Anyone with Migraine associated vertigo & have all these symptoms?

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Hi

I'm having a pretty bad time right now.  I don't if anyone here has this disorder and can help me.  I have had this 2 yrs this month and I'm so  tired of waking up everyday with something to deal with because of this. I've been on propranolol for 7 months and its helped the headaches but has stopped the dizziness.  These are the symptoms and sensations I have and have had.  Most of my symptoms are when sitting & standing

Rocking/ swaying

Bobbing up/down

Feel like Im floating on a raft going up/down waves

tilting sensations (this just started the last 2 weeks)

Being pushed feeling

dropping feeling

fair ride feeling, like going side to side real fast

leaning feeling

Looking at the computer or phone screen & it looks like it very slightly tilted

Headaches

neck aches

tops of both shoulders feel tight right before bad vertigo

Nausea  (this just started again)

can feel movement feeling in my entire body

swimming feeling in the head

moving head up & down when working at computed dizziness gets worse

Constant anxiety especially if dizzy

sinking sensations

When sitting i feel like I'm being lifted from the back of the seat and going forward

Vision is off at times

quick spin feelings

head pressure

Just plain fear of symptoms

sensative noise and lights

The diagnoses of MAV/VM was made by neuo Otolaryngologist, he specializes in dizziness and vertigo, but sometimes I wonder if all these sensation and symptoms sound like migraine associated vertigo, altho in looking up symptoms that is what it is.  I guess with having it so long and how the sensations change I just question it.  So I come here to see if anyone else has all these sensations or have had with your MAV?  Thanks for any help or advise.

 

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8 Replies

  • Posted

    Hello Patty

    What a horrible time you're having, I have some similar symptons to yourself and have also had it for just over two years. I have been through many different tablets but do still take the propranalol. I eventually went to see a chiropractor who has been my sanity. I got diagnosed with cervicogenic headaches from a neurologist about a year ago. I first had an anaesthetic injection in my neck which unfortunately didn't help at all. I now have thirty odd injections in my head and neck every three months (in fact my next lot are tomorrow) I find these help me immensely and instead of the constant headache, dizziness, nausea etc it is now intermittent, it is so good to have a little relief inbetween. The injections only last about 10 weeks and then the original symptons start creeping back in.

    I do hope things start to get better for you soon, sending my best wishes from a fellow sufferer. 

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    • Posted

      Hi Jude

      Thanks for responding.  I don't have all the things listed, but have had the sensations in the past.  Right now its the tilting to the right, going forward feeling when sitting, the normal shoulder, neck and head aches that I get before the dizziness hits bad.  We have awful weather here in the past week and a half, its rained and been clooudy everyday except last thursday and yesterday and on those days I felt better.  I really think the rain front sitting on us is causing a lot.  Do you have worsening problems when it rains?  I did some kind of steriod injections in the lower skull and shoulders before and the steriod took out all the thyroid meds I take and really messed things up so I don't do any injections anymore.  I was having improvement for a few weeks before this rain came it and it all went crazy again.  I had been tracking it all on a dizzy app and I had actually not tracked for almost a month, which told me things where better.  My mom is also terminally ill and that is causing lots of anxiety and stress and as we know those things are not good for this disorder at all.  ARe you only taking the propranolol?  I tried ami and klonopin and could tolerate them.  I'm going back to my doc on Monday next week and see if any thing else I can do.  I also did VRT and it helped then I stopped when I stared the meds thinking that would cure it.  I'm thinking I might start VRT again at home.  

      Thank you for taking the time to respond, its always good to talk to someone else, so you don't feel so alone, esp when your going through a bad time.

       

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  • Posted

    Hi Patty, I am so sorry you are feeling this way.  I have some of your symtpoms and also some others'Here goes........

    First I get a quick dizzy. The  my face fills up with pressure. My left ear plugs and then I am all off balance. This is a daily thing. Some days worse than others but still everyday. This has bee going on for many yearsbut the last 2 years have been way worse.

    I also have that swaying thing that really makes me feel like I am on a boat when I am walking.

    Been to 3 ENTS,   useless.....

    went to a neuro a couple of years ago. had mri and catscan done....nothing

    He thought it mnight be migraines, but I never have a headache.

    I do get ocular migraines which I have realized they are seasona    But no headache follows. Just the craziness in my eyes for about 20 minutes

    I also get seasonal posiyional vertigo . Both of these are usually March/April, and then again in Sept/Oct.   Weird eh?

    The vertigo last about 3 weeks but is only triggered by me rolling onto my right side in bed or sitting up from bed.  

    'idso suffer from anxiety though and now in the process of weaning off 2 medications as I want to have a 2nd attempt of an ablation for my tachycardia that also started 1 1/2 years ago

     

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    • Posted

      Hi

      It sounds like you've got all kinds of symptoms also.  Have the diagnosed anything?  Have they checked for BPPV, esp since your getting dizziness when rolling on to one side and getting dizzy.

      I didn't think I had migraines, until I realized the tension headaches that start in my neck are migraines.  What I have a hard time understanding is if this is all silent migraines, then how can we have all this stuff almost daily.  Who has a migraine everyday for months.  

      I hope you get your ablation done and it all goes well.  

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    • Posted

      yes they said BPPV.  Just weird that it a seaconal thing. I have the exercises for that, and I also went on Serc.

      You are exactly like me. If this is silent migraines then how can you have this daily.  It sure stirs up my anxiety when it happens.

      I also think it has to do with the weather. When there are tons of clouds moving, it is bad,  and also when the clouds moves out to pure blue skies, it is bad.   So guess what?  it is all the time

      Also I think some of it has to do with barametric pressure.

      ENT's are useless when it comes to all of this

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    • Posted

      I also have BPPV, thankfully the eply helps, but it always comes back.  

      My anxiety is awful when I"m dizzy, which I'm sure doesn't help, but I think its part of the disorder and it just comes on when it wants.

      I know the weather effects me,  I live in Florida and the weather can get crazy and it can rain for days.  I'm sure the barometric pressure is the problem.  

      I'm not sure what type of doc to go to next.  I've been to a neuro otolaryngogolist, a neurologist who said I have chronic suggestive dizziness and wanted to fill me with benzo's, a gp, a psychologist, a psychiatrist.  I'm lost as what to do next.  

      Some days I feel ok but on these constant days, I feel down and alone.  People try o understand but I know they don't.

       

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  • Posted

    Patty you are not alone. I have most of those same symptoms during my MAV. I have even fallen and broke my ankle. It can be frightening and dangerous if you try to move around. I have found myself crawling during an episode. I can't offer you any solution because my doctors have exhausted most options. Best of luck.

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