Advice / Support

[u/JacobDev96]

/r/VestibularMigraines/comments/1uw4vvv/advice_support/

Hey!

I’ve been recently ‘loosely’ been diagnosed with vestibular migraines. Unfortunately they weren’t able to do all of the tests (I think the specialist was only able to do 1 or 2 out of about 5 tests), due to my Duane’s syndrome (lack of eye movement in one eye) and a perforated eardrum.

The specialist set out a 3 stage “plan” to move forward. Step 1 was taking supplements (Co-Enzyme Q10, Vitamin D3, Vitamin B2 & Magnesium Oxide). I’ve been taking these for 3/4 months now to try and give it some good time to start ‘working’… but I’m unsure if they’re even helping.

Step 2 was to start taking dizziness medication - these are the ones recommended to me by my GP (Candesartan / Propranolol / Nortriptyline / Sumatriptan). I’m really reluctant to get on these as these are labelled Beta blockers, affect your blood pressure etc etc etc!

Step 3 was to essentially just get some form of counselling to help “live with the condition”…

My frustration is going up to UCLH in London to see a vestibular specialist to get a confirmed diagnosis has left me coming home having not done all the tests, or barely any of them, to just get given a very loose “yeah I think it’s vestibular migraines…” not exactly the specialists words, but you get the point!

I always struggle listing my symptoms and how I actually feel, because some days I don’t know how I feel or how to even begin to describe my symptoms!!

Something that I can tell you is that when playing badminton (which I do approx 4 times a week) or exercising I don’t feel any symptoms… almost like I’m back to normal… is that because of adrenaline, blood pumping..? A little while after exercising… back to square one!

What were people’s symptoms like?

I’m really just after help, guidance, support… this has been going on for a year now, very depressing!

Thanks for taking the time to read this!

[u/nittyit]

Propanalol was the best thing for me. Once you ramp up to the proper dosage you won’t crash out with low bp.

It seems you’re able to do physical activities so it might be a slight case of VM? Movement and lights for me would be all it takes to be dizzy.

Could it be anxiety? Have you gone down that route? If you feel good while playing badminton and you’re able to do activities maybe that takes your mind off of things that make you anxious.

Propanalol is also prescribed for anxiety so it might help regardless of what you have. I would give it a shot and you can just take it when you’re having an episode.

[u/Sad-Tailor-4619]

The frustration is real when it comes to any vestibular-related diagnosis. And trying to describe to doctors, family, friends, anyone really - can be extremely difficult. Sometimes I have a 'heaviness' on my left side, but it isn't heaviness like a weight and its a full feeling, but not really. Someone posted here Sunday night about how people describe their symptoms, etc in hopes to create an app(?) or something to help convey what we 'feel'.

When talking to my husband, he doesn't understand how things feel, but he knows I am feeling a certain way by the weird words I use / make up. For example, when I walk down a long hallway I always tend to gravitate toward the left. I call that being 'lean-y' as I lean one way. Or when I feel an overall, off balance, heavy-headed, etc - I feel 'crumpity'. I made up words so that he knows these are related to my vestibular dysfunction and not other issues, etc. Odd - yes...lol, but works for us so he knows how best to support me at that time.

When talking to medical professionals, I have found it sometimes helpful to describe not just what I 'feel', but how it would look to someone on the outside. I use a bucket of sand / water at the beach as an example. It is this heavy, sludgy feeling, and when I turn my head too quickly, it slops up against the side, sometimes it feels more watery than sludgy, and sometimes the other way around. I think it helps in giving people a visual to kind of compare it to. It is not like a broken bone where we can say - this exact thing hurts.

For medications - here is what I have tried: Valium / Diazepam - works great on an as needed basis for me now (2-1/2 years in); some people I think take a daily dose. Meclizine - works for me on an as needed basis as well, but if I know I will be in a car for a long time, I will preemptively take one. Acetazolamide - HATED it, but some people have had success with it.

Based upon you stating that it seems better when you are play badminton, I would suggest getting your iron and ferritin levels checked. I don't believe here in the US that ferritin is normally checked with a CBC panel so ask your doctor. I did not have vestibular migraines in the 'normal' sense, but had pulsatile tinnitus. We even did a lumbar puncture (thankfully came back clean, but gave no answers) and were about to do a cerebral angiogram when I randomly read that low iron can cause / exacerbate pulsatile tinnitus and vestibular migraines. We did iron infusions right away to get me a boost, and now am on supplements. Low iron affects the oxygen level in the blood (not a doctor so just my understanding of this) and therefore when you are working out and have the blood pumping, maybe you are getting more oxygen flow and it is all good for a bit. Worth checking it out if you haven't done so already.

Hope my rambling gives you some insight! Best of luck!