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Old 06-16-2012, 10:50 AM   #31
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Re: vestibular neuritis... feeling nasty again. veterans help!

I once got super impatient and do a ton of VRT. The next day was awful!!!!! Like you said gotta find the balance. Some days all you do is just try to do the every day things. Cleaning, laundry etc. all of that is VRT in a way. Once you can exercise, that's awesome VRT. Someone said once that you almost to need to relearn every
Movement you ever make again, with your new "brain". Many people have healed before us and we will too. I know a lot of
People who only har minor setbacks whenever they get a cold. Other than that they feel
Completely normal. I can love with that. Everyone has their thing (diabetes, arthritis, migraines, ingrown toenail, lol, whatever...) this is just ours. Even tho it can realllllllllly suck at the beginning, there are way worse things to suffer from.

 
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Old 06-16-2012, 11:04 AM   #32
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Re: vestibular neuritis... feeling nasty again. veterans help!

Yes, my therapist said I need to get back to the gym twice a week for 15 minutes a go. During my VRT session I was put on a treadmill at fast walking pace and an exercise bike for a total of 6 minutes. I came off and the floor was literally bouncing and moving. I have no idea how I am going to get back into the gym. I'm not great in busy, loud environments so I'm going to have to find the courage somehow to do this.

Give me an ingrown toe nail over this anyday of the week!!!

 
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Old 06-16-2012, 07:00 PM   #33
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Re: vestibular neuritis... feeling nasty again. veterans help!

Anxiety and depression are a huge part of this too. My therapist would say - look- if you are at home you are safe- do your VRT and roll with it. I went through a period of getting extremely anxious when leaving my house (even after getting through the worst)- even driving 20 minutes to get my daughter from preschool was so stressful. I would walk into a store and immediately feel dizzy and overwhelmed. I would take a list - get only what I needed and leave. My attack was July 4th 2010( Happy 4th of July!!) and pretty much the next 4-6 months were a loss. When my husband took me to the hospital obe of the nurses actually whispered in my ear that she thought I had postpartum depression- yeah - that's why I had thirteen straight hours of vertigo. So few people know about VN - even in the medical community. Before I saw a specialist I saw my family dr and she told me this would all be over in a week.

My oldest was starting Kindergarten that year, we live a 10 minute walk from his school and I'm pretty sure I looked totally wasted as my husband and I took him to school the first day. It was hell to walk - but I was not going to miss it. As he celebrated his fifth birthday I laid in bed as dizzy as ever. I missed activities at my older daughter's preschool- it was the little things. The biggest was the fact that my youngest had just been born - and the first four months of her life were pretty much a blur. I mean I am a super hands-on mom and it killed me to place my childrens' care in the hands of others. I was so happy to have my baby- was going to relish every single momemt because she was my last. It all went down the drain for awhile but I actually managed to nurse her through seven months. I was really sad about being so sick while she was a newborn but I enjoy every little thing with her now- with all of my kids- because I've been in a place where I couldn't even take care of their basic needs. Thank heavens for renewed health. One of my closest friends (of 18 years) has MS- so whenever I have bad moments I always remember that she will deal with MS for the rest of her life- keeps things in perspective. BTW, has anyone flown after this? I last flew six months before ths hit. My dr says I should be fine - just wondering.

 
Old 06-16-2012, 07:43 PM   #34
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Re: vestibular neuritis... feeling nasty again. veterans help!

How long was it until being in restaurants and stores seemed like normal and before you got VN? I still feel woozy in stores and out of it like my brain wants to stop. Does that make sense? It almost feels like your brain is pausing like on a computer that's downloading something and pauses briefly.
Also how often do you get those uncomfortable moments now like you mentioned in your other post?
I am hoping to get over soon. My husband says to have patience but it is very difficult. Most of today I was fine until we were having dinner at the Spaghetti Warehouse and I felt out of it off and on. I think it's because of it being loud with people and not much lighting in the restaurant.
Please let me know and I do greaty appreciate it.
Does anyone else experience this too?

 
Old 06-16-2012, 08:18 PM   #35
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Re: vestibular neuritis... feeling nasty again. veterans help!

Amy, I flew less than a year and a half after onset and was fine. I did choose to take pseudo ephedrine before/during flight just to try to keep the tubes open. Lol I'm not sure if it did anything but it made me feel like I was doing something proactive. I was paranoid about the pressure changes while on the plane but fine otherwise. There is a thread somewhere about flying. Most people had no issues.

Biteneck, honestly do not worry about the tail end of this illness. It is nothing compared to the beginning. Once you start having lots of good days in a row, a day or two or a week or two of some slight dizziness that is just a little annoying (not nauseating or anything, and def not constant) is nothing. Really. I remember wishing someone would tell me when it would end and I could get my life back but everyone is different. I think more important is to treat yourself well, give yourself a break, do what you can to keep
Moving and rest when you need to... And most of all, try not to be "the one who has inner ear issues". Try to be the one who has a temporary issue. I know it feels too long and people get tired of hearing about it. But there will come a time when you don't mention or think about your ears for months. Keep the faith!!! (hope I'm not being too preachy. Lol I just wish I knew then what I know now. It sucks a lot but it WIlL end. Not abruptly for most, but it eases slowly but surely.

Last edited by lovineachday; 06-16-2012 at 08:20 PM.

 
Old 06-17-2012, 12:56 PM   #36
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Re: vestibular neuritis... feeling nasty again. veterans help!

Quote:
Originally Posted by lovineachday View Post
Amy, I flew less than a year and a half after onset and was fine. I did choose to take pseudo ephedrine before/during flight just to try to keep the tubes open. Lol I'm not sure if it did anything but it made me feel like I was doing something proactive. I was paranoid about the pressure changes while on the plane but fine otherwise. There is a thread somewhere about flying. Most people had no issues.

Biteneck, honestly do not worry about the tail end of this illness. It is nothing compared to the beginning. Once you start having lots of good days in a row, a day or two or a week or two of some slight dizziness that is just a little annoying (not nauseating or anything, and def not constant) is nothing. Really. I remember wishing someone would tell me when it would end and I could get my life back but everyone is different. I think more important is to treat yourself well, give yourself a break, do what you can to keep
Moving and rest when you need to... And most of all, try not to be "the one who has inner ear issues". Try to be the one who has a temporary issue. I know it feels too long and people get tired of hearing about it. But there will come a time when you don't mention or think about your ears for months. Keep the faith!!! (hope I'm not being too preachy. Lol I just wish I knew then what I know now. It sucks a lot but it WIlL end. Not abruptly for most, but it eases slowly but surely.
Hi Lovineachday:
I forgot to ask your this, although, I am forgetfull these days. Sorry, but did you feel the weird fogginess too? It's like a dream world where you are not real? I've read that derealization is an affect of this inner ear thing. I hope it it because I don't want anything else wrong. lol Anyway, thank you so very much. I hope you don't mind if I have some other questions. Also, it does seem like something you have to look at by month by month or even 2 months. I feel ok and not too bad but then wham, I feel out of it again. Just out of it and almost like when you are very tired and can't keep awake. That's another thing I heard this does to you is make you tired.

As I've heard, 1 step forward and another 5 steps back. Do you notice that your dizziness or fogginess creeps up again during your period? Or do you not really notice anything anymore? My dizziness has at times looked like thing were bouncing. Is that normal with this and should it go away? Many Thanks!!

 
Old 06-26-2012, 09:54 AM   #37
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Re: vestibular neuritis... feeling nasty again. veterans help!

Lovineachday and Amy,
Please let me know if you experienced ear fullness and just felt a strange head fullness sensation that felt weird. I think I mentioned that it feels like a dreamy state at times.
Did either of you have this and please let me know if it was towards the end of this nasty crappy illness. I guess I just want to know that it does all go away and that I will be my confidant self again sometime. Did Kmart make you feel strange and out of it when walking around? I felt funny there and at Lowes and Home Depot. Thanks!

 
Old 06-26-2012, 10:54 AM   #38
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Wink Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Biteneck,

All of those things sound familiar. I basically felt like I was walking around intoxicated all of the time. I had head fullness, unsteady gate, at times a constant feeling of dizziness and a host of others symptoms. There was no date I could have circled that signaled the end, it was gradual. I know somewhere around the 4 month mark I started to feel much better. I still had discomfort on a daily basis - but I started to resume normal activities. Stores were horrible and it took maybe 6 months not to be "set off" in a store (as in I could shop without feeling like I had just walked into a circus fun house). Stay positive. I've been where you are, and I am still enjoying life. It just takes time. It's hard finding people who know what you are dealing with. I understand. Keep going!! You are getting through it.

 
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Old 07-03-2012, 01:25 PM   #39
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Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Amy:
I think I am noticing getting better, but like we say, it's very, very slowly and gradual. Did you have a weakness in either ear? I had 25% weakness in my left ear on the caloric testing. Sorry, I don't remember if I asked you that before.
Another thing is that the neurlogist said it also sounds like a case of vestibular migraine. I have not started on the Depakote for that yet.
Have you still be doing good? I am trying to be patient but know it can take up to a year to finally realize that I am back to myself. One thing that is not helping is that I am not working, which I think would help me get back to some normalcy. I have been home taking care of my little girl. I get nervous thinking of going back to work with this. I might be better off waiting until next year, you think?
Thanks,
Nicole

 
Old 07-03-2012, 08:54 PM   #40
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Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Nicole,

Happy fourth of July!!In four hours it will be exactly two years for me- weird but I kinda celebrate the fact that I'm not where I was two years ago. I have 45 percent loss in my left vestibular nerve. I never saw a neurologist- but I have had bad headaches as a result of this. From time to time I get a very bad headache (my PT told me I could experience vestibular headaches after the fact) but thankfully I don't get them too often. Just keep moving, I don't know what you do for a living - but moving regardless of working or not is the most important(or it was for me). It was a full four months before I even started to resume normal activities on my own. Even when you feel better, you can have bad stretches so I understand you concerns about work. You are right, it's gradual.

This is so challenging with children. I had just had my 3rd child on June 18, and this happened on July 4th. We had to have my MIL move in with us for over a month. It is so hard when you aren't 100% trying to take care of children. My kids only wanted me. It was very difficult. My MIL would try to dress my 2 year old and she would have a fit. They wanted me to cook for them,play with them, they didn't understand. My son started Kindergarten and just didn't understand why I could not go on field trips, drive him, or come to school. I get your frustration.

I have felt fine- my older two children swim and they are in an indoor pool. We have had triple digit weather and it makes the indoor pool even hotter and more humid. I am no longer able to sit next to the pool because I get really light headed and start to get a bit dizzy. But other than the random discomfort I am doing well. Thinking of you! It gets better....

Last edited by Amy1007; 07-03-2012 at 08:57 PM.

 
Old 07-05-2012, 06:00 AM   #41
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Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Amy:
Happy 4th of July!!

I fogot to mention one thing. While in Wal-mart beginning of this week, they turned down and dimmed a lot of the lighting while there. That really messed with my head. I felt a little disoriented at first and when I feel that way, I think it makes me worry and I feel a little worse then it passes. While sitting at the Subway restaurant in Walmart I felt weird like things were very spacey and unreal. I hate, absolutely hate this feeling because I feel like my brain is really messed up and like I'm going to pass out, faint or die. Please tell me if any of this sounds familiar to any of your experiences with this. At sometimes I feel fine, but then I notice it again. I know it's one step forward a few steps back. I think that thinking about it makes me feel it more too.

I am not working right now and am caring for my 6.5 month baby girl. Before getting this I was interviewing and looking forward to getting back to work to help pay bills and put money towards my little baby's future. So much for that right now.

I've noticed a couple people, including myself who got this only a few months after having a baby. Another girl was diagnosed with it at eigth months pregnant. I'm wondering if there is something with this or just coincidence. I was just a little over two months of having my little girl and I really miss feeling so confidant and just getting in the car without a second thought.

I'm trying to feel good but it's hard to keep upbeat. I really appreciate your encouragement. I need it!
Thanks and hope you are doing well.
Nicole

 
Old 07-05-2012, 07:55 AM   #42
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Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Nicole,

Those uncomfortable feelings are normal. A few words to describe how I would feel- swimmy, foggy, drunk- I would feel as if I was floating. That is all a normal part of the process. A few months ago we did a weekend away near a resort area- lots of family friendly kid's stuff. There was a fun house type place we took our kids to and in the entrance there were visual effects. It was dark and made you feel like you were walking through space. The entrance rotated and so did the ceiling and wall around it. I could NOT go in that way. Just looking at it for 5 seconds I got very uncomfortable. I had to use the handicap access. I was amazed at how uncomfortable it made me - even now. Good point about the postpartum thing. My dr told me it probably had something to do with just giving birth-my immunity was " lowered"- I actually thought I could have picked up something in the hospital but I truly think he was right about lowrred immunity - etc. You give birth and you are consumed with caring for the baby- you are probably not at optimal health - your body is recovering and you are not getting the rest you need - it all makes sense. Hang in there.

 
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Old 07-09-2012, 08:33 AM   #43
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Re: vestibular neuritis..feeling nasty again. veterans help!

Thanks for your explanation! It helps to read a story like yours, because it is hard to believe that I evewr will be normal again, special on bad days like todays. I am living in Holland and the information about VN is very optimistic here, in general they say
it will be over within 6-10 weeks...I am suffering with it since october 6th,2011. I am having some better days, I also try to do everything as musch as normal as possible, but it is not easy, I agree, all I want to do on my bad days is to hide and sit or hang in a chair without anything else.... Better not to do that, because it makes it worse. Txs again for your story

 
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Old 07-10-2012, 07:41 AM   #44
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Re: vestibular neuritis... feeling nasty again. veterans help!

Eilleor,

Hang in there. I originally posted this 13 months after my "attack," I struggled quite a bit last summer. You're about 9 months out. Even after the acute part of this there is progress to be made. I made great strides by 4 months,but I still had issues. As I mentioned before when I was going through the worst of this all I wanted was to be able to get online- find a real person who said the worst was behind them. There is so much information - and alot of it has you thinking you'll wake up one day and be the person you were before. Kind of like- mark your calendars you will be better on this date. Even my dr was surprised about how long it was taking me to recover. I was frustrated with him. I saw him several times in the first few months and he would say give it one or two more weeks. I would sit and cry- like - oh my god- this is never going to get any better- I was hanging on his every word.I'd go back to him and it would be the the same give it another few weeks speech. It gets better, recovery is different for everyone. Have you had any testing or vestibular therapy? Give it time. Stay positive.

 
Old 07-10-2012, 08:23 AM   #45
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Smile Re: vestibular neuritis... feeling nasty again. veterans help!

Hi Amy:
Did the stores kind of make you feel like a seizure in a way? I feel funny when it seems to be cloudy outside. I have heard that colds can make people decompensate. I'm not sure if that means it will be as bad as the first time or just that they will feel uncomfortable. Did it seem that the stores don't get ok until much later in this? If so, it might be because I don't go to the stores too much and if I did maybe I would feel somewhat more comfortable quicker. Just a thought. I hate the feeling that things are dreamy. That is so nasty and I am not sure if the other feeling is just anxiety. I don't feel like doing anything like cleaning or things when I'm by myself with my little baby. I just want to sit with her and go online. I don't know about that. It might be the anxiety taking over and not letting me feel ok with doing things. All I know is that before any of this, back in February, I was fine with just hopping in the car and going out for a quick bite to eat and I was fine with being in the dark and fine with doing dishes, laundry etc. Please let me know if you think this is depression/anxiety brought on by the VN. I just want to feel comfortable again. Did you say you are pretty much back to the old you? I saw a neurlogist and he thinks it could be VN and vestibular migraine together because I have pressure on the sides of my head above my ears. Almost like I have sunglasses on all the time. I feel uncomfortable in the ears even though it's only supposed to be the left ear, if that makes any sense. My husband still get dizzy occassionaly but he does not have that dream feeling. I guess that shows how different it is for everyone. Thanks for answering my questions. I am feeling depressed today. It's hard when I'm by myself with my little one. Thanks again for all your help and take care!
Nicole
PS-I might have more questions if I notice anything else. Thanks!

 
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