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dizziness that feels like waves in the head when lying down

Posted , 5 users are following.

kat35541
kat35541

Dear discussion forum,

I have had a condition for a couple of years that I can't figure out and which GP appointments haven't been able to resolve.

Especially when I'm feeling stressed and tired, when I lie down, especially on my side, I feel what seems like recurrent waves of dizziness going through my head, and once they start they don't stop until I fall asleep. They come regularly about every two minutes or so. It sort of feels like a slipping sensation, a wave or a flush -- like I'm sort of dropping consciousness a bit -- and it seems related to the rhythm of my hear and my circulation, as well as to ringing and pounding in my ears and a bit of a pounding all over. It is also often accompanied by pins and needles in my legs, and tingling on my left side.

I'm a 48 year old generally healthy female with a stressful traveling lifestyle. I've been to a neurologist and that came back negative, had an echocardiogram / heart scan and that was OK. I've had extensive blood work and it all came back normal. At the end of the month I've having tests done at a diagnostic audiology clinic to see if I have dizziness related to issues with my lower ear.

My feeling is that it relates more to my overall circulation since it also seems to be related to pounding in my heart... but I have no idea.

It's a scary and bothersome thing that doesn't go away. Any advice would be hugely appreciated!!

0 likes, 10 replies

10 Replies

  • Waffalobill
    Waffalobill kat35541

    Posted

    neurotologist deals with these issues. symptoms are like bppv but it shouldn't last so long. may be menieres disease.

  • sab65033
    sab65033 kat35541

    Posted

    Hi Kat,

    I am having exactly the same symptoms, I am 50 years and I have been suffering for about two years now .

    My symptoms started with just feeling of fainting but never collapse with shaking hand in one side for few minutes then stopped and get it frequently during the day.

    After that I start having Neck stuffiness progress to pain constantly few months later I start having lower back pain going to my legs numbness tingling etc....

    Cut long story short.

    I have seen many neurologist,ENT, Cardio and done so many MRI and blood test all normal a part from back apparently I have old fracture in T11 with degeneration dick and now I am worst I cannot control my balance ,I am floating all the time and having wave feeling, right now I am waiting to see private ENT to get last week head and ear MRI result by the way I don't have any problem with my ear but it seems I am gone deaf in my right ear which I couldn't pop out for many months now and feels like causing the problem.

    I went to an emergency hospital for dizziness and pain in my right ear which I had few infection one after the other so Dr at the hospital was sure I have meniere's

    I am waiting for the ear result now and in few weeks to see orthopedic specialist for my back and I will see neurologist as well for my dizziness too.

    I will let you know what is happening with me.

    All my family telling me is menopause????

    Please let me know what you did so far and how it happen first time?

    Best of luck

    Sab

    • kat35541
      kat35541 sab65033

      Posted

      Dear Sab,

      thanks for writing and I'm so sorry to hear about your symptoms.

      I laughed a bit at your last comment since my family also attributes this to menopause, but I do have to say the symptoms are much worse right before my period, so I wonder if it is in part hormonal!

      I don't have the symptoms of dizziness during the day, fortunately, it is really only when I'm lying down at night and particularly when lying on my side. I am going for an appointment to test for inner ear problems through the NHS / University College Hospital London at the end of the month.

      For me it really started with a sensation that I was having heart palpitations and it took me a very long time to think it may have had something to do with my ears. I was worried it was my heart causing thumping in my head... I was also worried about a brain tumor. I haven't yet had a head scan since the neurologist was not worried about me, but we'll see what comes from the ear tests.

      hang in there and good luck.

    • matt57085
      matt57085 kat35541

      Posted

      Hi Kaz, I've been going through this 24/7 non-stop for over 18 months now.

      I can't offer any advice , but if you could keep us posted om how you get on at UCLH that would be great as i'm waiting for an appt to go there.

      Could i ask how long you waited for your appt at UCLH after referral? Have you received your appt letter yet as there was a mix up with mine. What time of day is your appt?

      Thanks

    • kat35541
      kat35541 matt57085

      Posted

      Hi Matt,

      They rang me about a week after my GP referred me and offered several options, one of them only a couple of weeks afterwards I believe. Very easy to deal with compared to other NHS referrals I've had and they sent the appointment letter over email which was helpful. The appointment options were I believe 8 am ish or 3pm ish.

  • kat35541
    kat35541

    Posted

    sorry, I should correct "rhythm of my hear" to "rhythm of my heart"

    and "lower ear" to "inner ear"

    • kat35541
      kat35541

      Posted

      I was so excited to get an appointment at UCLH within 2 weeks and then a letter arrived out of the blue to say the appointment had been canceled, no explanation. then another letter arrived a few days later saying that it was rescheduled, and now moved 3 months later, in May. I was devastated.

      I've since been to a Dr in Switzerland -- for complicated reasons, I have health insurance there too -- and have been referred to this clinic at the University of Zurich which sounds really good, but they also have a long waiting list: http://www.en.neurologie.usz.ch/expert-knowledge/Pages/vertigo-and-balance-disorders.aspx

      Now I will wait and see if I can get to one or the other first. Since my referral in the UK my symptoms have gotten worse, unfortunately.

      I wish you luck with getting an appointment and getting good results! I do have the number for NHS referrals which is 0345 608 8888. They could probably tell you whom to phone at UCLH.

    • matt57085
      matt57085 kat35541

      Posted

      Hi Kat, So sorry to read your symptoms have got worse and i really hope you get your appt in Zurich or UCLH soon. To be honest lets hope it's Zurich that comes 1st as i've lost complete faith in the NHS as it's taken me over 27 months to get this far.

      I'm disgusted with UCLH not hearing from them after a phone call and email to them after being referred mid December and them knowing that this from being off and on for 6 months became it became severe and 24/7 in July 2017.

      Keep us posted, good luck to you and thanks for the info.👍👍👍👍👍

  • matt57085
    matt57085 kat35541

    Posted

    Hi Kat, Sorry i had not seen your reply as the email notification had gone into my spam folder.

    Thanks for the reply👍 Have you been to UCLH yet?

    I'm very disappointed with them! I was referred to them by ENT in December, i phoned them at the end of January and found out a mistake had been made, was never phoned back, wrote an email to them a week after this and i've not heard a thing.

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