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Explaining vertigo/BPPV to others (it’s frustrating)

Posted , 3 users are following.

Mmbb10
Mmbb10

Does anyone else get frustrated in explaining vertigo to family and friends since they’ve never experienced it before??

I’ve had 3 episodes of vertigo (twice in 2016 and once in 2017). No one I know understands how traumatizing having vertigo is. And I get so mad trying to explain it to them. And they don’t get how terrified I am of having another attack again. So I’m always extra cautious and careful.

I explain to them that the vertigo occurs when I’m in bed and I turn to the side during the night. 

Then I realize EVERYONE tosses and turns during the night and they don’t get vertigo.

So why did *I* get vertigo when I turned to the side during the night while sleeping???! WHY ME!?!!

That’s the one thing I don’t get!  Am I just unlucky?? 

My family asks why don’t they get vertigo during the night when tossing and turning and I have no explanation for them...I just tell them that I’m unlucky.

I understand that the ear crystals got loose and moved around while turning in bed which causes the vertigo. But why did this happen to ME?  I had no sickness/issues prior to this happening.

Also, I’m terrified of going on trips now since flying/driving on long road trips can cause unbalanced feelings and equilibrium issues. (I’ve read about this on vestibular.org). 

I’ve learned about compensation and decompensation on there too. And I’m terrified of taking a long trip cause it might cause decompensation and I’ll feel unbalanced all over again. I declined taking a road trip with family because of this. I told them I’ll never go on a trip ever again.

After my 3rd vertigo attack in 2017, it took me like 6 months to feel “normal” again because during the 6 months I felt unbalanced, disoriented,  etc. I believe during that time my brain was trying to adjust itself and fix itself (compensate). So it caused all those weird feelings.

Decompensation can occur from taking a long road trip so I’m scared of that happening. I explained this to my family but they don’t seem to understand.

0 likes, 12 replies

12 Replies

  • kelly84510
    kelly84510 Mmbb10

    Posted

     I would definitely look into VRT.. you may need to retrain your brain to work with your eye's and ear's again...sometimes after a vestibular event, your vertigo can change its called PPPD... anxiety and depression are huge with this.. it's not the cause, but it's definitely a side effect... hope this helps... vertigo life!

    • Mmbb10
      Mmbb10 kelly84510

      Posted

      Would VRT help re-train my eyes to not see my eye floaters then? A couple weeks after having my 3rd vertigo attack in 2017, I started to see my eye floaters. I went to eye doctors and retina doctors about it and they said my eyes are very healthy and everything is normal.

      After doing research about this, I’ve come to the conclusion that some how the vertigo triggered something in my brain which caused me to see the floaters in my eyes especially when I look at a plain wall or up in the sky.

  • chris89703
    chris89703 Mmbb10

    Posted

    Kelly is right. VRT can help to retrain your brain to compensate. An audiologist can give you a VNG test that might help. The biggest problem with the vertigo often is friends, family, and docs that don’t understand what’s occurring. It can be devastating to the person that’s suffering from it, as not only are they suffering from the condition, but having to cope with others not understanding as well. Basically your brain is receiving improper signals and then goes into a fight or flight response which causes brain anxiety. It’s different than someone who suffers from normal anxiety.  So, the anxiety is not the cause of the issues you’re having. It’s the result of the issues you’re having, as previous post mentioned. 
    • Mmbb10
      Mmbb10 chris89703

      Posted

      I don’t think I’ll be able to go to VRT because my situation isn’t severe enough. I’m still able to work and drive, etc. Plus I’ll probably need a referral from my primary to do it and they’re no help because they didn’t understand I had vertigo. They thought it was a heart issue but that turned out negative.

      So that’s why I’ve been researching all myself.

      If I don’t do VRT, does that mean my brain is damaged for the rest of my life,

      Does that mean I can’t go on trips ever again because it might cause decompensation?

    • kelly84510
      kelly84510 Mmbb10

      Posted

      You can find VRT exercises on YouTube.. I will suggest maybe getting a balance board... you may find it worse at first... so baby steps .. it can take a few months...no I don't think it will be damaged... but you will have a lot of anxiety.....

  • Mmbb10
    Mmbb10

    Posted

    Another question...

    I’ve been trying to research about flying and vertigo and I came across this statement: “Changes in air pressure – These are main triggers of vertigo, particularly when you are travelling by air”

    Can someone please fully explain how air pressure can trigger vertigo on a plane? Can changes in air pressure in planes somehow move the crystals in the inner ear around causing vertigo?

    • chris89703
      chris89703 Mmbb10

      Posted

      Guess it might be determined by how bad the condition is but it’s absolutely affected greatly by increased air pressure.  Unsure if bppv allows for air travel. Personally mine is severe and permanent inner ear damage, not bppv(crystals) So, when I approached the doctor about traveling in a plane he had a fit and said I can never go on a plane again due to the drastic pressure changes. Look into finding an otoneurologist. They are rare but understand the condition and the complications, recovery.  Many docs don’t understand what is happening as you mentioned. 
  • kelly84510
    kelly84510 Mmbb10

    Posted

    Unfortunately we can only speak for our own experiences, and for me, I've been diagnosed with  seasonal vestibular migraines, MdDS and PPPD.. so for me if I WAS to get on a plane again I'd have to take some medication ( I can't remember what he said to take, but the neurologist was sending that information to my GP) .. I can let you know if your interested.. I really think that chris is right.. you need to speak to a professional about this.. you may cause more damage...

  • Mmbb10
    Mmbb10

    Posted

    So would taking a road trip in a car (and taking multiple breaks) be better than traveling by plane? 
  • Mmbb10
    Mmbb10

    Posted

    Oh and i just realized something...the first time I had vertigo..it was during the night and I was turning over to the other side, that’s when it felt like my room was

    spinning. At that time I had no idea what was happening. But I had to get up anyways cause in 5hrs I had to be on a plane to go on a trip. And actually while I was on the plane, I felt fine and felt good when I landed to my destination. So that flight didn’t seem to affect my inner ears/ vertigo. And at that time I had no idea what I was experiencing

  • Mmbb10
    Mmbb10

    Posted

    Sooooo I’m still having a hard time explaining to people why I got vertigo when I turned over to the other side in my bed during the night. Because every single person that I know toss and turn in bed and they never got vertigo. 

    So I’m trying to think of what I’ve done prior to all of this happening to me.

    I work at a restaurant and from May 2016-March 2017, I was washing heavy duty dishes, pots,etc for about 1 Hour a day and I did this 5 days a week. So I’ve had my head and neck in a looking down position while washing dishes for all that time. And it was very strenuous since I’m only 4’10” and being short makes it difficult. 

    I never had vertigo while washing dishes. But one day I washing dishes in December 2016 and I was fine. But later that night I turned over in bed and got the vertigo. And then it happened the next night. And then in February 2017, I was washing the dishes during the day. And then later that night I had the vertigo again when I turned over in bed. 

    (I STOPPED washing the dishes at the restaurant in March 2017 after I had my last vertigo attack in February 2017)

    ***So I’m just wondering if there is a chance that doing all that hard dishwashing and bending my neck and head to look down in the sink for an hour somehow caused the crystals to become dislodged and then during the night they eventually got loose and moved when I turned over in bed??

  • Mmbb10
    Mmbb10

    Posted

    Can anyone give me confirmation from my story above if bending my neck to make my head look downwards to look down while washing dishes for hours per week caused the crystals in my ears to loosen and therefore moved around while I was turning over in bed causing vertigo?
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