Vestibular Neuritis- any recovery stories?
Posted , 157 users are following.
Hi, new poster here. Have been suffering with VN for 10 weeks. I was initially diagnosed with a gastro virus due to my main symptoms being dizziness, nausea and diarrhoea but after seeking private ENT consultant I was diagnosed with Vestibular neuronitis. I secretly suspected it was this but think I was in a bit of denial as all the stories on the Internet speak of long term chronic suffering and that terrifies the life out of me.
This condition is hell! I am dizzy and nauseous 95% of the time with lots of ear and head pressure. When I get really dizzy and sick I also get diarrhoea. I've lost a stone and a half in ten weeks as I can barely eat. It even plagues me in my sleep with dizziness making me wake up and feel horrendous, until I get up and move about which eases it a little. I have been off work since the start and need to return soon which seems impossible right now.
I have started seeing a physio and have been doing VRT exercises for a week which have made me feel much worse. I used to have the odd few hours where I felt okay but not in the last couple of weeks. Can it get worse before it gets better? Reading, writing, typing, watching TV all make me feel Worse too. I feel like there is literally no pleasure in my life right now and I can't even get relief in my sleep. I have two kids and have kept as a active as possible, caring for them and trying to keep life normal for them so I haven't been hiding away.
I don't seem to have had the acute stage at the start which slowly improves, I've just been the same for about 8 weeks and worse for the last two.
im scared I'll,never get better. I would love to hear from anyone who did get better after this time, or at least improved enough to enjoy life again or who was able to return to work. Did VRT help anyone out there and how long did it take for you to notice improvements? Sorry for all the questions! Any advice would be very welcome
Thanks
7 likes, 610 replies
emilia50996 cally_44573
Posted
xxKxxxxx cally_44573
Posted
Hello everyone ????
I was googling chronic dizziness and came across this post/thread.
I wondered if any of you could help me?
Back last year I was suffering from anxiety and one day back in May, I started getting these little dizzy spells, saw my GP and of course she said it was my anxiety or I've just overdone things and need to rest. A few weeks later I was still getting these dizzy spells and they getting worse so I saw my GP again and was fobbed off again. My balance at this time was awful and I felt like I was drunk. I was trying to carry on as normal and went for a walk in my local town with my partner and one of my children and I went completely dizzy and my hearing went for about 20 seconds. This wasn't normal so returned to the GP who did the Epley on me which did help slightly for an afternoon then the following day it was back, had the Epley done a few times but didn't help. I had therapy and got over my anxiety without meds and I was pregnant. I was still having these bad dizzy spells and off balance but I'd go through a bout of having it really bad for a few weeks where I can hardly go anything then it would to a more manageable level where I could actually do things. I kept seeing my GP and as being pregnant I was told it's probably hormonal imbalance even though this started before pregnancy but still she wouldn't listen. Finally she said if after having my baby I still have it she would look into referring me to someone. That gave me hope!
2weeks after having my baby I saw her for some other things and I told her the dizziness and off balance was still there and I was told to wait until my 6wk check up. At my 6wk check up I was told it still could be hormonal and wait a little while longer and for my periods to be back to normal.
5wks ago I was in my local town again and I had been feeling quite dizzy all morning and I felt like I was about to faint but I didn't and my dizziness went to severe again. I went to see a different GP a few days later and was sent for a load of blood tests and was told to wait for them as I was having everything ruled out to diagnose fibromyalgia as I also suffer with a lot of pain. And she said she would refer me for my dizziness. My blood results showed very low ferritin levels and a folate deficiency so now I'm on iron & folic acid tablets and my b12 levels are 200 but told that was fine but she wouldn't refer me for my dizziness until I've had my next blood test in 3months time.. I know this isn't my ferritin or folate levels doing this as they were normal when this started. Fast forward to this week and I have periods of relief from my dizziness but it's still there and still bothering me so I phoned my other GP who has agreed to see me this Monday coming and said its probably wise to check me over and refer me.. At long last! Wednesday this week I have come down with a cold virus and feel really poorly and today my dizziness is extreme. I can't move off my sofa as I swear I'm going to fall over.
I also noticed that this all started when I had my last bad cold/virus so I'm now thinking its perhaps Labyrinthitis.
Does this sound like it to any of you and symptoms similar?
I hate that when I get so dizzy it feels like I'm going to pass out at times. I've started feeling nauseous with it now.
Not sure how much more I can take!
I've basically been housebound for the last 5wks and I hate it & I have 5 children who I want to take out places but I can't. I'm a really get up and go type of person and hate being sat/lying around. To top it all off I think it's making my anxiety creep back in 😔
melina62750 xxKxxxxx
Posted
Hello k,
I also am having terrible dizziness and everything else and am still waiting to see the specialist, and now do not go out ,which it very deppresing
I cannot believe the time your dr. Has made you wait. . .
Have you heard of the website ? It is amazing . .
also there is a lady called Lara and she has her own Facebook page and blog at . If you contact her I know she will be able to help you . . She is brilliant are you in the uk ?
Best wishes ,
Melina.
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
xxKxxxxx melina62750
Posted
I am in the uk. Have finally got a referral to ENT today. Very glad as it's been a horrible 14months. Not sure how long the waiting list is until I phone this afternoon 🤔
melina62750 xxKxxxxx
Posted
Hello k,
sorry I hadent realised I can't write email address on here, can I private messege you with them ?
melina62750
Posted
also glad you've finally got your referral x
xxKxxxxx melina62750
Posted
Hi, yes that's fine to message me 🙂
melina62750 xxKxxxxx
Posted
Hello k ,
I'm sorry I can't seem to find the envelope to messege you the addresses.
Flowerdaisy melina62750
Posted
Hi
1st time on site. I'm a mom and my son is the patient. He has been sick for 5 years with many of the symptoms you have mentioned. He has not been able to work for at least 3 years now and his diagnosis is unilateral peripheral vestibular hypotension. It has been very lonely for him When he has a very short period of good health you would never b able to tell that he was sick. The weather and barometer seem to play a part in his chronic illness. He became sick after he got a cold and the symptoms of dizziness, vertigo, headaches, muscle fatigue etc. emerged and have never gone away. He seems to have developed all kinds of allergies to certain foods, grasses, trees, medicine and animals. He never had these before the onset of this horrible chronic illness. As a mom, I worry about him but don't know how I can help him. I mean I grocery shop for him when he is to sick to drive, take him for rides when he is too dizzy to drive, and whatever else he needs. Do you find the blogs are helpful? I thought mayb I could convince him to join one so that he could "talk " to others that are going through the same as him. It breaks my heart, he is so young and it is such a life changer. The doctors don't seem to think he will get better--that he will have to live with it. Thanks for anything you can suggest.
melina62750 Flowerdaisy
Posted
Hello flower daisy,
I'm abit slow with typing etc any screen tv ,computer phone etc,as dizzy . .
I really feel for you xx does your son have a diagnosis ?
I know how difficult it all is as people have to help me also .
Have you heard of Veda ? Vestibular.org I hope they don't take this out and I have to private messege you it . .if you haven't ,they are brilliant ,they. Can help you with everything ,
Has your son done any vestibular rehabilitation therapy ??
Melina xx
melina62750 Flowerdaisy
Posted
I definatley think he should join a group xx
Talking to others I would think would be a great help .
Melina
What type of dr.s have you been seen by ?
nikki1978 Flowerdaisy
Posted
Hello,
?Yes, please have your son join on of the groups. Also, on Facebook, there are many groups for people with these vestibular problems. I also have been suffering with this for five years now. Actually, this month marks 5.5 years for me. I became ill with this mess right after having a bad sinus infection. It's very difficult because I have a five year old little girl that I miss out on a lot of things because of how I'm feeling. I wish I could drive her to the mall and have a girls day out but I cannot drive there and malls make my head feel disoriented. Does your son feel disoriented in stores and malls also? I also get this scary feeling where I feel like I'm not with reality and it's extremely difficult to focus on anything. Does he get that too?
?Anyway, that groups on Facebook are "vestibular disorders support group" and another one is "vestibular neuritis illness and dizziness". I hope he can get better. Do you know the percentage of vestibular loss? That is found with the caloric testing.
Take care,
Nicole
biliarydyskines xxKxxxxx
Posted
xxKxxxxx cally_44573
Posted
Forgot to add that I get random pains in my ear, ringing, wooshing and a fullness feeling.
I have suffered from migraines for around 12years but since this has started they've actually not been as frequent or as bad ..
rebecca94014 cally_44573
Posted
I have been all over Florida looking for answers. I went to all kind of Drs, Tampa Balance Center, therapy for 6 weeks, two Drs at Cleveland Clinic & they told me I wasn’t going to find a different diagnosis so stop looking. It’s been 3 yrs & now & it’s getting worse. As of right now I have had a Vestibular migraine for 32 days & it is driving me crazy. Dizzy, nauseous, my head feels like it’s going to explode, tingles, my hair falls out & i’m Just wondering also if this ever gets better. I woke up one morning with my spinning 3 yrs ago & it took away everything I loved doing, hardly ever go out of the house anymore because i’m afraid of falling & it takes so long to get ready & I’m too dizzy to even bother. If anyone has ever been cured or gotten relief I would love to hear from you. Sorry for anyone going thru this.
If anyone has any answers, PLEASE post.
Terry6872737 rebecca94014
Posted
rebecca94014 Terry6872737
Posted
Yes Terry, they told me the Vestibular nerve was damaged, which as you know controls your balance. I had regular migraines for 43 years. They subsided for a few years & Dr said they just came back in another form, Vestibular migraine. They told me I probably had a head trauma when I was small, & that I did. I may have a few days where it lets up a little & gives me a little hope, but I always have the dizziness. I just can’t believe the way my head feels, my eyes hurt, light sensiness, my head just feels foggy & disoriented, rooms feel like they float. If I move around too much it really sets it off so try to stay as still as I can. Can’t lay down flat, I have been propped up on the couch for about 6 mos now, it spins more if I lay down. Feels like I’m going to vomit all the time, hard to ride in a car & see cars pass by, can’t look up at a ceiling fan. Everything that moves too much makes me nauseous. I have fallen off of a step ladder twice because I can’t tell I’m going backwards until it’s too late, so don’t get on them anymore. I can’t go to the grocery store anymore, sometime I go & ride the scooter, with help. Dr said the looking up & down with all the lighting makes it all worse. Sometimes it takes me 5 days of trying to get ready to go out, get too dizzy getting ready so just give it up.Was just hoping someone had gotten better, but guess the specialist at Cleveland Clinic was right, the nerve can’t be repaired, & there is no cure. Praying that it lets up at some point & gives me a break.
Good luck, not what I had planned for my retirement.
Terry6872737 rebecca94014
Posted
Cally doesn't monitor this forum anymore. I can tell you that she, like me, recovered to around 90% of where we were 3 years ago. I cannot believe that any doctor would so bluntly tell you that you cannot get better and offer you no hope. I have heard from some others that got similar treatment at the Cleveland clinic. What confuses me with the symptoms that you state is that you have spinning , vertigo, dizziness. Usually that is indicative or issues with the inner ear canals and not the vestibular nerve. From what I have researched the issue with the vestibular nerve is a lightheaded dizziness and a balance issue. That is what I experience. Spinning is usually associated with Meniere's or BPPV but, are short lived or associated with certain head movements. I have read that migraines can cause vertigo symptoms and sometimes thay can be continuous. Have they not tried any migraine medication to prevent them or to help break the cycle for you?
I would not give up. Have you considered the Mayo clinic in Jacksonville?
rebecca94014 Terry6872737
Posted
Thanks Terry, yes I checked with Jacksonville Mayo & they told me to go to Cleveland. I first went for vertigo because the spinning was when it first happened. They eliminated that through testing. The Balance Center in Tampa eliminated Menerie’s disease through testing. The Specialist at Cleveland told me there were not any drugs for vestibular migraine & recommended a compound if I could fine a pharmacy that made it. Did nothing for me but put sores on my tongue. Don’t actually have the spinning now just continued balance, foggy head, scalp tingling eyes bother me, feels like I’m floating around the room, & nausea problems. Family Dr has no answers, just started sending me from dr to Dr. Don’t know where to turn for help now. ... Thanks for commenting & any ideas are welcomed.
Terry6872737 rebecca94014
Posted