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Anyone else feel sick 24/7 from vestibular issues?

Posted , 9 users are following.

Hayhue
Hayhue

Does anyone else have 24/7 malaise? It seems even on the good days there is still an underlying feeling of off balance/boat feeling and nausea that never goes away. I just don't ever feel good, is the only way to explain it. Is this normal for vestibular issues?

I feel sick with anything I do. For example, I went to a friends birthday last night and after 2 hours of talking to friends and moving around, I felt so sick I couldn't wait to go home. I get this nauseated feeling and sweaty. Just all around sick. I have to stay in bed with my eyes closed for it to go away. Then when I get up and start moving again, it starts to come back. It's just like this everyday, especially if I move too much. Only relief I feel is staying in bed doing nothing.

Everyday just feels so hard. Very disheartening. 

0 likes, 35 replies

35 Replies

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  • arria
    arria Hayhue

    Posted

    Sounds like a classic case of permanent vertigo/VN.  That is what it is. I have it 4 yrs.  After the first violent attack spinning etc. my brain clamped so VRT did not help.  The brain did not compensate and still gets confused msgs.  Occasionally I feel better in the middle of the night, sensory deprivation, no light, sound or motion.  Just had to refuse a thanksgiving dinner, too many people, too much motion, activity, noise etc. shame.  Hang in there, maybe yours will ease up.  Good luck.
    • Hayhue
      Hayhue arria

      Posted

      Oh, it's definitely permanent. It's been 12 years but with exercise went away for 2 years then came back full force 3 years ago. I've been told it's Menieres to BPPV.

      What do you mean that your brain clamped? I've never heard of that before. 

    • arria
      arria Hayhue

      Posted

      I have done research at least every week for 4 years.  I may have seen the brain clamp on the VEDA website.  It made sense for me. When the brain is jolted and msgs are confused by initial vertigo etc attack, the brain can protect itself by stopping activity along some pathways, ie clamp, but then compensation is also stopped, apparently forever for me.  Drs did their 'wait and see' for several  months, ugh!

  • patty818
    patty818 Hayhue

    Posted

    I have days a lot that I just don't feel good. Don't know if it's the MAV or depression from having this everyday for a year and a half. I do know I'm sick of it. The worst part to me is how it changes and comes on when ever it wants, it has a mind of its own. One day I'm on a raft the next I can see I world around looks like it's moving in my peripheral vision or it feels like I'm floating up and down. When moving around to much I feel bobbing sensations and when moving my head up and down wow the room really looks like it's moving. I pray that one day we wake up this is gone and we can be normal again, I hate wondering everyday how I will feel and what sensations I'll have that day and how long and bad they will be.

    I hope you feel better

    • Hayhue
      Hayhue patty818

      Posted

      I honestly feel the same exact way. It's absolutely terrible. 

  • Helianthus
    Helianthus Hayhue

    Posted

    I too feel ill from VN at varying degrees all the time for the past 19 months. Do you think there is a cut off point when consultants will say if you're brain hasn't compensated by a certain time, it is unlikely you'll recover any further? Or is there always hope? I sometimes wish I could be told by consultant that I won't compensate any further so I can then try to adapt to my circumstances for the longterm instead of feeling in limbo, always trying and hoping to get better unable to make plans for my new future life  as I don't know whether it is actually possible to improve. It feels like I may have reached my limit?

    Over the past 12 years of your illness, were you ever told your circumstances are permanent? Or have you constantly had the carrot dangling in front of you?

    • Hayhue
      Hayhue Helianthus

      Posted

      I'm sorry you have to go through this as well. 

      I spent 7 years going to the doctors and they told me there was nothing wrong with my ears or CNS. I slowly started exercising and it went mostly dormant for 2 years, minus the occasional flare up. I quit exercising and it came back and hasn't been gone since.

      Im not sure if time is a factor. I would like to think that it is not a factor being that I had mine for so long and then it went mostly away. However, it's been 3 years since it came back and I've gotten better but stayed the same, if that makes sense? 

      False hope, in my opinion, will eat you alive if you let it. I quit letting it a long time ago, especially with this. For example, I recently went to a physical therapist who told me I would be cured in 4 weeks - but I knew better. If that were anyone else, they would've clung to that promise and been horribly disappointed when it didn't pan out. So you really have to be cautious when it comes to these inner ear issues. Stay hopeful that it will get better in time but be on guard. 

      I was was never told it was permanent until I was given a Ménière's disease diagnosis just this year. I cried tears of joy when I found out however, since then, I've been told it's BPPV as I don't fit the entire Menieres criteria. I still don't know what to believe so I'd have to say the carrot has always been left dangling. At least you know it's VN, which is half the battle.

    • arria
      arria Hayhue

      Posted

      I have not been told mine is permanent but I can pretty much figure it out myself. Try reading "The Brain that Changes" at least you will be more informed.  Do you have all those nice friends who just know that their chiroprator will cure you in 2 visits !^!^!^!^

  • Guest
    Guest Hayhue

    Posted

    I also feel that way every day. I have started to go back to a "normal" routine beacuse I;'m sick of sitting in the house.  I figured if I'm going  to feel bad I might as week try to act normal.  It is uncomfortable to say the least though.

    • Hayhue
      Hayhue Guest

      Posted

      Thats what I'm trying to do as well but it's so hard. I just feel so sick that it's hard to enjoy myself. I really have to pick and choose what I want to do and if it's worth struggling through the sickness to do it.

  • marilyn48429
    marilyn48429 Hayhue

    Posted

    I so understand your sentiments as I too suffer from vestibular issues.  I have a hypo functional right inner ear and struggle physically and emotionally daily.  I was wondering how you are whilst shopping at a grocery or department store?  Thanks
    • Hayhue
      Hayhue marilyn48429

      Posted

      Both of my ears are affected but my left ear is worse. I haven't been in a department store in a long time because of this and I quit grocery shopping for the most part because of it too.

      It's too much: the fluorescent lighting, the patterned floors, the people, the walking, etc.. It's horrible. 

    • Guest
      Guest Hayhue

      Posted

      What would happen if you did go to a store?  Would it be possible for you to push yourself to do it?  That's what I do and I find I can do more than I thought.  I actually am back in the gym 5-6 dasy a week again.

    • marilyn48429
      marilyn48429 Guest

      Posted

      I do stay in the store until our shop is completed, however, the back of my head feels sort of numb for lack of a better description and my mind is saying you need to get out.  I am starting to believe my discomfort is more anxiety than anything.  I have been unwell with inner ear issues for the past year and a half and am having great difficulty accepting life's limitations.  Prior to my inner ear issues, my life was most beautiful.

      I can, without incident, go and work out - at least at our local community club with a group of ten ladies.  Any insight 

      ?

    • Guest
      Guest marilyn48429

      Posted

      Marilyn,

      To me this does sound like anxiety. That would make this type of condition so much worse.  Try to push through that so you can get back to a more normal life.  That is what i try to do.  It's not easy though.

    • marilyn48429
      marilyn48429 Guest

      Posted

      Thanks Jackie for your interest and kindness.  Do you have any suggestions on how to accept my new life?  My mind always seems to revert back to the way I was.  Any suggestions would be most appreciated.  I really do not want to take the anti depressant route.  I know that is a slippery slope!  
    • Guest
      Guest marilyn48429

      Posted

      Hi Marilyn..I don't take any medication either.  I think that the best way to do it is slowly. Start challening yourself to do things you want to do that make you anxious and don't stop the moment you feel uncomfortable.  When I'm at my worse I make nyself go out for a short walk at least.  It will pass.   I thikn k with you (and me) it's the anxiety that is probably making this so much worse. Does this make sense?

    • Guest
      Guest marilyn48429

      Posted

      Hi Marilyn..I don't take any medication either.  I think that the best way to do it is slowly. Start challening yourself to do things you want to do that make you anxious and don't stop the moment you feel uncomfortable.  When I'm at my worse I make nyself go out for a short walk at least.  It will pass.   I thikn k with you (and me) it's the anxiety that is probably making this so much worse. Does this make sense?

    • marilyn48429
      marilyn48429 Guest

      Posted

      Hi there Jackie.  Thanks for the words of wisdom.  I am going to try heading to the store again this weekend so will keep you posted.  I just woke up one morning with severe nausea and vertigo, hence, a year later, I was diagnosed with the hypo functional inner right ear.  The news of no cure, operation or medication depresses me still today.  Just struggle to accept the limitations of this illness.  
    • Guest
      Guest marilyn48429

      Posted

      I know this is a tough one.  Every morning I wake up and pray that it won't be a dizzy day.  Yesteday was touth for me, but I did my usual routine even though I was anxious all day and night.

    • marilyn48429
      marilyn48429 Guest

      Posted

      Jackie, I am only 62 years old.  I often wonder how long I can go on living like this.  Do you or have you gotten passed that thought?  Thanks for your kindness.  
    • Guest
      Guest marilyn48429

      Posted

      Marilyn I'm 63 so we're in the same place I imagine.  I have gotten to the point that I;m now so angry about it I decide to just live life the best I could.  I really do think that the worry and anxietty make it much worse.  At least for me.  Where do you live? i notice that weather aslo affects me.

    • marilyn48429
      marilyn48429 Guest

      Posted

      I live in St. Andrews, Manitoba Canada, so we get the definite four seasons of weather.  How does the weather affect you, may I ask?
    • Guest
      Guest marilyn48429

      Posted

      I live in Florida so when we get storm fronts or cooler dsy I'm more dizzy and my head and ears feel "full". I dont know how else to explain it.  Are you on Facebook?  

    • marilyn48429
      marilyn48429 Guest

      Posted

      Yes I am.  Marilyn Harris Allen, though I don't frequent facebook that often.  Our family had been to Florida at least ten times and r headed there in January.  I love your beautiful state.  

    • Guest
      Guest marilyn48429

      Posted

      I just thought it might be an eaaier way for us to communicate than through this site.  Are you coming to orlando this January? I live there.

       

    • marilyn48429
      marilyn48429 Guest

      Posted

      Yes, we are.  We are staying in Disney World January 13 to 17 and then moving to a hotel closer to Universal as we are vacationing with my daughter and she is at a conference in that area for four days.  Would u be willing to meet?  I would love that.  No pressure though.  I would respect your reservations.  
    • Guest
      Guest marilyn48429

      Posted

      I would love to meet.  Let's continue to talk and firm up plans as the time gets closer.  It's expensive to stay by Disney!!!  What kind of conference is your daughter attending?

    • marilyn48429
      marilyn48429 Guest

      Posted

      My daughter is a speech language pathologist and I believe the conference is on speaking devices.  Disney is expensive but we book thru David's Vacations and accommodations are are actually quite reasonable.  Would you like my email address?

    • Emis_Moderator
      Emis_Moderator Guest

      Posted

      Hi both,

      See the comment/link I added to the post above re exchanging contact details.

      Regards,

      Alan

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