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My head is so BADDDDD spaced out and constant dizzy

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laineyk
laineyk

I apologize that this will be a bit long

I have a hx of migraines with aura since age of 18 (now 58)  and have had bouts of feeling a it dizzy periodically over the years but just little moments here and there.

Also have had 3 full blown BPPV attacks that led me to ER in my past

so...I was on zoloft for anxiety 15 years and then out of the blue it stopped working in 2012..tried increasing dose etc...nothing worked..in the meantime I was given benzodiazpine to counter the anxiety

fast forward to today..In the past years I tried to come off the benzo and failed..in 2015 stopped the zoloft because it simply was not working..I had been having some dizziness but nothing like it is now. Since 2015 I have seen 2 ENT's and neurologist who did MRI and 48hr EEG...thats when he (the neuro) gave me dx of MAV

offered Effexor or AMI..I refused since I had just come off zoloft and did not want to take psychotropic drugs any longer.

I must add that I have again been tapering off valium very slowly which brings its own set of torture

I purchased the book "Heal Your Headache" and have tried the diet but am not good at sticking to it and it doesn't seem to change anything anyways

I am now constantly Dizzy/off balanced/ swaying/ floaty boaty/ spaced out head feels like its infected  never stops now. Nothing I do helps. I went to ER in summer of 2016 because I was certain I had a brain tumor or infection.  They did another MRI of brain and neck and found herniated discs in neck / brain was "fine" ...yeah well tell that to my brain

I am so scared now...I can not work (haven't worked in years)  barely can do anything...simplest tasks make me feel as if I am going to pass out or die.

How can someone have this every single day , all day long?  if its migraine?

I am looking for support and encouragment..if not for my faith (STRONG) in God I would have ended this misery a year ago

I have appt with neuro- otologist in March..I want him to run every single test know to make sure I do  not have something going on in ears..I read that the neuroma ?  can not be seen without MRI w/ contrast?

My MRI's have been without contrast because I had allergic reation years aog to it.

does anyone know anything about that?

sorry for being so long winded but I spend all day on couch or on bed...that has become my entire life. I have great hubby/ grown adult kids/ grandchildren...blessed beyond yet I sit waiting for the day to get over so I can try to sleep and get away from my head symptoms

God bless any of you who are struggling with this...would not want my worst enemy to have this

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  • Dbmetsfan
    Dbmetsfan laineyk

    Posted

    I have been on this forum for over a year and when I read what everyone goes through it makes me feel better to know that maybe it is all anxiety but when I get the head pressure I become a nervous wreck. I find it hard to believe that nothing is wrong even though I had MRI and carotid artery test and blood work all negative. I know it has to be anxiety because I feel good when I go to bed and at around 4 or 5 in the morning it starts again. It's like my body knows the day is beginning and let the head pressure begin. As the day progresses and the more I think about it the worse the pressure. If I go out I am a wreck and once I get in the comfort of my home I feel a little better. I know this must be anxiety because a few months ago my husband had surgery and I needed to take care of him, do all the driving etc and in the 6 weeks I had to do this not one day of head pressure or dizziness. The day he was able to start doing for himself, the head pressure gradually came back. I am tired of living like this. There are times I feel like I am going to go cray but i convince myself it is anxiety. I want this to stop and feel normal again like I did when I was taking care of hubby. I feel sorry for all of us dealing with this and pray we all feel better soon. Thanks for listening

    • laineyk
      laineyk Dbmetsfan

      Posted

      OH how I wish this was ALL anxiety but unlike you I have it all the time..

      I had several xs in last few months that I had to take family members to ER and the WHOLE time I was a mess...nothing distracts me.

      I have anxiety and this is NOT that, although the anxiety exacerbates it for sure

      besides if it was ALL anxiety valium would fix that too and it DOES NOT

      so if you know yours is anxiety that can be fixed...Counseling..meditation..exercise...heavens please saty away from the psych drugs though.

      I too wake with cortisol surges 4-5am  and that is anxiety...but the whacked out head etc is something else...be it MAV or benzo withdrawal...I do not know. What I do know is this is NO WAY to live.

      So all I do is pray and CRY constantly...I need help and hope that the neuro-otlogist will be able to give me some help

    • Dbmetsfan
      Dbmetsfan laineyk

      Posted

      Sorry to hear you go through this. I have read so many posts this past year and everyone associates with anxiety because tests show nothing. I just don't like when I feel like I am going to jump out of my skin that scares the hell out of me. Up until Last December I never let anything bother me things just rolled off with no second thought. Now everything does me in. Everything I do, driving, working just sometimes going out. I am 67 years old and don't want to live what I hope it another 15-20 years or more living like this. 

    • Starrfire7
      Starrfire7 laineyk

      Posted

      I feel like I could have written all of your posts! It's misery. I'm so sorry you're dealing with this. I hope we can get get answers soon and get our lives back!

    • Elise93
      Elise93 Starrfire7

      Posted

      I'm so sorry too! How long have you been dealing with this? Have you gotten any diagnosis?

  • rocksolid
    rocksolid laineyk

    Posted

    I think the trouble is the SCM muscle in the neck. I am going for trigger point injections. I had a VEMP test done and it showed a weakness in my ear that might be coming from my neck muscles.
    • Elise93
      Elise93 rocksolid

      Posted

      Hi! I'm sorry you're going through the same issues. sad how did you find out your SCM muscle is damaged? What doctor did you see?

    • rocksolid
      rocksolid Elise93

      Posted

      I went to an ENT that was able to do a vemp test. It's an easy test where they hook electrodes to your neck.

    • rocksolid
      rocksolid

      Posted

      Been a mess for 6 yrs. I was told i had low vitamins, depression, vestibular migraines. I don't know if the trigger point injections will fix my problem. I hope so. If you have forward head posture like me then it could be your SCM giving you problems

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