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Dizziness that wont improve even with VRT

Posted , 8 users are following.

andrea75485
andrea75485

Hello,

I am first time poster. I am in the US but this forum comes up a lot in google searches. I came back from Hawaii on May 5th and was dizzy. I went to my doctor with an excema outbreak and he put me on predisone. Mentioned the dizziness to him and he said the predisone might help and my dizziness wasnt that bad. It went away but came back on May 23rd. I went to an ENT, he referred nme for balance testing. I had Vestibular Neurtis in right ear, and it was uncompensated by 21%. She referred me to VRT. Before that I ended up in the ER on June 24th and then started VRT on the 25th. We went to Disneyland July 5 to 15th. Surprisingly the smaller rides did not bother me at all, it actually felt better. After we got back I fell into bed and stayed there. I could not sleep, eat, or do anything. He gave me Lorazpam and that was pretty bad. Full on anxiety happened too. I would wake up and have to sit on the edge of bed squeezing a pillow. I ahve been doing VRT since July 18th. They released me Sept. 27th. I did not want them too. I have been always doing my excersises. So I feel I am worse. I try to stay active but it is a struggle. I really dont know what to do. I thought the excersises were working but now I am not sure. I am out of bed but want the dizziness to go away. Any advice??? Thank you.

0 likes, 16 replies

16 Replies

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  • lily08036
    lily08036 andrea75485

    Posted

    Hi Andrea 

    Sorry to about your troubles. I wish there was something I can say to make you feel better. We are all suffering the same thing here. I'm constantly swaying and it comes with a headache that lasts all day and night, the swaying is 24/7 no lie. Drs try to give me anti depressants but I refuse to believe that's the cause. Keep working with the Drs...even if you need to change Drs , do it, I have ...many times. They all give me the same answer though. Frustrating !  Hope you feel some relief 

    • andrea75485
      andrea75485 lily08036

      Posted

      Thank you Lily for your response. Thank you for sharing your sypmtoms. I foruntaley have only had two headaches in this whole process. Your headaches sound awful and the constant swaying sounds awful too. You are very strong to keep managing through it.  I don't blame you for changing docs. Not sure where you are but have you done the whole MRI or CT scan thing? You think with the headaches the doctors would clue in on that. I wish you the best, please keep us posted.
    • lily08036
      lily08036 andrea75485

      Posted

      I've ct scans , MRIs , ENTs , ERs ... You name it. Blood work ...don't know how many times. Chiropractor , but that started getting expensive.  Just now my heart is racing and I feeling lightheaded. I don't know why this happens ...I can't even relax. Trying to take deep breaths but it's still racing. I get anxiety ...ugh. Hope your dr can help on your next visit 
  • cody45367
    cody45367 andrea75485

    Posted

    Hey Andrea,

    NO worries! My name is Cody and I am also from the US. What you have to realize is that this is a long game. It is going to take time and patience to fully recover. I'm sure we can all agree that we have good days and bad days - and by the sounds of it, you're going through some bad days. It will get better, I promise!

    What I do is record a journal everyday. I mark the level of dizziness/anxiety I have and record any other daily activities I've done that day. It helps me find patterns in what works and what doesn't work. I would recommend you do the same.

    Personally, what I find really helps me is to walk around every hour for 5-10 minutes. Fixate your eyes on an object in the distance and slowly move your head around while fixated on the object. It helps to retrain your brain and balance. It also helps reduce your anxiety about the situation ( what I had the most issues with).

    Don't give up, it will get better, I promise!

    • andrea75485
      andrea75485 cody45367

      Posted

      Thank you Cody. It is so nice to see all the replies. With this dizziness you think one minute you are better and then the next minute you do something and the dizziness is still there. I think I need to look at the whole picture. I like your journal idea. I was kind of doing that with my PT every week. I would tell her what made me dizzy and she would introduce a new excersise. I still had coverage with my insurance for more visits. I made an appt for later. I can still go without seeing the ENT again. I will start a journal then I will have something to report and the PT appt. later this month. I will try walking while fixed on an object and see how that goes. Thank you very much for your help. It is comforting to know that people understand how you feel.
  • Babz36
    Babz36 andrea75485

    Posted

    Hey Hunnie I'm in the UK. I started with dizziness in March and have only just seen ENT. I'm a lot better than I was but I still suffer with wooziness, bad headaches and extreme fatigue. Keep doing the exercises at home and I promise you will get better. Keep as active as you can, eat regularly and rest lots. You will see an improvement xxx
    • andrea75485
      andrea75485 Babz36

      Posted

      Babz36,

      I have realtives in the UK. I studied there in college in 1992. I loved England and will go back someday when I get better. So sorry about the headaches, I have not had those. I am going to keep up with the exercises. Thanks for your kind words of support.

       

  • gillian76726
    gillian76726 andrea75485

    Posted

    Hi Andrea I won't, repeat what others have said, but head over to the VEDA website, in US. They are great,also  have a facebook page. And they have support groups there so depending on where you,live you may luck,out and find one near you get lots,of good practical advice on there and suggestions of other websites to look at as you will find with this problem you need to educate yourself on it and not rely,on gp, ent,s too much, although you need them, they are somewhat limited l in their knowledge and you have to ,sugges stuff as I learned after the first

    two years sitting back and allowing them to,push me from pillar to post without any result.  Good luck

     

  • crystal29909
    crystal29909 andrea75485

    Posted

    Hi Andrea,  I'm from the U.S. As well and have been dealing with labrythitis since June 3rd,  I had every test imaginable done and the ENT said my right ear was uncompensated by 67%.  Like you I had been doing the VRT regularly and I did get better but after awhile it didn't seem it worked anymore. I'm not nearly as dizzy as I was in the beginning. I was hospitalized for 3 days in the first week. However I still suffer from mild dizziness, some days are better than others. Get lots of sleep, try not to stress out and keep active. I try very hard not to think about my dizziness , when I do It seems it makes it more severe. It's horrible I know especially when physically you look healthy. I'm 40 yrs old and normally quite athletic but this summer I have gained 5 lbs and lost muscle tone from not being able to go biking or play tennis or anything fun because of dizziness. Its hard to believe that one ear being off can literally put your life in a tailspin.
  • brenda71967
    brenda71967 andrea75485

    Posted

    Hi Andrea,

    I am so sorry to hear you are suffering because it is NO FUN I know first hand.My problems started 5 months after I had a Hysterectomy.  I too did Vestibular Therapy. My therapists noticed that after 3 weeks I was not responding at all. He said that he should be some kind of improvement in that time so he sent me back to my ENT who had NO ANSWERS. He told me to keep doing the therapy and then released me as his patient-what a wonderful Doctor, right? That has been my story for a year, doctor after doctor. It is a struggle for me to be typing this to you right now so I know how bad it is. My vision and ears are all out of whack. Ringing in the ears, fullness and when I move my head just slightly from one side to the other, I go into a dizzy spell. My vision in my left eye has changed and is blurry and my letters are on top of each other. No answers from the eye drs either, just try to wear some glasses, which has not helped either. My anxiety is out of control. I have that "weird senstion" in my head like you were just scared or your standing on the edge of a cliff. My heart beats out of my chest and I am always trying to take deep breaths.  I wish I had better news to tell you because I want the same news but unfortunately, my days are as bad as yours it seems and has been for a year now. If you find that anything is helping you cope, please share. Wish you better GOOD days than bad. Keep in touch, you aren't alone.

    • crystal29909
      crystal29909 brenda71967

      Posted

      Hi Brenda, I hope you feel better soon, Its a horrible feeling. I found it interesting that you said your vision in your left eye wasn't right. By any chance is it your left ear that was affected? I ask because my right ear is my problem and about a week after the dizziness began was when I really noticed that my right eye seems a lot weaker. I haven't seen an eye dr. Yet but when I cover each eye individually I can still see the same its just viewing together the right seems weaker. Sometimes I wonder if it's more of a pinched nerve in the neck causing all my problems, though every dr. Has told me no. Roughly 2 minutes before my dizziness began I had a warm sensation run up the right side of my neck. And the day before I played tennis and threw out my right shoulder. It seems too coincidental but all the drs. I've seen had said no it's just that.. A coincidence. I hope you can get some answers. And thanks, I hope you have better days as well. 
    • brenda71967
      brenda71967 crystal29909

      Posted

      Hi Crystal.the Drs tell me that it's my left ear that has the balance issue but it's my right ear that has all the pressure in it, but they both ring loudly. It's my left eye that is having trouble keeping up now. I have bad neck problems and I have a shock sensation when you touch my right shoulder and neck. The Drs said it wouldn't be a pinched nerve but i feel like it could be. Where to now, I have tons of dr bills piled up 😫
    • gillian76726
      gillian76726 crystal29909

      Posted

      Hi, I have got the ,eye, probem with all this and it turns out it is common as your eyes are part of your balance system.  I pushed for an appointment at Moorfields in London as I have had Iritis in the past and was worried about that maybe coming back, but like my vision was normal in that way and they found no problems.  But you need to stress this with you ENTpeople as they know very well that the eyes will be over working to keep your balance/equilibrium all going.  I am now at the point that I cannot read a book, newspaper (the latter for only half an hour) or even use the computer, without feeling nauseous. And if I overdo it, I will pay for it later in the day. But all those VRT exercises with the eyes didn't work.  so I am waiting for my appointment in early Dec at the Neurohospital to see what they say.  I,also got/get neck pain and again I think your Dr is right about the pinched nerve. I thought that too. However your neck,will probably be affected as we are not aware of how much we are constantly tightening muscles to compensate for our balance.  there,s a good book called 'The Trigger Point Therapy Workbook' by Clair Davies. It is very good and I often use it to relieve muscle tension problems.  It is basically about areas that trigger the pain elsewhere, generally,close to the one that,s painful and how to massage them.  there are,ones even in the back,of your mouth!
    • brenda71967
      brenda71967 gillian76726

      Posted

      Thank you Gillian,I'm will look that book up , my neck really hurts and is so tense and tight 
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