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2 years in can anyone help?!

Posted , 6 users are following.

Herindoors64
Herindoors64

Hi I am based in uk. I went down with spinning vertigo 2 years ago - it came from nowhere ( I was fine day before) 

I won't go into all details ( anyone who suffers will know) but main symptoms are dizziness, vertigo, light headed - no balance.

I get dizzy when I lie down, roll over, get up - in fact an attack can come on any time! 

been to ENT ruled out anything to do with ears

been to rheumatologist - no result

under neuro - had tilt table - negative result

had autonomic dysfunction testing - waiting for results

epley performed numerous times - all failed

i don't know what or where to go next just wondered if anyone had any thoughts with their own experiences? I am beside myself, no life, doctors are useless - keep mentioning anxiety to me - I could scream of course I am anxious as it goes hand in hand with this condition. 

Thanks 

S x

0 likes, 26 replies

26 Replies

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  • freddy34229
    freddy34229 Herindoors64

    Posted

    Greetings , my name is Freddy and my case is "similar" , first of all I want to say that Vertigo is a complicated illness but not terminally ill, is very common in the world that affects all kinds of people. Vertigo has multiple causes and multiple conditions. In my case when I was a child, doctors detected vertigo caused by middle ear problems , I had migraines often. Episodes of vertigo are repeated throughout my life , these are cycles where some time I'm completely normal and sometimes I suffer vertigo. like your Sarah, In a time when I was completely normal I woke up one day without balance, disoriented, with vertigo. I was lying in bed without moving one month. When I was better, I went to the otolaryngologist and diagnosed me Benign paroxysmal positional vertigo (BPPV) The neurologist sent me Paxil and diagnosted me panic attacks... actually I'm with panic attacks.

    I hope you get better soon , I know it 's horrible but you have to be strong !. Remember that after the storm comes the calm .

    • Herindoors64
      Herindoors64 freddy34229

      Posted

      Hi Freddy thank you very kind words just struggling with always being so ill. I had panic attacks too . I can't wait for the calm x

    • freddy34229
      freddy34229 Herindoors64

      Posted

      Sarah .... I send you a lot of good energy and I understand you. Remember that in the world are worse diseases...

      I tell you that I´m with panic attacks and constant vertigo about 3 months, the doctor told me that problem is not something psychological, it is physical...

      Just remember you are not alone and all of us have a purpose, this problem is a test in this great journey called life.

      A big hug! smile 

  • ruth99954
    ruth99954 Herindoors64

    Posted

    Now on my third bout of VN.  First when I was 30. And then one at 40.  Now one at 65.  When I was 30 I was completely left to heal by myself as they out it down to anxiety.  Lucky I was young and coped although I always had residual symptoms.  At 40 I was seen by a neurologist who knew a good bit about this, but still no name.  Still my doctors did not understand, there was not any vrt available or offered.   Again it was up to me.  After writing to the doctor because they had lost my records I was informed that these 2 attacks were VN.   Now they are still trying to tell me I have anxiety giving me these symptoms.  They do not seem to be bothered to look up the condition.  Once again the anxiety is excessive.  I was given amitriptyline and after 7 days on 5 mg I was worse with such terrible side effects. I have not taken any for 2 weeks but my sleep pattern will not return.  Before this med I was sleeping 8 hours a night.  I firmly belief the initial infection must be give before vrt starts.  When will all these docs realise anxiety is part and parcel for at least 50% of people affected.  I have been given mirtazapine but after the amtriptyline I think I have enough to deal with.  I am trying to cope with anxiety and panic attacks with Bach rescue remedy, which works for me.  Balance is really off today.  stomach is churning,  neck is tight tingling sensations.  Top this all I am not sleeping.  Have to say for the 25 years since my last attack I did improve and was doing lots of things and leading a busy life.  Anyone use anything for sleeping.  I wish I had never touched amtrip .   Does anyone get a brain clear during the day.  Some days my symptoms nearly disappear between 4pm and 6pm , still have balance issues.  
    • emma93780
      emma93780 ruth99954

      Posted

      I couldn't get on with amitrip either did nothing for me just made me crazy! I take sertraline and propanranol at the moment but not sure that's doing anything either I've been on it 10 months now one good thing though is it helps me sleep I have a few restless nights but most of the time out like a light, only thing is it can cause nights sweats which isn't nice!

      For me they put it down to vestibular migraines which started off with initially vestibular neuritis when my son was 4 months old just came out of no-where and I freaked out.

      What else have you tried? X

    • Herindoors64
      Herindoors64 ruth99954

      Posted

      Poor you Ruth ... And well said about the anxiety - when I am feeling up to it I am going to take a complaint to all the health professionals - stop playing up anxiety! I was on amityptryline - it didn't really help me at all with sleeping I came off it. I get the very occasional alright day but brain fog is terrible. I am always dizzy, lightheaded and walk like a dunk. Use a cane and a walker to help. On my third day in bed - this attack is ferocious  xxxx

    • Herindoors64
      Herindoors64 emma93780

      Posted

      emma switched to 100mg of sertraline but can't see any difference. been on countless drugs too many to remember! ENT ruled out my ears as the problem - am now under neuro. Tests, results take so long ..... Xxxx

    • ruth99954
      ruth99954 Herindoors64

      Posted

      Hi Sarah

      thanks for your concern

      I have been trawling the web for anything herbal that may help

      i did mention in my last post about Bach Rescue Remedy Spray and I would ask you all to give it a go.  Can be bought in supermarkets.  As soon as your panic attack becomes too much, spray 2sprays on to tongue,give it a few minutes to work,  if not try 2 more.  You can spray as many times as you like.  On a bad attack I have sometimes used 8 sprays.   It works for a lot of people.  Use it during the night if you need.  It works for a lot of people.  I Carry mine everywhere but am using it a bit less now.  last night was the first time I slept nearly 8 hours.  Woke up with a headache and neck ache because I had hardly moved.  I also have a bach flower mix for anxiety,, which I mix 24 drops with water and use throughout the day.  used 5 days but am sure starting to feel benefits.  Website Bach flower advice.  Tom does mixtures and you can e-mail him for a mixture to suit you.  You never know this might just be for you.  Also benefits may not be immediate but slow ongoing improvement.  I will update on this in a week or 2.   Another thing I have found is tapping by Julie Schiffman .  under tapping for anxiety, think itis on Facebook as well, but it is becoming very popular.  Another thing to work at.  All have to be better than groggy heads from tablets and then eventually withdrawal from them.  Once most of your anxiety is reasonably under control you feel a lot more in the land of the living.   I still have a long way to go inching along.  To all of you suffering with this thing from hell my thoughts and prayers are with you and I wish you all a speedy recovery.  I would not wish this on my worst enemy.  This forum provides much more insight and information than 90% of doctors who only see one side of the coin.  Yet the information they need is out there to see if they only wanted to look

      Ruth

       

    • Herindoors64
      Herindoors64 ruth99954

      Posted

      Great post and great info Ruth - certainly going to look at rescue remedy and tapping too. I watched something on YouTube earlier which seemed quite good - basic rules are breathe in (through nose) and count to say 4 then exhale for 8 - basically whatever number you choose to inhale double it on exhale. Also been trying to find good medication app. Please let me know how things are going - hugs across the miles x
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