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Dizziness way too long.....

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marie04645
marie04645

Can't believe this is happening to me &/or anyone else.. Awful & the dizzy & spacey head is part of my daily life.  I have been seen by ENT doc, twice & he sent me to neurosurgeon (hve bad neck) after brain mri & Cat scan that doc said he didn't believe prob came from neck.  (get plenty of headaches)  My hope is in the neurologist I will see tomorrow. But who knows.  I am a older person & yrs ago I had BPV but that is not what this is.....I had lunch with my friend today & truthfully was not enjoyable,  I was going through the motions.  I need a diagnosis.  Thanks for listening.  Marie

 

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  • jonAustralia
    jonAustralia marie04645

    Posted

    Oh Marie 04645, perhaps I should code this by saying Jon 12945, if you know what I mean. I had this terrible VN two years ago almost to the day and it followed the pattern of violently ill for one day, dizzy for weeks thereafeter and then thankfully disappeared entirely. 10 days ago it returned with a vengeance and this time I thought, I can handle this without going to hospital by ambulance again, just tough it out, and as you know, tough it is. I have drank heaps of water (I do believe that we are fighting a virus) watched my diet for the same reason and get out there and stagger my way for an 8 kilometre walk along the beach every second day, that considering sideways steps, is probably closer to ten kilometres as well as the embarrassment of people thinking that I have started drinking too early in the day. The other afternoon, due to just being around the shortest day of the year, it became dark on my return trip and I cannot start to say how frightening that was without the normal visuals to help my balance. But, I live in hope that, whilst having the occasional headache (I use 1 anti inflamatory tablet) and feeling at times that my head has been pumped up with a bike pump, the symptoms will abate as they did last time. I am not sure if you have studied the diagram of the inner ear and the nerve that takes the balance neurons to the brain (my lay terminology) but it does explain how serious our illness is and makes me so mad at those who suggest that we just shake it off and battle on, not that easy I'm afraid. If you wish Marie, I can give you follow up as to what I did last time (not much I'm afraid other than meds) and how I am progressing this time around. Get well wishes from me to you and all of our fellow sufferers. Jon wink 
  • marlene21102
    marlene21102 marie04645

    Posted

    Marie and others ,go look at this have good read ,I found this interesting ,no good at pasting  but here it is .

           physiological Dizzyness syndrome .

      This was shown to me just last night .

     Whilst on site ,question 

     does anyone suffer from Sciatica ,since having to sit for so lond a period .? 

       Go have that read and come back with any thoughts to it .or any other questions ,you think relevant to the Dizzy probs you have ,no matter how small ,might be clue there .

    • marie04645
      marie04645 marlene21102

      Posted

      Hi- where did you find this site --did you just type in pysiological dizziness syndrome? 

      I was surprised when my family doc  seemed blank when I mentioned a Otologist physician.  I don't think they are well know in our area.

      I had to tell her what cities to find one that is near us.!

    • anne05147
      anne05147 marie04645

      Posted

      my GP had never head of an otologist when i asked to be referred to one.  I am due to see one tomorrow, fingers crossed, toes crossed, hope it doesn't all end disappointingly without any action.
    • gillian76726
      gillian76726 anne05147

      Posted

      Good luck,Anne for tomorrow!! amazing Isn,t it they,be never heard of an Otologist!!? Not sure what diff is betwee that and a neuro Otoligist so let us know what they have to say!,
    • marlene21102
      marlene21102 marie04645

      Posted

      Hi  I'm just back on pad  yes just type it in ,expect by now you have already ,I found it interesting .

        Sad when we all seem to do our own detective work to it .

         Get back let me know what you thought of the read .

    • marie04645
      marie04645 marlene21102

      Posted

      Hi,  I did go to some physiological dizzyness syndrome sites.  Interesting & confusing at the same time.  There are lots of things to sort through while making such a diagnosis.  I thought about this dx too.  When I started all this stuff it was after I had a bit of a meltdown do to very bad neck pain.  Would it last 10 mos?  For 3 days I thought it was leaving but not to be.

        I do appreciate all the feedback I get on this site, don't you?  By the way, I eat peanut butter & jelly on my toast for the Australians here smile.

       

    • jonAustralia
      jonAustralia marie04645

      Posted

      Peanup butter and jelly on your toast? Hmm, no self respecting Ozzie would have that but that is because Jelly in Australia means an entirely different substance indeed :-). We do have Vegemite though and from reading about Marmite, perhaps that should be left off the diet here. This sore neck syndrome that accompanies so many instances of our symptoms and yet I can read no reference to anyone studying its' causitive relationship. Yes there are muscles going up both sides of the neck but my pains are more in the middle. Some early mentions of having electronic massages did seem to help some, anyone have any thoughts and whether they also have either a sore neck or head cold for the duration of their symptoms? Big regards and get wells from DownUnder, so to speak. Jonathon razz

       

  • jonAustralia
    jonAustralia marie04645

    Posted

    Hi again everyone. I am currently suffering a second bout having FULLY recovered from my first VN two years ago. This occasion now enters its' 5th week and slight improvements occur daily, minimal but significant even at 1%. For those who want to update/educate their doctor, here is a definition of an Otologist:

    Otology is a branch of medicine which studies normal and pathological anatomy and physiology of the ear (hearing and vestibular sensory systems and related structures and functions) as well as its diseases, diagnosis and treatment.Otology Source, thanks to - Wikipedia, the free encyclopedia.

    I would personally like to know what the Otologist prescribed exercises are as walking daily has certainly helped. My thoughts are with you / us, all. Regards, Jonathon

    • anne05147
      anne05147 jonAustralia

      Posted

      Hi Jon

      i saw a neuro otologist this morning, UK.  He said that i am getting my bouts of BPPV mixed up with silent migraines, as BPPV won't cause the exhaustion and imbalance i am experiencing with silent migraines and not to get the 2 problems i have all mixed up.  He has put me on nortriptyline 10mgs to start with and i am enrolled in their study they are conducting with the University of Kent and due to go back to start vestibular exercises in September as i am due an operation any week now so had to delay my start date with them.  Then i will be reviewed in November.  It was pleasantly surprised as i had started to think the whole thing might be a waste of time after 3 years of being up and down with balance problems combined with bouts of BPPV.

    • gillian76726
      gillian76726 anne05147

      Posted

      Hi Anne. Glad to hear you had a good appointment . did they do any testing T all?  and what is Nortriptyline?
    • anne05147
      anne05147 gillian76726

      Posted

      Hi Gillian, just the usual walk in a straight line, now with eyes closed, all over the place, march on the spot, now with eyes closed, all over the place, checked my ears and eye reflexes, concluded I have a balance problem, bingo!  Said marmite can effect it, and guess what, had marmite on toast before going and noticed i started feeling the blurry vision etc., (auto suggestion) but i was feeling wonky on the way to appt, which i thought was a good thing as had been feeling OK for a few weeks but yesterday people at work were saying i looked washed out and i did start feeling off balance again yesterday whilst a work.  Nortriptyline is a tricyclic antidepressant which he has px in low dose for silent migraine as in low dose it also works as a neuropathic pain relief.  He said the clusters of symptoms i get with my balance, blurred vision and spaced out feelings are all related to silent migraines and not to the BPPV which i also get and said that it can come on at any age. He asked a lot about my symptoms but i wasn't sure how often i have these attacks or how long they last or the duration so he said i should keep a diary of the foods i eat and the ones to avoid and the effects of what is happening to me.  All i could say for sure was that i felt like i was walking on a bouncy castle most of the time, that i tilt to the right, and that my eye sight goes off and that sometimes my tinnitus is worse than others, and that i get a tension in the base of my skull and behing my eyes and sometimes a pounding feeling in both ears which has become more noticeable more recently, but i am definitely putting marmite on the avoid list, only recently bought a large jar of itsad
    • marlene21102
      marlene21102 anne05147

      Posted

      Hi Anne ,wondered how you got on today ,those headaches ,did wonder if maybe the sinuses over time ,so silent migraines ,I have found Migraleve is far better  than odd paracetamol I've had ,even though I take on extra water when sinuses hurt .So that was interesting to be told it's migraine ,Id read up on them ,hence why I got in Migraleve tabs .

          Good they've invited you on that study ,will you do it ,if op out of the way ,but being end July now. You'd be pushed time wise ,Least Anne ,you've had this chance to talk to them .Thats done .And you know they're seperate issues .With having Tinnitus ,sinuses ,and balance ,you do wonder if they're all combined  apparently not .xx Anne 

    • chris1303
      chris1303 anne05147

      Posted

      Marmite? Oh no, I have that most days....have I got to give it up, did he say why that would affect you? 😢
    • gillian76726
      gillian76726 anne05147

      Posted

      Oh I see, so they didn't,t out you on any machines, with goggles and following red light, or , hot water, and the. Cold water in the a

      ears test, or anything like that?  I only  ask,as your symptoms are very similar to mine, and when they tried me on the MAV thing,mitm was decided that that wasn,t the case.  I could not tolerate the Amityrptline as it actually made everything worse!  I feel that they often use the MAV idea a bit too much.  did you ever suffer with migraines before? And have you gone past menopause?,sorry for direct questions, but it can make a difference if you haven ,t had them ever before.  I was told that if you had migraines in younger years you can still suffer silent migraines (ie no,pain) after menopause, but if you didn't,t the chance is rare to get MAV.  I also get the tension in base of neck, have it in fact today.  That has been explained by the Neuro,Physio  as tension brought on by the constant strain of readjusting balance,  also physical,stress. Which I had  yesterday due,to,heavy  shopping, carrying home etc etc.  I also seem to have sometimes a 'delayed reaction'  to a busy day, and it,will affect me more the next day!  Not had an explanation for that one yet!  I also tilt,to the right,mbut my walking on mattress days have passed for the most part, but it,s still kind of there if you know what I mean. ,I have  just adjusted myself so much to,all is stuff I think, butmitmdoesn,t make things any better really does it?

    • marlene21102
      marlene21102 anne05147

      Posted

      Anne ,I was placed on that med ,good 3 yrs ago ,went had a look back in notepad I've kept ,can't recall now how I felt on that one .

         Now to the Marmite ,big lover of that in the evenings ,well I never ,see how you described your symptoms are me to a tea,read what you'd said to my husband ,his mouth dropped ,said " that's how you say you are " 

          When Dr gave me that med I do remember saying to her " Im not

      depressed " I always thought they were for what's written on the package 

        Really need some education into those kind of meds ,really do .

      Relating to this Marmite,well a big eye opener to one of my favourites I really enjoy ,be hard to pass that up ,but will pass on that for few weeks ,just test that out .ive done that Dairy ,well lactose 3 months ,no change ,but Cream ordinary and even now ice cream  aggravates IBS next day .

          So today this has been good read Anne .Be interesting to see what happens now ,all you can do is put things in action ,and go for it .

          MARMITE 😪 couldn't have been something we didn't like ,brought my 2 kids up on it .😪

    • anne05147
      anne05147 marlene21102

      Posted

      Hi Marlene, i think they are all inter-related.  I did mention my stiff neck but he didn't feel that was part of the problem.  I do feel a bit unsure and am not taking everything as a definite but i am certainly willng to try and give it a go as i hope it will help but i have become more aware that i am having tension at the base of my skull and pressure behind my eyes and he said if we had got to grips with this sooner we could have had a better result but as it is 2 years down the road it will take longer to resolve, like a nail being hammered fully in, it will take longer to remove.  He kept making analogies, like a jug, all this stuff has gone into it over the past, we can't change that but only what we put in it now.  I'm not very good at analogies and afterwards, as my husband came with me, kept asking him what he meant about the jugsmile  Still ever hopeful.  My tinnitus has been very loud lately and my nose is still blocked.   
    • anne05147
      anne05147 chris1303

      Posted

      the yeast, said not to eat freshly baked bread for the same reason.  I haven't had time to research all this yet, so just reporting on what was discussed.
    • anne05147
      anne05147 gillian76726

      Posted

      Gillian, i had all those tests done when i went to ENT for the BPPV.  He said to go to be at the same time, get up at the same time even on days off work, get plenty of rest.
    • anne05147
      anne05147 gillian76726

      Posted

      Gillian, i have the same.  sorry just stopped there to have something to eat.  But i am inclined to think that whatever's happening to me is more than BPPV which i definitely have.  All these other symptoms are visual and balance and feeling not quite in the room and the intensity and duration can fluctuate.  I am 58 this october and in the past 2 years all this has started following physio for my neck when i think she damaged my back but i can't prove it but it was a week after that physio i had my first bout of BPPV and then the ongoing balance issues, but really it's a case of which came first the chicken or the egg.  I am 3 years into the menopause but now have a gynae problem and am due to have a hysteroscopy any day now.  It's all come on top and i feel i may have gone past my sell by date, but i also know that when i'm anxious everything is worsened for sure, it's just that i'm not very good at recognising when i am getting stressed out.
    • gillian76726
      gillian76726 anne05147

      Posted

      Oh okay.  Not sure what he  means about going to bed mane  getting up at the,same  time, but it,goes without saying  we all need to get plenty of rest as we,,re usually shattered anyway!, As far as the neck thing is concerned, i just do my own exercises for that to relive the  tension a bit, but like you I also have the eye thing going on. Not so much pressure feeling, just get a dizzy feeling in them and have to,squeeze them shut for a bit.  Not that it stops  itmhappening, but for that moment  it helps a  tiny bit so can carry on with what I,m doing.. I think the salt thing Mike be why they say  re Marmite to not,eat it.  I carve salt and actually feel I need I, but i have  'good salt, sea salt  or even Himalayan.
    • anne05147
      anne05147 marlene21102

      Posted

      yes, marmite, what a shame, i was taking it for the vit B and iron etc., and have recently moved up from the small jar to a big one.  Will have to give it to the girls at work instead.  My husband suggests Bovril now instead, but i'm not that bothered to go without to see if it helps.  I don't really eat anything to excess so i am going to start eliminating things one at a time and see if this helps and then once i've gone through the list i will start trying to reintroduce them to see if there's a flare up.  After i saw the consultant the person doing the study for the university took me aside to do some visual memory type tests on a computer and reaction times and pattern recognition and some questionnaires about my mood and how my symptoms affect me and how often.  I went to visit my mum and then came home and had to have a lie down, i've just had something to eat and now my syptoms are easing off compared to this morning.  I've just taken the new tablet but won't be able to take it when i have the operation cos' shouldn't be taken with an anaesthetic.  I was going to delay taking it until after the op but that could take 3 to 4 weeks to come through, I don't know what to do, but i'm hoping to go to bed after this tablet and wake up cured.  Silly old me, ever the optimist.  I should know better at my age eh? smile
    • marlene21102
      marlene21102 anne05147

      Posted

      Anne ,yes I'm not up on those anologies ,why not just plain speaking everyone can understand  goes in better first time. Than trying to make sense of what was said ,our brains are haddled enough ,with all this going on ,head feels pinched up ,just trying to cope with it .So you mentioned the neck ache ,see no ones given my cause for having that Anne in 10 years ,I just put all that back to holding up my head from having head virus ,when it felt like a head full of cement ,and to heavy for my neck to hold up on its own .    My tinnitus has been loud Anne ,been lot worse since Xmas ,don't go to bed till early hours due to how high it is ,go and all I am is tossing and turning ,glad I'm not having to get up for work as yourself ,maybe that's what reflects onto your mates at work Anne ,your looking tired etc .I know I get heavy eyed looking ,worse if I've had both tinnitus high and the low ,low going .

         You go tell Dr early enough about the problems ,but if they don't act quick enough. Think we leave ourselves open to treatments to even work longer we have it ,just like what you were told by him today .

         Marmite I have on wholemeal ,gave up white bread yonks back.

         Glad your husband went with you ,always take mine if it's Hsp like appt ,he will jump in with questions .

        Can only do what he says to do Anne ,another who may have got it right  never know your luck ,we're all on a wish and a prayer wanting closure to it xxx 

    • marie04645
      marie04645 anne05147

      Posted

      What is marmite?  I take it a doctor is suggesting what we eat may be aggravating the dizzy situation?

      I thought I was coming out of the woods for 3 days but then...today!

      Not so good.  I had such neck & upper back pain yesterday that I took a half of a tylenol with codeine.  At bed time I took another half.  It doesn't take much of a narcotic typle of med to make me loopy.

        Wondering if the codeine set off the goofy head today?

            I was so stressed out even tho I try not to be I am.  One of my friends said I have not been myself.   Who would be tho I try to put on a smiling face.

      It is a good thing I don't hold a job anymore & feel sorry for anyone trying to go to a job with this crappy condition.

       

    • gillian76726
      gillian76726 marie04645

      Posted

      Marie, Mar its is a yeast extract spread that people eat, for eg on toast.  It,s something  you either like,or hate.,,It is salty so I wonder if Drs are advising against it for that reason? I ink the codeine would 0probably aggravate things.  Maybe you,d be better with Ibuprofen for your back,pain? 
    • anne05147
      anne05147 marlene21102

      Posted

      Hi Marlene

      i took my husband cos the appointment letter said to bring somone with you cos you may not be able to drive afterwards.  Think my husband felt like a bit of a spare part.  Anyway, sorry to hear about your neck, perhaps you GP could refer you for that ultrasound physio that worked so well for me so many years ago for a virus in my neck.  I started taking my new meds last night and my shoulder pain appeared less today.  I got home from work and there was a message on my answerphone to give gynae a ring, so thinking i might be having the op very soon, so will have to stop taking these meds cos' it says don't take if you're having an anaesthetic.  Too late, i've taken one this evening.

      Speak soon.  Anne. xx

    • anne05147
      anne05147 marie04645

      Posted

      Hi Marie, because I have BPPV i thought that was causing the dizziness also between the bouts of BPPV of which i have had about 4 or 5 episodes in the past 2 years, so about every 4 to 5 months i would have dizziness when turning over in bed or lying backwards or stretching and looking upwards. In between i would have balance problems and visual problems and a feeling of not being quite in the room.  The neuro otologist i saw yesterday said i was confusing 2 conditions i have, the BPPV but also silent migraines.  He said it wasn't the BPPV that was causing the other symptoms but the silent migraines and that it was the silent migraines that caused exhaustion and not the BPPV because BPPV doesn't cause exhaustion.  He said there are certain foods that are known to trigger migraines, silent or otherwise and these are known as Chocolate, cheese, chianti wine, caffeine, chinese food, crisps, he also added not eat to marmite which is a yeast extract and not to eat freshly baked bread cos of the yeast.  I have been started on medication to help prevent the migraines and told to try and avoid stress. Most of us are stressed though aren't we?  Also to keep a strict bed time and wakening as this helps relieve extremes and fluctuations which also cause more stress on the body.  That's about it really apart from gong back to do some vestibular exercises to help with the balance problems.
    • marie04645
      marie04645 anne05147

      Posted

      Hi anne.  So you see a otologist.  I have seen a neurologist but she wasn't very helpful.  But that makes sense the silent migraine thing.  My scalp is sore on any given day & not sure if it is from bad neck or the fibromyalgia.

      Some times I see the squiggly lines for about 10 min..light bothers me & loudnest.  That was my norm.  Now here comes the dizzys.  What tests did the doctor do for you?  Thanks again.

    • anne05147
      anne05147 marie04645

      Posted

      He din't do any tests Maire cos' i've had all those done at ENT and he basically said i've been wasting my time at ENT and that if i had seen him sooner they could have sorted me out faster, but who knows.  Sensitivity to light and those squliggly lines and sensitivity to loud noises where it hurts your ears apparently  are all part of symptoms for silent migraines and then comes the dizziness.  It would be good if you could see a neuro otologist just in case you also have silent migraines because squiggly lines and the rest could be the signs of the impending silent migraine that causes the dizziness.
    • gillian76726
      gillian76726 marie04645

      Posted

      Just to,interject Maire and Anne, whomiam sure will agree, a regular Neurologist won't be much help to people,like us, they are more concerned with tumours and brain damage. they don't have much,if any, experience or  much knowledge about the vestibular system.  all the consultants I,ve seen seem,to have those 'own dept' and Don,t seem to cross over in any way to another. Same   goes for ENT. When i only had Tinnitus, I was v.sensitive to,loud or sharp noises, and also the eye problem with bright lights. Even turning off a lamp for example,i,always close my eyes when I do,it.  it has been explained to me that these sound and sight problems we have is due,to our not being in sync anymore, whereby our hearing , our sight (not meaning sight as in the optical sense of needing new glasses), for eg  the messages our eyes give us re movement and light etc., are not all working together.  whether you have Migraine related Vertigo or not, you can  suffer these reactions.  This is why in the vestibular therapy they give you all kinds of sheets with squiggly lines, chequer board patterns etc., as a de see siting tool.  
    • gillian76726
      gillian76726

      Posted

      Desensitising tool. Sorry predictive text getting carried away with itself!!
    • marie04645
      marie04645 gillian76726

      Posted

      Hi  will you please resend me the videos Jon Cabot made....can't find them.  thanks
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