Yes I did. Showers were rough for a while. I think low blood pressure was partly to blame. I would get that puke or pass out feeling. Try keeping the water warm not hot and keep your legs moving. Sometimes that helped. Other times i would have to cut it short in the middle of washing my hair, it just felt so bad.
I saw a whole thread somewhere on showers. people talking about what they thought was the reason for feeling gross in the shower.
Hang in there! This too shall pass!!
The Following User Says Thank You to lovineachday For This Useful Post: biteneck (06-15-2012)
Not to be dramatic but everything was awful for the first few months. My upstairs hallway is a catwalk(staircase as a hall) and I couldn't walk without holding on to both sides for about 8 weeks. I was literally walking like a toddler. I tripped over my own feet for awhile.I threw up regularly at first. Grocery stores and stores in general were hell. I did only short as needed trips- my pt told me stores are bad because there is so much stimuli. I kept a swimmy feeling in my head. I also felt like a pendulum was constantly moving in my head or that my brain was flipping. I couldn't drive at all for about 8 weeks and it took 4 months or so to feel comfortable driving solo. I started feeling much better about 4 months along. It's weird because I'd have a few days that were great then I would have a few days that were horrible. The good stretches got much longer as time went on. Now two years out I get moments or hours of discomfort. I notice when my kids are more demanding or I'm just exhausted is when I'm more vulnerable to setbacks. I also can no longer do high impact workouts. Any extreme movement sets it off for me too. I do lots of walking. Stay positive!!!
The Following User Says Thank You to Amy1007 For This Useful Post: biteneck (06-15-2012)
Hello again,
When you say you have some discomfort now, is it really bad again or just feeling like blah for a day? How is it in shopping stores now? I still am having those foggy headed feelings and slight dizziness with the stomach feel queasy. I am into 3.5 months of this. How long did you say you both had this? Thanks again. I'm sorry I'm so annoying with questions, but I get worried that this will never end and that makes my anxiety really bad, which I never had anxiety like this. I am still so afraid to drive. I used to absolutely love driving. Any idea when I might feel more comfortable with that? Thanks so much! I really appreciate your replies!
The following user gives a hug of support to biteneck: Amy1007 (06-15-2012)
No problem with the questions- not to sound cheesy but I want others who are new to this to know that it gets better and that they are not alone. When I say discomfort I mean I have times (hours or minutes of light dizziness or feeling unbalanced). Kind of like when you have a headache - you notice it but it doesn't necessarily stop you from getting through your day. In the beginning a bad day was really bad, like I said before most of the time when I feel uncomfortable a good night's rest or nap takes care of things. Often times, I felt drunk. Sounds alot like what you are experience with the foggy feeling. That wasall part of my experience. Here's something I often think of- if I had dislocated, broken, or torn some body part I woud feel it from time to time. So inner ear damage really is no different. I was tested by my ENT - I have a %45 loss- so even though I have compensated I will sometimes experience setbacks. My mom had a torn rotator cuff bc of a car accident- even though she had surgery and had PT she still has pain in her shoulder sometimes- same with our vestibular nerves. As mentioned before- my PT told me to move move move - the more you move the more you compensate. Start out slow, take walks, even when it hurts. Go with someone. Moving speeds recovery. I would encourage you to get real vestibular rehab. People who specialize in it really know their stuff and they can taylor your treatment. I would do a web search on vestibular rehab for you city. My ENT sent me to the wrong PT, and the guy had no clue what e wss treating me for. It set me back a few weeks. Take it one step at a time, you will get better. Recovery is not the sae for everyone. Even if you read something on te web about recovery times - it's not the same for everyone. I kept thinking - omg- this is taking so much longer than all of the literature and information says- but you will see progress! Get lots of rest, stay positive!
The Following User Says Thank You to Amy1007 For This Useful Post: biteneck (06-15-2012)
How are you feeling now? Yeah I laid in bed while my oldest had his 5th birthday party downstairs. Just to know that we aren't alone is extremely encouraging.
Thanks AMY1007!
I have been told that alot of people start really noticing an improvement around six months. So I have another couple months to go. Today I felt woozy in the shower and then while at the Dollar Tree store with my husband, I felt that weird out of it foggy thing about 3-4 times. It seems a lot worse in stores. I was told that's because of all the stimulation around and the lights. I felt so strange that it almost feels like you might pass out. So lightheaded and weird. I hate those feelings! I just want it to stop and my husband keeps telling me to have patience. I want to but it is so hard to at times. I really do notice a difference since March. So it does seem better but ever so slowly! Thanks again for your encouragement and words of advice!
I'm good!! Really good! I have the odd blip now but it's like Amy said. Just mildly dizzy, no nausea. It's nothing that gets in my way of doing anything. I drive all the time. Sometimes after a long drive I feel a little off for a day or so but again, it's not awful. I work out, have a drink or two sometimes (not a big drinker generally anyway), do everything I used to. This is a two steps back three steps forward thing I think. I remember feeling awful after teo events, a christmas dance and a wedding. I wore heels, had 4-5 drinks and didnt get much sleep. Both of those events were 6 months after getting it(I was still having crappy phases) and a year later (I was feeling good but th wedding caused a decomp). Just try to enjoy the good days and try to keep the faith that the bad days will slowly go away. Again, do your best to keep the anxiety down if you can. I healed so much faster once I managed to do that.
Take care!!! Sending healing vibes!!
This all resonates with me so much. I too have a 45% loss in one of my ears. I was diagnosed with VN, and am 3 months into this. Luckily right at the beginning I read about the compensation process and not to take any medication - at the beginning I was literally falling over myself, but kept was trying to take 5 minute short walks, sit in the car with my girlfriend or try out a shop here and there. I pro
Everyday is such a struggle, but I just keep trying to move, move and move as you say. Sometimes it gets too much and I need to just sit back and relax. The nausea and intense waves of dizziness that come out of nowhere is really tough - it feels like you are going to fall of your chair or bed with a heavy bowling ball on your head.
I started some of the Cawthorne Cookesey exercises early on, before finally being referred for VRT for a formal programme 3 weeks a go. When you say make sure your therapist knows what they are doing, what exactly do you mean? What do you experience with a bad therapist?
Really good to hear about success stories and people can get back to some normality after 6 months or so.
When I say make sure the pt knows what they are treating you for I mean I was referred to someone who thought he was treatingme for Bppv- totally threw me off for a week or two. It's all very ranfom- I kept a daily log on my ipad and listed how I felt each day- then I stopped posting unless I would have bad days. I posted less and less as time went on. It all takes time, but it gets better.
The Following User Says Thank You to Amy1007 For This Useful Post: khalid567 (06-16-2012)
My PT def knows she is treating a Labs/VN disorder. She has thrown in some Brandt-Daroff exercises for good measure to avoid any BPPV element surfacing as it can with this I have heard - quite proactive of her I thought. The exercise I am referring to is laying down side to side and takes around 10 mins a day - it can't hurt.
Apart from that I am getting all the standard stuff - various foot positions eyes closed, various head movements, gaze stabilisation, playing on the wii fit, bit of table tennis. In total it takes me roughly 1 hr per day, so split it up into 3/4 15 minute sessions which helps with not getting overly dizzy. Does this sounds about right to you?
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.
The Following User Says Thank You to lovineachday For This Useful Post: Amy1007 (07-10-2012)
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!!!
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.
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?
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.
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!!
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!
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.
The Following 2 Users Say Thank You to Amy1007 For This Useful Post: biteneck (06-26-2012), Eilleor (07-09-2012)
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
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....
people talking about what they thought was the reason for feeling gross in the shower. 
Re: vestibular neuritis... feeling nasty again. veterans help! 
