Please can you post all your symptoms of Vestibular Migraines, including durations,just a list please thank you in advance x
This is tricky, because there is debate about whether the 24/7 symptoms are down to migraine (I’m convinced there is something else going on and that something else is what triggers the migraine every so often but others feel the migraine may be the cause of all symptoms - i’m not so sure)
But a vestibular migraine I believe is usually this:
- episodic (frequency differs by person and month - i’ve had them up to 1 every 2 days, or as seldom as twice a month, or none whilst on meds)
- lasts hours (say 2-24)
- strong pulsing in the head element, but usually not that painful, just uncomfortable.
- significant imbalance, you won’t want to be anywhere but in your bed
- huge motion intolerance and possibly nausea if you attempt to move, very uncomfortable to move yourself or to move or close eyes (best to stare at a spot on the wall)
- sometimes you get a lot of tinnitus, or an escalation of what you already have
There is usually an element of ‘fallout’ after a migraine. This can cause an increase in your 24/7 symptoms, e.g. imbalance, for a week or two, but they tend to die down to their baseline level after a few days.
I don’t think these are vestibular migraines:
- feeling of spinning (I think these are part of the underlying condition, not the migraine, and related to whatever is going on in the inner ear)
Due to the lack of sufficiently good scanning technology much of this is contentious.
The 24/7 symtoms are:
- imbalance, mostly felt when walking or standing doing something
- dizziness when turning
- ear pressure
- tinnitus, hyperacusis, sound sensitivity
- motion intolerance
- visual vertigo:
– hallucinations eg floor moving when it isn’t
– intolerance for computer or TV and video, especially scrolling or certain patterns
– increased dizziness or imbalance when subjected to a lot of artificial light, e.g. in the mall or supermarket
– movement of water in a bath makes you feel nauseous or funny.
- you may find crowds challenging to negotiate
- “brain shivers” that fail to escalate to a migraine
- twitchy or tight facial muscles
- feeling of “rocking” side to side when moving or had been moving for a while (e.g. running, on a boat), even though you aren’t rocking.
Medication and/or supplements can eliminate the migraines and lessen the 24/7 symptoms, but the only cure I’m aware of is time (and some swear by exercise and a healthy lifestyle)
I have all of the above symptoms and I mean all… But…I was also diagnosed with bilateral endolymphatic hydrops. Many consults rendered me with a diagnosis of MAV. I do not have Ménière’s disease, at least that’s what they tell me.
I was told hydrops probably caused my years of Migraine. Heal the migraine, heal the hydrops.
I have had an exacerbation of symptoms in the sense that my visual vertigo has become very problematic where it was not so much before. Past three weeks have been rough.
Seeing a neuro-optometrist next week as I do have issues with my eyes that could be contributing. We shall see.
Hope you find some answers!
Yes forgot to mention that my symptoms are also 24/7. Wax and wane but most there on a daily basis…
Thanks for your story, we are still waiting for a definite diagnosis, after initially being told Meniers 3 years ago! Don’t know what to eat anymore.
Had a bad few weeks,attacks every two days,blocked hearing,headaches very dizzy and bed bound for 3-4 hours each time, just started on Amyltriptaline… Life is tough
I’m sorry to hear this. Yes, it is tough but hopefully the amitryptline will provide some relief.
Are you experiencing true rotational vertigo? Also, do you have low frequency hearing loss?
MAV symptoms overlap Menieres and one can also have both.
Hi the vertigo,comes in many forms,spinning, horizontal waves, vomiting but not so much actual sickness now just nausea and not hearing loss x
It is difficult to maintain a Migraine diet as well as a Menieres diet.
I follow both and have lost 20 plus pounds.
I try to eat vegetables, chicken, salads…
I miss my chocolate and Cheeses but do sneak occasionally.
All the best to you moving forward!
No hearing loss points towards MAV. Not that MAV is easy, not at all. I just think a bit less sinister than Menieres due to loss of hearing…
It’s so debilitating and all consuming, we are trying not to think of the future it’s so hard.
What are your symptoms and why do you think you have MAV?
I have not posted mine yet…because i am currently only diagnosed with Vestibular neuritis but i think i have Vestibular migraines too…