Vestibular Neuronitis gets better

Posted , 6 users are following.

Hi All, I've been diagnosed on April 20th. It was hell for 3 weeks... then I started Vestibular Therapy and acupuncture. I have also increased my Vitamins and started talking to someone about the anxiety related to the ongoing symptoms that is caused from the Vestibular weakness... we'll I have improved! It's a very slow road but if you told me a month ago today that I would go out for a 2 mile walk I would have thought you were crazy. Well I did, today and it felt great. Yes the last half mile I felt off but after coming home to relax it passed. I've be decided that the dizzy and the anxiety will not control me any longer. I'm taking control of my life. I guess this post is for all who are giving up hope like I felt not too long ago. I still have a ways to go..I haven't seen my friends yet and haven't gone back to work yet but that will come in a few weeks. Alot of it is mind over matter. And when I feel off and dizzy I talk to it...and do meditation. MEDITATION does work! !! So basically just do whatever you can to get by... eat better and drink water. I know VN is hell and the Vestibular weakness that comes with it. JUST DON'T GIVE UP!

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33 Replies

  • Posted

    What a wonderful and encouraging post.  I am working on the anxiety part myself.  After so many falls I have a real anxiety problem walking outside but gotta keep pushing.  Eat better and drink water is so very true.
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  • Posted

    I figured there are so many negative posts (and I have posted some of those) but I think when people are starting to get a little better that they forget to post the positive and that is even more important. People need to know that in some cases it does get better. I don't think I'll ever be what I used to be you know what it's gonna be okay. Life goes on and we have to adjust as best we can. smile
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    • Posted

      You are so right.  I had extreme vertigo for four months.  Any day I don't wake up with the room spinning is a good day.  I have learned a lot about myself and other people in the past three years of this journey.  So you do meditation - anything else for anxiety?  Mine only rises when I am by myself trying to walk, I use a cane and sometimes a walker but still, anxiety sometimes gets the better of me and I stop before I start.  Oddly, if I am at work or inside I am way better.  The mind is a weird thing!  I have tried acupuncture and love it, and currently using a chiropractor that has done me a lot of good as well.

       

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    • Posted

      I actually force myself to do meditation because my mind automatically fights against it. I YouTube guided "meditation for positivity with music".... it really does help.

      I'm not sure if the vitamins I started taking is helping but they say they do. I also just started Wellbutrin three days ago but that's more for the depression that started with this illness... but it takes about a month to kick in so I doubt that's helping yet.

      And finally the best anxiety medicine is talking to my mother, finace, Vestibular therapist and a friend who has another Vestibular disorder..I really think the support around you is the most important. Everytime I feel anxious I talk to one of them and it brings my anxiety wayyyy down.

      Keep going to acupuncture I think that's the key too!

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  • Posted

    Hi Stacy I'm glad you are getting better i've got a weak balance system in my left ear Flickr in my left eye I do not have the spinning Sensation just feel off balance just feel like I'm walking on sponges.I've had all the test done they all come back clear. Can I ask how did acupuncture help you I've been thinking about it Thank you
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    • Posted

      Hi! They put small pins on pressure points that are causing you trouble so he put pins on the balance centers of my body and also the anxiery points.. he also out some where fluid can build up. He then massages my head and around my ears to get the energy and fluid flowing. That is the main problem with Vestibular disorders..inflammation and fluid retention. Also overall it's the most relaxing therapy I have ever done.
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    • Posted

      Getting off of dairy and caffeine both helped a lot as well.  Dairy causes so much internal inflammation.  I will look up the You Tube meditation.  Thanks for the tip. 
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  • Posted

    Or cheese.
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    • Posted

      Dairy was a struggle for me and I had to try it several times before I could step away from it but it really did help me.  Dairy is full of casein which causes inflammation and that is no good for our kind.  It was pretty hard giving it up, not gonna lie!
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  • Posted

    I'm on week 7 of VN and I honestly believe anxiety plays a huge part. My husband was off work yesterday so home with me all day and I felt quite good. Today I'm on my own again and I can feel the symptoms stronger than yesterday but it's that anxiety of being alone. I see a chiropractor who is a huge help and I take a woman's multi. I also take St. John wort tablets for anxiety and it's helped me hugely. I'd rather go natural than medicate myself at the moment. I try to carry on as normal as possible and applaud yourself with ur achievements no matter how small. I found having a journal and writing small goals for the day has also helped me when I can tick them off! Feels good. Keep on going!!
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    • Posted

      Yes I journal as well. And on my bad days I look back to where I started.

      I may have over done it a little bit today. I was feeling great after my walk and now I feel off. I know next time I go for a walk not to do 2 miles... I should take it slow at first.. I want to push myself but I néed to do baby steps.

      Yes the anxiety really makes it worse.

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    • Posted

      You're right! And I had to do the vestibular exercises this morning that made me dizzy so I probably just over did it. I guess we all have to remember how far we have come and hope the next day is better than the day before smile
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    • Posted

      Yup need to take it slow :-) I'm back at work but have cut down on some of my jobs (I'm a house cleaner) and I also have three kids so I'm busy. But if I sit down I feel worse, moving and keeping the mind busy helps me. I guess it's teaching the brain to compensate. It's been the worst thing Iv ever had, I'm 28 years old and feel like I'm 80! But I think one day this will all be behind us and we will be the ones helping new patients on this site to see that it does infact get better :-)
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    • Posted

      Have no choice with the kids haha! I was driving after week two. Iv had two panic attacks in the car but I have to push thru or anxiety will ruin my life. I make myself do things that push me out of my comfort zone. I'd rather stay curled up in bed lol but the more I do things the better :-) u will!! How many weeks has it been for u!? Mine is 7 on Friday. Sadly where I live they won't refer me for VT until it's been 12 weeks but I think what I do anyway probably helps in some way
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    • Posted

      Today is week 6. Yes I think I started to drive after the third week. I live in New York so the insurance is different...the therapy is hard to do but there are exercises on you tube.
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    • Posted

      Oh cool New York! I'm in New Zealand! Our public health system is pretty good but it's a long wait to be seen. I started therapy off YouTube last week but stopped as I ended up in hospital for four days as they wanted to do more bloods and a CT scan. I could move my head around easily enough but when it came to balancing on one foot with my eyes closed I couldn't even do 1 second!
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    • Posted

      Wow!! So did anything come back from your tests?

      See my balance was only bad the first week now its pretty good it's just that I get dizzy and feel off like I've been hungover for 6 weeks. Different positions make me dizzy but they said it's vestibular weakness not bppv (I did have that but they corrected it) Sometimes I think they just don't know when it comes to the ear and brain...

      I definitely must have pushed myself way to much today with my walk and exercises cause I'm so off tonight... I guess my brain is working hard to compensate from today. .I hope smile tomorrow is another day...trying to stay positive!

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    • Posted

      Nope nothing! Which is good news but so hard when VN seems to be diagnosed by dismissing everything else first lol. Thankful it wasn't a brain tumour as I did start to worry! And I hate the anxiety! I was never an anxious person until this! I was the most laid back person ever :-(

      So what's vestibular weakness? I find if I lie on my left side I feel like I could spin out, so Iv been sleeping only on my left side, and I even hold my head slightly to the right! Odd! My daughters teacher has BPPV and I thought maybe I did too, but I don't think so now. I haven't been dizzy since the first attack (and then I had it 24/7 for the first week) but that's stopped now. Sometimes when I walk my legs feel shaky and the ground moves. Then it makes my heart feel funny and then I panic :-(

      Make sure u have a good sleep, ur brain will be working over time to compensate for how u feel but I think it's great u could do that big walk! Every thing u do will add to the bigger picture...full healing!

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    • Posted

      Vestibular weakness is from the VN. The VN is a virus on the Vestibular nerve... sometimes it causes Vestibular Weakness which is why we remain feeling dizzy or off...but our other good inner ear should compensate and we should feel fine. Sometimes the virus permanently damaged the nerve and thas when we feels off or dizzy and it doesn't get better..sometimes it still will through compensation as long as the good ear is still strong enough and the excersises help. That will only be found out through time. Which is what I'm going through I think.

      The doc can tell you if you have Bppv if you get the epley maneuver done.

      So funny cause I can't lay or sleep on my right side without being dizzy. But my pt (physical therapist) is working on that.

      I just feel like thre are so many unknowns. I feel a bit better than last night but still not great. But yesterday was overwheming.

      Wow New Zealand. I have a friend who lIves in Christ Church.

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    • Posted

      We WILL get better I believe that! The specialist in the hospital (tried) to reassure me of that and she said it can take a long time but Itl happen. Iv read that u can feel unsteady for 2-3 months after VN so maybe we r in that stage.

      Sounds like we have opposite ears haha! Mines the left but If I sleep that side I don't get dizzy I just feel unsteady if that makes sense?

      Focus on today, expect good days and bad but always remember how far u have come. I like to look at my positives, I'm driving again when I couldn't 4 weeks ago and I'm working even if it makes me feel off I still can do it :-)

      Christchurch is beautiful but very cold! I'm in Auckland :-)

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    • Posted

      I love talking to you about this..you're so positive that it gives me hope smile

      I called my ENT today to find out if the medication that I started will interfere with the compensation and he said no and it may help and that gave me relief... I started on Bupropion whicheck is an anti depressant that helps with anxiery too..so hopefully that works.

      Wow I can't believe that you can sleep on your bad side lol since my first vertigo attack 10 years ago I never sleep or lay on my right side....but my physical therapist is helping me with that.

      Yes we Will get better. Sometimes with feeling off most of the time it's hard to rememeber that this won't be forever.

      Do you ever feel like your not as present in your surroundings as you used to be before VN? It's like a disconnected feeling...so weird lol

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    • Posted

      I may go back to my GP and see if I can go on something for anxiety. I'm just worried il find it hard to come off the medication as I have one friend who is on meds for anxiety and every time she comes off it she can't handle life very well but then another friend just had anxiety for about 6 months and stopped her meds and she was fine, so I guess it depends. I think once we r feeling 100% again we will find the anxiety will sort itself out :-) Iv never been an anxious person before so I know i can beat it! Life is great, right! We are just going over a minor speed bump but it's going to teach us something, I always believe that! Maybe it will show us how strong we really are wink are u on Facebook? We could always connect there and then private message each other? Just an idea, but I think the support we get off each other is vital to our recovery :-)

      Yes sometimes I feel like I'm almost in a dream! My mind feels a lot slower too. And my legs sometimes feel weak but that could be the anxiety. Dam thing! I think it's worse than my VN at the moment! Was tempted to stay home all day today but nope! Going to work soon and this feeling WILL go away because il make it stop haha!

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    • Posted

      I had a really great tonight... I almost didn't go out to dinner but I made myself and had a good time with my fiancé and then we went to get him clothes...I came home and did my Vestibular exercises and still feel good!!

      Yes let's try to find each other on facebook.

      You can try to look me up under Stacy Tietjen. I think I have two accounts one I no longer use.. look for the pic of a girl and a guy in the profile pic..that's me. If u can find me Mayne I can find u lol smile

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    • Posted

      Woohoo!!! U went out and u had fun, remember that next time the anxiety comes back or u feel u can't do something! I phoned the doctors and have an appt for next week. Going to ask about jumping on loximine for the anxiety and see if it helps. I'm sure it's making everything worse for me so if I can calm myself down then il be sweet! Il have a look now for u :-)
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