The Vestibular Migraine Community

Ongoing vertigo issues by a newbie


#21

Hi Cheryl. Thanks for your reply. It certainly makes it easier to know we are not alone with something like this. Mind you I guess it could be worse. There are far worse illnesses out there but it’s scant consolation at times.

I would just like to know what the consultant did with my ear that day. Until then things were getting a bit better but he rubbed my ear, asked if it made me dizzy but to be honest it wasn’t too bad but from that day every day bar one has been regular bad spells most noticeably this scenario of looking left - spinning, looking centre - ok ish, looking right - nice and still. During these episodes my head feels very heavy as well, almost like there is pressure. Very strange. I also have this sensation sometimes of if I look left my left ear squeaks, almost like there is wax in there, I may ask my GP if I can have my ears syringed, it can’t hurt.

On the one day I was fine last week I wondered if it had been because due to a bad hip I had slept on my left side, whereas I usually lie on my right. I felt fine all day but I tried it again and it didn’t work so that’s another theory gone,. I am also going to ask my GP if my blood pressure can cause the vertigo. I have noticed a possible connection between my diastolic pressure and my dizziness,. I note that when things are ok my diastolic is in the low to mid 80’s but when I am dizzy my diastolic is in the high 80’s and even peaks mid 90’s which isn’t great to say the least. My GP has never been worried about my BP though saying high BP is diagnosed if it is “always” up but I will ask him about these spikes. Of course I am not sure if this always happens and there is nothing to say the Vertigo causes the BP to rise, the BP causing the Vertigo or nothing to do with it.

The other thing I notice is that once in a while I go for a drink with friends. After a few drinks I should be falling over, but alcohol doesn’t make it worse, in fact it seems to make it slightly more stable. Maybe something to do with the fact that alcohol relaxes you. Maybe I should just keep a bottle of Jack Daniels handy at all times !!!


#22

Chris how you doing now?

I’m convinced a lot of MAV could be BPPV. BPPV can be chronic, wax and wane AND cause migraine … I think it’s what I have for sure


#23

Hi Turnitaround thanks for the message.

Touch wood things seem to be slightly improving which is somewhat fortunate considering I failed my Tribunal for ESA! You have a real battle convincing people that you have a problem when it’s a fluctuating condition with no real outward symptoms for others to see.

The last week and a half or so hasn’t been too bad. I’m still not quite right but my vision has steadied and I haven’t had any major spins (touch wood). I have had some heavy headed moments when I have thought here we go but they are usually after a cough or sneeze and fortunately they don’t develop into anything. The rumbling tinnitus seems to have subsided as well and I usually got that prior to an attack. My sleep is much the same though and still have the insomnia so it’s not all good but a bit of progress.

Still though have this strange cracking noise in my ear if I look over my left shoulder though. Feels like something in the middle ear stretches or something most odd.

In the past when I have had attacks it usually cleared up after 8 months or so. This time it’s been a year so maybe a longer recovery period I don’t know. Could be BBPV but what I will do this time is still keep up my appointments even if recovery continues to see if I can get to the bottom of it.


#24

Hope it gets better for you.

I get an occasional tick sound. Ears are weird. Lol


#25

How bad is yours, what sort of spinning/symptoms do you suffer?

Funny thing with me is that I have been partially deaf since I was 2 and never suffered from any other ear problems until this vertigo thing hit when I was in my 20’s. Then it righted itself and came back around 8 years ago. Weird.


#26

Blumin ears! So unreliable.

Mine varies from slightly dizzy (just feeling not quite ‘right’) to total motion intollerance and have to remain in bed. The latter seems to happen once in 6 months for a few days. I very rarely feel nauseous. I have plenty of days where I feel quite off.

I sometimes get mini-spins when seated and sometimes when I’m on my side in bed I get the spins, which resolve on turning back onto my back.


#27

Not too far off what I experienced. Know that feeling of not feeling quite right very well. Rarely nauseous myself as well. Only time I was I had a real spinning session that was bad when I closed my eyes as well, which in itself is rare and that contributed to the nausea.

My improvement seems to be continuing. I have been probably 90% normal over the last week or so and that low humming tinnitus has gone although my usual tinnitus is sill there. The creaking sound is still there but on the whole I am a lot better. Have a few brief pressure moments in the head when I think here we go but fortunately none have happened. Problem with vertigo is that you never know when it will kick in again and why. I have no idea why things have suddenly improved but I am not complaining!!


#28

Hi…had similar night time attacks - pains in head/feeling sick/pins and needles…Ive had the Eathquake “as described on here” while sitting at work.

I think a lot of people try for one answer when u may have multiple versions of vertigo - I have two - possibly three which are all yet to be confirmed (cervical vertigo, MAV and possibly ear vertigo too).

Im glad people on here understand as it does not show externally - doesnt show on hospital blood tests etc and can make you feel quite isolated and “the boy who cried wolf syndome”.

Try Propanolol - it has recently worked for me. I dont know if I will ever know what is casuing my Vertigo - only thing I know is that the medication is supressing it and is making life bearable which has to be a good thing.

ps im UK based too Chris


#29

Hi Paulus, You have my sympathies.

Quite incredibly my vertigo cleared up practically overnight around early December. Literally one morning I woke up and thought “huh, feel not too bad today”, by the end of that week I was pretty much fine. Took a while to get back into the swing of things properly and thought it was a false dawn but now bar the odd “here we go moment” that fortunately doesn’t go full vertigo mode I am fine. Well odd that I suffered for a year and two months and yet it goes as quick as it comes.

Saw an ENT consultant early February which was a follow up from last September and they have no idea what was causing it but the consultant suspected either Meniere’s or Migraine Assisted Vertigo. I note Meniere’s though is often accompanied by nausea and vomiting from what I have read and hearing loss and whilst I am deaf anyway I didn’t suffer either symptom so no idea at all.

I guess I’ll just wait until the next episode because the first was in the late 90’s then the last was around 8 years ago so it obviously happens in cycles. The consultant said to get medical help though when it happens again because it of course could be something else next time rather than the benign happenings of the last episodes, Quite frustrating not knowing what it was though.


#30

I have theories about this. One: could be a threshold of pressure in the ear that disrupts neurological activity enough to cause dizziness. When pressure drops below this, normal function resumes.

Another likely reason: there are air bubbles or debris interfering with the balance sense hairs or the efficient movement of fluid through the canals. When this disruption collapses or disolves or moves to a place where it’s impact is harmless you feel better.


#31

It’s certainly a possibility. Think I said before the attack in the 90’s lasted 8 months, the attack 8 years ago lasted 8 months,. This time the attack started settling after 8 months but a massive vertigo attack put me back to square one so the timescale is similar. This time around though was the first time I experienced the “rumbling” tinnitus which I found would always precede and attack. I still have my old hissing tinnitus in the right ear but I have had that since around 2010. I’m actually intrigued to see how people actually manage to get a diagnosis from their physicians because I was told that there isn’t really any difference between MAV, BBPV or Meniere’s.


#32

My issues seem to be not wholly ear related …but something to do with my neck and back…spurious nerve signals going to my brain are causing my issues I think …but whatever the cause the medicine seems to help it so im finally starting to enjoy life again - after two years or so of not knowing whats going on ive finally got a theory of a diagnosis that fits and medication to help.


#33

Well after a few months where things had cleared up the vertigo is back. Not quite full spinning but any head movement I can feel and I just don’t feel right at all. Seems to be getting worse as well so I am sure it will not be long before the full spinning returns. Back to the Dr on Friday but they weren’t much use before so I don’t hold out much hope for much help this time around either!!


#34

Well looking at his notes the GP said they consultant was pretty convinced it is MAV so didn’t suggest to see anyone else. He has given me Pizitofen and Amitriptyline to see if hammering it with both does the trick, although I am a little nervous about taking these with Zoplicone but I guess the GP knows what he is doing!! He is also chasing up the Vestibular Rehabilitation that I was meant to have but never heard anything back. Anyone has this Vestibular Rehabilitation ? Is it just a load of exercises?


#35

Exercises. Not very helpful for people diagnosed with MAV.


#36

Oh great. Saw a consultant privately and had vemp tests privately and all they said is it probably was MAV and said they would send me for Vestibular Rehabilitation… Which never came through until the GP said he would chase today. So that means it’s been a waste of time for 2 years if Vestibular Rehabilitation is useless in MAV? Bloody hell what have we been paying for!!!

Just looked back at the consultant I saw and he was an ENT consultant. So Turnitaround what are my best options here? Neurologist maybe?

The answer might be on this thread somewhere so I’ll have to read it back.


#37

My statement was perhaps too black and white, but it was useless for me and if you do a search on this board you will find that view is very common.

I think it makes sense - MAV is a condition in which symptoms fluctuate - that to me helps to indicate its due to an unstable lesion (my bet is that its combination of an intermittent leak from the inner ear and/or secondary hydrops), and unless the lesion is stable, the brain will have a hard time fully compensating until the root cause heals/calms down.

Your best bet is medical management and hope that the root cause resolves itself, or get another ENT opinion.

I can’t help thinking your issue may be related to the ear trouble you’ve had most of your life …


#38

Interesting theory. I’m trying to think of potential causes. Looking back I became 90% deaf in one ear and around 40% in the other back when I was about two years old. Basically from what I have been told this is nerve damage to the hairs in the ear although whilst the cause is unknown the possible culprit was a reaction to a whooping cough vaccine when I was around that age. Whilst this caused deafness as far as I can remember I had no balance issues or dizziness up until my first round of vertigo back in around the early 90’s. That continued for around 8 months and I pretty much had to learn how to play sport again afterwards although it destroyed my tennis playing because I could never throw the ball up for a serve again and judge it accurately,.

Fast forward to 2008 and then it happened again. Same symptoms and suffered for bizarrely exactly 8 months. Then in 2012 my Tinnitus started. I can remember getting that looked into and was told to march on the spot with my eyes closed. When stopped I opened my eyes and I had rotated my body 90 degrees and I was facing to the right which suggested some sort of co-ordination equilibrium issue.

Then in 2015 this most recent vertigo started on and off and lasted well over a year until last December when I woke up and felt fine. Since December I haven’t felt 100% but there weren’t any severe spinning episodes. I would get a few “here we go moments” but it wouldn’t develop into anything, until last Monday when it did and I suddenly spin on the left side, with the right side steady and the middle somewhere in the middle. The BIG change this time around has been that my tinnitus has been louder over the last week and my head feels “heavy” and headaches are more prevalent with slight nausea. These symptoms never happened in the previous episodes. Sorry for repeating stuff that I might well have said before,.

My first thoughts about all this were that travelling and would you believe Disney World were the culprits!!! My tinnitus started after flying back from somewhere in 2012 and in the late 90’s, early 2000’s and back in 2008 and 2010 I have visited Orlando and was in those days a bit of an adrenaline freak so always did the Rollercoasters and rides. Not the best idea looking back if you have an inner ear issue!! However whilst the 2008 visit could be linked to the vertigo that year and possibly even the flight in 2012 could be linked to the tinnitus I haven’t flown since 2014 and the break between August 2014 and the time of the Vertigo starting in mid 2015 is too long a gap for a connection although I guess one of those rides could have started all this. I remember banging my head on the head rest on one occasion but again it’s difficult to make a real connection.


#39

Just to let all know that since I was prescribed Amitriptyline “and” Pizitofen by my GP on Friday I have seen a massive improvement over the weekend, getting slightly better each day. For the last 48 hours I haven’t as yet (touch wood) had any major spins. I do still get the heavy headed feeling from time to time where you think that any minute you will start spinning but fortunately as yet that hasn’t happened since Saturday. My tinnitus has also got a bit quieter becoming closesr to pre attack levels which are for me anyway cope able. If I move my head up and down or from side to side things still wobble but it’s been so long now since I was 100% I am not even sure if they are meant to do that or not but as I say an improvement and it’s even been better sleep wise.

Not sure if it’s the drug combo or just coincidence but whilst I have read many of you are taking one or the other maybe a combo of both may help you. Ironically I was prescribed both in my year long episodes last year but was never actually prescribed them together.

Hope this may be of help to someone.


#40

Well that was short-lived, back to spinning again today, beginning to wonder if anything will work!!