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Mav and sleep apnea

Hello,

New member here. I actually had never heard of Migraine Associated Vertigo before I happened across this website while googling my symptoms, but I suspect it may be at least part of my problem.

I was recently diagnosed with pretty severe obstructive sleep apnea, although I’m pretty sure I’ve had it for about 10 years or so. It actually took 4 sleep studies (with MANY other tests in between) to diagnose my condition. I wasn’t able to sleep at my first 3 sleep studies. The doctors kept insisting that, according to the test results, I had slept during the sleep studies and that I didn’t have sleep apnea, although I knew for a fact that I never fell asleep. The last doctor was the only one that gave me a sleeping pill to take before the sleep study. I slept the whole time and, sure enough, the test showed I had severe sleep apnea. I’ve come to the conclusion that my brainwaves sometimes make it look like I’m sleeping when I’m actually still awake. My current doctor also had me take a multiple sleep latency test, which consists of taking 4 or 5 10 minute naps every 2 hours while they record your brainwaves. He said I achieved REM sleep in 4 out of 5 naps, which is apparently very unusual. I know for a FACT that I didn’t sleep a wink during any of the naps.

First we tried CPAP, but I could never fall asleep with it on, so I had my uvula trimmed, my turbinates and base of tongue shrunk, and pillar implants installed in my soft palate. I went back for another sleep study and my sleep apnea is better, but still not gone and I really don’t feel any better. My doctor prescribed me Provigil, which made me feel slightly more alert and able to focus at work, but also made me feel kind of jittery so I stopped taking it since I feel tired, yet kind of wired and jittery already. I think the chronic sleep deprivation has caused stress and anxiety.

Does anyone here also have sleep apnea? Can sleep apnea also cause MAV? I was having bad dizzy spells at first (several years ago). Not exactly spinning, but more like my eyes were going back & forth very quickly. I couldn’t even go to work for 3 weeks because I was too dizzy to drive. The dizzy spells eventually subsided but left me with a 24/7 imbalance/lightheaded/foggy head feeling. My eyes feel heavy & tired all the time. A couple other symptoms that started around the same time and have been constant ever since are tinnitus and lots of floaters in my vision. I also have a hard time with too much visual stimuli. Shaky scenes on TV are hard to watch and sometimes it’s hard for me to maintain eye contact while having a conversation with someone because it makes me dizzy. I also occasionally get sparks/flashes in my vision, often after blowing my nose. I used to get a lot of headaches mostly behind my right ear but never had really bad “migraine” type headaches. None of my doctors have even mentioned anxiety, but I think the dizziness causes stress/anxiety which makes my symptoms worse. My blood pressure & pulse are kind of erratic and I get hot & sweaty, mostly around my head & neck.

Does this sound like MAV? I realize sleep apnea is probably the root cause, but I’m wondering if I may be suffering from MAV as a side effect and maybe could benefit from some kind of migraine therapy/medicine.

Any info/advice would be appreciated. Sorry for the long email. I’ve been suffering for a long time.

Thanks,
Kevin

Hi Kevin

Welcome! but sorry you seem to suffering from this nasty illness. It sounds to me like you could have MAV, I suffer from all the same symptoms as you do, including my eyes feeling heavy ALL THE TIME. I often feel I should invest in some matchsticks to prop them open. I also get headaches and uncannily a lot of ‘ice pick’ headaches behind my right ear like you.

I don’t have sleep apnea but I have heard it definately can be a cause/trigger. However, I think a member of ours - Chaz - suffers from it and has managed to control the MAV by controlling his sleep apnea and the use of a preventative medication - Vermapramil. Just search on his posts and you should be able to find some more information.

Becky

Hi Kevin

Welcome! but sorry you seem to suffering from this nasty illness. It sounds to me like you could have MAV, I suffer from all the same symptoms as you do, including my eyes feeling heavy ALL THE TIME. I often feel I should invest in some matchsticks to prop them open. I also get headaches and uncannily a lot of ‘ice pick’ headaches behind my right ear like you.

I don’t have sleep apnea but I have heard it definately can be a cause/trigger. However, I think a member of ours - Chaz - suffers from it and has managed to control the MAV by controlling his sleep apnea and the use of a preventative medication - Vermapramil. Just search on his posts and you should be able to find some more information.

I hope this website is of some use to you.

Becky

Kevin,

you do sound like you have symptoms that could be MAV. Have you seen a specialist? Either a neurologist, ENT or better yet, a neuro-oto?

Julie

I am having terrible insomnia (but mostly since I hit the menopause, I guess this wont be your reason!)

I notice if I go over 11 pm and I havent got to sleep (eg. I stay up later to watch a film) then I can be awake all night, or get to sleep at 6 in the morning and sleep 2 hrs. I can go night after night with no sleep and it is awful!

On holiday, I slept between one and half and 3 hrs every night, finally conking out on day 7 for 8 hrs to wake with bad migraine because I had slept a lot, but two nights I went right around the clock with not one second. I have been to the dr. and they dont take this very seriously, keep talking about good sleep hygiene (this doesnt work). I find Nytol works a bit, I take the low 25 mg tablet and this will take two hrs for me to drop off but I will get 4 hrs sleep or bit more on it. Take the two tablets and I feel really dizzy next day. The only thing that works is Amitryptyline, half or three quarter of a 10 mg tablet. Again, leaves me with a bad head or dizzy the next day, but sometimes the sleep is more important. I hate that feeling of anxiety trying desperately to go to sleep at night.

Best Wishes
Christine

Thanks for the replies. I’ll check out Chaz’s posts.

I have seen many ENTs, including one who was also a otologist/neurotologist. He suspected meniere’s, but that didn’t pan out. I do not have progressive hearing loss.

Here’s a list of symptoms & tests I’ve had. I’m sure this will sound familiar to many of you.

I doubt they are ALL related, but here are my symptoms, which all started around the same time (8-10 yrs ago).

Pain in upper/middle back (24/7)
Pain in sacroiliac joints (little dimples right above your butt cheeks). Comes & goes and switches sides. Was occasionally so severe that I couldn’t even roll over in bed. Hasn’t been as bad the past few years.
unrefreshing sleep
ringing ears/tinnitus (24/7)
sinus congestion
full blown dizzy spells, although I haven’t had one for a few years
brain fog/lightheaded (24/7)
pressure behind eyes (24/7)
floaters in vision (24/7)
flashes in vision (not as often anymore)
anxiety/panic attacks (never had either before dizziness started)
Hard to focus on same object for very long, especially while standing. Hard to look someone right in the eye for long while having a conversation. Much worse when standing.
hot flashes/sweaty head & neck
erratic BP & pulse
hard to focus & remember things/words, etc
eyes feel heavy/tired (like my brain wants to go to sleep)
muscle twitches

Here’s a list of the various tests I’ve had. Test results were all pretty much normal, aside from my last sleep study (see my original post)

MRI of brain
Sleep studies. 4 of them (see my original post).
Allergy tests
Candida test
Heart tests - I think the dizziness caused a panic attack one night and I drove myself to the emergency room. My pulse & blood pressure were very high. They couldn’t find anything wrong with my heart. My GP ended up prescribing Inderal LA, which is used to control BP & palpitations, but I recently learned it’s also prescribed for migraines.
CT scan of sinuses
numerous blood tests
colonoscopy - Have had pain at bottom of left ribcage. Probably unrelated to dizziness.
various ear tests
chest x-ray
abdominal CT scan
eye tests
test for lead/heavy metals
test for celiac disease
thyroid test
treatment for TMJ disorder
urine & stool analysis
I also had surgery (seemed to make my dizziness worse) for a deviated septum in '01 and surgery for a hiatal hernia 3 yrs ago.
I have also quit smoking, caffeine, drinking and exercise more. None of which have made me feel any better.
I am 38, 6’1", 190#. I was very athletic before this all started. Now I feel like an old man.

I’m sure I forgot a few other symptoms & tests

You do get a lot of symptoms that MAVers get, but do you get migraines, or am i missing that in my own stupor? Or have you had migraines in your history. I’m also not seeing vertigo except for a few years ago.

the oto-neuro thought Meniere’s, so that must have been when you were having vertigo, but no vertigo for a few years? I would consider myself cured if I didn’t have vertigo for a few years.

I’m not being offensive. I’m just not sure i see an MAV picture here. You have a lot of symptoms, such as tinnitus, sinus congestion, flashes and floaters, hard to focus. But without a history of/or current migraines/typical migraine aura, and most of all vertigo, i’m no oto-neuro, but my guess would be no.

Anybody else?

Julie

I did have severe dizzy spells for a few months but I haven’t had a full blown dizzy spell for a few years, although I often feel as if I’m on the verge of one. Possibly I don’t get them anymore due to the Inderal LA I take every day. If my only symptom were vertigo then, yes, I would consider myself cured but clearly there are other many other symptoms that weren’t there before. I guess if the abscence of room spinning dizzy spells and massive headaches precludes MAV, then I probably don’t have it. It just seems to coincide with many of my symptoms.

Thanks,
Kevin

— Begin quote from "kogrox"

I did have severe dizzy spells for a few months but I haven’t had a full blown dizzy spell for a few years, although I often feel as if I’m on the verge of one. Possibly I don’t get them anymore due to the Inderal LA I take every day. If my only symptom were vertigo then, yes, I would consider myself cured but clearly there are other many other symptoms that weren’t there before. I guess if the abscence of room spinning dizzy spells and massive headaches precludes MAV, then I probably don’t have it. It just seems to coincide with many of my symptoms.

Thanks,
Kevin

— End quote

I wouldn’t say it does (preclude MAV), but that depends. I barely have any vertigo (and the little I have is very slight rocking), but a LOT of extreme motion sensitivity (including stuff I see, despite me not moving) and headache. Now, the headache kind of seals the deal for me, there’s no doubt I have migraine, and since my dizziness gets worse when my head gets worse, I feel pretty certain MAV is my diagnosis.

The visual stimuli thing points pretty heavily at MAV in my opinion, although it exists in all(?) dizziness causes. Seems to be far more common and severe in MAV.
It’s also very possible that the Inderal is helping you with the dizzy spells, although not helping enough.

Pretty hard to say, but most if not all of your problems are in fact not unheard of in vestibular problems, including anxiety/hard to focus etc. Some could of course also be from something else. I know that I personally at least have anxiety and had that long before any dizziness worth mentioning. Possible slight hypothyroidism too.

All in all: I don’t know. :wink:
If possible, I would try to see another neuro-oto and bring up MAV as a possibility, and see what he thinks. I suppose most, but not all, neuro-otos/oto-neuros know a fair bit about MAV at this point.

Kevin,
Yes, as you’ve seen by now, I’m in a very similar circumstance to yours. In my case the CPAP therapy seems to be working fairly well for the classic sleep apnea symptoms by it has not resolved the dizziness. A friend was also diagnosed with severe OSA a couple of years ago and, although he didn’t develope balance issues with it, he said it took 6 months of CPAP before he really started feeling better. I’ve only been at it for two months so I’m still hopeful that I’ll see some improvement. I’m also being treated for some pretty significant allergies and I wonder if, in my case at least, this mess could be multi-factorial.

My symptoms have included: general imbalance (pretty much constant these days), difficulty getting my eyes to track, hot flashes, cold sweats, tinnitus (usually low grade but also pretty much constant anymore), pain in and behind my ear, ear fullness (always worse at night) and of course dizzy spells. Mostly the dizzy spells last for 2 to 6 minutes. Sometimes they seem to build in intensity for a minute or two and then I experience rotational vertigo for another few minutes. Many times though, it’s not that bad and the vertigo component is absent.

Another weird symptom that I’ve been having alot recently is a shaking sensation just as I’m drifting off to sleep. It’s not really distressing - a least not compared to a dizzy spell - but it does make me wonder just what the devil is going on. I’ve never been able to decide if I’m actually shaking slightly or if it’s some sort of vestibular illusion.

I don’t have classic migraine symptoms either. Many on this forum do not, so don’t be too quick to say that it’s not MAV. Sleep deprivation is a classic migraine trigger and sleep apnea can also cause blood gas abnormalities (hypoxia and hypercapnia) which can produce a “migraine like” cylce of vaso-dialation and reflexive vaso-constriction.

I’m encouraged to hear you say that your dizzy spells have been absent for a couple of years. I keep thinking that this can’t go on forever. Even if I don’t find a cure, surely I’ll eventually wear this thing out. Constant inbalance but no actually dizzy spells was not the way I intended to live my life, but it’s a hell of a lot better than constant inbalance WITH dizzy spells.

BTW have you tried a nasal pillow with your CPAP instead of a traditional mask? That’s what I’m using and I got comfortable with it pretty quickly.

Good Luck

Chaz

Welcome Kevin-

Here’s my two cents (for what its worth :roll: ):

I look at your symptoms and see alot of similarities with me. How long have you been on propanolol? I wouldn’t be surprised at all if your dizzy spells improved about the time you started taking it. I’ve been on it for 2-1/2 years, and my dizzies have improved tremendously. (I can’t say for sure its all been due to the Prop, because I changed my diet around the same time I started taking it).

For me, I’ve had migraine, most of my life, just never diagnosed until about 3 years ago. I never had classical migraine symptoms until just a few years ago. No wonder I was never diagnosed. Twenty years ago, I was diagnosed with panic attacks and described propanolol then. It helped me then for the panic attacks, but it wasn’t just “panic attacks” it was migraine.

Looking back, my symptoms are constantly changing. But I have no doubt now its migraine. It wasn’t until the dizziness and vertigo hit, practically overnight and I literally crashed before I was diagnosed.

It doesn’t surprise me one bit you found us googling your symptoms. There are still way too many doctors out there that miss it. I for one can say I’ve have (and or had) every single symptom on your list. Are they migraine related? I don’t know. (I would say some definitely are at least in my case)

Does migraine run in your family?

I would say its definitely worth asking your doctor about, especially if there is a family history.

Kim

Thank you Chaz & Kim for the replies.

Chaz - Yes, your symptoms sound very similar to mine, aside from the fact that I do not have full blown dizzy spells anymore. I think I know what you mean by the shaking sensation. My bedroom is close to train tracks and if a train goes by while I’m laying in bed trying to go to sleep I can feel my bed shaking very slightly. Well, sometimes I feel the shaking when there’s no train and it seems like it’s coming from me. Another weird symptom is sometimes when I’m going to sleep I can feel my pulse in my legs.

Hopefully your dizzy spells will go away. I still feel like crap 24/7 but I’m better than I was before and at least I can go to work and function somewhat normally.

Kim - I have been on Inderal for about 3-4 yrs now. There’s no family history of migraine and I never had migraines or any other problems as a child. It all started about 8-10 yrs ago with waking feeling like I didn’t sleep well. That progressed to a constant foggy/plugged up head feeling, which then progressed to full blown dizzy spells. I suspect the chronic sleep apnea has probably caused some type of constant migraine or some other malady.

I’ll ask my current ENT/sleep Dr. if he is familiar with MAV and if he thinks it could be a side effect of my sleep apnea.

Thanks,
Kevin

Kevin,
Yeah, that “bed shaking thing” is exactly what I experience. At first I thought it was something external shaking the bed too - then I realized that I was either shaking very slightly or had the illusion that I was doing so. I’ve asked my wife if I’m shaking and she say’s “no”, but I actually think that I am - just very very slightly.

I had one doctor tell me that shaking as we fall asleep is actually normal - he called it a hypnogogic state - but he said we should not be aware of it. Makes me wonder if chronic sleep apnea has disrupted my normal sleep patterns to the point where I’m more aware of things during light sleep than is normal. Kind of makes sense - if your brain is constantly needing to bring you to a more alert state to get you to breath, then eventually maybe you start lingering in this more alert condition while your body progresses on towards sleep. This could explain why I’m aware of things as I’m trying to fall asleep (like the shaking) that most people aren’t. I wonder if the same principal could also explain some of the weird results on your first sleep studies when your brain waves indicated that you were asleep but you didn’t feel like you were. Perhaps some part of your brain has learned to be very resistent to shutting down and sleeping, while other parts are so sleep deprived that you jump right to REM patterns (sleep onset REM is a symptom of severe sleep deprivation as you probably know).

Perhaps I’m over analyzing all this. I’ve developed a tendency to do that over the last few years.

Best

Chaz

Many people are aware of their hypnagognic state, me, for one, my husband, and another member of this forum is also. It’s not that unusual. It happens on falling to sleep and/or on waking up.

Julie,
Can you elaborate a bit? Do you experience something similar to what I’ve described as you’re falling asleep?
Thanx
Chaz

Sure,

it comes in many forms. Only lately have i had a bit of shaking as i drop off to sleep. but with the shaking there’s a little fear.

typically my hypna states have come in the form of nonsensical images. Nothing dream-like about them (even dreams may seem to not make sense, they do have a logic of their own.) These are truly nonsensical, random, come quickly one after another, sometimes scarey, sometimes beautiful (wouldn’t you know, my husband gets the pretty ones - all kinds of jewels and flowers floating around in all colors of the rainbow - he can even describe them to me and the next thing he snoring) and i’ll get the weird-to-frightening ones.

Once while taking a nap i had my hand hanging over the bed and just as i was nodding off i thought a mouse was nibbling on my hand. Other times I’ve felt presences of people in the room while nodding off. If you think i’m crazy, just google it. it’s all quite common.

so they can be menacing, neutral, or beautiful. But they seldom have meaning, like dreams do.

they are said to come to people who are very artistic, those who’s veil between them and the unconscious is less thick. So when your doctor said, most people don’t remember them, he was probably right. He should have said, most people without a creative bent don’t remember them. I know plenty of people who do remember them.

As i said, lately, it’s just been a little shaking before I fall asleep.

Julie

Julie,
That’s really interesting. I’ve always noticed that I have flashes of really vivid imagry just before I drop off to sleep. Probably shouldn’t elaborate too much on the specifics here as it’s often not “G” rated :smiley: . Anyway, it sounds like this shaking sensation truly is normal. Sometimes I wonder if this whole dizziness mess has made me hypersensitive to many things that I would otherwise not think much about. Thanks again for the input.

Chaz

Google it Chaz, you wouldn’t believe what some people see. I’ve even heard voices. As have others. It’s totally normal. My husband is a psychologist and he can back me up - it’s totally normal.

Yea, some of the stuff i wouldn’t want to post on a public forum :slight_smile: So this means you are more in touch with your unconscious than the majority of people, Chaz.

Julie

Dreams as well this kind of images you see can be scary. I also dream about really weird stuff, luckily it doesn’t scare me, but there are definitely no rainbows, flowers and alike nice stuff in my dreams. :frowning:
I am too suffering from sleep apnea and have been ordered to http://www.pillsforstress.com/Provigil.htm against it. I have the feeling it helps. But my dreams at the moment are still very vivid.

Hey Chaz,

Your story is interesting to me as I was also recently tested for sleep apnea and have moderate sleep apnea plus severe food, and environmental allergies… I’m currently seeing a physical therapist for VRT but she is not sure of the root cause unfortunately. She doesn’t think its damage from the vestibular nerve exactly… I have constant rocking dizziness, migraines, ear fullness, ear pain, tinnitus 24/7, neck pain, and back pain. The cPAP kinda sucks for me and it bothers me a bit but I guess I’d rather use it than have shitty quality sleep… I’m not sure how long I’ve had sleep apnea but I have always snored and experiencedbeing tired during the day as well as insomnia, waking up often throughout the night… 8 months of dizziness and have seen many specialists, MRI came out clear, hardly any hearing loss which is suprising since I’m a musician, very little nystagmus, but my left ear (vestibular nerve) is weak and off. Never got an exact answer from anyone… Just "maybe"s across the board. I’ve been avoiding allergies, using a cPAP for about 2 months as well. I’m curious if sleep apnea can really be the root cause…