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Vestibular Migraines?

Posted , 13 users are following.

dee50000
dee50000

Just a quick question for those of you who have been diagnosed with vestibular migraines... do you only have the dizziness when you have the attack, or is it a condition that makes you feel off-balance all the time?

For me, there really is no difference with my disequilibrium between the days that I get a migraine and when I don't. I know there is such a thing as "silent" migraines, but if I'm dizzy/off-balance ALL the time (as I am), this can't possibly mean that I have a constant migraine.

I guess what I'm asking is can the migraines cause a condition (or vice versa) with your neurotransmitters in your brain where you get the imbalance even when you aren't having a migraine... be it silent or regular? Would preventative treatment for migraines (forgot the name of the pill) help with the dizziness? I get a migraine (visual aura, then temporary blind spots when the auras get so big, then pain) about once every 5-6 weeks. Would they (the medication) interfere with vestibular rehab training? Thanks!

0 likes, 21 replies

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  • gillian76726
    gillian76726 dee50000

    Posted

    I Had an Audiologist who tried,for the best part of a year to say i,had MAV. The drugs he tried either did nothing or made me worse. I used to have verylikemtiukimhave constantmdiziness 24/7 bad  headaches when younger, but whether they were migraines i. Am not sure.  

    eVen so i only get tensions related hadaches now, mainly from neck

    • gillian76726
      gillian76726

      Posted

      Sorry that went though whil,i was trying to correct.  So,i am not convinced imhave MAV as that would mean have one 24/7.  Was annoyed as he wasted a whole,year on this (With only every 3-4 months visits) and whe. Youre suffering long term thats a big chunk out,of your life!  I have  worked out that if i get a headache it makes my permanent dizzinness worse, but its not the headache that's the root cause of my dizziness as its always here, like,you Dee.
  • carina62
    carina62 dee50000

    Posted

    I'm so glad i have come across your post as i feel exactly like you and it's getting me down.  To cut a long story short, i have recently been discharged by my consultant on MRV (migraineous related vertigo), i take 30mg of Nortriptyline every night.  I still feel off balance all the time and am getting concerned about it.  I've mentioned all this to the consultant, i've had an MRI scan and various balance tests, all have come back fine (apart from a small menigioma on the brain which apparently is nothing to worry about and has nothing to do with my symptoms, so i've been told).   My head just doesn't feel right if that makes sense, i always seem to have a 'heavy' head, frontal headaches, block and stuffy feelings, spaced out and just want to have a clear head again but i have no idea what more i can do, it's horrid and i may go back to my GP about all this.  Does anyone else feel like this?
    • alicia1201
      alicia1201 carina62

      Posted

      Hi Carina

      I have been feeling that way for quite some time.  I am 54 so I thought it was related to menopause, post menopause but I am the only one of my friends that has this all the time.  I feel like an alien in my own body.  I suffer from migraines and have for 30 years.  along time...now they tell me I might have that vestibular migraine thing.  I don't know either.  I know before I get one, the dizziness gets more pronounced and afterwards it just back to being crappy dizzy again.

      I just had an mri of my neck,  have had whiplash last summer and I know that my dizziness just seemed to get worse after that.

      Were you in a car accident recently?  did you have whiplash?

      my massage therapist says it is linked to the dizziness from my neck.

      who knows,

      I get soooo tired, I'm worn out  trying to cope with my eyes/ ears/body trying to straighten itself out

      Alicia

    • dee50000
      dee50000 carina62

      Posted

      Is the nortriptyline for the migraine prevention? Or to help with your balance? I have never heard of that. Could your symptoms be caused by sinus problems? I was just with a friend last night who said he woke up with severe vertigo a couple mornings before. When he went to the dr's, they told him his eustation tubes from throat to ear were plugged. They prescribed Claritin (not decongrestion, just the antihistamine) and it cleared right up. He said the same thing, stuffy head, blocked sinuses, headaches, and the vertigo.

      Strangely enough, I have a sinus infection right now (after a cold) and I don't notice and change in my off-balanceness, and I don't have vertigo. I was hoping it wouldn't come back, and it didn't.

    • marguerite43872
      marguerite43872 carina62

      Posted

      Yes Carina. I've just joined and briefly asked about what neck exercises to do to strengthen this area . After 28 years off and on like this and with now the recent fall, sometimes I almost wish for God to take me home. Prayer is my only strength. I wish there were specialists that specialized in the symptoms that we all discuss about here.

  • Pupsicle
    Pupsicle dee50000

    Posted

    It is possible to have a migraine all the time (status migraineosis is a migraine that lasts for more than several days - I know of people who have had it for years), but with vestibular migraine, it is typical to get vertigo attacks between migraines. So, it could be either. Meds may or may not help - there are many options and some help some people while doing nothing for others, it is just try and see.
  • rocksolid
    rocksolid dee50000

    Posted

    Look into something called vertical hetrophoria . Not every eye doctor can diagnose it. Look it up on the internet for more info.
    • dee50000
      dee50000 rocksolid

      Posted

      Thanks, Vertical Heterophoria,

      ++++

      Yeah, Vertical Heterophoria. Thanks. I've looked it up a couple of times at your suggestion, but I definitely don't have that. Eye dr said my eyes are perfect, and I have no problems concerning balance. But I definitely do have migraines rolleyes.

      but I've done that a couple of times. I definitely don't have that, but I definitely do have migraines. Eye doctor tested me completely and said no problem there.

    • dee50000
      dee50000

      Posted

      What the... ?!

       

  • nanci28940
    nanci28940 dee50000

    Posted

    Hello  dee,

    A few years ago I was told by my neurologist that I was "his most classic vestibular migraine patient."  Lucky me huh?  My experiences with VM are pretty much classic - they begin with my vision feeling "off", then comes the aura, which lasts normally around 20-30 min.  Afterwards, I feel somewhat nauseous, but rarely will have an actual headache - just feel a little tired afterwards.  As for being dizzy?  I too have been dealing with this nearly everyday for years.  And as carina said, have congestion, along with some hearing loss and a stiff neck.  Seeing a chiropractor was somewhat helpful, but too  expensive to continue.  I have had all the usual tests, done by a neurotologist, and was told I did not have vestibular disease.  Like most of us, I just try to deal with this, but it is very debilitating. 

    I wish you and everyone else the best.

     

  • dee50000
    dee50000

    Posted

    Maybe it's just my lack of concentration, but I don't see where anyone has said if you only have the dizziness when you have the migraine, or is it a condition that gives you migraines that also makes you feel off-balance all the time? I.E. Does the condition where you GET migraines cause the vestibular problems/dizziness, or do you ONLY have the problem *during* a headache?

    If you get vestibular migraines, what is your experience? Dizzy all the time? Or dizzy only when you have the migraines. Thanks.

    • Pupsicle
      Pupsicle dee50000

      Posted

      I posted this above:

      It is possible to have a migraine all the time (status migraineosis is a migraine that lasts for more than several days - I know of people who have had it for years), but with vestibular migraine, it is typical to get vertigo attacks between migraines. So, it could be either. Meds may or may not help - there are many options and some help some people while doing nothing for others, it is just try and see.

    • dee50000
      dee50000 Pupsicle

      Posted

      Siorry, yes, I must've skipped over that. I no longer have vertigo though, just imbalance and oscillopsia ALL the time - may be the migraines, guess it's a possibility. Thank you.
  • dee50000
    dee50000

    Posted

    P.S. I also have dcreased function of my vestibuular-ocular-reflex and so it could be Vestibular, or maybe it's Ocular from the migraines (I've been told it's probably a condition of whoever's office I'm not sitting in at the time!). Such a complicated thing we humans are... :-)
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