The Vestibular Migraine Community
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Chronic Migrane or is it..?


#1

Hello All,
Firstly, hello - i am so happy to have found this forum. i live in ireland and finding it hard to locate the right support forum for my condition.
My story is similiar to so many of you all really, after I had my children i developed migrane and hormones had a greater impact on their duration and severity and my primary sympthons were headache and occasonal lightheadness. Fast forward to June 2016 and I got an awful headache at work where immediately i experienced nausea, dizziness and imbalance - found it hard to walk to the bathroom without veering off to the right. this was the start of an acute attack which lasted for weeks and then months of recovery, during this attack i was unlucky and experienced all symptons ranaing from visual focus issues, dyselquibrium, dizziness, pain in right ear, pain all around right eye, scalp tender and so on RHS, vihsual depth and perception were shocking. thankfully my GP at time got me into the care of a balance therapist and began VRT, no meds - at this time he did a number of test son me using goggles, balance stands etc… and i failed all, he suggested that i had migrane. So i began a long, long journey of VRT and to this day i feel it’s been a huge help to getting me back to a functioning baseline. i finished VRT after one year and waited to see a neurologist.

during this time, i attempted to return to work but found the stimuli just too much even on reduced hours - the laptop, the lighting, the meetings and the pressure of performing like my old self was just too much and so i left work. i have two small kids so my priority is my health and their wellbeing - i want to be well for my family. i’ve had an mri of inner ear (due to pain) and brain, and all clear.

after two visits with my neuro the diagnosis is chronic migrane as i have some sympthons mainly eye, head pain, headaches and sense of imbalance about 90% of my month. We are now looking at meds to break things, i do accupuncture, yoga, take magnesium, B2 and find them good, i also stay away from the C foods and it has helped.

the med i’m about to commence is venflazine, to try break this cycle and give me back better quality of life - i’ll start at 9mg adn slowly work up to 37.5mg. i’m nervous about meds, after 22months to reign this in on my own, it’s a huge step for me.

So here’s my question - becaiuse i had such awful ear pain initially, and have this daily sense of imbalance when walking only, plus aurul fullness, ocassional tinnitus - should i go see an ENT and get ears tested? my neuro said it’s all migrane and when i read teh many posts here, i’m inclined to agee with him and maybe going on the meds will see some improvement and prove the diagnosis. i have a tentative apt for ENT in August - in Ireland, we don’t have any neuro otologists so really relying on getting good neuro and ent who understand causes of vest dysfunction.

any advice greatly welcomed, thanks for taking the time to read this.

Nin


#2

Welcome Nin,

Definitely get your ears tested to rule out anything else but tbh there is probably little they can do but to treat the symptoms in any case so you are already doing the right thing.

They call it migraine but be aware the underlying aetiology has not been established and imho this is probably a complex issue with many things affected including ears. This is why this ‘short-hand’ is so confusing.

Post-partum ‘MAV’ is not uncommon.(do a search on this board). We don’t know why.


#3

Thanks so much for the quick reply turnitaround, will do a search on that. All thru both pregnancies, never a headache but once I had my second, migraines went to a whole new level pain wise. I suspect the fact I’m now mid 40’s is causing hormonal fluctuations so may have to learn to accept and keep going day to day. Will keep that ent apt. Thanks again


#4

We mid-40s women do seem to make up a significant percentage of this population. Welcome. This is a very supportive community.


#5

go see a neuro-otologist (or otoneurologist). normal ENT is not specialist enough (they deal with tonsilitis!)

neuro-otologists deal with the relationship of ear, balance system and brain. so go see one of those. don’t know who the best one in the emerald isle is, but here in the UK Dr Surenthiran is the man.

i started meds after 3 months of MAV horribleness. i just thought “how bad can it be, it can’t be worse than this!”

good luck! after 9 months on meds (pizotifen + gabapentin) i am 70-80% better. 90% some days.


#6

PS i forgot to say, regular neurologists don’t have a clue about this condition really. but it is treated as for normal migraine, with some additional advice.
if you can’t find the right Dr in Ireland, and if you get the chance, hop over to London or Kent to see Dr Surenthiran.


#7

Thanks much for the support and advice, have noted the name of that doctor. Great you are doing well on pregablin and you are improving, great to hear success storied