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

Vestibular migraine...what are your attacks like

Posted , 13 users are following.

emmy30
emmy30

Hi,

I have been suffering for almost 2 years now and it is truly debilitating.

I have dizziness (not spinning dizzy, off balance dizzy) I get very bad attacks, but what i struggle with the most is the aftermath.

I have questions for all you fellow sufferers:

What are your attacks like

What are you signs that a attack is coming

How bad/ long does the aftermath "hangover" last for.

Have you found anything (not talking about medication) that helps ease the aftermath.

Looking forward reading your responses, i truly think this condition should be more known by people and doctors.

1 like, 31 replies

31 Replies

Prev
  • clair52750
    clair52750 emmy30

    Posted

    Hi. I don't usually get symptoms of an attack happening it just happens. The aftermath is horrible and can last a few days to couple wks.! I got a rehabilitation programme from the audiology department at hospital which is simple head excersie which helped a lot. Could be worth seeing your doctor about!

    • emmy30
      emmy30 clair52750

      Posted

      The rehab exercises helped me alot, especially with day to day dizziness. I had a major issue with the blinds at work and patterns on the carpet. I can now deal with them. smile

      I have come along way since it first began...easy to forget when I get so ill.

      I am. glad you said the after effect can last a few weeks.for you to. Do u get sugar cravings during this time at all?

    • clair52750
      clair52750 emmy30

      Posted

      Hi Emmy. Yes sugar cravings are mad lol. As my partner is diabetic I usually just have some of his glucose tablets which are better than eating a bar of chocolate or other sugary things. Low in calories. Few diff flavours too I would recommend trying them instead
  • Dbmetsfan
    Dbmetsfan emmy30

    Posted

    I sympathize with you. These dizzy times are horrible. They usually come on without warning but once they do I am positive that anxiety kicks in and makes the symptoms even more intolerable. It is like a vicious cycle. Good luck 
  • JohnIsCooper
    JohnIsCooper emmy30

    Posted

    Hello, Emmy although I have bad vartigo from Lyme disease I did have something else before back when I was 14 and it had something to do with low blood count basically when I stood up I got dizzy and everything went dark for a few seconds the first time I experienced it I was in shock however later I had a blood test done and it revealed that my blood levels were very low not sure if white cells, red cells or blood in general as I was 14 however it got better but it never went away later on (5 years later) I learned that it was blood pressure a year after that I learned that the condition was called Hypotension. I suggest you look into your blood pressure as it can be the cause of your dizziness it's probably a common cause as well.

  • patty818
    patty818 emmy30

    Posted

    Hi Emmy

    Your right this is an awful disorder and with all the people that seem to have it, there should be answers.  

    When I get hit with a bad day or attack, I ususally don't have any real warning, I will get tired and more irratable (if thats possible) and get a fast kind of dizzy feeling in my head that lasts about 15-30 minutes then the headache will start and then it usually last 2-3 days.  The residule for those days is a floating kind of feeling and some bobbing up and down esp when sitting.

    I don't know if you take meds, but I don't not on a daily basis, I've found all I can do is rest and stay as calm as i can and wait it out,  at night I usually put ice gel packs on my neck to help the neck and head aches.  

    I know that when the attackes hit, I get upset which makes it much worse, so I'm trying to stay calm now and hoping it won't last so long.  

    I seem to get bad attacks about every couple of weeks, but have daily sensations of floating, bobbing, leaning not so much in my head but through my entire body.  

    I have MAV and slight MDDS so my ent tells me, and I do VRT every day a couple of times a day and it seems to help.  I hope you feel better and can find some relief.  

    • emmy30
      emmy30 patty818

      Posted

      Hi, what's is MDDS?

      I honestly feel there isn't enough support or knowledge.iut there for people.

      I am about to start a new batch of meds, trail and error smile I will try ice packs next time it happens.

      Do you get issues with your speech? Also how do you cope with working.

    • patty818
      patty818 emmy30

      Posted

      Hi

      MDDS is Mal de debarkment syndrome, it happens usually after a cruise but can happen spontaneously.  I think the reason my ENT thinks this is because of the rocking/swaying sensation i had when this all started.  it went on for about 11 months feeling like that, but the VRT has helped.  Now I have the floating and bobbing sensations, The entire mess is just awful.  

      The gel ice packs do help if you have neck pain and upper shoulder aches.  Also I use aspercreme on the neck and shoulders, it relieves the pain and helps the headaches.  

  • arria
    arria emmy30

    Posted

    Hi Emmy, I am headed for 5 years constant off balance dizzy (except when lying quiet in bed in dark).  I have never found medication to work, I drink more ginger. My left canals are kaput, I do not get attacks, its permanent, we are all different.

    I have to watch for hypotension (drink more water and salt) and fainting.  all the best

    • emmy30
      emmy30 arria

      Posted

      I am.going to reduce my salt intake, just taking baby steps at the moment as I have out on a good four stone since getting Ill. Originally it was the illness, morning able to exercise and sugar cravings but now it is just comfert eating. Trying to put that right as well as reducing salt to see if it helps.

      Thank goodness I do not have issues with fainting, stay safe.

      Emily

  • emmy30
    emmy30

    Posted

    Just to clarify,

    I am taking medicine but it is trail and error and about to start taking some new stuff so cross fingers.

    I have kept a diary of my recent attacks and found the following.

    Warning sign - I have noticed that I start to stutter and can't get my words out well, it's only mild but enough for me to notice. This normally indicates something is going to happen. Also the big indicator is the complete inability to walk in a straight line. Alot.like gravity is pillinge.to the left.or right no matter what I do.

    -Attack - any movement makes. me.feel ill

    • nanci28940
      nanci28940 emmy30

      Posted

      Hello emmy.  I just wanted to mention to you that your symptom of speech problems, like stuttering or being unable to get words out is often the result of migraines.  The term for that is migraine associated transient aphasia.  Read up on it so that you will understand.
  • helsbels80
    helsbels80 emmy30

    Posted

    Hi Emmy,

    You are right, there is not enough awareness out the regarding Vestibular Migraine and it's forums like this where I find a bit of comfort knowing there are others out there too.

    I've suffered with different forms of migraine since I was in primary school. I'm 37 now.

    I started experiencing the horrible vertigo symptoms 2years ago and in that time was off work for the first 3 months as couldn't focus properly enough to drive, let alone go in the office to do my work.

    After having the balance test, i was finally diagnosed with vestibular migraine in March last year. My symptoms eventually eased and as far as i was concerned had gone after seeing a Neurologist 1 1/2 months ago after changing my meds and getting the dose right. I came off the combination pill and was on Nortriptyline.

    Going back to whenthis first started, I was told to cut out all frigger foods for 6mths which I did ad found that citrus fruits were my trigger. Even the slightest bit of lemon juice on a prawn salad was aweful before christmas.

    My symptoms cameback the week before last are changing daily. The feeling is either like you feel when you're so drunk from a night out and you get into bed with the room spinning, or ive been on a ride at a fayre ground spinning around and I can't get off.

    I'm going back to the doctors this morning and am going to ask for them to refer me for Vestibular retraining. I read up on it before and when mentioned it to the neurologist, he put it in the report to my GP if my meds didnt work to refer me.

    I thought i'd finally got shot of this horrible condition, but again through reading posts on forums, it sounds like all you can do is try and manage your condition 😠

    • rocksolid
      rocksolid helsbels80

      Posted

      There are groups on facebook. Just type vestibular migraines and you can join them. The people there are great and helpful.
Back to top
Prev

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.