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Driving me insane!!

Posted , 11 users are following.

steve93849
steve93849

Ok..... just an update on my condition, all started in october severe vertigo attacks room spinning and stuff......Saw ENT specialist basically no good so i asked my gp to refer me to an nuero ocologist in london which he did had various test done and was diagnosed with vestibular neuritis this brings me up to now so here goes

I have had no severe vertigo since December but have not been right since .......... some days i feel good had a few weeks where i felt i was over it completely then the last few weeks feel like ive gone back 2 months very light headed foggy head feel like ive got a rubber band around the lower part of my head and i dont know why this is happening is it all part of this illness or have i got BPPV back again im so fed up with this that im becoming depressed with it. Feel like i need to blow my head up to cleasr all the thick foggy sensation.

im going for some VRT soon but from what i can gather there very hit and miss.

I just need to know whether wham im feeling is normal or have i got something else as i dont really suffer from any balance issues .

Any advice or personal experiances then please post as im feeling my life is over as i used to know it

0 likes, 18 replies

18 Replies

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  • alison17886
    alison17886 steve93849

    Posted

    Steve you aint on your own my heart goes out to you im feeling the same ive had it for 12mths i feel my life is over to its a hell of a thing
  • keith31290
    keith31290 steve93849

    Posted

    Hi Steve

    Sounds like what I had just seen a neurologist yesterday and said I have migrane with vertigo ! Could it been the same for you ??

    I have never had sore heads ect I got tablets as its classed as middle ear only took so far and I feel fine ! No dizziness or ligh headedness ( sore far )

    • keith31290
      keith31290 steve93849

      Posted

      Hi Steve will let u know when home from work as you only take it at night not got with me ! My blurry vision has gone completely
    • keith31290
      keith31290

      Posted

      Hi the tablets are called Amitrityline it says they are for depression but also treat migrane and vertigo ! Working so far for me
  • marion50354
    marion50354 steve93849

    Posted

    Have they taught you the Epley Maneuver? It's helped ease my symptoms. It's still there but much less intense and fewer episodes per day.
    • pauline59158
      pauline59158 marion50354

      Posted

      So what is the Epley manoeuvre? I've not heard of it, but sounds like it may be useful!

       

    • steve93849
      steve93849 marion50354

      Posted

      yes had that done twice in December like i say no room spinning vertigo but not sure if i have some crystals still floating around not quiet sure how BPPV works .....is it always room spinning or can i just cause general dizziness?
    • marion50354
      marion50354 pauline59158

      Posted

      The Epley Maneuver is a quick series of moving your head in certain directions and holding each for a minute or so. You have to know which ear is the bad one, then do moves in the proper direction for that. My GP told me about, immediately thinking I had vestibular Neuritis. I tried doing it, but I also had my physical therapist put me through it twice to make sure I was doing it exactly right. I've seen gradual improvement, almost at 90% or more. It DOES happen from time to time, but I've noticed it's mostly when I'm looking up or turning to one side quickly.

      You can find it demonstrated on You Tube, although the man doing it said you'd be cured after one time using it. Not so. But still I believe it's helped me. Now you have to know that while you're doing it, it will induce spinning or dizziness. But when you're finished, sit on the side of the bed for a minute, it stops.  My Physical Therapist and the internet said that we're trying to coax some calcium crystals that have moved out of one side of the ear, back into the correct side. Others say you're "retraining" your balance factors.

      I've also read and heard from PT that the Epley is the best one, but there are 2 others, Daroff and Seminon (or something). It's possible one of the others would work, but I believe the Epley is best.

      My doctor gave me meclazine for nausea and dizziness. It's lilke Dramamine but doesn't make you sleepy. I've taken only a few times; can't say if it helped or not, but it certainly doesn't hurt.

      By the way, I do get migraines and have trouble sleeping, always. But I have special pills for the migraine (Imitrex) and I've started using Melatonin to get to sleep. It works and is not addictive. I just have to check with my GP if I can take it indefinitely.

      I hope you improve very soon. Even though I've improved immensely, I'm not perfect yet. So I'm keeping my specialist appointment at the end of the month. As someone said, they have to rule out certain things and then, I think, they just narrow it down and give a diagnosis. My personal opinion is the VN  Labyrinthitis and BppV all have the same symptons, so the Epley is used in all.

  • veemae80819
    veemae80819 steve93849

    Posted

    Hi Steve

    I recognise your symptoms.  I too have vertigo with migraine (migrainous vertigo) as well as tinnitus.  I know it can be quite frightening when you get the light headedness and strange sensations in your head.  When my symptoms first started I was convinced that I was going to die but here I am many years later!!!

    You can get better but you may need medication and maybe try and get a referral to see a physio.  My symptoms improved gradually over time by doing head and eye movement exercises, recommended by the physio.  

    I had to try several medication before I found anything to give me any relief. I'm currently on Amitriptyline for the nervous system and Almotriptan for the migraine. I also see a chiropractor regularly.

    All the best.

    • keith31290
      keith31290 veemae80819

      Posted

      Hi

      Can I ask your thoughts on the Amitriptyline ? Did they work straight away ? I have just got some yesterday and they seem to be doing the trick already :-)

    • alison17886
      alison17886 keith31290

      Posted

      The doctor told me they would take 6 weeks to work i had to come off them they made me ill so they put me on nortriptilene same family of tablets though
  • paula59
    paula59 steve93849

    Posted

    Hi Steve

    I have much the same, had it for two and half years now.  Ive been diagnosed with silent migraine.  The epley manoevre proved negative so it wasnt BPPV for me.  Had loads of different beta blockers and epilepsy drugs, nothing worked because I couldnt tolerate any of them.  Nortiptylene was about the best which is an anti depressant.  The more stressed you get, cos its so scarey, the worse it goes.  You have to try and destress.  I dont have a social life anymore but I can still go to work.  I find lying in bed makes it much worse.  The week days are better when I have to get up for work so I now no longer have a lie in on the weekend and its better than if I lie in.   Dizziness never gone, but have goodish days and bad days.  Light effects me massively as does noise.  Sometimes I get the big headache but not very often.  The pressure is always in my head and some days my ears feel full and some days they dont.  My neck aches and so does my jaw on and off.  My cheek hurts on and off.  With bright lights my eye balls feel like they are being pulled out so I wear sunglasses as much as I can.  Having botox on May 6 which is supposed to help.

    • marion50354
      marion50354 paula59

      Posted

      I don't understand "the Epley Maneuver proved negative so it's not BPPV for me."  The Epley Maneuver is something you try many times to help ease the problem, so how could it "prove negative." And what shows that it's not BPPV?
    • paula59
      paula59 marion50354

      Posted

      The ENT guy did this thing where he tried to twist my head off and then looked at my eyes and said it was negative. He then referred me on to a neuro surgeon as he saw I had a prolapsed disc at C3 and thought that might be causing my vertigo / dizziness.  The neuro surgeon said it was nothing to do with my neck and referred me onto a neurologist.  This was when the neurologist said I had silent migraine.  I did get the odd massive sinus headache as I had perennial rhinitis, but he decided I had been having normal migraine and this dizzy thing was silent migraine.  This is where you get stuck with the aura that comes before the migraine which causes all the neurological symptoms of pressurised head and ears, vertigo dizziness, jumpy eyes, pins and needles over top of head, creaky cracking jaw and neck, pain in head in different regions, excessive sensitivity to light and noise which makes my eyes feel like they are being pulled out from the front.  But this diagnosis took a year.  Since then Ive had endless epilepsy drugs and beta blockers which had made no difference whatsoever.  They are now going to try botox.  I personally dont know what wrong with me and wish I could get to the bottom of it as Im not convinced.  Its like being on a roundabout without being able to get off.  Anxiety makes it much worse.  Computer screens affect me too and as Im a PA it makes work very difficult at times but Ive managed to not have any time off.  I take pain killers  when the pain is too bad but they dont stop the dizziness.  I have no social life whatsoever.
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