Ok so I’ll try keep this brief as possible. Big Bang was 6 weeks post partum (17 months ago). Sitting on lounge violent head shaking vertigo. No room spinning but my head spinning. Was over with 20 sec later. Then next day woke to feeling slightly dizzy and floating in a way. Gp of course said labs. And this will go away in few weeks. Yeah right! I know know this can’t be labs or VN like I believed for so long. Had ct scan all clear. Had full vestibular testing all clear as well. No inner ear damage. The vestibular report written by the neuro said all clear but highly recommends investigating a possible migraine diagnosis.
Haven’t been diagnosed yet and haven’t seen a neuro or ent yet but here’s my symptoms:
Slight dizziness 24/7
Trouble focusing on everything. Eye sight is 20/20 but kind of like my brain is having hard time taking the whole scenario in where ever I am.
Symptoms increase big time at shops. Or having to talk to ppl and focus on them. Just this horrible feeling like I’m going to fall over almost like a lightheaded feeling
Feeling of being pulled in different directions
The room tilts on me. Feels slanted if that makes sense. A very warpy feeling like someone’s spiked my drink
Slight bouncing feeling when I walk
Anxiety of course from all this
Feeling like I’m not totally ‘here’. I guess like what I read depersonalization is, but not anxiety related more vestibular related if that makes sense
Alice in wonderland syndrome sporadically where objects and ppl’s faces shrink super small before my eyes. This doesn’t happen often and I had this as a child a few times from memory.
Had what I now know as ONE ocular migraine 3 days before I found out I was pregnant with my last bubba (well before the dizziness started) I started to get funny vision where things started going black peripherally. It got worse over 2 hours then it just disappeared. I had no idea then what t was then found out I was pregnant 3 days later so chalked it up to hormones causing my eyes to have gone funny. Nothing like that since tho
I don’t have episodes or attacks that i can identify. No headaches. I don’t have phototobia. Bright lights don’t bother me
I sleep well. No ear symptoms. No true vertigo except the Big Bang way back. Driving I’m almost completely symptom free.
My balance is perfect. I don’t fall over or crash into things it’s just all feelings in my head.
Can all this still be mav?
I went through hell last year after a stupid gp said to me it could be a tumor or could be ms. There started my intense fear that this was either of those things. I went on citalopram for 5 months and it helped my anxiety but not the vestibular symptoms. Learnt to avoid drs out of fear of what was happening to me. I wanted to bury my head in the sand.
So now here I am 17 months later pregnancy again and it’s twins. Pregnancy has lifted some of the symptoms for me. I am absolutely petrified that this is going to get worse at the birth. I will have twin newborns to look after and my other children all under 6. Someone mentioned mav on another forum and i didnt believe it. Ive never had migraines before. I thought i have to try anything so i am strictly on the migraine diet now except for caffeine. Yet to pass that one up yet. I guess the diet is kind of helping. While I’m not a severe case or suffer as some others do its totally ruined my life so far. I dont want to go anywhere or see anybody as it makes the feelings worse. I am like this in varying degrees 24-7 Since it started. There’s been no break in it at all
I guess I just need some support and opinions. Feeling very alone and scared
So I’ll give you my input. I’m a bit of a vertigo rookie, but even to me some things seem obvious. First, trigger identification is crucial. For many, stress and anxiety are huge triggers. It’s pretty clear you have a handful of both. My recommendation is seeing a vestibular rehab physician. They will understand what you are going through and will explain some things about your symptoms and work with you to identify triggers. Get a recommendation from your VR physician for a neurologist who understands vertigo disorders. Work with them to help ease your anxiety and overthinking as well as attempt ways to manage your stress.
It’s very easy to make yourself feel horrible when you let you thoughts take over. Being informed and talking with someone who understands will ease your anxiety greatly. Try to be aware of how you feel in the moment and try to be aware of when you are thinking about how you’ve felt or might feel in a particular situation. Differentiate between actually feelings and thoughts of feelings. Your mind it’s very powerful, and with a vestibular disorder it’s important to not let it get the best of you so that you can focus on your true symptoms.
Thanks for your reply. I guess I’m hesitant to start VRT as from all the reading I’ve done it seems VRT isn’t helpful unless you’ve been a good migraine regime eg diet and or meds. I’ve been on the diet for a bit but Ill try it a little longer before taking next steps. My gp says to concentrate on pregnancy then deal with specialists afterwards if the prob is still there. I guess he must think that whatever I have isn’t life threatening etc
Does my story sound like VM? Would love to hear from others who’ve had children or been pregnant with VM.
Your migraine dizziness sounds so much like mine it’s eery. The only difference is that I am not pregnant.
Mine started 2 years ago (had regular vision/headache migraines during puberty- but those went away) and at about age 27/8 I out of nowhere started being dizzy 24/7. It went on for about 6 months before anyone could diagnose it as migraine.
I had all the weird vision sensations you talked about, basically my eyes feeling ‘off’ from what I was looking at.
After ruling out everything else my ent finally suggested migraines. I still have a hard tim believing it.
She put me on amytryptiline. I have been on it for about a year and a half and it has brought my life back to normal (15-20mg once at night). Knowing that this migraine medication worked in decreasing the sensations I could finally believe that migraines were the cause of my problem. It confirmed that and also helped to decrease my anxiety - no more wondering.
I am currently trying to wean off of it - as I am thinking about trying for a baby in the next few years. But, the dizzys are returning as my dose becomes lower.
I have read people take it while pregnant, or there are other options that are similar.
Hang in there. I know this forum helped me a lot when I felt totally alone and confused about what was going on and hopefully some pregnant migraneurs can chime in on their experiences.
All I know is mine is absolutely triggered by hormones - which makes me a little terrified of getting pregnant.
Days my hormones are changing or dropping bring on the dizzys - that and caffeine - I’ve cut that out entirely
Anyways… hope that helps!
feel better + make sure you get a doctor who is well versed in migraines - atypical
Oh Laura thank you for replying. Makes me feel a little better. So glad to hear you are better on Ami. I’m going to book in with a neuro that I’ve read someone else uses on this forum. They are well versed in VM so hopefully I will finally get a diagnosis and some sort of a plan to fix me. I hope the birth doesn’t make matters worse but unfortunately I think hormones are a huge trigger for me too. Seeing as all this started post partum for me
Just wanted to follow up. I’m not really endorsing VRT, although I am experimenting with it, I cannot yet comment to its effectiveness. And I’m aware some people tend to feel worse, though I personally have not experienced that. However speaking to someone it a VR clinic was a good first start for me since they were able to understand the types of symptoms I was describing. Which helped me branch out and provide information to other physicians. It was easier to start attacking the real issue instead of trudging through useless appointments.