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Attacks or a constant feeling


#81

Got it. I think in rotary chair they use electrodes. Or they stop rotation and open eyes to observe nystagmus.


#82

Just heard from Sarah it was done in the dark with googles


#83

Yeah, had that done. It sucks. You have to widen your eyes too so the cameras in the goggles can see your eyes as you’re feeling the vertigo.


#84

I felt like my ear is being ground in my head. If I place a stethoscope on top of my eyes I can hear a motorized sound too during the nystagmus.


#85

We can record it on the phone video and then use magnification when viewing it.


#86

So the nystagmus that Dr. Hain said I had was Alexander’s law when I looked to the left. I am even more confused now.

Alexander’s law can occur in central disorders but I have had an MRI and neurologic exams and they are normal. Alexander’s law (left-beating nystagmus) can also occur in peripheral disorders. But I never had anything except BPPV. I explained my story to Dr. Hain and he concurred it was definitely BPPV. But how could BPPV cause a vestibular lesion? I thought BPPV cannot leave damage and Dr. Hain also mentioned I definitely do not have BPPV currently.

This said, Alexander’s Law nystagmus also doesn’t happen with cervical vertigo (although I did have some nystagmus from neck movement which he said was rare). He concluded that I hava a mild right ear imbalance with some mild migraine. Could it be I actually had neuritis in my right ear and just didn’t know about it?

I mean, I did have a sense of imbalance, brain fog, high-anxiety and extreme fear. I felt completely disconnected from myself when this happened and then, I developed the BPPV. The reason I am confused is neuritis is spinning, incapacitating vertigo - I didn’t have that. I only had one episode that lasted 10 minutes max. I am sooo confused.

My video head impulse test was completely normal. If i had labrynthitis, would that still be normal?


#87

I think ENT/Oto-neurology have invented a discrete condition for nearly every individual vestibular symptom, and then a few more to describe different collections of them. This has helped them put patients conditions into buckets, and limited the endless search for an explanation.

I’ve had practically every symptom ever described bar episodic hearing loss. My condition has morphed several times, I even named a thread after it! You never know quite what the menu will be in a months time!

I suspect a lot of dysfunction is connected and the story of vestibular medicine is far from over.

Unfortunately you may have to get used to a lot of odd unexpected sensations for a while until your condition calms down.

I would focus on treatment to limit its impact on your life. Follow Dr. Hain’s advice on this.

It’s very distracting, particularly at first and the best thing is find meaningful interests to give you something better to think about. It’s not easy, but it gets easier (and better) after a period of getting worse in my experience.


#88

So glad to report that I’m barely on this site anymore! It was my lifeline last year and now I just check in occasionally because I’m doing so well. I do want to respond to the person a month ago! who asked what the cocktail of 4 drugs I’m on: 37.5 Effexor (Venlafaxine actually, the generic form) in the morning and then at night: 15mg of Amitriptyline (20mg got me craving carbs) at 9pm, 12.5mg (half the lowest dose) of Klonapin and .25mg ((half the lowest dose) at 10:30pm. I’m zonked by 11pm most of the time, and wake up at 8am. My fitbit tracker shows that I’m getting around 8 hours of sleep each night and a good balance of REM, light and deep sleep. I was afraid that the sedatives were affecting my sleep. But on the contrary, they keep me steady at night and during the day.

I DO have some big stuff ahead - I will be a witness in a trial and I am worried about that time on the stand. Already I do get dizzy spells when I’m stressed - as soon as my blood pressure goes up. I’m working on some meditation and breathing techniques (that’s what Hilary Clinton did in her 11-hour Bengazi hearings so it must work!) But may also try a beta-blocker. We’ll see.

I’m working again - still haven’t started giving my public talks yet - not quite ready for that. But I am doing the other jobs where I’m on my feet all day (no computers and no elevators since they are both a trigger still for me .)

I have NO IDEA what I have. Mal de Debarqement is what top doc in Boston suggested, another thought plain old MAV. A previous doc in NYC saw signs of secondary hydrops.

WHO KNOWS?!?

I’m just treating the symptoms and trying to take great care of myself. Exercise, plenty of water, FFO (fresh food only) and lots of love from friends and family. I eat dairy - tons of cheese, avoid caffeine, pickles, wine, and have even started eating chocolate again. Will see if my threshold for that holds.

And now, gotta get off the computer because typing is my nemesis!

Love this awesome community. Thanks for all the support.

x Shazam


#89

I love it when people focus on what gets them better .

Good luck, wishing you luck to be back to giving your public talks soon.


#90

Familiar story!!!


#91

You may be having thoracic Outlet syndrome. Please rule out cervical rib or an elongated C7 transverse process with a simple xray. You can also see it is really your hand movements that is making you dizzy. If so it could be TOS. Please see my Facebook page albums " Gracy Kalath " and posted links for information. After 24 years they diagnosed me with bilateral thoracic outlet syndrome.


#92

I got my results back from Timothy Hain’s office:

There was some mild up-beating nystagmus in all positions. I had some left-beating nystagmus with the dix-hallpike (1-2 seconds). Hain suggested I had a very mild right ear imbalance.

The VEMP was normal. Video Head Impulse test was normal (he said I passed that with flying colours). I could not complete the rotary chair test because it made me too dizzy - felt like I was going to fly off into space.

Hain said that something he found rare was that I had displayed some cervical nystagmus which indicated my neck was at play.

His overall conclusion was that I have some mild migraine, with previous BPPV and some mild right ear imbalance with some possible neck issues. He also said he saw some fluid in my middle left ear which was from the cold I had when I went there.

All of the popping, crackling sounds are explained by a eustachian tube type dysfunction in left ear so he advised use neti-pot, Allegra. etc. He suggested some vestibular rehabilitation for right ear imbalance.

So, I am confused, once again. Firstly, he said I definitely do not have BPPV. Therefore, where would I get an inner ear imbalance? And is it an imbalance or some kind of damage? I didn’t have neuritis or labyrinthitis because the head impulse test would have shown some weaknesses. Also, since there is cervical nystagmus could this all be coming from my neck?

The saccades and optokinetic testing were normal too. I am just stumped and my issue is I am still getting positional dizziness at times (though not as bad as when I had BPPV) and my eyes are jumpy, still.

Any suggestions?


#93

What is Dr. Hain’s recommendation as far as a treatment for you? Did he suggest a drug or drugs?


#94

He suggsted going on Effexor.


#95

This is a million dollar question. Mine was through injury. I reckon its possible to pick up such an injury without at first realising it (as there is no pain centre there to tell you). I really whacked mine, so although the fallout was bad, at least I know what happened!

I would go with his recommendation and see how you go.

Its very likely things will spontaneously get better over time.


#96

There are so many folks in here who get this post-partum…infact Sarah you should start a thread saying “Post-partum and MAV” and see if those folks chime in.

@blueberry0(Sorry for referencing you without permission) had this during post-partum and she is doing well on Effexor + Amitriptyline.


#97

True mine is a post partum mav :frowning:
I am doing much better on nortriptyline and effexor at 37.5. I tried to increase but I feel like crap so for now I will stay at this dose


#98

Have you ruled out the following

Thoracic Outlet syndrome ( cervical elongated C7 transverse process and the cervical rib )

Subclavian steal syndrome

Arteriovenous fistula in brain

Above are also some of the causes of vertigo.

I have posted information on my Facebook page albums and posts. Link below

https://m.facebook.com/gracy.kalath/photos?lst=100001983376674%3A100001983376674%3A1516109746


#99

Neck injury can bring on symptoms of other things. My dizziness started with a head injury


#100

K. In my case, definitely my ear. I squished water from shower into my ear - turns out they are so easy to injure.