Going in and out of denial- Newbie

Hi Everyone:

I am new here, but not new to vestibular issues, etc. My story is probably typical, I started with Meniere’s in my R ear, had shunt surgery, Meniere’s moved to my left ear, had shunt surgery. BPPV set in to my L ear and I had canal plugging surgery. Now I am a serious vestibular challenged person and go to rehad weekly. One of my Doctors is Dr. Hain. I saw his partner last week in Chicago and we once again discussed MAV. Now that the BPPV is taken care of he said my nystagmus is much clearer (without twisting) and it looks to him like migraine. I had a hard time buying into it because I have no headaches, just every single other symptomn. A couple of years ago Dr. Hain put me on verapimil for MAV and I must say it worked and I felt GREAT for about 3 months and then because I CONSTANTLY go in and out of denial I quit taking it because I had the WEIRDEST most vivid dreams. Well, we decided to go back on it and I am a week into it again and I do beleive it is starting to make a difference. Why is it when something happens to the vestibular system it opens up the flood gates and EVERYTHING that can happen to the vestibular system occurs??? Is it just me? ANyway to those of you who take verapimil, do you get funky dreams and if so how do you stay on the stuff? Is there a solution?

Thanks for any info you can give to me-
Sheila

— Begin quote from “Shedizzy”

ANyway to those of you who take verapimil, do you get funky dreams and if so how do you stay on the stuff? Is there a solution?

— End quote

Shedizzy,

It sounds like you have been through the ringer. I am on Verapamil, and I do get the “weirdest, most vivid dreams,” but I have had those kind of dreams my entire life, naturally. Occasionally, I share my dreams with others. You should see the reactions! :lol: Actually, it becomes very tiring because I wake up every night remembering at least one crazy dream if not several, so I never feel rested. The solution for me, which hasn’t solved my problem 100% but it helps, probably isn’t going to be helpful to you but I thought I would share anyway. I take Wellbutrin for depression, which my doctor diagnosed years ago when I went in complaining that I couldn’t sleep. Of course I had others symptoms of depression as well as a family history. The Wellbutrin helps me sleep and settles the dreams somewhat. I tried going off of it when I started the Verapamil because I didn’t want to have too many drugs in my system, and I read that Wellbutrin may be a potential migraine trigger, but the dreams got out of hand again. As soon as I went back on the Wellbutrin, the dreams were back under control. Maybe a sleeping pill such as Ambien or even something over-the-counter would help you. Ask you doctor.

Welcome and good luck!

Marci

Hi Sheila,
Wow that is one of the reasons I ditched going higher on my verapamil, I was on 320mg a day for a long time, my dreams were horrific, normally for me my dreaming is already pretty vivid so I didn’t need any help in that department.I found myself waking crying.
Verapamil was so good at 320mg it gave me much less motion in the ocean, I felt like a loser stopping that dose, I gave it a long time to settle, and it didn’t
I don’t think your dizzy ordeal is that different to many mavers, I know people will chime in and say hello.
They’re a wonderful group here.
You might find if you say Hi and introduce yourself in another topic, you might get a lot more feed back,
Most people are shy?
You’ve chosen to take your own journey to find health, and remember, you are you own health advocate.
Read learn and listen.
Promise we wont bite. Hehee.
jen

Thanks Jen and Marci- good points! I did think of a sleeping pill to combat the wacko dreams, maybe I will call the doc and give it a try. As I have been going through and reading the posts many many people on here have written a description of their isuues and it describes me to the “T”. This is a great resource! Invisible hedaaches??? Who knew-???

I was a vivid dreamer until I was put on Zoloft as a preventative. Took my dreams away :cry:

I would start Verapamil just to get them back except my rest heart rate is about 55.

If my HR=55 I’d be flat on my back. I’m lethargic when my HR goes below 70.

Heather

WOW 55 hr? That is very very calm…I would like that sometimes!

When I was dancing, my pulse was as low as 48. It feels perfectly normal to me.

Sheila,

You’ve been through quite an ordeal with this and yes, I suspect you’ll find a lot of other folks here with similar stories.

I’ve had multiple other diagnosises and serveral surgeries before arriving at this point as well. A quick recap of some of the other things we tried:

Chronic Sinusitis leading to Sinus Dizziness Sinus Surgery
Abscessed tooth Pulled the tooth
Eustacian Tube Dysfunction Ear Tubes (did this twice over two years)
Superior Canal Dehiscence Syndrome Mid Fossa (through the side of the skull) dehiscence repair

In each of these cases I was excited that we’d finally found the source of the dizziness only to be disappointed when the symptoms failed to resolve post surgery. I think in my case its a matter of the “if you look closely enough you WILL find somthing” principal. In his book “Heal Your Headache” Buchholz cautions against doing too much testing when conditions fit the profile of migraine. All too often extensive testing will find something - even if it has nothing to do with your symptoms. This can lead to dangerous and unnecessary surgeries as well as wasted time and money.

Please don’t misunderstand - I’m not saying this is true in your case. As there is abundant evidence that migraine can damage the inner ear, it is quite possible that migraine caused you to develop both Meniere’s and BPPV.

About Verapamil: I started Verapamil 6 weeks and 1 day ago. The last episode of vertigo I had was on the day I started taking the drug. Prior to this I was having episodic vertigo approximately once a week. I’m far from cured as I continue to experience significant imbalance but the disabling vertigo does seem to be gone - praise God. We’ve recently increased my dose of Verapamil from 120 mg/day to 180 mg/day and I’m hopeful that I will see additional improvement. I’ve noticed no changes in my dreams at this dosage but, I’m a big guy (240 lbs) and even 180 mg/day of verapamil is still a fairly modest dose of medication for me.

Welcome aboard and keep heart - we’re all going to beat this thing.

Chaz

Thanks Chaz:

Yes, as I learn more and more about MAV I find that my symptomns more match this. I am pretty sure I do have atypical meniers because my ECOG test show bib dificeincies in the hot and cold water testing. I just haven’t lost any hearing (which to me is a VERY good thing)

I have been on verapamil a week now and…I DO notice a difference, I thought it was maybe too soon to notice but I am telling you, I feel way better, today I increase from 60 mg to 120 mg. I DO have weird dreams again, but I figure sooner or later my body will adjust.

Thanks for your reply, all of you are more than wonderful here- here is a question- Is this a lifelong thing like Meneire’s? Do peole ever cure this or just control the symptomns? Can it be fatal? I used to say with Menieres if won’t kill me it will just make me want to be dead : )

— Begin quote from “Shedizzy”

here is a question- Is this a lifelong thing like Meneire’s? Do peole ever cure this or just control the symptomns? Can it be fatal? I used to say with Menieres if won’t kill me it will just make me want to be dead : )

— End quote

No, it won’t kill you, but you may want to kill someone else on a bad day! :twisted:

Seriously, my neurologist always starts my appointments with, “The good news is your tests all look good. Your brain and heart are healthy. You should live a long life. Now, we need to figure out how to make you feel better.” He says some patients with this condition just get better. It goes away over time. Others have to manage the symptoms the rest of their lives. I’m hoping to fall into the former category. :wink:

Okay, I retract my statement about verapamil not producing vivid dreams. Last night was like the “Pan’s Labrynth” (didn’t actually see the movie) of dreams. Not exactly unpleasant - I kind of like to dream - but very vivid and it went on forever. Wonder if this medication could somehow be keeping me in REM sleep longer than normal? Anyway if thats the worse side effect and if the vertigo stays gone I’ll happily stay on verapamil for life.

About your Meniere’s diagnosis: You’ve got me really interested because at one time I was pretty well convinced thats what I had. There were always two big problems with Meniere’s fitting me. First, the episodes of spinning vertigo were too short. My longest went about 10 minutes (hellish) and the criteria for a “Meniere’s type” attack is 20 minutes or longer. Second, although I have every other ear symptom imaginable (tinnitus, fullness, etc.), I do not have hearing loss. I’ve had no less than 3 neurotologist tell me flatly that they would not diagnose Meniere’s unless we documented hearing loss. Opinion in the medical community appears to be shifting on this issue with fewer and fewer docs willing to call episodic vertigo without hearing loss atypical meniere’s. I’d be interested in knowing if your dizziness/vertigo is a good fit for meniere’s.

With regard to weather or not we’re going to be like this for life I’m going to insert some text from a post that I wrote a couple of weeks ago. Just my theory - for what its worth:

Numerous studies dating back many years indicate that the “natural course” of Meniere’s disease is improvement and ultimately resolution of vestibular symptoms. If MAV is as common as they now believe, you can bet that many of the patients in these older studies actually had MAV as opposed to true Meniere’s. So it’s logical to think that, based on these studies, MAV should have an improving trend over time.

Chaz

Hi: yes, my dreams are very detailed and seem to go on forever. From one subject to another to another, so far it has not really bothered me this time, but if someone psycho analyized my dreams they would lock me up, I am sure of it!

As for menieres - The first to label me was Dr. Shea III In Memphis. I had it only in my R ear at the time, he did the first shunt. He said it was endolyphatic hydrops. My local ENT did several ECOG’s and the lot of tests and said it was Menieres, atypical. I now see Dr. Hain in Chicago along with my local ENT. Hain has never been convinced it is true menieres because of the lack of hearing loss. He does agree my vestibular system is a mess based on test results. He once told me if only you would lose some hearing he would try gentamicin. (no thanks?)

I have only had rotational truely rotational vertigo once, that was after my canal plugging surgery. My vertigo is not episodic, it is pretty constant with no real breaks. Mine feels as if I am at the top of the highest rollarcoater shooting straight down. I have been told more than likely I have saccule damage because that is the gravity sensor in the ears. I have everything else, tinnitus, fullness and oddly the shunts have helped me. Like I said before I go into denial every now and again especially with menieres and in the past with MAV, so who knows? I have something seriously messed up - an inner ear thingy - no matter what it’s called : )

So far verapamil has help, fingers crossed!!! I like the thought of possibly “outgrowing” this !!

Hmmm and Hain doesn’t know how toxic gentamicin is? :shock:

Hi Heather,
I think they use Gentamiacin ,
in some people who cant be helped in any other way, to knock out the vestibular totally, it stops the wrong signals from vestibular going to the brain . Then they retrain the body to rely on the brain and other senses, through physio
It’s a very last resort therapy and one I wouldn’t go near.
I’d rather stick my tongue in light socket first.
It can take a while to regain stability.
Ps ,
I have no idea what I’m talking about, lol
jen 8)

It sounded valid to me :lol:

Heather

— Begin quote from “jennyd”

Ps ,
I have no idea what I’m talking about, lol
jen 8)

— End quote

We should all be so humble :slight_smile: