting.

    I've had an inner ear problem for almost a year now. My symptoms range from nothing, or a mild spacey/lightheaded feeling, to a more direct feeling of dizziness, ear pressure, and jaw pain. When I first got it, it got better in a couple weeks, but I made the mistake of going out and having a few too many drinks - by the middle of the following day, my hangover had been replaced by horrible dizziness! Over the next six months or so I got better, until just recently when the same thing happened again. So for me, I know too many drinks and not enough sleep is a problematic combo. I know it's different for everyone though.

    The thing I admire about both your posts is how you're raising a family and coping with an inner ear disorder. I'm 28, not married, no kids. I do want both of those things someday - or at least kids someday - and having this problem makes me worry about whether I'd be able to be a parent when I'm freaked out about my ear problem all the time. SO... I just wanted to let you that I think you are both very brave and strong.

    Another thing I'd like to share: initially I would tell people, but it got so exhausting to talk about with all my family and friends that I don't ever tell people now. OR, if I do, I don't go into too much detail. For me, just living and staying as active as possible has been the best cure...

    I hope you both get better soon. The more you get to know you're body, the easier it'll get to deal with the dizziness and avoid it altogether

    Grapes

     
    Old 11-10-2014, 08:57 PM   #4
    Dizzy nyc
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    Re: Vestibular Neuritis Support

    Hi all!

    I completely relate to everything. My symptoms started about 3 months ago when I just came home from vacation in Europe. One day after lunch I started to feel really hot, nauseous, lightheaded and disorientated. I went home and laid in bed for the rest of the day thinking it was dehydration since it was summer and I'm pretty active. The next day I went to work and my symptoms got worse so I went to the ER. They thought it was either dehydration or a viral infection but leaned toward the former and sent me home. After about a week the symptoms were the same with an addition of a swaying and rocking sensation when I was sitting still. When I walked it felt like I was walking on clouds. Went to my GP and she ruled out any blood pressure problem and thought it was a viral inner ear infection. The following week I went to the neuro and she ruled out anything serious with the brain after MRi came back normal. Next went to an ENT and she didn't think it was inner ear since I didn't have the classic vertigo sensation of spinning. Went to another ENT and he thought it was VN and ordered audio, vemp and vng testing. However, by the time I went in for the tests my symptoms disappeared (about 1 month after the start of the whole ordeal). Audio showed slight hearing loss in the right ear but since it was so unnoticeable, it could have happened years ago from loud noises. Vemp and vng also came back normal.

    A few days after the testing, the symptoms started to come back slowly. It started with extreme lightheadedness and heavy headedness to the point where I thought I would faint at any moment. Then I started having headaches (which I never really have). Also started having a very hard time concentrating at work as it was difficult to read and scroll on the computer screen. Decided to go to another neuro since the symptoms were different this time and she thought it was MAV and put me on gabapentin. Two days later I was feeling better all day but then got dizzy only when I turned my head back and forth. Around midnight I experienced vertigo for the first time with the full spinning sensation (two months after my initial symptoms). I had to go to the ER with extreme vertigo, nausea, vomiting and nystagmus. I was admitted and my neuro switched her diagnosis from MAV to VN after MRI and MRA came back normal again. She then referred me to VRT.

    It's been about a month since my only vertigo attack and now my symptoms are difficulty with concentrating (although improving slowly), slight disorientation and dizziness when walking or turning my head suddenly, extreme confusion when in any store or restaurant, very overwhelmed by visual stimuli. I've been going to VRT for about two weeks now and do exercises 3x a day. Some days are better than others, such as today when I was so dizzy after walking for 10 minutes that I had to come home and lay down.

    Before this I was extremely active exercising and have no health issues. Trying to hang in there as I'm only 29 and want my life back!

     
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    dizziness, inner ear disorder, vertigo, vestibular neuritis



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