1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Long term lab suffer, recent aura migraine. mav info needed

Posted , 5 users are following.

shez32
shez32

Hey guys suffered labyrinthitis on and off 6 years. It settled then flared up last year from a cold. Then again recently from a bug. But its more like my eyes feel sensitive to light and perception feels all off. I'm dizzy moving my eyes and head. I'm stuck in bed most days with it and my anxity is heightened as I'm thinkng all sorts of Things.

Anyway someone mentioned on my lab group about migraine as vertigo as I've had two migraines past year out the blue. They were aura ones and it was awful my vision went all weird too.

Anyone know how i find out if it's this mav?

And what i do. I'm house bound at the moment with anxity and all this extra vertigo and vision sensitively it's making me worry so much.

Thanks shez

1 like, 8 replies

8 Replies

  • Glor888
    Glor888 shez32

    Posted

    Hi Shez,

    Im sorry you're going through a lot at the moment. Have you been to see your GP? Are you on any medication? Your GP will be able to tell you and if need be refer you to the right consultant. Plus they can give you options of what's available.

    Sorry I can't be of more help. But do keep in touch and let us know how you get on.

    Best regards

    Gloriana

  • shar123
    shar123 shez32

    Posted

    Hi Shez

    I know what you are going through, had it for 8 months now, seen 3 E. N .T consultants,  and been to the Audiologist been told I've got Vestibular Migraine Labyrinthitis still have to exercise every day  

    My advise to you do the exercises every day, it helps a lot.  No chocolate chesse citrus lemons, alcohol, don't get so many headaches now 

    been to the doctor about it so many times, he had put me on Pizotifen tablets

    take at night.

    Just started them last week still early days,

    Sorry I can't do any more to help 

    Sharon 

             

    • shez32
      shez32 shar123

      Posted

      Thanks guys. I think it may well be this mav from the info off a few folk that suffer with it and know it Well. Going to try avoid certain foods and see if that helps.

      Thanks

    • shez32
      shez32 shar123

      Posted

      Sharon was yours like mine is with dizzyness and visual issues etc?

      I've been told by ent I hsd labrinthutus and it's been on and off 6 years now. It's not any better judt constantly dizzy moving my head makes it worse. Even when I'm still I'm swaying in all directions. Feels like my heads pulsating. Even tho im still.

      My eyes feel all off lately and seems strange to have aura migraine too.

      Just feel all my perception is off its an annoying dizzyness and persistent

  • ben99468
    ben99468 shez32

    Posted

    Hello Shez32, Ben here.

    Wow, I am very sorry to hear that you have had to suffer with this horrible thing for so long, and now, to know that it has come back and is controlling your life like that....my hat is off to your for coping, I don't know what I would do. But I do think you have come to a very good place to work on finding out all about it.

     

    I have had Vertigo followed by double vision and a feeling of unsteadiness especially when I am on my feet.  That unsteadiness has kept me out of work or a little over a year.  It seems to interfere with my ability to think clearly and quickly, and my job is so demanding upon a keen sense of understanding of mechanical and electrical systems (in cars) that I simply cannot do my job productively.  I still have a lingering feeling of lightneadedness and confusion and fatigue.  

    My vertigo has proven to be quite elusive to the professionals that I have seen.  I have been diagnosed with BPPV, then Meniere's, and now Vestibular neuritis. In all of the confusion over bogus diagnoses I have studied on as many aspects of "Vertigo" as I can, and I have learned a little about it including the headache that I get from it.

     

    In my studies I found that in the US, where I live, our statistics show that only about 14% of the entire population suffer from migraine headaches and of them only 1% get mav, nearly twice as many women as men, until the women reach menopause.  So it is very rare and you will need to have several tests done to determine the cause. ( like you didn't know that!) You must go through all of the tests for Vertigo, starting from simple (?) BPPV tests, which typically mean various maneuvers while a skilled professional watches your eyes.  Then the tests for VN, then the tests for Menieres', adding blood tests, stress tests, mri, cat scan, etc. all the while trying to eliminate the non likely prospects, one by one.  Doctors seem to figure this one out only by process of elimination.

    I don't think this is new information for you, but I wanted to let you know that there are others out (t)here that have it and you're not alone.  I have done so much research that I know the professionals look into hormone imbalances and such things as metabolic rate changes in our brains.  It seems that any kind of change to our delicate balance of brain activities can bring on the mav.  BUT, since you mentioned that you have had set backs due to colds and other minor strains of invasive virus, I was wondering about a very little known cause of vertigo that happens when one of the "otolith organs or semicircular canals" has a weak membrane that is affected by changes to "cerebrospinal" fluid. If so, either pressure or a chemical change can cause these organs to send information that results in a dizziness.  The migraine can be a part of the effect, or a side effect of the problem causing condition.  I don't know much more about it, because when I read about it for my own I seemed to rule it out and went on.  But you might want to check it out.  This condition is called: Endolymphatic hydrops.

      

    Hey, at this point, I want to tell you that I am not a doctor, I'm just soneone who's been studying this "thing" for 16 months due to my own affliction with it.  I've seen so many doctors and technicians as well as actually met people with vertigo, spent countless hours on forums like this one, that I sometimes sound like I "know" what I'm talking about, but in reality, I am just someone who has had a lot of time on my hands, because I haven't worked, and spent all of my waking hours trying to find out all I can about it.

    I wish I could help more, and I wish you well and a speedy and full recovery.

    Ben    

    Emis Moderator comment: I have removed the website details. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • shar123
    shar123 shez32

    Posted

    Hi Shez

    I was exactly the same as you, I still have trouble looking side to side and looking down, I do lose my balance, get dizzyness as well,  even short walks I get very tired, down in the dumps.

    Have you got tinnitus as well 

        

    • shez32
      shez32 shar123

      Posted

      My ears feel fine often feel like they are blocked and need to pop

      Oh also when breath thro my nose it feels like in my right ear like is blocked like kind of the effect u get with seashell over. Only when air is breathed in. Hard to describe but doing it now and it's like my nose is blocked and when I breath throw my nose it makes noose like needs to crackle and pop. No over symptoms.. Apparently I've had labrinthutus on and off 6 years according to ent but folk have mentioned this migraine vertigo from possible foods im eating. I'm terrified I hsve something more wrong

      I'm constantly dizzy and won't leave the house aa my dizzyness too bad it makes me anxious and need to be back home resting against hesd board. Right now it's like my heads pulsating lkke throbbing and swaying and false movements. But am still ;-/ so annoying and no idea why it happen. Dome Some days I csn battle on but it's draining. Phone screens drive me insane latly. My vision is all off from staring at ir all day with boredom to keep me occupied.

      I belive I have allsorts wrong from this vertigo and anxity like. It's destroyed my life

    • paula59
      paula59 shez32

      Posted

      Hi Shez - just tried to reply and it didnt work.  Try not to stress, if you are worried its something more serious, see GP, see ENT and get an MRI scan.  After that you can see neurologist, it def sounds like MAV which I have.  Ive had mine two and a half years now.  It started one weekend after I came off HRT and my relative died.  Just got dizzy and thought it was normal vertigo which Ive had before.  This time the betahistine didnt  work and it never went.  I saw GP, had endless rows about anxiety, then saw ENT for tests then neuro surgeon as I have prolapsed disc at C3 and then two neurologists.  It took a year to get a diagnosis but I was convinced it was something else.  So relieved when it was only migraine.  However, saying that, its so debilitating that Ive had to give up my life and my hobbies.  Im dizzy all the time, problem with vision, so sensitive to light and sound all the time, sometimes pins and needles over head, sometimes ears feel full, sometimes band around my forehead, sometimes splitting headaches.  I did used to have jumpy eyes which was horrendous when I was driving.  Once in work, my vision went when trying to do work on PC.  I spent all year before last in bed at weekend and lost my best friend as she couldnt see anything wrong with me.  Ive now been trying to go shopping at weekends and extend how long I stay out.  Its worked and I can manage a shopping trip.  Cant go back to dancing at night, but I do have some of my life back.  I am much better when I keep going than when I give in to it.  Sometimes it gets the better of me and its always worse if Im stressed.  I know Im not going to die from it, as I would be dead by now.  So basically I put up with it and try and live round it.  Ive had about 9 diff lots of tablets, nothing has worked or I havent managed to tolerate it.  Some stuff makes you really depressed as if youre not already.  I wish it would end, but I keep thinking I could have worse.  Go and see your GP and get an appmt with a neurologist.  Good luck.  It does get better but only very very slowly.  Im better at work when my mind is taken off it.  Absolutely shattered at the end of the day though and have to go to bed the second I get in.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.