MAV, MM, both, or something else? You make the call

Specific Illnesses & Conditions Meniere's
1

Below are some notes I’ve taken for my doctor. I started on the new regimen with this new doctor in early August. I was previously diagnosed as atypical Menieres by another doctor. This doctor felt I was on the border, or might have both. He leaned more towards MAV. I have a follow-up appointment next week.

I’d appreciate your thoughts and feedback on this.

  1. Responded quickly to Verapamil. Within days of taking the prescribed dosage, I felt a difference. Since late September, however, the effect of the Verapamil hasn’t been as pronounced. The recent reduced effect of Verapamil might be due to taking the sleep medication, Ambien.

Throughout this illness, I’ve experienced trouble sleeping because of the pressure in my ears, and I finally decided to try a sleep medicine during the fourth week of September. Ambien works quite well as a sleep medication, but it seems to increase the fullness/pressure in my ears, causes dizziness shortly after taking the medicine for a short time, and increases the overall sense of disequilibrium on a consistent basis. I’ve weaned off Ambien recently, but the problems still remain to a certain extent. This could be due to the recent change in the weather.

  1. The combination of Verapamil and Serc worked well at first. At one time in late August, I was nearly symptom free, which is something I’ve never experienced since the onset of the illness in early 2005.

To be sure, on days where the weather became extremely hot, nearing 100 degrees, I experienced severe headaches, more so than in years past. Additionally, there have been times when Serc actually seems to increase the pressure in my ears, jaw, face, even into my teeth a little bit, and causes a strong headache. This has occurred sporadically since August, sometimes regardless of weather, and increased when I started taking the sleep medication, Ambien. All told, Verapamil seems to be the more effective medication than Serc.

  1. On 5 or 6 different occasions, I have actually experimented with low sodium foods that are known to set off symptoms of MAV. Tofu and soy cause me significant problems. Cheeses, low sodium canned soups, and anything with yeast has been problematic. I’ve never been much of a drinker, but I did notice that a glass of beer will cause more problems than a glass of vodka and tonic. I experimented with this twice, and got the same effect. With all of these experiments, sometimes my symptoms don’t occur on the same day. They will occur on the next day, and with a vengeance. It will take several hours, often up until about noon or 1pm, for the symptoms to subside. The symptoms are severe.

  2. The onset of some recent cold weather (in the mid-30s) caused me some problems again this year. It hasn’t been as significant compared to 2005 and 2006, but it has been rough lately, and remains difficult to handle.

  3. I am still experiencing debilitating pain through the back of my neck behind my ears, upper back (near the trapezius muscles), and near the top of the chest near the clavicle area. This is a dull pain that radiates, causes a lot of muscle tension, and wears me down. At times, I get involuntary muscle twitching in the area behind my shoulders and above the triceps areas. In the past, the muscle twitching actually occurred in more areas (legs). As noted in my previous visit, I can sometimes crack my chest when the tension is especially high. The overall feeling of tension in that entire area increased when I started taking Ambien. The pressure starts behind my ears, on both sides of my jaw, and seems to work downward.

  4. Aerobic exercise continues to be a good temporary remedy for the pain. It’s a nice jolt, probably due to endorphin release. The pain starts to subside about 10 minutes into a 45 minute stationary bike ride. The pain will gradually creep back in within about 3-4 hours of completing the workout. I usually do two workouts per day on the bike to kill the pain. This has been especially helpful during some of the acute rough periods.

It is noteworthy that I reduced my workouts from early September into the third week of September because the medications were working better than treatment programs of the past. I just didn’t need to go to the gym as much. In September, I only did 304 miles on the stationary bike for the month. In October, I did 550 (this is where I’ll be tomorrow). In August, I did 616 miles, but I did that on a 5 week month, and it was physically easier to do than in the past. If I would’ve pushed the envelope, I could’ve gone over 700 miles for that month without much of a problem. The medication was working well despite some the weather-related issues with headaches.

  1. Weight training still continues to be an issue. I can work on my legs without a problem. I can’t do bench presses because it increases the pressure in my ears. I can’t do push-ups because of that same issue as well. Pushing from the upper body increases the pressure.

I can do lat pull downs without too much of a problem. By far, however, the worst exercise is the cable rows for the back. This is an exercise where you sit on a small bench very close to the ground, and grab a small handle attached to a cable and weight set, and pull to the solar plexus level. I used to do this quite a bit before I became ill, and would often do sets of 8 with over 200 pounds. Now, if I move that weight to even around 120 pounds, I will immediately experience increased pressure in the ears, and will have to stop after 5 or 6 reps. If I stand up immediately after the set, I will get dizzy and off balance…extreme rocking sensation. Never happened before the onset of the illness.

I still experience problems when I try do workouts for the biceps and triceps, too. Seems to be something with the pulling motion that sets off pressure in the ears and upper body. Not as bad as the cable rows, but it catches up to me.

  1. I have stopped using the Meniett consistently, and have noticed a slight difference. In context, on one side of the coin, when I was nearly symptom free in late August, I stopped using it, and didn’t notice much of a difference. On the other side of the coin, when my symptoms increased due to weather and Ambien, there was only a mild, positive difference.

  2. Valium continues to be a very, very effective medication. It reduces disequilibrium, muffles the ear fullness/pressure, and keeps the muscular tension at bay for a while.

  3. On my own, I stopped taking triamterene, and switched to dandelion root. The triamterene always seemed to be hard on my kidneys. The dandelion root does function fairly well as a diuretic, and isn’t as hard on my kidneys.

  4. In sum, I believe I have improved due to the new treatment program. In truth, however, I’m still not near where I need to be for my family. I believe some of the negative results are a function of Ambien, but I don’t think it’s a complete overriding factor. I think we need to go to the next step in our treatment program to achieve the goal(s) I’ve set, which is to live a relatively normal life and to be able to work full-time.

2

I have also been wondering if Ambien plays a part in my vertigo. I started taking it about a year before I ever had any dizzy symptoms. My experience of it is different than yours, though. Soon after I take it, my dizziness abates, just before I fall asleep. I understand that it is a benzo-like drug and acts by shutting down the nervous symptom, like Valium does. That’s what it feels like when I take it - similar to the shut-down that Valium gives me. However, if i take it too late at night, or too high a dose, i get a hangover the next day. I try to keep it to a minimum, but I’m thinking more that I should just wean off.

How much were you taking and for how long?

It must be so disappointing to have experienced some great improvement, only to regress again into illness.

Good luck to you,

Julie

3

Started out every day for about 5 days. Cut back to every other day for the next 5. Went to every third day thereafter. Pretty much off it now.

It is a good sleep medication, but it just doesn’t agree with my ears.

4

MSDXD,

I am going to repeat what the two doctors who dx’d me told me. Both were specialized within their specialties at one of the major university hospitals.

The first one was a specialized ENT. He told me that without ever experiencing a violent vertigo attack that he would not dx me with MM.

The second one was a nuerologist who specializes in balance and dizzy disorder already ruled out as inner ear. She told me that a lot of people with MAV get misdiagnosed with MM and/or BPPV because MAV has symptoms of both, and a lot of doctors have not heard of MAV because it is relatively new migraine definition.

5

One of the confusing issues with this is that I had violent vertigo during the early onset. My first attack was about 2.5 years ago. I had several attacks in the first few months. However, that was also during the time I had a severe cold/borderline pneumonia.

After I was put on valium and the diuretic, I’d say that it converted from vertigo to disequilibrium. Sometimes the disequilibrium is severe…extreme rocking sensation.

6

I have also been confused about the etiology of my vertigo. I used to tell people it was post-viral because that’s what used to set it off, and it used to go away as I would recover. Then the big attack hit, i thought again post-viral, which has never gone away. This also occurred after an enormous stress in my life. It seems to have converted from annoying severe dizziness to hellish vertigo and disequilibrium. The aura symptoms started a few years prior to any of the dizziness symptoms, but i gave them little notice - they just didn’t bother me much.

The best I can figure is that I had this syndrome brewing in me over some years and was set off big time by emotional and viral stresses (?)

All this history does confuse the doctors though.

Julie

7

— Begin quote from “Julie”

I have also been confused about the etiology of my vertigo. I used to tell people it was post-viral because that’s what used to set it off, and it used to go away as I would recover. Then the big attack hit, i thought again post-viral, which has never gone away. This also occurred after an enormous stress in my life. It seems to have converted from annoying severe dizziness to hellish vertigo and disequilibrium. The aura symptoms started a few years prior to any of the dizziness symptoms, but i gave them little notice - they just didn’t bother me much.

The best I can figure is that I had this syndrome brewing in me over some years and was set off big time by emotional and viral stresses (?)

All this history does confuse the doctors though.

Julie

— End quote

I think viral is the most likely culprit in my case.

8

I too, was hit by this “monster” following a severe respiratory infection. This was also during a very stressful time in my life. (Was the viral infection due to being run-down and stressed-out???)

It’s clear now that I had migraine symptoms (no-pain) many years before, but very strange that they came to a head when they did. My doctors say it has nothing to do with it, but I have to wonder. I never experienced dizziness until I got sick with Bronchitis, and its been a constant thing during the two years since.

9

At the time it hit me, I wasn’t under much stress. It was just a routine turnaround of a small company. I’d been doing that kind of thing for several years.

The big issue was that it was extremely cold that winter, and I had to be outside quite a bit. Zero to sub-zero temperatures, and it finally caught up to me. When it got me, it really got me. I’m originally from California, and just wasn’t used to it. As the infection seemed to spread, however, it got increasingly worse, and I knew I was in trouble. That in itself created extra stress because it was the first time I’d ever been seriously ill to the point of being hospitalized a few times, and I wasn’t sure what was going to happen, both personally and professionally.

10

Personally, I have a long history of vertigo, going back 30 years to a virus that suddenly made me lose my hearing in one ear. About a decade later I had a bout of BPPV, and my ENG showed some decreased vestibluar function in the ear–which had regained a lot of hearing due to a rapid course of prednisone. I had low grade, intermittant vertigo for some time, and then had a severe episoe of BPPV and the vestibular therapy made things much worse–I was doing it relentlessly in an effort to make the horrible spinning and nausea go away. I saw a neuro-otologist, and he did the rotational chair testing, and just said I had a vestibulopathy, and after I called him one night with horrible vertigo after the exercises, he told me to stop the exercises, and started klonopin. He offered no specific diagnosis or prognosis.
The spinning vertigo subsided into imbalance and terrible nausea. I would be set off by head positions, movement, lights.
After a year of just medications and no idea where this was going, I saw an otologist, who told me he believed there was underlying MAV, which explained the lack of recovery.
In retrospect, I had mal de disembarkment, and lots of low grade imbalance. I used to think I was prone to fainting, but during one “near faint”: my blood pressure was high and the room was moving–it was vertigo.
So, you can have co-diagnoses: I have a damaged nerve, episodic BPPV and underlying MAV.
And, symptoms vary: I’ve had spinning vertigo, imbalance, rocking, bursts of vertigo–you name it.
At this point, I’m relatively stable, but resent the limitations the vertigo has placed on me, and that I place on myself, in an effort to avoid it. I also don’t like taking medications, but I’m stable on them.
So, it doesn’t have to be one or the other, it can be both.
Kira

11

MSDXD, what did Dr. Hain think about the contribution Ambien has made to your symptoms?

Just curious about his input - hope you’re well.

Julie

12

As good and sharp as Dr. Hain is, he couldn’t give me an explanation as to why Ambien would have such an effect. He said he’d never seen that before.

I’m doing ok. Better than during this time in 2005 and 2006, but still, I have a long way to go.

Hope all is well with you.