The Vestibular Migraine Community

New member posting for help, relief and answers


#41

Very good! I was just reading your recent post about the still dealing with dizziness at bedtime :frowning: sorry to hear you’re still dealing with that and I see why you’re looking into the upright chair for sleep. I’m glad your daytimes are better tho without medicine so that’s a direction of progress. Not sure what I can try to offer as advice since I’m still a novice with this exciting syndrome.

Thank you :slight_smile:

I feel my mornings I wake up I’m okay for a good 4-5 hours pending weather (granted I’m not working at all). And right now I’m finally back to working out. In ear Headphones are in but very low volume. I felt discomfort / pain (putting the bud in) in my right ear which is strange so I was careful how I kept it sitting in my ear.


#42

Yeah, not really dizziness, but vertigo… doesn’t happen every night … maybe twice a week … the sensation isn’t violent, but it does bother me only because it means i’m relapsing a little … and i had one bad one recently that took me a day to get over (but that’s so much better than the old days when it would cost me 5 days or more to get over)

your ear pain might have been unrelated


#43

Possibly your brain trying to compensate without the medication?


#44

No I’m pretty sure its a leak into the middle ear and it occurs at night because of head pressure which rises when you recline. It means my fistula is not strong enough yet and/or the pressure in the ear is still too high. Given the trend has been positive so far, though, I look forward to further improvements.


#45

James,
I’ve been keeping up with your posts and I’m sorry to hear your symptoms are starting to hit harder again. How long will it take for the diuretic that you just started to kick in? I was hoping your symptoms would alleviate and heal much sooner for you.

As for me, I saw Dr. Rauch in October and he confirmed it’s vestibular migraines and not Menieres Disease since he had seen the copies of my hearing test, so not much else came from that visit. He wasn’t able to suggest many supplements or background on them, but he handed me a packet about the migraine diet (It was the same packet I received from Yale University). I do have another visit with the Neurologist at Yale University in late November which I want to ask him about CoQ and tell him my progress, since he’s the one who put me onto Vitamin B2 which helped with reducing the intermittent ear pain.

I’m still kind of sinking (imbalance when walking some days, sometimes the glitchy ohhh what was that for imbalance sensation out of nowhere from a motion) (rainy day build ups and days of make my head feel like a helium balloon while being very motion sensitive when that happens and also having my head in a tight vice, with the comings and goings of headaches forming) and swimming (clear days where the pressure is consistent, just tiny glitch motion sometimes).
I haven’t had any full blown vertigo spinning since the last time in early August when I took the magnesium pill which was recommended to prevent migraines, however, I was visiting my brother today at his work and I’m unsure if the dessert which I never had before - Waffle Cheesecake (Very unsure of the additional hidden ingredients - no label. it was gooey caramel, almonds wrapped around cheesecake. Needless to say, I’ve had cheesecake alone successfully before) (eaten 1 hr 20 mins before the episode, which usually I notice slight symptoms 15-20 mins after eating anything not OK) I had caused 2 seconds of vertigo or if it’s the change of seasons in lovely New England + fluorescent lighting that I was under for a good 2 hours when I visited him. When it happened I grabbed his shoulder and he kind of said “what the ?” then he figured I was having an episode as he looked over at me and said “you have to go?” I started walking towards the door to be in the outside world and it subsided. It scared me for sure and I was jittery after for a good 30 mins. I noticed my visual vibration sensation increased too after it happened and also my visual snow appeared in daylight. Right before it occurred I started getting slight zaps / pain as if a migraine was trying to form in the back of my head and moving towards the front and I got really imbalanced rapidly, then out of nowhere the vertigo occurred.
As I write this tonight, I dealt with inner ear fullness around 7 pm (the inner ear fullness usually occurs once in awhile, almost daily so I think nothing of it and that it’ll subside, as a side note, the liquid coming out of my ear feeling occurred a couple times when I was visiting my brother at his work), which then did the feeling of blowing cold air in my ear/sensation of liquid coming out of my ear around 8 pm as it reduced. I showered around 10 pm and that’s when symptoms started to come back-- it started to feel like walking on marshmallows in the shower and the motion sensitivity started to heighten-- I was nervous the room was going to twirl. I quickly rinsed off, then got out. After the shower I had a heightened sense of anxiousness. I tried laying down for a bit (45 mins or so) to help alleviate the feeling but still felt a tad on edge. I continued to lay down and read to catch up on everyone’s posts and the symptoms started to slowly but surely subside. I’m a bit better now as I type this post (12:55 AM).


#46

Awww thanks. Me too.

The diuretic started work almost immediately. I’ve never been to the bathroom so much on one day ever, ahem, lol. It seems to kind of help. Less imbalance but slightly worse tinnitus (expected). Ear pressure dropped very quickly. It’s this I’m hoping will promote healing for me. I still leaked last night but no vertigo. As you know I believe vertigo is a leak but a strong one.

No idea if this will help long term but it’s worth a try. I’ll give the diuretic a month.

That’s good. Yes doesn’t sound like menieres and in any case that’s super rare. Just keep an open mind on what ‘vestibular migraine’ actually is given we don’t have much scientific proof of what the underlying etiology is.

I get that around 7pm too, how odd! Haha. And yes ear pressure usually subsides although sometimes it gives me a little bit of pure tone hum in that ear. My good ear dammit.

Yeah I used to get this during the day. Now it almost waits exclusively for night time which has its own downsides. In my case I believe it’s because the wound has got stronger but it could also be that ear pressure has over time dropped a bit so it takes more for it to leak ie lying down.


#47

Hahaha. I drink a lot of water and used to take caffeine pills, so I can imagine the bathroom constantly.
I’m glad it seems to be working so far in the balance dept. Perhaps the leak didn’t cause vertigo because the leaking amount was decreased by the diuretic? I’m curious to see your progress though.

I’m also glad you mentioned you believe vertigo is created by a strong leak, cause I am starting to think that moreso as well. I was speaking to my cousin the other day who said after having her kid, she notices during seasonal changes of winter to spring and summer to fall she’ll get vertigo and takes benadryl for it to abort. She said she had ear infections a lot as a kid. I mentioned my inner ear fullness and the leaking and she also said she had that too. I believe with the great pressure change from seasonal changes it’s creating a major leak.

I’m hoping the medical technology for the investigation of the ear/inner ear gets vastly better more quickly so that the name “vestibular migraines” has more reason to it.

What is the pure tone hum?

That’s quite interesting! Hope that it continues to heal.

As far as my progress:
I was really upset yesterday cause the ear kept doing the leaking throughout the day (didn’t count how many times, must have been at least 2-3 times) and most of the day I spent light headed/motion sensitive, walking in daylight imbalanced too which hasn’t happened in quite some time. I’m not sure if it was due to the vertigo from the day before or if the continuing seasonal change is still messing with me. I was pretty down last night.

As of today: Tinnitus isn’t as loud as the past day. Lightheadedness isn’t as bad or as long in duration compared to yesterday’s duration. I’m not walking around as imbalanced. Not feeling as many brain pains / migraine sensations as yesterday too, but as I type this I notice it slightly increasing (probably because night time gets worse). Maybe I’m recompensating again as the days go by? It’s just baffling to gauge progress or why certain things occur. I was able to walk normal and all that after the vertigo and residual effects subsided but the day after I was effected a lot.


#48

Single note as apposed to a hiss which is a range of frequencies.

Yeah it really is incredible how it can wax and wane. One thing to always remember is a seemingly terrible phase is always replaced with a much better one and a miraculous improvement can happen within hours sometimes.


#49

Interesting. Got a better idea of the pure tone hum exactly when I googled it. It’s as if you were knocked in the head hard and coming out of it noise. That’s an awful noise to have in the good ear, or even the ear at all that isn’t from music or external sounds.

Ah, yes, the wax and wane-- I’m over it. Haha.
2-3 weeks ago I had a really good week with some glitches here and there, but it was very nice to feel somewhat normal. The weather change / weather build up has been messing me up!
I spoke too soon-- today I’ve been mostly offbalance too (not at much as yesterday) and at least the inner ear liquid feeling occurred 4-5 times and it’s only 10 pm. I just had the inner ear liquid feeling in my right ear too (good ear) for a good 2 seconds.

Do you know of anymore studies / technology they’re looking into further investigating the ear without exploratory surgery?


#50

I was freaked out at first but thankfully it’s intermittent.

Well we known that MRI can now detect Hydrops (well since 2013). I think this will change things up a bit as this gets more widely incorporated into studies of dizziness. Subjecting sufferers of VM/MAV to this scan (so long as it’s safe) makes a lot of sense.

In general I think improvements in scanning both with MRI and maybe even CT will reveal more in the coming decades. There are several assumptions which will get debunked I’m sure.

I’m sure there are even papers out there right now we don’t even know about.


#51

This is a pretty accurate description of how i feel :slight_smile: Are you on any migraine prophylactics yet ? Magnesium should not give you vertigo. You are probably confusing your regular symptoms for side effects.


#52

I’m positive I’m not confusing it, I rarely have vertigo (full on spinning). The last time I had vertigo was a couple days ago after possibly eating something that was a risk on the migraine diet or the fast seasonal change in weather / pressure. Time before that was early August due to the magnesium pill.

I’m only on vitamin B2 400 mg a day in the morning.
I’ve read on here some other people have a side effect with magnesium pills too giving them dizziness / vertigo and I discussed that with the neurologist and he said it is likely. I only received the extreme vertigo that night after I took it. Haven’t taken magnesium through pills since.

I read one person who has received the vertigo with the magnesium pills receives the magnesium intake through food (spinach) which is something I’d like to try.


#53

Dr.Rauch is one of the best docs for MAV. I am surprised he did not recommend you get on one of the preventatives ? BTW did you having your earing tested ? Any deficit there ?

You might be a rare case of true MAV as yours started with the chemical edible you took. IMHO you would be a good canditate for preventatives if the edible screwed up your brain chemistry. My 2 cents.


#54

Dr. Rauch gave me the same sheet that Yale University gave me discussing the migraine diet and preventatives (supplements). He said I could try the preventatives, but as discussed I already tried the magnesium pill with poor results and I was already doing vitamin B2. He didn’t know much about the supplements and said about 1/3 of people have good results with them. He said if I have any questions to send him an email and if I’m still doing poorly or floating by, then we can discuss meds. He said he would choose Topiramate as a prescription medication. I know he has another medicine he also chooses too, but I’m drawing a blank at the moment as to what it also was.
The Dr. Rauch appt felt a bit quick and he noted it was MAV, said it’s a chronic illness and unsure of the timeline when it will heal/change, may get worse or may get better, said to check out the sheet and follow-up with an email if I have questions. That’s about what I got from it.

To note, I did mention to Dr. Rauch that the neurologist at Yale University picked up on the left side weakness I had after the incident and it wasn’t picked up on by the audiologist, but by the neurologist. The neurologist kept reviewing my VEMP results and kept counting something on a chart (I don’t recall what chart it was) and then had me walk in place for a minute with my eyes closed and noticed I was turning to the left.

I had my hearing tested twice in about 2 months together after this all occurred at a dizzy clinic in central CT. I brought those results to Dr. Rauch and he confirmed that it’s not Ménière’s disease. My hearing test came up the same as in 2015 when I had some dizzy spells then, but nothing to this effect by any means.

I just want my brain chemistry to fix back to normal :frowning:
I miss chocolate and peanut butter.
I’m concerned that I won’t be “normal” again.

I did notice I had the leaking feeling 7 (finally counted today) times today throughout the day which is a lot, but I’m still a bit off more so than most days since the full vertigo occurred the other day.


#55

And here’s the crux. I don’t think it’s about brain chemistry. It’s about ear chemistry. I’m pretty sure what the diet is doing is influencing (ie reducing) the endolymph volume in the inner ear. If this volume is too high it starts to impair hearing (evidence: tinnitus) and the balance sense organs (but the latter most of all it seems) Peanuts and chocolate both have a lot of potassium. Endolymph is 75% Potassium. You need some potassium but keeping it low seems to help. The brains reaction to sensory instability is sometimes migraines. On really good days (few) my balance is nearly back to 100% even though I know my ear is not healed. That’s because the brain has compensated largely. But the root cause is surely sensory. The brain is only responding. I’m sure the leakage is due to over pressure in the ear. Absolutely follow the diet and see if leakage feeling decreases over time. Also if possible avoid positional spins (double/treble your pillows)


#56

Interesting i always thought Trauma ->PLF->SEH. Never really considered a strong chemical imbalance can also trigger SEH. That’s a possibility. If that is true excessive stress can cause cortisol which can lead to SEH. As it is documented stress can make SEH worse.

I wonder how much of the perilymph/endolymph is actually controlled by the brain. Could the perilymph/endolymph behave like an independent entity whose chemical changes occur by osmotic permeability alone?


#57

@GetBetter
@turnitaround
Reading some of the stuff you two posted is kind of mind blowing to understand haha. Thanks for posting it cause I’m picking up little by little-- and with this condition, knowledge is power and knowing what might be going on and how it explains why I feel the way I feel. Be it the increase of potassium makes me feel “off” and just the breakdown of how it really is effecting everything internally to create such a disturbance. I appreciate the input!

Oh, last but not least, because of you people, this group, I don’t feel alone. Everyone I know around me has said to me “they’ve felt this way before” because they had only the vertigo symptom but yet not the other symptoms that make up a MAV diagnosis so they say just suck it up and continue forward. This group is much more understanding than that because it’s debilitating and random… You’re a great group of people and I tend to feel alone a lot with this condition and people close-by don’t want to hear about it or they simply say, glad it’s not me, or, sounds like you live in a nightmare.


#58

People say to me now “you look so well”. Presumably because I’m off coffee and alcohol, drink loads of water and herbal tea and try to walk a lot to maximise compensation. But I feel far from well.

PS thanks for your compliments. I understand the basics of the anatomy and the science but not all of the pharmacology and neurotransmissions. I am keen to understand more. What amazes me is how flawed the ear is in relation to recovering from injury. Such a complex system.


#59

No one gets the chronic piece. I always get asked you felt better yesterday, now what’s up ? One of my friends told him last year i was sick and he could not believe i still am.

You kind of have to be your own support sometimes and have a stubbornness to say this wont get the better of me every single day.

I read one of the success stories today where a girl who had this went back to doing ballet and too many Pirouettes make her dizzy. That’s great progress :slight_smile: and we will all get there one day.


#60

Hahahaha That’s awesome. I’d take that. Music, Maestro, please!