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Anxiety and unsteadiness

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lisa215
lisa215

In December 2012 I was diagnosed with BPPV which shattered my world completely. I went from being a fit and healthy 42 year old woman to being a dizzy stress wreck over night. I saw my doctor who prescribed Betahistine and Stemitil but neither made a difference. I saw a locum who performed an Epley manouvre which stopped the rotational vertigo but left me with almost constant wooziness. I was refered to ENT in April and was told I had recovered from the BPPV and was ok and that the unsteadiness was due to anxiety. I will admit that I am truly terrified of this coming back and I do believe I have become over sensitive to my balance. But it is wrecking my life. Im very depressed, I keep crying and am constantly woozy when Im on my feet.. My doctor has given me anti depressants but im reluctant to take them as I was depressed for almost 15 years and took medication up until 4 years ago when I got myself off them and I dont really want to go back there. I guess Im asking for a bit of guidance from anyone who maybe has suffered from a health anxiety and who can relate to my symptoms. Thank you.

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  • lisa79712
    lisa79712

    Posted

    Hi there, another Lisa here! I have had BPPV 4 times and I also have health anxiety, so I know how you feel. Each episode of BPPV scares me as I think it will never get better. Each time I have been lucky to have the Epley manoeuvre from a doctor at my surgery which clears the vertigo almost straight away but leaves me with an off balance feeling for a while. But eventually I get completely back to normal and have been told that it would have resolved itself naturally anyway, but I hate to live with it, as I cannot work whilst I have it. Mine usually hits me when I wake so for a while after an episode I dread opening my eyes or turning my head when I wake, but gradually, with time, I forget about it and worry about another health issue instead! I also have M.S, gastritis, a hernia and various other health conditions and am a teriible hypochondriac!! I also have panic attacks but have managed to control these recently or at least to recognise them and sleep them off.

    I have tried hard to rationalise my life and phobias and all I can say to you is, you only get one life and when you read the stories of people with truly awful illnesses or disabilities who carry on cheerfully and with determination, it can really make you realise how lucky you actually are. I often think that I don't want to reach my final hours and think I have wasted so much of my life worrying about things that never happened, instead of living my life. I have read horrific stories of people who have had permanent violent vertigo and still continued to function and strive for solutions to their condition, which I find inspirational. It is also believed that living with vertigo will eventually stabilise as the brain compensates for the imbalance and counteracts the dizziness.

    My husband is the most laid back person you could meet and I envy him so much but I will never be like that and he can't understand my continous anxiety. I try not to concentrate on myself and try to keep my mind active on anything but myself. I realise that in the past I have listened to my body too much trying to forcast what Illness I will have next instead of waiting for my body to tell me when there is a problem.

    Try to relax and know you will get better in the end. Anxiety makes vertigo and balance problems worse due to the tension it causes in your neck and shoulders which consequently inhibits oxygen getting to the brain, which in turn makes you feel dizzy.

    Try to remember you are here only once, there is no second chance. For every negative thought replace it with a positive one, count your blessings and gradually you will begin to feel better. Good Luck.

    • laura48798
      laura48798 lisa79712

      Posted

      Hi Lisa

      That's the best advice I've heard in a long time! Thank you so much for your positivity x

    • lisa79712
      lisa79712 laura48798

      Posted

      Haha!  Positivity and me don't really go together! However, I do try to follow my own advice, as best I can. x

  • lisa215
    lisa215

    Posted

    Hi Lisa. Thank you so much for your reply. We sound very similar in that I watch my body constantly for the next health "instalment". I have wasted so much of my life worrying about things. I had some blood tests done this morning and Im a nervous wreck at the moment because Im convinced that they'll find something horrid. If Im truly honest with myself (and as a person with a health anxiety, thats a hard thing to do sometimes)! I think I am causing my dizziness because Ive become over sensitive to dizzy sensations. Its been all the more frightening for me because the BPPV was "real" and that threw me alot. Ive been so use to the doctor saying "its your nerves" that when they actually said that there was a genuine physical problem it sent my anxiety into overdrive and its spiralled every day since. My partner to is very laid back and he also cant understand my constant anxious state. He has to have a brain MRI and brain angiogram in a couple of weeks because of severe headaches and hes so relaxed about it while Im a nervous mess. But I guess we are what we are but we need, like you said, to get things into perspective. There are indeed people out there far worst off but far happier. Thank you again for your reply, Its nice to feel less isolated. Take good care. Lisa x
  • lisa79712
    lisa79712

    Posted

    Hi Lisa. Just one thing you may find relevant, I too still feel as if I am going giddy, when in fact I'm not. I too have become over aware of my balance and have discovered that if I see something moving out of the corner of my eye (I am 54 now and my nearsight has started to go), and I am not conscious of what it is, my brain will say hey! look out you are going dizzy again and start a small panic in me. But, if I stop and look around and find what it was moving, (it may be a shadow, or reflections etc), I am fine and can tell myself not to be so ridiculous, that my head is not going to spin, and can carry on as normal. This happens all of the time and I mean almost once a day, but now I know what's happening I am fine. I have also had one of these incidents and it has paniicked me and made me over aware of everything around me. I start to notice my every footstep and how everything around me bounces up and down when I walk. This would happen to everyone if they concentrated on it because it is actually what happens when we move but so that our brain can cope with movemnet it doesn't point it out to us. Only people like you and me have become super sensitive to it and notice it when we shouldn't and this becomes psychological vertigo because rather than a physical problem, as in the case of BPPV, it is all in the mind and therefore can be beaten!!! I may wake up with BPPV tomorrow and panic and hate it but i know it will get better and after the spinning phase and then the feeling wobbly/walking on a rope bridge phase, I know you will get completely back to normal. x
  • lisa215
    lisa215

    Posted

    Hi Lisa. What you describe is exactly how I feel. Its a corner of the eye movement that seems to send a cold shudder up the back of my head and then the panic feeling set in. And I feel when I walk like im bouncing and the floor is soft under my feet. I actually thougt that I was going made. Ive tried so hard to explain the sensations to doctors and family but it just sounds so silly. Its so good to hear from someone who knows exactly how it feels. x
  • geraldine67729
    geraldine67729 lisa215

    Posted

    Hi Lisa just read your text today and i have to say i was delighted to see someone else has what i have. I had very bad vertigo about 7 months ago and although it is gone, I still have a feeling of unsteadieness and i seem to be falling over things especiall my dogs. I am getting quite frustrated with it now as no one seems to understan what i am going through , Not even my doctor. Any more new ideas to try?

     

  • AnnF
    AnnF lisa215

    Posted

    Lisa215, Did you ask your ENT why they thought you had recovered from your BPPV? From my expereince and research most people who are diagnosed never really recover but just have periods with no issues. In fact studies have shown that people who expereince BPPV will have recurrances anywhere from 6 months ot 5 years after their frist eposide. I don't mean to scare cause I know your already worried but the the fact that the Epley worked before is a good sign because BPPV is treatable! I know what's its like to be worried about an illness coming back. That's how I am with mirgrines with cause me veritgo when I get them. I use to get them a lot in highschool and then around 18 they just stoped. But after 5 years without they came back. I don't get them as often...maybe 1-2 times a year but not knowing when it's going to hit can reck havick on the mind! You got to enjoy the days without. There is too much good in life to be focused on the "what if" Try to think postive and maybe you won't expereicnce as much anxiety and rest in knowing if your BPPV does come back there is treatment.

    Now on another note, I'm almost wondering if your not really having vertigo attacks but just not as strong. How are you doing lately? Any more dizziness? A word from expereicing the Epley will making you feel off balanced for awhile afterwards it is normal. In fact you usually will need to keep doing them for a few days until till the vertigo is completely gone. Hang in there! Your not alone in this feeling but there is always an answer out there.  

  • geraldine67729
    geraldine67729 lisa215

    Posted

    Hi Lisa thanks for the message, I was fine until about three weeks ago ,but when my sister in law passed away, i started to feel sick and light headed again. I have been attending a physio in the hospital for the last five months and she was pleased with me. My ears feel itchy all the time and when i lokk at certain things like the tv , etc i get a slight movemnet at the corner of my eye. I had a mri scan done about eight months ago and was told i was ok. It just feels like i am in a dream and i feel my legs are not lifting properly. I have a lot of stress on me this year with looking after my mother who is 83, the recession , my huband had a stroke (fine now) and now Jackie passing away. I am 52 myself and more then likley going through the change. This is so frightening. I read on a site somewhere, of a man that had a cure for it, He said for three days you had to drink about six litres of water a day preferbly with magnesium in it and it seemenly balances your ears out. I am trying it at the moment. I also run an animal rescue and feel terriible if i miss any days in the shelter and shop as i feel i am letting the Animals down. Lisa thank you for helping me out i really appricate it and feel better someone understands what i am talking about. xxx
    • Wendl
      Wendl geraldine67729

      Posted

      I have just found this site  and cannot believe that my symptoms are ALL the same as yours.I makes me feel better to know that there are others who understand these dreadful  feelings,as not many GPs seem to take this condition seriously.

      I live in a constant state of fear that I am about to collapse,and living alone with no family around me makes it all much worse.It is so debilitating.

      I find it very difficult to look forward to anything or to socialise as I used to.

      The fact that I don't look ill makes it very difficult for friends to believe that I feel so dreadful and they just do not understand.

    • bonnie21356
      bonnie21356 geraldine67729

      Posted

      Hello Geraldine,

      I came to this site due to extreem fear of going to the doctor. I have read all of the posts on here, and am quite amazed to see so many feeling the way I do. The walking issues, the off balance issues, the anxiety issues, and the vertigo. First I want you to know that the first time I was diagnosed with vertigo, was when my Grandmother, that was like a mother, passed away. I walked around like a drunk person for about 6 months. Then it stopped. The anxiety I will probably always have. I take Xanax daily. But with anxiety comes the feeling of being off balance, like the floor dropped out from under you when you are doing dishes just standing, and the lack of coordination in the mornings. Everyone knows it takes me an hour just to get out of bed. Stress, rushing, not eating on time, all will cause more anxiety. I hope you have found some relief since your post was months ago, and I just found it. It does help to see that I am not crazy, and that others are going through the same things. Although I would not wish this on anyone. It is like a self made prison. Hugs to all

    • josie07658
      josie07658 bonnie21356

      Posted

      Hi i have just read your comment i feel so much the same as you, i also have had loads to deal with in the last few years unfortunately i  suffer a lot from anxiety, which  makes it harder for me. The one think i have  which i find hard to cope with this feeling dizzy, my husband thinks i am an hypercondric.  I have had to go on prozac as i need to be strong for my sisters who have the  BR2 cancer gene. I have also lost another and another is fighting it,  but taking this med is i think making me feel  dizzy. i have only taking 2 but the side affecks start right away they wont work for 2 weeks i hope i can cope with that you are so right it is like being in a prison. take care Josie X
  • dragon1004
    dragon1004 lisa215

    Posted

    Hi all. In short, symptom-wise, BPPV and labyrinthitis are very similar. I wonder whether some of you have had labyrinthitis, which I believe leaves you susceptible to BPPV! See my post on "brain shifts" https://patient.info/forums/discuss/labyrinthitis-brain-shifts--36491?page=0#486742 and this wonderful website for info on labyrinthitis which has not compensated properly :0)

    http://www.labyrinthitis.org.uk/index.htm

    Emis Moderator comment: I added a direct link to the other discussion, let me know if incorrect. Users can add links to any other discussions in the forums when posting and they will not go for moderation. This is quicker than trying to direct users to other discussions. Hope this helps. Alan

     

  • joanne38942
    joanne38942 lisa215

    Posted

    Hi, I have been diagnosed just today with BPPV.  I have many episodes over a 6 year  period of undiagnosed conditions. The first of which put me in hospital for 7days, after collapsing with severe dizziness, speech sticking, a very unsteady gait which lead to not being able to walk at all.  I saw a number of neurologist over the year. Diagnosis was a severe functional disturbance of the central nervous system that could have been caused by a virus, and migraine or an allergical reaction.  It took me 6 weeks to walk again normally, I was told it probably wouldn't happen again.  It happened 7 more times over the next year.  Each was less intense, so it eventually settled, whatever it was.  I have had a number of milder episodes lasting just a couple of hours to maybe a day up until 2 weeks ago when I collapsed in my GPs waiting room and went back into hospital diagnosed with Labyrinthitis.  When I came out my unstable walking became gradually worse once again.  My GP was concerned about this and referred me to a neurologist who I saw today 
  • joanne38942
    joanne38942 lisa215

    Posted

    Sorry my post sent before I'd finished.  My concern and query out there to anyone with BPPV is do you have the same walking problems.  I'm currently only able to outside with either a wheelchair or a walking stick.  I'm not too bad without in the house.  But meeting people and being in unfamiliar surroundings make me a lot worse, so anxiety seems to make my walking worse.  I bounce uncontrollably when walking from the trunk down through both legs. This is currently also happening if I don't rest and nap through the day or get enough sleep at night.  I'm also taking Prochlorperazine which I'm trying to reduce and come off altogether. Vestibular physio is being booked.  But when I read about BPPV there is nothing evident about problems walking and after having left the neuro tonight finally welling relieved I have a diagnosis and cause at last that fits what has been happening to me over the last 6 years.  I'm now concerned it might not be because I can't see any reference to the problems walking when I read articles about BPPV.  Yes I'm dizzy and sick, but for me the biggest issue is the intermittent ability to walk normally or walk at all sometimes.  Does anyone else have this please? The Dr I saw tonight saw the difficululties I have walking before making his diagnosis.  But I don't understand why the medical notes on BPPV online don't reference this or am I missing it somewhere.  
    • dana91816
      dana91816 joanne38942

      Posted

      Hi Joanne,

      Finally I find someone's condition that so closely resembles mine that it's uncanny. Particularly yours is the first where mention is made of 'bouncing' when walking. This falls on deaf ears when mention of this is made to professionals. The only time the bouncing stops is when I lay down.

      Like you it started out as a trip to the hospital after a severe dizzy spell where I had no balance and falling to one side. I had a constant pressure in my head which lasted approx 2 months. I had scans carried-out at the hospital with no evidence of any abnormality. All that helped with the initial visit was a 25mg injection of Prochlorperazine. This however provided only temporary relief. After this I remained isolated in bed at home for 3 weeks without being able to walk.

      Gradually the symptoms subsided to the point where I could walk again but again rather spontaneously they would return where I feel like I am bouncing like being on springs as I walk. I cannot stand on one spot. I feel worse if I walk on carpet. I feel like I have no control over my legs and feet in terms of direction. 

      The absolute worst is when I get out of car as it feels I've stepped off a boat. I also sway from side to side when the episodes are at their worst. Presently I need a walking stick for mobility and security. I am afraid to venture too far from my home from fear of falling.

      I have had extensive visits to vestibular clinics, vestibular physiotherapists, neurologists, chiropractors and multiple brain and body imaging. I at present have no formal diagnosis and as to be expected am beside myself with anxiety and depression.

      I am taking Clonazepam 2mg twice daily which was prescribed by one of the neurologists which is only mildly effective. I have tried anti-epileptics like Dilantin and Topamax. I was also taking Prochlorperazine but again this was mildly effective. Most professionals now see it as being in my head rather than a somatic condition.

      i find it therapeutic that someone else finally has symptoms that closely overlap mine. Again I make mention of the severe bouncing as I walk. Apart from you Joanne, I've heard of nobody that experiences this suffering from vestibular condition.

       

    • AnnF
      AnnF joanne38942

      Posted

      Joanne, how did your doctor’s first diagnose you with BPPV? The dizziness over the past 6 years sounds a lot like what most people who have acute bppv go through. If your doctor diagnosed you properly including using different head maneuvers then it just very well may be your problem. I'm not an expert but I've learned over the years that not everyone will have text book symptoms. How long have you had trouble walking? It is possible with age your balance is being more and more affected by your vertigo making it difficult to walk without something to balance you. I would continue talking with your doctor about your concern. I would also inquire about your version and hearing or loose rock crystals (which is the main cause for bppv) . All of these can affect your balance. Also take a look at this article. You may find it help? http://vestibular.org/node/10 Hope you find the answers you’re looking for! 
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