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Ideas for self help with BPPV

Posted , 12 users are following.

Jac27
Jac27

Hello,

Have just come back from dioctor who has signed me off for a month because of my continuing vertigo which he says is BPPV. (have has symptoms since November). Being signed off for such a lenght of time has, I have to say, taken the wind out of my sails a bit.  When I aked if there was anything I could do to help with the symptoms he said to continue the exercises I was given following Epley treatment and continue taking the medication (Stemitol). Otherwise nothing but wait it out. I've had a CT scan and have been referred for physio and to an audilogist but I was just wondering if anyone out there has found ways that seemed to alliviate their symptoms or are happy to share their ways of coping. I find I'm able to do very litte at the moment without feeling dizzy and cannot walk at a normal pace or operate at a normal level for everyday activities. Sometimes I get dizzy even just sitting.

Thanks in advance smile

0 likes, 91 replies

91 Replies

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  • Pupsicle
    Pupsicle Jac27

    Posted

    There is a maneuver that works the same way as the Epley Maneuver, but you do it yourself, no other person needed. Look it up on Google, as there are videos that show how to do it and it is rather simple, basically you start in a position like you are going to do a somersault, and you come up to normal head position in stages. Obviously, like the Epley, this only works for BPPV, not vertigo that is caused by something other than the crystals in the ears.
    • Jac27
      Jac27 Pupsicle

      Posted

      Sounds similiar to the exercises my doctor gave me. Thank you, I'll compare them.
  • Gilly_flower
    Gilly_flower Jac27

    Posted

    Have you tried the somersault 
    • Jac27
      Jac27 Gilly_flower

      Posted

      Not familiar with that one. The exercises I've been given consist of turning head and holding for 30 secs. May get different ones once I see physio, whenever that might be!
  • Gilly_flower
    Gilly_flower Jac27

    Posted

    The exsersises you do , are you lieing down when you do them , or sat up moving your head , 
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      The exercises that I do with turning my head back and forth and up and down I do sitting up in a chair.
    • Jac27
      Jac27 Gilly_flower

      Posted

      I do them laying down, they're similar to the epley manouver my Dr did but my head stays on the bed.
  • kathie37110
    kathie37110 Jac27

    Posted

    I am worse if I take in too much sugar or get too tired.  Also, even dizzy I try to stay moving (carefully) - worse when I just sit.  I work in an office and fortunately have people that look out for me.
  • Gilly_flower
    Gilly_flower Jac27

    Posted

    Can anyone tell me , if they felt worse after eppley manervar , I had it Wednesday , today I'm really bad , can't move my head in any direction 
    • Jac27
      Jac27 Gilly_flower

      Posted

      Yes I felt worse after having it. My doctor tells me that's quite normal and it can take up to 2 weeks to begin to feel the benefit. I thonk this is one of the reasons he signed me off, as he said he may have to do it again. I had it just over 2 weeks ago and have to do exercises 3 times a day, similar to the manouver itself. Still having good and bad days though! 
    • Kikili
      Kikili Gilly_flower

      Posted

      I had three epley's.  Threw up for hours after the first one (was not allowed any meds that day).  For the next session  i took dramamine, valium and anti nausea meds, so no puking.  Didn't feel bad that evening, but the next day I could barely get out of bed.  I needed my husband to help me walk to the bathroom. Took over a week to start to feel normal again. After my 3rd epley I slept in a recliner for two nights (some doctors recommend this), which I think helped a little. in the offce after the third one,it felt like I had a mini seizire.  It was like an shockwave ran throug my body,and my whole body convulsed for a few seconds.  I haven't been back again (told it could take up to 8 sessions). I just can't put my body through that again.
  • Gilly_flower
    Gilly_flower Jac27

    Posted

    Thankyou , I'm really bad today , can't move my head at all , what excersises are you doing at home , 
    • Jac27
      Jac27 Gilly_flower

      Posted

      Similar to what dr did. Lay on bed and turn head different angles and hold each for 30 seconds. Do this 3times a day.
  • Gilly_flower
    Gilly_flower Jac27

    Posted

    I got to have it again on Friday , 
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      I think the first time I had it I threw up and then went to bed into a deep sleep for about five hours.  I also had to sleep on my left side for five nights.  This was so important to the doctor that my husband and I switched sides of the bed and he slept close enough I couldn't roll over in my sleep.  I think I had a total of three sessions for the maneuver. Remember with these moves you are kind of shaking up the insides of your head, literally.  Takes it awhile to settle down.  My particular problem at the time was ear crystals.
    • Gilly_flower
      Gilly_flower kathie37110

      Posted

      That's what there saying I got , is the crystals ,I'm just worried I feel so bad today , been told that the eppley normally works straight away , was suppose to be looking after my little granddaughter today , but just couldn't as I can't move my head , worse bending over 
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      It really is a violent dislocation of the inside of your head.  I wish I could tell you different but for me it took awhile for things to settle back into place, however it did ultimately get rid of my extreme vertigo.  Just take it easy today and don't try to push yourself too much.

       

    • Gilly_flower
      Gilly_flower kathie37110

      Posted

      Thank you ,it's very kind of you to get back to me , this is a horrible illness , and it's nice to talk to some one that understands , 
    • Gilly_flower
      Gilly_flower

      Posted

      I find I get such a lot odd advice from people about what to do ,like try to carry on as normal , easy for them to say when they have not had the experience of bppv 
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      This is seriously something you can't explain to someone until they get a small dose of it.  I had a friend tell me that she had vertigo for one day and all she could think about was how amazing I was to have dealt with it for three years.  And since then she has mentioned it several times.  But she had to get a small taste of it to realize the severity.  I am so glad to have found this group.  Unlike some groups I have had on FB where people seem to crave attention and pity and a magic pill, this group really seeks out answers to get better and help each other.  I appreciate every one of you.

       

    • gillian76726
      gillian76726 Gilly_flower

      Posted

      Ys and what's more,most that just don't get it think,that it cannot be that bad becaus how could anyone put up,with it day in day out, for months oryears on  end,,so we must be exaggerating!!  Well we do because we have no choice right!!
    • Gilly_flower
      Gilly_flower kathie37110

      Posted

      Hi Katie , as you know I had the eppley last week, well had a bad weekend , so rang my own doctor today , she refuses to believe it can be worse after , and now saying it's all anxiety , put me on some tablets to help , well when I got them , there for bipolar and mental disorders , also says they can give you severe dizziness and makes you drowsy , that s the last thing I want , so rang back , said I wasn't going to take them , she know way can bppv last this long and stop you from working , I wish I could give it to her for a day , 
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      The most anxiety inducing thing is to have a doctor that doesn't get it and tries to brush it off as anxiety.  I'm sorry sad
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      hi Gilly, that is terrible!! Yes i know about those type of medications, the ENT guy tried to put,me on them too, when i read the  side effects,,dizzy etc etc. I eamiled him (Was lucky I happened,to have an email,address fr his  secretary, but  what,i,did was saying took,one and felt so,terrible, and got an email back,saying to,stop,them. Immediately!). I Had in fact experienced this on  a previous med, so is this time decided not,to,take it, but tell them Imhad, it got me a better result!!  i presume you are talking about a gp!  she is not trained to know that BPPV 'cant last this long' so how can she sat that?  Only a full trained consultant in vestibular problems can as ertain this, so,if,i were you i would  see a different dr in the practice, ask for a  referral to, at the very least,,an ENT (You can progress from there after younhave got your foot in the  door).  meanwhile look up BPPV via VEDA, find agood print   out on description, symptoms, length of time it can last (Years !)! And take,it with you to next gp,appointment.!
    • Gilly_flower
      Gilly_flower gillian76726

      Posted

      Yes talking about my GP , seen another one as well , but they stick together ,I just don't know what to do , 
    • Gilly_flower
      Gilly_flower gillian76726

      Posted

      Audiologist , he's sure it's bppv , both sides but worse on my right , I told this to my doctor today , she will have it , if it was bppv , one eppley would cure it , so there for it must be due to anxiety causeing it , 
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      Okay,,so,get in touch with the audilogst directlyo as i did. Presume heor she  isnbased  at a hospital? Either call the hospital and ask,for the secretary. Ask,her if you can leave a message for him or her.  Say you are  having bad problems and your gp wont listen,,or,words,to,that effect, you desperately need help.   Usually when you see a consultant on the NHS Theynhave to,sign you off before sending you back you back to gp, and if you have only  had one or,two,visits,you are  entitled to more, at least until,you have stabilised ', which,u obviously havent.  Gps bank on people not doing this, but they cannot stop you from contacting the consultant directly.  It is your health ,your body,so dont  be intimidated by a stupid gp.  I Usually call the main number of the hospital and just ask for Dr so an so's secretary in... As  your case,  Audiology. 
    • gillian76726
      gillian76726

      Posted

      P.s. If  you get  the secretary, use words like, "symptoms", 'incapacitated, nauseous, (Dont mention anxiety and dont sound like you are, ha ha) up"unable,to function",that kind of thing okay?
    • kathie37110
      kathie37110 Gilly_flower

      Posted

      The most important thing I have learned (and it took me a full three years to learn it) is that you have to be pro-active about your health and you are the only one that really knows how you feel.  Don't let a doctor bully you or make you second guess yourself or make you feel like you are making something out of nothing.
    • gillian76726
      gillian76726 kathie37110

      Posted

      Absolutely right Kathie. I wasted the first few years learning this,relying  on the doctors  to do the right thing. But its not like,that amy more, we have to be pro active as younsay, research and learn about our conditoon, and know when to say NO to drugs that either mask or  make it worse. I've also learned that consultants dont always have a lot,of respect for gps, usually  ones who interfere with their diagnosis.  
    • Jac27
      Jac27 Gilly_flower

      Posted

      Oh Gilly you poor thing. I think I'm lucky that one of the dr. at my surgery is actually an ENT specialist -he heads the local GP group for it, so I obviously have someone who is more sympathitic and understands. He told me sometimes epley needs to be repeated and that it can last for months and even when it goes it can return, although this is often just short term (a day or 2). He showed me a model of the ear and explained how epley and the exercises I do help move the crystals back in place. After having quite a good, but not overly busy weekend I had a bad day yesterday and was very dizzy, holding walls while walking round and did hardly anything! I am taking bethahistine as sometimes I feel really sick and I think they do help me but don't want to depend on tablets but not brave enough to do without them yet as I want to get back to work. Gillian is right, research is key and it's different for everyone. I have cut down on caffine which was suggested by someone on here and do feel that has helped. Now I want to get confidence back for going out, very wary of going out atm because of feeling dizzy.

      Hope things improve for you Gilly x

    • Kikili
      Kikili Gilly_flower

      Posted

      Some lucky people have their bbpv fixed in one session.  I have had 3, but my issues continue.  My vestibular therapist said it can take up to 8 sessions to move the crystals in some people.  
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