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Mav bppv


#1

I wrote this to Scott but perhaps others can shed some light.

Hi Scott,

I have followed some of your posts on this forum, and you seem quite educated with both migraines and other vestibular disorders.

I was wondering if you can shed some light for me, since I feel entirely in the dark about what I have.

I have suffered from migraine headaches since I was a kid. I remember coming home from school and having to tie a towel around my head to relieve the pressure.
Throughout my teenage years, I was able to keep my migraines under control with Advil but noticed I got headaches around my periods due to hormones and when I hadn’t eaten in a while due to low blood sugar.

About 6.5 years ago, I was going through a stressful time in my life. I was living alone (a big step for me), putting myself through University and working full time. I also had a dog who needed my constant care. During this period, I also had a full blown case of GAD. (I had panic attacks in my teens and relatively moderate GAD).

One night while on the computer I noticed I would start to sway. I got terrible anxiety from this but thought it might be from living at a high altitude (26th floor). The night after the same thing happened while watching tv. All of a sudden, on that night, I woke up and felt like I was rocking intensely on the inside of my body. I don’t remember having any actual spinning sensations but a hard rocking. I panicked and went to the hospital.

I was told I was negative for BPPV and probably had a middle ear infection. In 2 weeks the feeling went away, but I had an off-balance feeling. About three years after that, I experienced similar off-balance, unsteady feelings but no spinning. An ENT confirmed no BPPV or Meniere’s and my GP said it was anxiety.

Now, about three years later my life is full of stress again. I am ten months post-partum and started a new business which takes all of my time. I am completely stressed out.

I started noticing my eye-movements were weird one morning when looking in the mirror. I felt “off” but couldn’t pinpoint why. My eyes were watering all of the time because of prolonged computer use but to the point where I saw halos around everything. It felt as though I had looked into a camera flash.

I went to see an Optometrist who said my eyes were severely dry.

Then, I woke up one night and my head was spinning so bad I couldn’t even look at the Advil bottle (was trying to get my baby Advil for her teething). I went back to bed. Over the next month or so, I would get positional vertigo. I didn’t know it was vertigo, however. I thought it was anxiety.

I started realizing it was vertigo when it only occurred when I would tilt my head to the right or look down to write on a piece of paper. The incidences even while driving were getting more frequent and I ended up going to the hospital. They did confirm I had BPPV because of Nystagmus and told me to do the Epley. I went home and did the Epley for three days and the spinning sensation which occurred from my right ear stopped.

But now, I just have this off-balance, swaying, being pulled feeling for most of the day.

There is some literature on PPPV that occurs after people have an episode of BPPV. But then, there are also Migraines.

During my experience with BPPV, I had violent headaches. One was so bad I thought I was losing vision in one eye. The weather also triggers them. And yesterday, for example, I was starting to feel better, but the Ontario pressure symptoms are so bad a rain cloud literally set off a migraine again. The swaying dizziness sensation is worse today.

My questions are this: In your experience, do people with Migraines get BPPV? I am only 32, and they say BPPV happens in the elderly.

Do Migraines and Stress cause BPPV? On all three occasions (2 of the worst), were triggered by stress or extreme stress preceeded them.

The ENT i went to see on Monday only did a pressure and hearing test and said it was a weird case of BPPV but he thinks it could be TMJ.

He didn’t even do the Epley or any other test…


#2

Well I’m think the Jury is definitely out on Migraine being a cause. That is controversial and based on observation that people with ear trouble have migraines. Some doctors have chosen to believe that migraines therefore must be the cause. If you read the name carefully its ‘migraine associated vertigo’. An association doesn’t assume cause, it’s just they occur together. Ear trouble is known to give you a migraine because of the sensory stress you get. I’ve posted a good article about Migraines and how they are thought to work. Some hypothesise they can cause strokes but this is also controversial and dismissed by many. I think Migraines are secondary to an underlying issue. People may not be aware of the underlying issue if it’s very subtle. Ear trouble is rarely subtle though!!


#3

Thank you for replying.

Before this all happened, I had bronchitis for months. My nose wouldn’t stop running. I am wondering also if this could be some type of vestibular neuritis also.

It’s just so depressing.


#4

You did a lot of coughing? I had a coughing spell for a few weeks before this all escalated.

Yes, its very depressing because its so invasive … if you had a bad ankle at least you could sit with your leg up and forget about it for a while. Anything wrong with your ear impacts nearly everything you do, and the migraines stop life from happening normally almost completely.

Have you been offered any medication to relieve the vertigo feelings and the migraines? The MAV medication is REALLY helpful! (and almost makes me forgive ENT for spouting such a lot of rubbish!)


#5

I was told I had BPPV by two doctors at different emergency hospitals. The ENT said it didn’t sound like “traditional BPPV” but I probably have a really bazaar case of it.

But I did develop it following a cold. It was positional and there was spinning but it just doens’t make sense that i would get BPPV so young and even after the Epley worked I still feel “off balance”.

What medication are you on? I was only offered serc.


#6

Serc is thought to help Meniere’s sufferers, but that condition is very rare indeed. Is it releaving any symptoms? You really ought to try Amitriptyline, especially if you are suffering migraines more than twice a month. It also reduces the ferocity of vertigo dramatically (doesn’t address the cause but reduces the sensation significantly). I would say ‘but please talk to an expert’ but if your experts are telling you its TMJ I would find some new experts!

Take a look at this page, it talks about medicine given to people suffering vertigo:

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Dr. Hain’s site is really good, so have a read around it.

Reading about ear trouble online can cause you a lot of anxiety so please be a bit careful not to get too obsessed reading about it.

Also know that most ear trouble resolves itself over time, but that can be a LONG TIME! A nurse was embarrassed to tell me that but I’m glad she did.


#7

I know. It happened 6.5 years ago and now I am battling something again. It’s just what?? I get worried it can be MS or something but doctors don’t even seem to go there since I don’t have any other symptoms.

Do you think if it was MS or something like that, I would have been diagnosed in the last 6 years years?

I will look into that site again.


#8

It all sounds like ear trouble … it causes absolute mayhem at several levels and it takes extreme calmness and patience to get over it.


#9

@Sacolucci hi, not sure if you’re still on here but am hoping you or someone else can help me. Your story above is very similar to mine, years of MAV and just one month ago developed new spinning, mostly positional but some I’ve been still and it was a visual trigger. It has even stumped the vestibular physical therapist but she’s now wanting to try the Dix-Hallpike today to test for BPPV. It’s been negative for me so many times over the years however this time the true spinning has been new and different. I’m so concerned it (and the Epley if I need it) could make me so much worse since there is also MAV dizziness going on. Has anyone else ever had both MAV and BPPV?? I was already housebound from MAV before this but now this spinning is making it difficult for me to do anything, even use the bathroom, and I’ve been in bed more than normal recovering from spins. And we all know less movement makes everything worse. Just when I think MAV can’t get worse for me, it does…


#10

Hi Jess,

Sorry about your struggle.

Don’t overdo the epley try it once and if it does not help ditch it. Also you can go to a PT and then do dix-hallpike and study the nystagmus using goggles. If it is left or right beating there is a possibility for BPPV. Ignore any upbeating or torsional nystagmus as they are migraine related.I get dizzy in dix-hallpike no matter what. It is a bad position for MAV overall. It might just be a breakthrough that you are experiencing which can calm down on it’s own as well.


#11

Supposedly, yes. I have. I was originally diagnosed with BPPV, which incidentally at the time initially was fair enough cos the symptoms were BPPV like. Quite positional, brief intense room spinning (external) vertigo but mine was/became MAV quickly. Much later when chronic 24/7 dizzy, rotary dizziness, I again started experiencing BPPV like symptoms, on sitting up in bed usually and was prescribed Brandt Dorfff exercises (which I didn’t do). Personally I think both, in my case, were just different morphs of MAV. Why would one have both. I had a dozen, at least Epleys over a decade. Once one stopped the vertigo like magic. None of the others did anything much. Made me briefly, half an hour, much worse, at most, and I’ve had true rotary vertigo attacks that lasted regularly 72 hours straight, and sometimes up to eight days and nights. Every time I opened my eyes, So I’d say treat the MAV with preventatives and not bother with Epley if it worries you to try it. Even if they diagnose BPPV they cannot cure it so does it matter. There’s a possibility one Epley would stop BPPV on one occasion. Won’t stop it recurring if it’s going to. One has heard stories an Epley made people dizzer for months. One would have to be pretty unlucky for that to happen I’d say. Helen


#12

Yes Epley can cause Hydrops apparently if you repeat too many times.


#13

My understanding is that we “MAV’ers” have a much higher likelihood of having BPPV. I cannot understand why… actually the medical community cannot understand why.
However when I had my caloric testing done, I had downbeating nystagmus which my current Dr who is incredibly knowledgeable noted as MAV.
BPPV will typically have side beating nystagmus.


#14

Well, I do hope this forum isn’t jinxed because yesterday when I posted to this BPPV post BPPV was, for me, quite a distant memory. Then for probably the first time ever I experienced it last night as I lay my head down to sleep - first time ever laying down I’m almost sure. Turning over/sitting up but not laying down. Indeed it tends to feel like you are falling through the mattress, last night I slept well with no further episodes of BPPV. I had a little something queer this morning long after sitting up in bed but then, big mistake. Whilst dressing I stood on one leg, and put the other one on the bed to inspect a toenail, and leant forwards, and BPPV realy did kick in. I shan’t be doing much housework today. I‘ve rear head pressure at about 8/10, the stiffest neck you could find and can stand/walk unassisted just about. All quite amazing considering Thursday I was 100% no symptoms and walked outside perfectly. Probably my best ever day since chronic MAV, and now, today Saturday, my worst day it seems in many months. Bending forwards would seem reckless to many but I do it all the time without adverse effect. On a walk I pick up the dog’s ball twenty times a day, open the oven/fridge/Rayburn in my home all entails bending forwards. Back to topic, this seems like BPPV but I’m sure mine is MAV. Something’s wound it up, again. Helen


Caffeine Withdrawal and Vertigo
#15

Hi. There seems to be no rhyme or reason to this terrible affliction. This has made my life a total misery not knowing when the next attack is going to happen!I can cope with most of the symptoms but nothing is worse then the true rotary vertigo I get. Feel dizzy and off-balance most of the time but that is truly awful!I sympathise!R.


#16

Thank you all for your input. I had a Dix-hallpike done on Jan 12 which showed definite nystagmus on the left side so bad the PT didn’t even check the right side (grrr) as the dizziness took minutes to subside on the left and i was breathing hard with a lot of neck pain. She did the Epley on the left side. Over the next few days I had internal spinning but didn’t notice any significant improvement. Finally in the past 1.5 weeks I haven’t had a spinning/rotational attack only milder spin sensations waking up.
Until last night…I slept 1 hr on my right side, deep sleep, and woke up violently spinning and I hadn’t moved or rolled over. The violent spinning lasted 1 hr with eyes closed and was violent 4 more hrs if I tried to open my eyes. I finally fell asleep, somehow, on my back for almost 4 hrs but woke up to having a hard time opening my eyes. 12.5 hrs from the start of spinning I am finally sitting up in bed but still cannot turn to the right (haven’t been able to turn to the left for 3.5 years)
Is constant spinning for over 12 hrs and counting what most or some of you experience with MAV and i am just late to the spinning part? Any help would REALLY be appreciated.

@Onandon03 SO sorry you’ve had this last 72 hrs, was that constant room spinning? How did you get to the bathroom and eat?


#17

Hi Jess. So sorry to hear your difficulties. Yes I had constant room spinning vertigo attacks that lasted 72 hours about every nine months or so for over a decade. I would have to remain perfectly still with my eyes closed throughout. These attacks would always start upon waking in the morning or I would awake with spinning vertigo in the small hours. It would then last 72 hours. They would start and stop abruptly. I was originally told by a GP who had vertigo himself to sit upright on a chair until they stopped never to lie down with them. I found this exhausting so went to bed instead. I would be so ill and unable to move anything particularly my head I could only drink through a straw from a cup held low by my husband. The vomiting caused by the vertigo meant several times I had to have injections to stop vomiting because of dehydration. I was always worse one side (my right) then the other ever after when lying down. Lying on my right outside of acute attacks would cause more sort of internal,vertigo but between acute episodes I would gradually retrain myself to be able to lie on my rightside by making myself do it very briefly every night, gradually increasing the length of time. After a decade or so the acute attacks got much longer suddenly extending from a virtually ‘guaranteed’ 72 hours to eight days. The vertigo was still room spinning but not quite as violent as before and as long as I kept my head and eyes still I could keep my eyes open some of the time so vertigo couldn’t have been quite so constant. That’s the sort of MAV attacks I’ve had. Helen


#18

Hi Jess

Sorry I was working from the emal notification from which this was omitted and therefore didn’t pick it up til this morning. Regards practicalities when acute I couldn’t live alone. During the 72 hours I didn’t eat just sip water through straws. I was so nauseous nothing would stay down anyway. Eventually Buccastem controlled the vomiting. During the longer attacks during slightly better moments, propped up on pillows I could nibble a bit. Getting to the bathroom. Very problematic. Very strong husband to literally hold me up thankfully.

If you are only able to lie on one side must warn you. Lying in same position you will quickly get very painful bedsores (I had them on my elbow!). You need cushioning protection. I found an unused bath sponge stuffed inside a stocking could be worn to spread the pressure. Bedsores are a good reason to get back to sleeping in different positions. Helen