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Old 08-04-2011, 09:51 AM   #1
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vestibular neuritis... feeling nasty again. veterans help!

I had my initial attack 13 months ago. After seeing the proper specialist, having two separate rounds of testing months apart my diagnosis is vn. I did four months of vrt through December of last year. I was feeling good again considering my %45 loss in my left ear. I had a rough time January-February on and off but for about 6 months I felt fine. I felt comfortable doing most everything with a few hiccups here and there. I went on vacation, I go to stores, I drive, and I independently take care of my three children. In the past two weeks I feel dizzy and off balance at times more than I have. People ask me to describe it- I say it's like having a persistent headache- it doesn't keep me from getting through the day it just makes things a little more uncomfortable. It's not anything like it was in the beginning- but sometimes I feel like I turn back the clock about 8 months. One day I'll feel fine and the next I feel like I deal with it for a good portion of the day.This happened before but it's even more frustrating because my bad days have no explanation. I'm trying to take care of myself( lots of water,exercise, and sleep)but my kids(6,3,1) take alot out of me, it's summer break for my oldest and I haven't gotten alot of rest lately. The 100 degree heat doesn't help either! So maybe that's a clue. I would love to hear from some veterans who have gone through something similiar. I talked to a lady online and she is 5 years out and still feels it from time to time.

Last edited by Amy1007; 08-04-2011 at 10:12 AM.

 
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Old 08-11-2011, 01:31 AM   #2
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Re: vestibular neuritis..feeling nasty again. veterans help!

It could be decompensation from the vestibular injury.

Have you ever had headaches in your lifetime?

 
Old 08-23-2011, 11:04 AM   #3
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Re: vestibular neuritis..feeling nasty again. veterans help!

How are you feeling now, Amy, a couple of weeks having passed?

I'm 13 months in myself. I was doing fantastic the last couple of months and am having a little setback (see my dancing thread).

Although it's always discouraging and kind of depressing to decomp, I always try to be thankful... it could always be worse!! And everyone says not to let the anxiety get out of hand. I really believe that. I hang on to the thought that I was at 99% before and I WILL be again.

Hang in there! Hope things are better for you now, and if not, soon!

 
Old 08-28-2011, 10:42 AM   #4
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Re: vestibular neuritis..feeling nasty again. veterans help!

Hi there and just inquiring about VN. I have had it since the end of May. I was not told that I had VN until beginning of July due to the million tests I did to eliminate things. So, i guess I am into month 3. I would LOVE to ask you some questions if you don't mind.
I am getting a little desperate here. Needing some solid answers/ advice.

 
Old 08-28-2011, 10:48 AM   #5
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Re: vestibular neuritis..feeling nasty again. veterans help!

Hi Amy, I would love to hear how you are doing now. I am not liking this thing at all. I am so depressed by all of this. I love to hear some advice from you or anyone!

 
Old 08-28-2011, 02:46 PM   #6
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Re: vestibular neuritis..feeling nasty again. veterans help!

I'm new here myself, but there seems to be a lot of encouraging people here who know a lot about VN, etc.

I really believe that getting discouraged, anxious, afraid it will last forever... all those kinds of feelings... make my ear issue SOOO much harder to deal with. Once I was over the worst of it, I tried to be grateful every day for the fact that it wasn't worse. I tried not to talk about it, even when I was feeling terrible. (The Secret Trying to stay positive, even though it has been tough, has REALLY helped my mindset.

It took me many months to get a diagnosis as well. I wish someone had told me early on to KEEP MOVING. It's hard, because all you want to do is sit and relax, or lie on the couch and sleep when you are having a bad day. I had so many days when I would wake up, get in the shower, dry heave for a few minutes and then wake my kids and get them off to school, feeling awful. I was and am still so proud of myself for how strong I was.

I'm at the tail end of my VN, thankfully, and my best advice to you is to exercise, do VRT, do your household chores... all the things that will help your brain compensate for your ear. At the beginning of my VN, I lied in bed for days on end. I would keep my head ultra still and stiff, trying to avoid feeling worse. Maybe that's what you have to do, but if I had known avoiding the dizzy feeling wouldn't help, I wonder if I could have pushed myself just a little more. And maybe be done with all this by now?? I don't know...

13 months in and I can do fitness classes, dance, go for boat rides, everything that would have seemed impossible 6 months ago. I still do my VRT most days, even when I'm feeling amazing.

Someone here wrote that we WILL recover. (I needed that reminder early this past week when I was decompensating). At certain times in this crazy journey, it was hard to imagine that I'd ever feel good again. I'm here, feeling 99% most days and SO grateful for it.

Keep the faith...

 
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Old 08-28-2011, 04:13 PM   #7
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Re: vestibular neuritis..feeling nasty again. veterans help!

Thanks for getting back to me. I have a few questions for you if you don't mind. I am trying to figure this all out myself.
1. Where your eyes effected?
2. Did you have headaches etc..
3. You seem to be so strong, did you every get stressed out about it and have anxiety?
If so, did you see a difference in your condition?
4. Did you take medicine for it? Methlizine or anything else?
5. Were you tired and fatigue?
6. Did your other muscles get attacked as well. I ask because once in a while I notice when I am really stressed out, my right side of my arm and leg hurts.

I am mentally going crazy over all of this. I am now into month 3 and have been doing my rehab for 5 weeks. I have good days and then crappy crappy crappy days and then bam I feel as though I am back to where I began. I am at 25% loss on my left ear. Thanks for taking the time to chat with me.

 
Old 08-28-2011, 09:13 PM   #8
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Re: vestibular neuritis..feeling nasty again. veterans help!

No problem. Hopefully this helps. And if nothing else, makes you feel a tiny bit less alone.

1. I did have nystagamus. sp? My eyes would jump a lot, esp when reading on the computer. SO annoying. My dr thought my dizziness might be related to my migraines at first, but later diagnosed me with VN when it was found one of my ears was damaged.

2. Yes, I had headaches. I get migraines regularly. I remember having some doozies... prob because of lying in bed for days. When the worst was over, I had some nasty muscle knots from being all tense/inactive. I'm still seeing a massage therapist regularly to work those out. I know they play a part in my headaches.

3. Ugh, some days were TOTALLY depressing. I remember lying in bed, hearing my kids playing downstairs and being SO sad. I needed a lot of help, my husband pretty much took over for weeks at a time/took time off work, my mom came to help, even neighbours (when I would have a sudden "spell")... truthfully, I'm surprised I don't have PTSD. I'm sure I had anxiety, especially in the mornings. I never knew what kind of day it would be, how bad it would be or how long the nastiness would last. Anxiety producing for SURE, and I know it didn't make things easier. I used to heave a lot in the mornings.... I thought that was because of the dizziness, but it has been suggested to me that it was anxiety. ???

4. I took SERC. For months. No idea if it helped or not, but I did find that when I tried to wean off it, I'd be dizzier within a week. Not sure if that was coincidental. The only side effect I remember is losing weight. But then, the dizziness/nausea did that for me, too.

5. Exhausted. Drained. I fell asleep early in the evening all of the time. It took SO much out of me, having to deal with feeling awful all the time.

6. I think when you are dizzy, and you walk/move your head differently, all stiff and such, it's unavoidable for your muscles to get stiff. I had trigger points all over my back and neck. I don't remember my arms or legs, but hey, everything is attached to everything.

I sound all brave now because I'm at the end. lol For a while there, i couldn't even bear to think back to the middle of it all... like I said, almost post traumatic. I know it's awful, but all you can do is keep doing your exercises. And know that it will lift. Every time I'd have a bout, I'd be SO bummed, but then so surprised when it left, sometimes fairly quickly.

Sorry for the novel... I'm happy to be able to share this, and hope it helps. Sending you many recovery vibes... and hugs.

 
Old 09-01-2011, 05:40 PM   #9
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Re: vestibular neuritis..feeling nasty again. veterans help!

Quote:
Originally Posted by lovineachday View Post
I'm new here myself, but there seems to be a lot of encouraging people here who know a lot about VN, etc.

I really believe that getting discouraged, anxious, afraid it will last forever... all those kinds of feelings... make my ear issue SOOO much harder to deal with. Once I was over the worst of it, I tried to be grateful every day for the fact that it wasn't worse. I tried not to talk about it, even when I was feeling terrible. (The Secret Trying to stay positive, even though it has been tough, has REALLY helped my mindset.

It took me many months to get a diagnosis as well. I wish someone had told me early on to KEEP MOVING. It's hard, because all you want to do is sit and relax, or lie on the couch and sleep when you are having a bad day. I had so many days when I would wake up, get in the shower, dry heave for a few minutes and then wake my kids and get them off to school, feeling awful. I was and am still so proud of myself for how strong I was.

I'm at the tail end of my VN, thankfully, and my best advice to you is to exercise, do VRT, do your household chores... all the things that will help your brain compensate for your ear. At the beginning of my VN, I lied in bed for days on end. I would keep my head ultra still and stiff, trying to avoid feeling worse. Maybe that's what you have to do, but if I had known avoiding the dizzy feeling wouldn't help, I wonder if I could have pushed myself just a little more. And maybe be done with all this by now?? I don't know...

13 months in and I can do fitness classes, dance, go for boat rides, everything that would have seemed impossible 6 months ago. I still do my VRT most days, even when I'm feeling amazing.

Someone here wrote that we WILL recover. (I needed that reminder early this past week when I was decompensating). At certain times in this crazy journey, it was hard to imagine that I'd ever feel good again. I'm here, feeling 99% most days and SO grateful for it.

Keep the faith...
Thanks for getting back to me. I wanted to know what ear was struck and if you knew your percentage. Mine was my left with a 25% deficiency. It definietley has gotten the best of me. I have had it for 3 months now and have pretty much made myself depressed over all of this. I went from a happy energetic ( probably too enegetic mom of 3) to a crying depressed person. When I felt good , I over did it and relapsed. I just started a anti-depression pill only for a short time because my dr says the anxiety and stress is keeping my body from healing. Did you go on anything?

 
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Old 09-01-2011, 07:58 PM   #10
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Re: vestibular neuritis..feeling nasty again. veterans help!

It was my right ear. And I totally can't remember the percentage... I am pretty sure it was less than 50. The two numbers that are stuck in my head are 40 something and 20 something. Neither may be correct. I'm not sure the percentage makes a difference to your illness, though, does it? Maybe someone can enlighten me? I thought that my ear just all around wasn't contributing to my balance system, even though it wasn't 100% damaged.

I feel for you, because I know it's so hard. For me, the nausea was the worst. I lost 10 pounds from not being able to eat. So hard to be a mom when you feel like you've been run over by a truck, I know. I didn't go on anything, but I was definitely down. From what I read, I think a lot of people take anxiety/depression meds for vestibular issues. It is a depressing condition, for sure, when you are at your worst. I missed my health, my freedom, my happiness....

That said, I read something on a board months ago that stuck with me. It was talking about your focus... and how easy it is to make your dizziness your focus. Become "the person with vertigo". There are days where it is totally and completely understandable when it is going to be your focus. But I think if someone had said to me back then, "This is ONLY temporary...you are for SURE going to feel like your old healthy self again soon!" it really would have helped. I was scared I wouldn't. And some days I felt like I just couldn't stand it anymore. In a way, it's a bit like when your newborn isn't sleeping... when you are in the middle of it, it feels like it's never going to end... then at 3 months, when the baby starts sleeping in decent chunks, you're like... what? That's it?? lol I'm at 13 months, but it's not like I've had 13 months of hell. I had a few months of hellishness, and then a few months of on and off nastiness, and then 6 months of lots of great days, interspersed with yucky days or mildly yucky days. For the last 6 months or probably more, I have been functional and the majority of days I've been happy and good to go.

Try to remind yourself that it will NOT last forever... that you WILL get better and be that energetic mom you were before. Try to be patient with yourself and good to yourself. Take care of yourself while your body is figuring out how to balance again without the help of your ear. One day at a time...

Keep the faith that one day soon, you will be here telling someone else YOUR story about how you got through the crap.

Hope not too Dr Phillish for you.

 
Old 09-01-2011, 07:59 PM   #11
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Re: vestibular neuritis..feeling nasty again. veterans help!

arosk, are you doing VRT?

 
Old 09-01-2011, 08:28 PM   #12
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Re: vestibular neuritis..feeling nasty again. veterans help!

Thank you so much for your inspiring words. I think looking back at the last 3 months I would do a few things differently. I did however take me 2 months to get diagnosed but then after that, I would not have depended on Methlizine ( not knowing that it henders my healing process) and Lorazopam ( not knowing it was addicting). I would have tried to stay active more ( but that is easy to say now, since then I was so tired and naseaus back then. ) I think I also messed up my body / healing process due to my anxiety and stresss. I really freaked out! My stress level was out the roof. My body just seemed to shut down. When I started my rehab 5 weeks ago, I would feel better and then feel like crap. It just got to me. I never knew what everyday was going to bring me.
I am happy I am going on my anti-depressent medicine, but I have a really weak stomach, so I am now suffering from the side effects but I heard that is just temporary. Ironically, one of the side effects is dizziness. I have to keep with the meds though, because my stress and anxiety was hindering my recovery process ( so my ENT dr told me.). I hate hate hate feeling this way. Thank you SO SO SO Much for telling me it WILL Get better. I have lost 3 months of my life and being a mom. I want this to be over! I need a light at the end of the tunnel. Any other pieces of advice to recover faster? Thank you so much again. I really appreciate it.
PS: I live in Tucson and the heat seems to bother my condition, did it yours?

 
Old 09-01-2011, 08:32 PM   #13
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Re: vestibular neuritis..feeling nasty again. veterans help!

Yes, I am doing 1 day a week of VRT. I am not sure if it is making a difference or not though.

 
Old 09-19-2011, 07:39 PM   #14
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Re: vestibular neuritis..feeling nasty again. veterans help!

Thanks for getting back to me. If you don't mind, I have a few questions that I would love to ask you. I do go to rehab 1 x a week, but do the exercises at least 3x a day. I have had this now since the end of May. I am also going to an accupunture man, that has been amazing for my anxiety and depression. His herbs have totally calmed my nerves and so have his massages. Even though I know I am slowly getting a bit better, I still have many up and down days. Here are my questions for you:
1) Is / Was it normal for you to have 4 great days and then BAM you are down for 2 days?
2) Did your eyes bother you a lot. Some days it feels as though I don't have the motion or dizziness, just the fulleness in my head and my eyes just being a bit off. That is the only way I can explain it. They are not so blurry that I can't see, but just enough that I need to squint or try really hard to try to get focus.
3) Did that time of month, ever "Trigger" dizziness? I have noticed that when I start my period, I get a bit dizzy on that day. Weird?
4) My eyes just can't handle stores like Target, Frys, etc.. Normal?
5) Will my head ever feel normal again? I feel like my brain is a bobble brain.

How long did it take you to really feel like yourself? I get so discouraged because I will have GREat days and then crappy ones just as fast. NOrmal?

Did you work? If so, when did you go back after having this? I am a teacher and have been off for 6 weeks now. I am so sad, but the stress of 30 kids and lesson planning and all of the other responsibilities put me over the edge. I am hoping to return in OCT.

Thanks for all of your advice. I look forward to hearing from you.

 
Old 09-28-2011, 10:07 PM   #15
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Re: vestibular neuritis..feeling nasty again. veterans help!

Hi Everyone,

I wanted to share my story because it sounds pretty similar to the ones on here.

This is my timeline:

* End of June 2011 - noticed fullness in left ear
* July 21, 2011 - first sudden episode of vertigo with signs of panic
* July 31, 2011 - second sudden episode of vertigo with signs of panic
* First week in August 2011 - went to two general practitioners, who prescribed me with an anti-anxiety med and dismissed my complains of having fullness in my left ear; went to ER and the doctor suspected an inner ear disorder and referred me to an ENT
* Second week in August 2011 - ENT prescribed me Methylprednisode (6-day pack) for inflammation to inner ear and IT WORKED. A few days after ending the medication, the fullness in my ear went away for the first time in two months.
* Third week in August 2011 - all ear symptoms have subsided; however, constant dizziness and anxiety continued; referred to cognitive behavioral therapy and vestibular rehabilitation therapy by my ENT
* End of August 2011 until Now - CBT (1 time a week) seems to be helping with the anxiety that comes with the constant dizziness; VRT (3 times a week) seems promising but I have not personally experienced improvement with dizziness yet

Symptoms I have now or had in the past since being diagnosed with VN:
* two episodes of sudden onset vertigo
* constant dizziness
* eye fatigue
* eye strain
* difficulty focusing eyes
* anxiety
* mild depression
* overall fatigue
* brain fog

I do want to say that I believe wholeheartedly that I (and you!) will get back to our old selves again. It IS possible and it WILL happen. The best part of this whole process is learning each day how strong we are and how much life is to be appreciated. I take nothing for granted anymore. I look forward to the day when this is a distant memory - I am confident that day will come.

 
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