Wad told labs/nystagmus from viral cold...now told not it..ughh

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Hello, my symptoms are

Swaying back and forth

Eye jitters (nystagmus)

Eye swirling when woken up through night (sometimes)

Brain fog

Weak/shakiness

Memory issues

When walking sometimes, feel weird

Bothers my driving (can see but looks weird, floating)

Rarely headaches

Feel crappy in morning and evening

Went to ENT and he said it's not inner ear issue (but have slight pain/fullness sometimes in left ear)

Just overall feeling of out of it.

Have had CT scan/blood work/ENT and 2 eye exams, which all came clear.

Walking down the grocery isle sometimes bugs me

Anyone else have these issues? Ent told me it wasn't labs....currently. changing doctors.

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14 Replies

  • Posted

    Hi, have you had you B12 tested, mine turned out to be this. The full blood count that most GP orders don’t test for B12, please check as I had all the symptoms you list. 

    Regards

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    • Posted

      Hi Julie, yes I've had that test done also, including thyroid. Blood work was perfect. Had an MRI sunday so just waiting on results. But I also had one last year for same sorta symptoms, just not nearly as bad as this, and it came clear too. Super frustrating as it affects my daily life. Hard to make plans when I never know which day i will be really off.

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  • Posted

    I would definitely look into PPPD.....or other central vertigo( coming from the brain) MdDS, visual vertigo etc..
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    • Posted

      Hello! I just looked up pppv and that sounds exactly like what I have. It also says in a clinical trial a girl originally had labs (which I was first diagnosed with ) and it became pppv. Everything they listed ibasically have, except for the fear of falling. But then, I would be nervous if I had to climb high, because I am off balance. Thank you VERY much for letting me know about this pppv, as I've researched soo many things and have never come across this. I will defiantly bring it up to my doc...much appreciated! !

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    • Posted

      I'm so happy, you may have found your diagnosis.. unfortunately the other lady might be correct in saying the only thing that may help you is VRT( vestibular  rehabilitation  therapy) ..basically you need exercise to help your brain work with your eye's and ears again... you can find some exercises on YouTube.. but just remember sometimes it can make you feel worse for a while before it makes you better....

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    • Posted

      Yes I believe so too after reading more about it. Did you happen to have it also? Do doctors know much about this? I already go to physio for my neck because last yr during an mri they found spinal stenosis, but at a point where physio should help it, and does. I've been speaking with him about my symptoms, but not sure if I have to go to a different physiotherapist for this sorta thing?

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    • Posted

      Originally I was diagnosed with PPPD, but I've now been diagnosed with MdDS.. Mal de department syndrome.... and it's funny because these two syndromes are all most identical.. the big difference is" I feel better in motion" I could drive a car all day long and feel normal...but I do feel absolutely terrible when I get out....so I have done a lot of study on both..personally I think MdDS is a lack of  communication between the brain and the cerebellum. And PPPD is a lack of communication between the brain and eye's and ears... for you, I'm not sure who to see... I live in Australia and I would send you to a physiotherapist.. but some  countries have different physio for different symptoms... but what I would work on is way to deal with the anxiety's( yoga, acupuncture, massage, meditation, etc.. that has helped me a lot.. I'm here if you ever need a chat..🙃

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    • Posted

      Ahh! Yes I've read a lot about people feeling better when in a car, and yes I'm the opposite. I see my new doctor next week and will see what she says about it. I had MRI results come back today clear, which is great, but still no answers. But so far, this pppd thing sounds the closest. I'm in Canada, and see a physio therapist now, so will definatty bring this up to him. Again, I am very appreciative to you for this info as Ive never heard of it. smile

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    • Posted

      Don't be  surprised if your doctor doesn't know anything about this,  I have found that a lot of the older doctors don't know much about PPPD... in 2016 they changed the name from CSD( chronic subjective dizziness) to PPPD. And they also brought other central vertigo's into the same name. So visual vertigo, phobic postural vertigo, functional dizziness or space and motion discomfort all now go under PPPD... I hope this helps if your doctor calls it something else...

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    • Posted

      Ah was wondering about that. I see my doctor tomorrow so going to ask her. The off baLance thing I can handle, it's the eye issues that bug me. Sometimes I'm ok (tollerable) and sometimes I have to go to bed. Like right now, they feel strained and like they want to move or jittery feeling. And my neck pain flares up. Is your completely gone? I hope my physio therapist can help. I'm going on 9 weeks now. I went to a baseball game and was ok, but sometimes had to look down because of the massive crowd and lights I guess.

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  • Posted

    Hi,  I too had the swaying back and forth, nystagmus, brain fog, weak/shakiness, memory issues, also felt weird

    when walking at times and if it was a typical day, it bothered me to drive, but I would only drive to work and back - 7

    minutes away.  I had BPPV benign positional something vertigo and nothing would help.  After 3 weeks, it was clear

    even though I would do the Canalith Repositioning Manuever from you tube that the ENT suggested I watched, I

    needed something more so I called around and found a Vestibular Therapist.  She would elicit the vertigo and then

    with a few moves she corrected it.  But then when I was at home, usually it would come back when I got out of bed

    in the morning.  I went to the Vestibular Therapist 6 times before it went away.  I'm about eighty something percent

    sure it went away because I saw the V.T., but I'm not 100% positive.

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    • Posted

      Such a terrible feeling eh!? They tested me for bppv, and they said I didn't have it, because when I did certain tests, I passed them. I guess when they do the hall pike test (lay you back and turn your head to side and watch eyes) I guess they are suppost to move (nystagmus). mine didn't move when head is shaken or tilted. So the therap from what I understand, tilts your head certain ways to realign the crystals in your ears which become lodged when you get a cold or the eustation tubes become inflamed. Any of this stuff is terrible because there are really no definate tests or mri that can show a problem. Super happy all of your symptoms cleared up!! And thank you for your response smile

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