Please help me!

Posted , 6 users are following.

I began getting dizziness in March 2018, it started with crippling fatigue, the nausea and then felt the world was spinning. Now I get headaches to the point I think I am dizzy, nausea, bad stomach and my neck is so tight at the back and base of my skull.

I have had a CT Scan, 2 x thorough blood tests, ENT, chest X Rays, Moorfield Eye Hospital checks, ECG, Vertigo Tests which I pass - no one seems to know what the underlying cause is.

The doctors prescribed me Mirtazapine - I wish they hadn't. They told me I was stressed and suffered anxiety. I didn't think I did until this all started.

The dizziness does begin to subside, but it seems to happen the same time every day and I just feel off. Really spaced out and tired with it too most afternoons. I have monitored my food and drink. There are some days I feel absolutely fine, but trying to come of the Mirtazapine, I seem to get the symptoms come back so not sure if it is withdrawal symptoms.

The hardest part in dealing with this is everyone telling you this is 'all in your head'.

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13 Replies

  • Posted

    i know how you feel its been 4 years for me and counting like you i passed my dizzy test seen an audiologist, i too have tight neck at the base if my skull but mine never leaves its with me 24/7 its horrible having to live like this and no answers.

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  • Posted

    Hi I was the same turned 50 and dizzy 24/7 saw 2 ent consultants neurologust and gynaecologist!! Was told it is hormonal perimeopausal started hrt! Blood tests don't always show up changes!! It can take up to 3 mths for vestibular system!!! To settle! Goggle dizziness and hormones! Hope this helps

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  • Posted

    Ah the NHS slap you on antidepressants and treat you like a nutter treatment!

    Nearly three years for me since my 1st totally out of the blue sway that became more and more until it became non-stop and brutal since July 2017.

    Nearly 9 months to see a Neurologist who couldn't of been less interested if he tried and I've not heard anything from for nearly a year.

    Audiology tests normal but ENT not happy so referred me to UCLH in Dec 2018 but due to clerical errors and non answers to emails and calls my appt is Jan!! Only 13 months since referral!!!

    Paid to see Dr Surenthiran in Sept who was good and see him again next month.

    Visited my GP at start of August and asked to be referred to MH team as I want to jump off a cliff.

    It took the MH team 5 weeks to make any contact, when they did they said the would call back with another appt that day but they didn't it was 13 days later with an appt for mud December!!! So 4 1/2 wait on an urgent!!!

    So this will give the NHS even more ammunition to blame my brutal non-stop dizziness, bobbing, swaying, lightheadedness on MH health but it's a byproduct of this not the cause!

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    • Posted

      Ouch Matt, sounds like you have had a rough time.

      I am waiting for Oral & Maxillofacial follow up as they are supposed to be making me a night guard, I have been waiting over a year, due to grinding.

      Admittedly, I was put on antidepressants because of the dizziness and really wish I hadn't as I am finding it another obstacle to overcome. I am due to see the Neurologist on the 9th November this year, though if any of the other people I have been to see are anything to go by, I am not holding out much hope.

      My MH team were awful, twice he didn't turn up and the last appointment was due to be a Skype call and he didn't bother calling.

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  • Posted

    Hi. Your problem could be your trapezius muscles. I wont go into details here ( Im in a hurry to go out!) but if you Google "Trapezius pain and dizziness" it will tell you all about it and also offer solutions. It might also explain your headaches and the connection with anxiety. Let me know how you get on as I'd love to know. Best of luck! I'm off out now. Bye!!

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  • Posted

    Hi there, I've had 24/7 dizziness with all the accompanying symptoms for around 30 months. After many fruitless consultations I asked my GP to refer me to Adolfo Bronstein at UCLH who diagnosed PPPD. If you've not heard of it I'd strongly advise doing some research on the internet, but it'll probably be pointless discussing it with your GP or even neuro or ENT consultants as it's only been classified as a condition for the last couple of years, and the medical profession - at least in the UK hasn't got up to speed with it yet. Please come back if you need further info.

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    • Posted

      Brian, How long did you have to wait to go to UCLH? I've had nothing but trouble with clerical errors and so on with UCLH and go in Jan after waiting 13 months due to their incompetence. I'm due to see Dr Nandi.

      Whats you treatment for PPPD? Audiology said PPPD but ENT wanted me to go to UCLH as they weren't happy with PPPD.

      Ta

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    • Posted

      Hi Matt, 13 months wait sounds ridiculous, we were impressed that my referral was processed so quickly, around 3 months from asking my GP to refer me to sitting down in front of Bronstein. I wasn't diagnosed with PPPD until I saw him; none of the consultants at the DRI had even heard of it, but it didn't make any difference to the treatment as I was already on Nortriptyline and working on vestib rehab exercises.

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    • Posted

      Brian, Thanks for the reply 👍

      I've been doing VRT from YouTube videos.

      Suppose I will see what Dr Surenthiran says as I'm seeing him again next month and what UCLH say in Jan.

      I've written another Email to UCLH to ask why I've waited 13 months and why I've been messed around so much by them.

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