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  • Diagnosed with Vestibular Migraines

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    Old 01-25-2006, 09:57 AM   #1
    Howie2
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    Diagnosed with Vestibular Migraines

    Hi all:

    I have not been on that much lately as I have been real busy at work. I still am doing well, like 3 months at like 95%. I went at my Neuro-Otologist request to see a Specialist in NYC at ST. Lukes Hospital. Pretty reputable hospital in NY. He is a Neurologist that runs the headache institute and specializes in Dizziness caused by the head. He diagnosed me with Vestibular Migraines. He said that you can fail inner ear testing and have this. You are not functioning correctly from an balance and dizziness standpoint which is why you can fail inner ear testing as this test function. He said this can happen the opposite as well. He said most people that have this VRT helps only a little and it does not increase symptoms. (This is the case for me. ) It did help me but it did not increase symptoms while doing them. He said you do not need any headaches to have this...

    He said their were 3 lines of meds and they were 1) Zoloft 2) Verapamil 3) a number of anti-seizure and meds used for blood pressure. I asked why have I improved. He said Zoloft has helped me tremendously. I was actually given this when I was undiagnosed by a pychiatrist for depression and anxiety. I am also on mild amount of Norvace for High Blood Pressure. He is going to switch me to the Verapamil as I need medication for blood pressure anyway. He feels I should get to 100% with this. He also said I will not have this forever. Once the brain adjust with the medication I can slowly come off the medication....

    As far as food triggers...He told me the usual suspects but not everyone gets triggered from every migraine trigger. If caffein does not trigger attacks then I do not have to eliminate this.... See what works by trial and error....

    Just figured I would share my story for those who have not improved with VRT might want to try this..... Also you can have a failed inner ear testing and have this as the main sourse or vica versa....

    Hope everyone is doing well...

    Howie

     
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    Old 01-25-2006, 10:52 AM   #2
    rachel4123
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    Re: Diagnosed with Vestibular Migraines

    Hi. What do you mean by failed inner ear test? Do you mean that your inner ears are functioning properly or that you failed the ENG?
    I am still not diagnosed, but a neurotologist told me about the migraines and it could be a possibility. I don;t have the headaches, but have swaying/nausea on and off for months. I passed my ENG and other tests...
    What are your symptoms?

     
    Old 01-25-2006, 11:02 AM   #3
    Howie2
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    Re: Diagnosed with Vestibular Migraines

    Rachael:

    I failed the inner ear testing.... Most with Vestibular Migraines do not fail this testing but some like myself do. Most of my symptoms are gone..They were blurred vision especially in dark areas, chronic mild nausea, no true vertigo but I felt off all the time. I had mine for 2 years and now am pretty close to normal

    howie

     
    Old 01-25-2006, 11:22 AM   #4
    rachel4123
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    Re: Diagnosed with Vestibular Migraines

    Thanks Howie. How often did you symptoms last? Mine are on and off, usually I have the nausea and the off balance thing for 2 weeks and then its gone for a few weeks then back again. No problem with vision really, but do notice sometimes in the dark I have to focus more...
    Can't beleive they are migraines with out headache and can last for longer than a few days....?

     
    Old 01-25-2006, 11:46 AM   #5
    hbep
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    Re: Diagnosed with Vestibular Migraines

    Hi Howie,

    Great news that your doing so well. Also great that you saw a good neuro, everything he says sounds spot on. Funny that your psychiatrist ended up treating your migraine by mistake!

    I am currently on topamax for migraine but may come off it. One of the meds I might try is verapamil so would be interested to hear how you get on with that. Did your neuro specifically say zoloft for migraine or any SSRI? As that might be another option for me. I'm guessing he probably mentioned that one as you are on it.

    One thing I did want to say is that it isn't strictly true to say VRT won't increase symptoms in people who are dizzy due to migraine. It is, I'm sure, entirely possible that there are some people for whom it won't increase symptoms. But for others it can actually make them feel a lot worse without the benefits that someone who has VN gets. Your neuro sounds like he really knows his stuff, but all specialists come out with the odd weird comment occasionally. I know Mav sufferers who, when symptomatic, really wanted to hurl doing VRT. I'm only mentoining this so that anyone who thinks they may have this problem isn't put off the scent by thinking but hey - vrt does make me feel bad so that can't be me.

    Really hope you carry on doing so well,

    best,
    __________________
    hbep

     
    Old 01-25-2006, 12:09 PM   #6
    Howie2
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    Re: Diagnosed with Vestibular Migraines

    HBEP:

    Thank you for the clarification. I think I worded it a little incorrect. What he said is most people With Vestibular Migraines do not benefit from VRT ..Some do but most do not. He usually gets the patients that do not and are looking for other alternatives. He strictly stayed Zoloft is the main antidepressant that is used to treat migraines and vestibular migraine symptoms...

    I wont be trying Verapamil for a couple of weeks. I am going to my internist in 2 weeks and he wrote me a note to just switch my norvace with verapamil. Since I already am taking a medication for high blood pressure it cant hurt to kill 2 birds with 1 stone.

    I will keep you posted..... Dr is very good. Listed in a magazine as one of top 100 doctors in NY

    How are you feeling ..Any better with your recent decomp event

     
    Old 01-25-2006, 12:21 PM   #7
    gloria2936
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    Re: Diagnosed with Vestibular Migraines

    Hi Howie. Great news as I sent you a reply.

    Howie or Hbep - What is the difference between migraine and vestibular migraine? Is it that the vessel constriction is near the vestibular nerve? Does that make sense what I am trying to ask? Hbep - just curious as I've researched this end a little for myself but don't seem to find any causes for MAV. Do they just not know what causes this condition? Is it hereditary or can a virus or injury cause it? Just wondering if either of you have any answers on this? Ill have to take anothe look at that video on MAV that Scott recently posted.

    Thanks for the information. Again, that is great news Howie and hebp hope you are doing better since Christmas. - Gloria

    Last edited by gloria2936; 01-25-2006 at 12:23 PM.

     
    Old 01-25-2006, 04:53 PM   #8
    studyin
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    Re: Diagnosed with Vestibular Migraines

    Hi Howie,

    Very interesting stuff. So is he saying you never had VN then? That all this time it has been MAV?

    All of this gets me thinking: 1) that an SSRI cleaned it all up for me and 2) coffee seemed to trigger this recent relapse for me along with a computer screen! Could I have some sort of migraine variant as a result of having labs or VN? Man, it can be hard to get a clear picture on this garbage. Just when you think it's sorted too. I'll be very interested to hear how things go for you on Verapamil.

    Cheers...Scott

     
    Old 01-25-2006, 05:56 PM   #9
    gloria2936
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    Re: Diagnosed with Vestibular Migraines

    Hi Scott,

    I just wanted to chime in here to as this stuff really turns you in circles. I wish we could all just find an answer for our problems and get them fixed. I never thought I had migraine as I dont' have typical migraine symptoms and absolutely no history of even having a headache until after my ear infection. Just wondering if VN could cause migraine to happen.

    Gloria

     
    Old 01-26-2006, 06:31 AM   #10
    Howie2
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    Re: Diagnosed with Vestibular Migraines

    Scott:

    Basically what the doctor said is the testing available shows the function of the vestibular system.... He seems pretty bright. He is listed on the top 100 doctors in NY and my Neuro-Otologist told me to go check him out..... I never really had a diagnosis of VN. My original diagnosis was Vestibular Dysfunction , probably central from my testing. So I went the VRT route. Not that this MAV thing comes up the central diagnosis makes sense. I took the Zoloft from the pychiatrist to help with the anxiety and the pychiatrist indirectly helped my MAV

    He said a lot of these diagnosis such as VN are correct first impression as with the capability out your test showed that inner ear functioning is failing. You go through the entire route of VRT and meds for inner testing. MAV patients, usually do not get great results from VRT or these other meds. MAV is then a possabilty when the other things fail. No test to prove this either. He said one can have MAV and fail inner ear testing (I did ) but most cases it is the complete opposite where the MAV patient has perfect inner ear testing. All the tests show is function so MAV can disturb your vestibular functioning. MAV what he said is usually central in nature and that is why the VRT does not help as much. He said MAV patients also have a lot of vision, nausea , fogginess rather than your inner ear patients which have more balance problems and vertigo. I must admit I did not see any real results till the Zoloft. VRT did help but only a little. I am still at 95%. He said you can take 50 MG's to 125 MG's of Zoloft for MAV. I was taking 50. Instead of taking more of that and have side effects or withdrawl he wanted me to take the smallest amount of Verapamil since I was already on Norvace for mild high blood pressure I can just switch to the Verapil. Can not hurt.... A lot this is new and trial and error.


    I will keep you posted. I am still at 95% and looking to get to 100% with this new news..... Sorry if I confused you at all. Trying to tell you what the doctor said but I am not as good as yourself or Subs in explaining these things. I am a finance guy so writing is not my forte

    Howie

     
    Old 01-26-2006, 08:16 AM   #11
    Jill43
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    Re: Diagnosed with Vestibular Migraines

    Hi Howie,

    This is very interesting as this is the same thing I am getting from my Dr. I finally had the balance testing and they found nothing wrong with my inner ear function at all even though I can feel my dizziness coming from the right ear.

    I was also told that VRT most likely would not help me. I have been taking Verapamil for about a month now and have not noticed a change at all. I have so much pain and fluctuating pressure in my ear I can hardly stand it anymore. Maybe I'll have to ask about Zoloft.

    I'm so happy you are finally getting some answers and are sharing them with us.

    Thanks again,
    Jill

    PS I'm a finance girl

     
    Old 01-26-2006, 09:37 AM   #12
    jbbrocky
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    Re: Diagnosed with Vestibular Migraines

    howie- glad to hear your doing well still. I am in the same boat as you, about 95% now for a few months. Do you get head pressure or head achey feelings when you work out at all?

    still gotta get drinks in the city sometime

    JB

     
    Old 01-26-2006, 11:40 AM   #13
    Howie2
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    Re: Diagnosed with Vestibular Migraines

    JB:

    I do not get any extra head feelings when I work out..Actually feel better when I work out. Mine are also head pressure in the front of the head/forehead not achey..... Been working out like crazy lost 25 pounds since November...Another 10 to 15 and I am at my pre-illness weight

    yeah we need to get drinks......especially before june when the baby comes

    The Dr in the city seemed very knowledgable and very confident. He never hesitated or said it "Could be this or that" Straight out said you have Vestibular Migraines

    Howie

     
    Old 01-26-2006, 12:24 PM   #14
    gloria2936
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    Re: Diagnosed with Vestibular Migraines

    Hi Howie,

    Was your pressure always in that same area (forehead). Curious because mine was my whole head at first and then the back of my head the pressure and headaches went away and then my forehead and temples area it comes and goes. Most of the time my pressure is in the top of my head down to my ears. I was hoping that since the back of my head got better and the front and temple area is improving that little by little it would all go away.

    Just wondering if yours was in other places than just the front of your head.

    I too feel better if I can get moving. Maybe by summer I'll work on loosing the pounds I put on from this too. I do walk, but it isn't enough to loose the pounds. I miss the healthclub but still feel to ill to go so I walk outside and use my treadmil on really cold days.

    Take care - Gloria

    Jill - sorry, I was so hoping the new med would help you. Maybe give it some more time. Always thinking of you - Gloria

    JB - Hello - I do get headpain with the pressure. It is usually either headache or pressure or both together, but never nothing. Dizziness and vision are improving though so that I suppose is a good sign. Take care - Gloria

     
    Old 01-26-2006, 03:43 PM   #15
    adamw
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    Re: Diagnosed with Vestibular Migraines

    Congrats Howie.. at least now you can move on knowing what you have and slow try and get to that 100%. I'm sure you will easily.

    The doctor sounds like he knows his stuff - I especially liked to hear him re-iterate that you CAN have inner ear damage with MAV, noone knows why, but the figures are around 20% with abnormal ENG, and 80% without. He is right - the patient who has no abnormality on any testing (audiogram, ENG, MRI) is a strong case for MAV.

    It's confounding, but also very sad to me, the number of people on other forums (can't mention them here) who have this condition and either cannot find a decent, progressive-thinking doctor capable of diagnosing it, or simply themselves are unwilling to believe that something so benign as 'migraine' could make life so miserable. When I was a member of one of these other boards, almost every single member complained of headaches which fit the criteria for migraine. An optimistic estimate would be 50% (pessimistic would be more like 80%+) - since the general population has a migraine incidence of between 10 and 20%, surely this cannot be by chance. It also strikes me as the main reason people are on these boards is because they can't find a diagnosis, or can't find any relief because they have been given garbage diagnoses - Menieres for example is handed out way too often. I know if I were 100% well I'd pop by once in a while to see how everyone was going, but I wouldn't be a regular member. Most who got better would stop posting altogether and these boards would be so much less active!

    Adam

     
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