Finally some hope, at least - Inner Ear Disorders Message Board

coryb · 04-29-2005, 11:04 PM

I don't want to get overly hopeful though. When I do that, it always seems to come crashing down. I travelled to Houston on April 7th to get a 6th neurotologist's opinion on what is going on with my ongoing balance troubles that has severely affected me for well over 4 years now.

Again for those who don't know, I had vestibular neuritis in my right ear back in '95. In 2001, I started to have constant vertigo and so had a nerve section and labyrinthectamy to eliminate the right balance system. Supposedly there was a 98% chance I would recover and not have a major balance problem again, but I didn't. I continued to have problems, and they seemed to just get worse with every passing month. Well anyways, I have spent the last several years going to all kinds of doctors trying to figure out what is going on. The doctors have had all kinds of possibilities thrown at me from all the doctors, including several from one group that said I had Meniere's Disease in my other ear, tests that showed I had Lupus or Sjogren's disease (but were later repeated and shown that I didn't), and many other possibilities such as epilepsy or even MS. None of these seemed to pan out and more importantly, I just continued to get worse. Recently, my balance tests/ENG have shown a hyperactivity in my left ear as well as a hypoactivity in my right ear (about 96% weakness in the right ear). So this did finally confirm that there was a problem, but the cause was still uncertain.

Well, I sent a lengthy letter to the doctor in Houston (I'm from San Antonio), and told him all the details when I visited him. After listening to me describe all of my symptoms, he seemed to jump on the migraine associated vertigo (MAV) diagnosis, despite the fact that I didn't have headaches. He seemed pretty confident about it too. I had actually been told I had that also by the group of doctors that also said I had Meniere's Disease, but I don't believe I was on the medication (Verapamil) consistently long enough before another doctor took me off all my meds. So this doctor in Houston gave me a new prescription for a different medication, Elavil, which I have been taking for 19 days now. Well anyways, I have had a chance to research this stuff and it actually looks to be a promising diagnosis. Quite a bit of the symptoms of MAV actually fit my situation pretty well, such as the vertigo and tinnitus that come in spontaneous pulses, the length of vertigo spells (days), vertigo and tinnitus provoked by head movements, the positional vertigo aspects that I have had, and the phonophobia (sensitivity to sounds). I have also experienced from time to time what could perhaps be classified as a visual aura, with spontaneously appearing flashing regions in my vision, and sparks of light that fly across my vision for several seconds.

So I am now just waiting and hoping that this new medication will have a longlasting effect on helping me get back to a normal life. I only began taking an increased dosage (as the doctor instructed me when I visited) this past Saturday. Since then I have had a number of side effects occur, such as weakness in my arms and legs, flushing of my face and ears, and nausea (which is actually rare for me). For the past few days, I have actually felt better than average, but not exactly adequate, yet. It is very difficult to tell what is now being caused by the side effects of the Elavil, the secondary condition that I have had (supposedly the migraines), the weak but still functioning right ear, or what is just leftover dizziness that I now have to compensate for. But anyways, the next few weeks will be very critical for me and could define the direction my life will take. And I will continue to be cautiously hopeful for the time being.

The support of all of you on this message board is greatly appreciated.

Cory

realbelle · 04-30-2005, 12:52 PM

Hi Cory, that is GREAT news and we will pray that each and every day you see improvement and are 100% here very quickly. You have been through enough and I wish and pray that from now its all the very best for you. Belle

depflephc · 04-30-2005, 02:53 PM

please let us know how you get on .. i think i have MAV .. could describe ure flashes in ure vision a bit better ? are they like random shooting stars ?

coryb · 05-01-2005, 12:46 AM

Belle, yeah I've definitely had my share of hardships with this. Likewise, all I can do right now is to just keep praying that it will finally get better, do my vestibular exercises, and just keep pushing along. Thanks for your support in this.

depflephc, there are really two different things that I see. I do have what you describe as "random shooting stars." It starts and I see the shooting stars flying around for 10-60 seconds. It happens most frequently when I play (or at least try to play) basketball. The other thing is where I will just see a flash of light somewhere in a particular spot and afterwards the area becomes discolored or kind of like a blind spot. It looks kind of like what you see after you look into a bright light. And whenever I blink my eye or move that spot from a dark area to a light area, it flashes. I'm not sure if either or both of those would qualify as a visual aura. Does this description make sense?

Cory

Wowwwweeee · 05-01-2005, 09:37 AM

Hey Cory,

As you may recall, I also have been diagnosed with MAV.

FYI that people usually associate the word "migraine" with "headache", but actually migraine means poor blood flow.

Migraine associated vertigo is actually a spasming of the arteries in the base of the brian (also called basilar migraines). Depending on which artery is spasming, and the length and severity of the spasming, will determine your symptoms to fluctuate in symptom and in length.

A person does not have to have actual headaches to experience MAV related symptoms.

MAV symptoms can be brought on by triggers, such as certain foods, stress, illness, and environment (weather changes, cold wind, barometric pressure, etc). But since a person probably has been dealing with arterial spasming even before symptoms are visable, it just can also happen because it's something that you have, not something that you can catch. It just it what it is, so to speak.

In addition, the visual hallucinations that you are referring to is a typical pattern for migrainal issues. I get them A LOT - but they tend to not bother me when my stress level is decreased. Also, visually those flashes and sparkles (etc) can be due to dehydration of the eye - there's nothing you can do about that - it's a natural part of the aging process and happens to some people more than others - part of the liquidy part of the eye ball tears away from the eye, and the result are sparkles or flashes. It's harmless but annoying if you can a lot of sparkles.

As for the Elavil - this is the first medication commonly used to treat MAV. Elavil's other name is Amitriptyline. I was also on this medication, but had to get off due to side-effects. You may want to speak to your MD about starting off on a LOW dose, and working up. I got complete symptom alleviation on this med by taking 12 mg at night daily. 12 mg. NOT A LOT. Maybe the key for you to is to start with less and work up to more. Make sure you discuss your current side-effects with your MD.

xo