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When is this ever over??!!!

Posted , 9 users are following.

cheryl02260
cheryl02260

Has anyone finally been freed from dizziness?

I thought I would be brave and start living my life again and it is not peaceful going out, in fact, pretty scary at times.

Today 5 minutes after getting to church I had to run out.. I could feel the pew moving and the church starting to bob around.

I am soooo sick of this and feel like I should just stay home and give up.

I already gave up on drs because none of them know the answer and all have different ones.

0 likes, 22 replies

22 Replies

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  • alison17886
    alison17886 cheryl02260

    Posted

    Hi cherry i dont know ive been suffering for a year now constant feel as if my life is over ive seen quite a few drs and been no help at all ive lost my job i know how you feel its seems never ending im on nortriptilene and having acupuncture for 6 mths and am still the same x
  • ava47638
    ava47638 cheryl02260

    Posted

    I thought I was getting better but I haven't taken tablets today and it's just as bad as it was before. I had a fair amount to drink yesterday so I can't really take a tablet today but it's absolutely awful, I don't feel anxious though because I know what it is. I'm really worried now because I'm going back to work tomorrow and I am ridiculously dizzy and I use screens all day sad don't worry guys, I think it takes a long time to get over, or so I'm told.
    • pauline59158
      pauline59158 ava47638

      Posted

      Have you thought of giving up alcohol? I've given up everything I thought may trigger it. I'm scared of going back to my normal life, in case it brings on another attack. Agree about Dr's who can't seem to do anything about it. I believe More Research would be good as they don't seem to know what  to do about it.
  • daniel12524
    daniel12524 cheryl02260

    Posted

    Well I have had this issue since oct 2011  some days are better then others.  No you should not give up because if you don't re train your body it will stay the same it almost sounds like I'm the only one that deals with this everyone needs to get out of bed and go do things the longer you stay on your back in bed the longer the process will take to get better .you 100% need to do the exercises that I'm sure the doctors told you about .it was hard for me very hard but I have young kids and they need me so I refused to give up I have been working since January 2013 if I feel good or not.  I could hardly stand my balance was so off I get lock jaw.  I still get dizzy. No where near as bad but you need to work through it.  Just remember we still have a shot we aren't dying .and please stop trying to figure it out it will make you crazy
  • lyn88241
    lyn88241 cheryl02260

    Posted

    I know what you mean, it's driving me crazy too. Church is one of the worse for me too - I think it's the standing for the hymns. Is your dizziness anything to do with blood pressure or heart rate. My gp thinks mine could now be POTS (plus migraine vertigo sometimes) Be strong - think that we may have a better day tomorrow. But I know what you mean. This affects every area of our lives! x
    • cheryl02260
      cheryl02260 lyn88241

      Posted

      No I do not have POTS (been checked) but through my own research I think I could have Migraine Vertigo.. I wish I could find a dr that could figure it out because I suppose that would give some peace plus maybe work on the right diagnosis.
  • ben99468
    ben99468 cheryl02260

    Posted

    Hello Cheryl,  Ben here.

    Please believe that you will get better.  I am in month 16 and I am begining to feel very close to myself again.  I just have some Strabismus ( wandering eye).  And I have a lot of confusion from the "compensation" process,  which impedes my ability to think quickly and clearly.  I have better days than others, but all in all I am way better than I was a couple months ago.  Please have faith in your body's ability to rebuild itself.  Also keep positive about it.  One way to stay positive is to be glad it's not a deadly disease.

    Remember that we each grow at our own pace.  So it only stands to reason that we all recover at our own pace.  Just because the government lumps us all together, say by age, like they did for school, or says we should be over something within two weeks, doesn't mean that we all go at the same pace.  Some are faster than others and some are slower, that is why some terms have been coined like " the cream rises to the top" and we're not talking about milk.  It just means that we each have our own personal level of living this life and it's not the same as everyone elses.    Take heart that the spirit that drives us is good and although we might not understand it all the time, our bodies are doing pretty great things just by being alive.

    Now, lets make sure of a few things to help with the belief system.

     

    1).  Check your diagnosis to see if it fits the pattern of the symptoms that it's supposed to.  Google everything.  Ask questions here on this forum.

    2).  Look at the tests you have taken and see if all the bases are covered. Remember dizziness can be caused by so many different things, from a heart beat to a fever.  A vitamin deficiency can start it, but maybe it's a migraine or cervical stenosis at the heart of it.  Just because you have dizziness doesn't automatically mean that it is coming from your inner ear. 

    3).  Don't expect rapid changes, from what I have seen and experienced it takes a lot of baby steps to get to where you can walk like an adult again.  Don't try to rush the recovery, it's going to take as long as it takes.  --BUT--

    4).   For sure do the exercises, just make sure you are doing the correct ones for your diagnosis.  ie; don't do BPPV exercises if you should be doing VN exercises.

    5).  And last but certainly not least, keep a positive mental attitude on your outlook.  Keep company with only those that care and are willing to go along with your positive thinking.  Make jokes about it to keep it in perspective, it could be a lot worse.  Do those things that you can do, that are fun for you.  We only get one go-around in life, no matter what hand we are delt, make the most of it.  If all you have are "Lemons", make Lemonaide or Lemon Pie or Lemon Pudding etc etc etc.   

    Please believe that the human body is a miracle and that it will take care of itself if given a fair chance. I see people smoke and drink and race around in fast cars, and somehow they survive.  Our bodies are pretty remarkable.

    I hope you will find solice in what I have written here and feel better about yourself as a result.  I am on your side, I'm pulling for you.  Ask, ask, ask and ye shall be answered.

    Take care   Ben  

    • cheryl02260
      cheryl02260 ben99468

      Posted

      Thanks for all your information and words of hope. I have had B-12 and D checked.. Not Magnesium though.. Vitamin D was low end of normal.

      I, myself think possibly Migraine vertigo also some other things I've researched since they are so alike.

      You are right about the correct exercises because I went to Vestibular Therapy withOUT a diagnosis and within 3 days I was so much worse and have been like that for almost 2 months.

      I can say I do want to rush healing because at this moment I am going crazy with missing life and having to rely on others when I am the one who always took care of everyone and the worst of it the HORRIBLE feeling!!

      I wish I could have a diagnosis and the time it would be gone but don't we all?

      Cheryl

  • rocksolid
    rocksolid cheryl02260

    Posted

    Go over a few simple things if you have not already. Get a blood test and have your Iron, Magnessium, B12, and vitamin D level checked. If any of these are low it could make you dizzy. Go to an ENT and make sure it is not an inner ear issue. Look into TMJ which is a jaw condition and look into SCM Muscle which is a muscle in your neck. Both TMJ and SCM muscle can make you dizzy. Remember to stay calm and don't get upset. If you give the dizzyness life it will get worse.
  • paula59
    paula59 cheryl02260

    Posted

    Hi Cheryl, Ive been fighting with it like you for two and a half years.  The jumpy eyes have gone but the dizziness remains.  Ive now got my own specialist to add to the two neurologists and Im keeping a diary of the dizziness which basically is every day.  Its going to be reviewed in three months.  Im having a rest from all the medications which have come to about 9 by now.  They still think its MAV, but who knows.  I wish there was a definitive test they could do to find out.  I think they all just guess.  You have to keep going and try and enjoy what you can out of life.  I know its hard, and the fact that people dont understand doesnt help cos theres nothing to see.  I find it better when Im at work than when I give in and go to bed but its so difficult.  Youre not on your own, we are all there with you.  Maybe going out will get easier for you as you get used to the strange feelings  and not be so scared of them. Your body should start to heal itself too, so you will see an improvement it just takes time.  Hang on in there thats what Im trying to do. 
    • cheryl02260
      cheryl02260 paula59

      Posted

      Yes I can say the fear of the feelings in public can send me home quick.

      How did they come to conclusion of MAV?

      I've come to that on my own as one of my theories.

      Cheryl

  • paula59
    paula59 cheryl02260

    Posted

    I saw the GP initially who said I had an ear infection but when nothing changed, I was referred to ENT and they did an MRI scan.  They did balance tests and they were all OK so they sent me to a neuro surgeon as it showed a prolapsed disc at C3,  He said that wasnt the cause and referred me to a neurologist.  By then I had two panic attacks as I thought I had MS.  I managed to get an urgent appmt with first neurologist who when I told him I was dizzy all the time, had a creaky cracky jaw, had pins and needles in the top of my head and my cheek hurt.  I had jumpy eyes and sometimes get pain in the back of my head as well as some bad headaches,  When I do in some lights I feel like my eyes are being pulled out.  Loud noise bothers me too.I was having trouble with PCs but thats gone now.  I have found anxiety makes it all much worse.  Im at my best on holiday.  I used to have aborted trips to the shops but now I can shop for quite a while providing I can cope with the lights.  So with all that he said I had silent migraine.  All the neurological disturbances all the time but not the headache all the time.  My doctors are at salford royal in manchester.  I was thinking of being referred to a dizzy clinic.  There is one in liverpool.
    • cheryl02260
      cheryl02260 paula59

      Posted

      I do have MS and have dizziness with it but this is different.. I know it is something else and after years of MS also know not everything can be blamed on it.. 2 Neurologists also agree it is not from MS..

      I was thinking either something in my neck or Migraine or both. I have no headaches but I have problems with lights.

      I am on break from seeing drs because I just can't bring myself to waste time for the 6th time but I know I will try again when I regain my hope in them.

    • laurence76206
      laurence76206 paula59

      Posted

      Hi Paula,

      My symptoms sound very similar to yours.  I also live in the UK and am awaiting the results of my MRI/MRA scan.  I have seen an ENT specialist who diagnosed VN but was later referred to a Nuerologist.  He also mentioned something about silent migraine.  I am off to see him again on monday to discuss the results of the MRI/MRA scans, can I ask what MAV is?.

      Best wishes 

    • paula59
      paula59 laurence76206

      Posted

      Hi Lawrence

      MAV is migraine associated vertigo.  I have to go back in three months with my migraine diary, this week I have had a headache every single day without fail.  The dizziness is till there also, My hubby said I have the dizziness from lying on the bed every evening when I get in from work, but the last two nights I had loads of stuff to do and couldnt flop, and was still dizzy so nothing to do with lying on the bed,  Keep in touch Laurence, would like to compare notes.

    • laurence76206
      laurence76206 paula59

      Posted

      Hi Paula,

      I get pains around my head and a pins and needle sensation, but this does not usually last all day and some days are better than others.  I also feel like I am on a boat with a swaying motion.  Unfortunately I have not been able to work for the past 4 months because of the dizziness.

      I get my MRI/MRA results tomorrow from the neuroligist, I have many questions to ask him if they come back clear (and also if they find something).  At present my diagnosis (by ENT Doctor) has been described as Vestibular Neuritis but I'm not so sure.  The best position I find to lie in is face flat down with my head turned to the right, propped up on pillows is not so good for me.  I also find that travelling in a car as a passenger makes me  feel a little better, this is different to what other VN sufferes have described.

      I do suffer with hay fever and am wondering if this has made my condition worse?

      I will let you know what the consultant says.

      best wishes

    • paula59
      paula59 laurence76206

      Posted

      Hi Laurence - how did you get on ?  I think they are giving me gabapentin next.  But nothing else has worked so not holding out any hopes.  I wonder what all this stuff is doing to me.  My pins and needles dont last all day, its just a recurring thing that happens for a few seconds quite often. 
    • laurence76206
      laurence76206 paula59

      Posted

      Hi Paula,

      I saw the Neurologist and both my MRI and MRA scans came back clear, In fact they told me that my brain looked very healthy and is what they would expect to see for someone who is 20 years old (I am now 55).

      The neurologist has spoken about using Gabapentin or some other pill that i can't remember the name of (it began with T).  He also thinks that I am suffering with Vestibular Neuritis  (as the ENT specilaist originally stated).  He is going to prescribe streiods for a two week period.

      The pins and needles around my head come and go but on occasions is there all day (this may be due to allergy?).  I am dizzy most of the time but this varies by degrees over the day.

      I have been doing the VRT exercises as instructed by the specialists but these do make me dizzier so I try to be careful about how much i do.

      I suppose I have to accept that the condition is VN as I do seem to have most of the syptoms described for this which is echoed in comments on the forum by other sufferers.  I Have listed my syptoms below:

      Dizziness (like swaying motion as if on a boat, also tend to want to veer left when walking)

      Occasional pins and needles/soreness around head (also had this in my face at one point)

      occasional pains around head

      occasional upset stomach

      weakness especially in the legs

      occasional nausea

      flickering/jumpy eyes 

      occasional blurred vision

      Difficulty in watching some movements on TV (when camara is going all over the place as this makes me dizzier)

      anxiety and low mood

      difficulty in using the computer for long periods (this makes me dizzier)

      Diffilculty in being in conversations with more than one person (can't concentrate)

      I also get 9occasionally) that feeling of my eyes being pulled out as you describe

      I did go to the dentist when suffering with the pain in my face but my teeth were all fine.  The accupuncturist i see told me that he thought i was grinding my teeth and this was causing the problem.

      All the above does seem to bear out that the problem is VN.

      Hope you find an answer to your condition soon, have you been told what they think it is I would be interested to know?  Did they diagnose MAV?

      Best wishes

      Laurence

       

    • paula59
      paula59 laurence76206

      Posted

      Hi Laurence, yes they diagnosed silent migraine, and then referred to it later as MAV. We do seem to have all the same symptoms and they told me mine are text book.  What I dont understand is, I can have all that going on, as you say on and off throughout the day but the dizziness constantly, but when I come home and lie down on the bed, on my side with my neck well supported, I can watch TV and all the symptoms are gone until I move.  I dont understand that, that to me would indicate its a neck thing.  I too have allergies and perennial rhinitis.  Personally Im convinced its SCM which I am going to bring up yet again at my next appointment.  I think anything involving your eyes, ears and balance is bound to be terrifying as it limits everything you do and going out feels so unsafe and scarey which is so debilitating.  Its no wonder we feel so anxious and like we are dying.  Ive got over those feelings now prob because Ive had it so long but I feel for anyone who is just starting with this.  Nothing else is that scarey, its your worst nightmare.  Id swop for a broken leg any day. 
    • laurence76206
      laurence76206 paula59

      Posted

      Hi Paula,

      It's very strange that we appear to have identical symptoms but have each been diagnosed with a different condition.  Like you I am not convinced that they have diagnosed me correctly (I also think that they are not entirely sure).

      Beside all thye symptioms I described in my earlier post I also get a stiff neck.  The wife took me out today and I just about managed to walk around a local market town for roughly 30 mInutes I did though have to keep sitting down.  I got home and now feel completely spaced out (like i'm not on this planet).

      I too find some relief from the symptoms when laid in a particular position.  This is either face down with my head resting on the right side or laying partialliy on my side with my head resting on the right side.

      Unlike you are am unable to work as I find driving to difficult and I can't sit at a computer for long periods (which my job involves), I am though absoloutely fine as a passenger in a car (which generally goes against most diagnosis of VN).

      I have been carrying out the VN and will try some different exercises to see if they begin tio help.  I should also consider improving my diet further as other people on the forum do eat a lot more fruit and veg each day than I currenly am.  I have though cut out most unhealthy things (alcolhol, less salt intake, caffiene, chocolate  and stopped eating drinking most dairy), not noticed any difference to my symptoms but I suppose this is long term,  I have not though stopped eating cake (as this is the only pleasure I still have).  My weight has also dropped since having the condition by about 9 pounds (this may be due to removing beer and chocolate from my diet for the past 3 months).  Do you take anything for your allergy, I am about to start taking Loratadine.

      Anyway, let me know how you get on with follwing up your diagnosis, what is SCM by the way.

      best wishes

      Laurence

    • paula59
      paula59 laurence76206

      Posted

      Hi Laurence, Ive had allergies all my life but started taking anti histamine about 30 years ago.  I was recently on loratadine but they changed me over to certirizine.  Been really bad past couple of weeks.  In fact my eyes are itching like mad.Ive got opticrom drops but theyre not doing much.  Prob need to see GP.  I cant sit at a PC for long but luckily my job involves me bobbing about so I can get a bit of a reprieve.  Driving used to be bad at the beginning.  I can remember the other cars bobbing up and down as I was driving.  That was awful.  I went to the migraine clinic in harley street and paid privately for botox and that seemed to help.  They explained migraine to me and it seemed right.  Apparently when you screw your eyes up and head you are using your corrugator muscle which threads thru your face and eyes. Underneath that is the trigeminal nerve which gets irritated.  Depending which part of the nerve is affected, causes the weird neurological feelings that you get in your head and face and ears.  So its a bit like sciatica where its actually your back but you feel the pain in your leg.   The symptoms were bad sinuses and watery eyes and a stiff neck which I also have.  It was fascinating.  The eyes being pulled out feeling was caused by the corrugator muscle which threads thru the back of the eyes.  Regarding SCM, you need to google it.  That fits too.  I also have the trouble swallowing which it refers to.  Its the sternocleidomastoid muscle in your neck.  My neurologist did tell me that migraine has been around forever and some famous person in 1640 trepanned his head to get rid of it and some other famous person painted a famous picture while he had migraine.  It was all zig zaggy.  He said no one has ever known exactly what migraine does inside the head.  I have changed onto decaff tea and I dont drink coffee but I havent really given up dairy products as I cant find a connection.  I dont drink but then I never really did.  Now I def dont as it just makes me feel worse.  Im not giving up the odd bit of chocolate.  Ive always felt my headaches were due to my sinuses and two sinutab usually get rid of it.  It is a stabbing pain right inside my eye though that makes you feel sick which they say is def migraine.  But again, why when I lie on my side with my neck supported do all my symptoms go.  Its truly bizarre.  I noticed Im ok driving but when I look to the side, Im dizzy.  Do you live in the north of UK ?
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