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The Manatee Diaries


#1

I’ve been wanting to post an update. My previous story and updates are scattered around in various threads so I decided to just create a diary in this section and post the whole story here. So some of you have read much of it and you can skip the first few posts, which I copied from elsewhere on this site…

Summary

First acute balance issues :
Number & duration of acute phase(s) :
Any suspicious physical event/trauma leading up to dizziness : No
Start of chronic phase :
Age at chronic onset :
Started medication :
Stopped medication :
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped : None
Non-pharmalogical treatment tried which didn’t seem to help : Magnesium, CoQ10
Any personal history of migraines :
Any family history of migraines : No


#2

October, 2017
Hello, everyone! This is my first post and I’m hoping that some of you experts may be able to give me some insight as to what is going on. This is going to be long!

First of all, a poster named GetBetter suggested some definitions in another thread. I’ve added another definition of my own. So in my posts, here are the definitions of the terms I may be using:

  • dizziness = light headed and feeling like you might faint. kind of like pre-syncope
  • vertigo = spinning sensation like you are on a merry-go-round
  • violent vertigo = sensation of tumbling end-over-end; impossible to stand; even when holding on to something it feels like you (plus what you are holding) are tumbling head-over-heels through the air
  • imbalance = walking on foam/trampoline and feeling like tilting or pulling

OK, here goes. I’m female, now age 56. I started having episodes of vertigo around 1995. They were short, lasting a minute or two, I think. Afterward I would still feel “off,” more of an imbalanced-feeling, for several hours. It didn’t happen often, maybe once every few weeks.

I first went to an ENT but don’t remember much about what he told me. The episodes continued. Back then was when information was first starting to be available on the Internet. I had a computer and I think I was able to find a little bit of information about Meniere’s Disease. That led me to a university teaching hospital in the city where I lived. They had a specialist who was a neurotologist, so I made an appointment with him.

At the university medical center, I got all of the tests. The ENG, the rotating chair, and the tilting platform are the ones I remember. After all of those tests, he told me that most likely I had “vestibular neuronitis.” He said that I definitely did NOT have Meniere’s. I am pretty sure that he told me that the tests had shown that the balance system in one of my ears (can’t remember which one) was weaker than the other ear. His recommendation was to take Antivert (meclizine) when needed.

By then I had done some more reading and had found that a low-sodium diet had been found to help Meniere’s patients. I asked him whether it might help me, too. He was doubtful but said that it couldn’t hurt. He said the recommendation for Meniere’s was to keep the sodium intake below about 1500 mg/day.

Over the next 20 years, I did my best to maintain a moderate sodium intake. I continued to have short episodes of vertigo several times per year. I couldn’t ever figure out a trigger for them but it did seem like sometimes they would happen after I had traveled somewhere by airplane. At first I thought maybe the flying had something to do with it, but finally one day I realized that when I traveled I usually had to eat a lot of salty restaurant food instead of my own cooking. So then I thought that maybe my efforts at trying to maintain a low sodium intake were doing some good.

What always scared me about my episodes was that they came on suddenly, with absolutely no warning.

A couple of times when I had episodes that were fairly close together, I called the university specialist and he put me on prednisone for a week or so, saying that it sometimes helped “calm down” the vestibular system.

As more and more medical information became available on the Internet, I would periodically look for new information on vestibular disorders. I started to suspect that “vestibular neuronitis” was sort of a catch-all diagnosis, the one they gave when they couldn’t figure out what was really wrong.

In more recent years, starting maybe in 2014, while I still only had a few episodes a year, the vertigo was becoming much more violent. They still came on suddenly, with no warning, but I started to notice that some of them seemed to be triggered by a visual stimulus. For example, a few of them happened while I was using a computer. It seemed like when I moved my eyes from one place to another on the computer screen was when it happened. Another time it seemed to have something to do with my field of vision suddenly changing (I was a passenger in a car and it happened as we turned a corner and my gaze shifted).

When I say “violent,” I mean violent. Sudden and intense and something that you wouldn’t be able to endure for more than a period of seconds. One time I was seated at my computer when all of a sudden everything seemed to be scrambled and tumbling. I grabbed onto my desk, leaned forward, and I think I closed my eyes, but it felt like I was falling and the desk that I was holding onto was falling with me.

A similar thing happened another time when I was using the computer at a stand-up desk. When everything started tumbling, I grabbed the table but ended up falling onto the floor anyway, as it felt like the table was falling, too (it wasn’t).

I live in a different city than where I lived when I went through all of the testing back in 1998. There is a clinic here that specializes in vestibular disorders, so I made an appointment – this was in 2016. At the first visit, I gave the doctor a copy of all of the test results from 20 years ago and told the doctor that I had been diagnosed with vestibular neuronitis. He looked a little surprised and said, “for how long did you say you’ve had this?” I said, “Twenty years.” He told me that vestibular neuronitis was something that generally resolved itself within about six months. He then looked at the previous test results and told me that they didn’t really show a weakness in one of my ears.

He went on to say that since I went through my initial testing, a new disorder, “vestibular migraine,” had been discovered. He asked me if I ever had headaches. Well, yes, I did get headaches on a regular basis and had for years. But they never happened with the vertigo. (I’d get a headache maybe once every two months, and it would usually last about three days. For years I had thought that they were sinus headaches, because the pain would usually be on one side of my head, just above and behind one eye, and I would get stuffed-up sinuses especially on whichever side the pain was on. I even tried to take decongestants along with ibuprofen, thinking that would help, but it never did any good.)

He suggested that I go through a bunch of the tests again to see whether there might be wrong with my vestibular system.

So in 2016, I went through some of the same tests and some different ones, too. I had an MRI, which came back clean. They did a type of ENG, plus the test on the tilting platform, plus another one that I can’t remember at the moment. The tests are all much higher-tech today than they were in 1998.

After all of the testing, I went in for the appointment where they were going to go over all of the results, and, I hoped, provide me with a definitive diagnosis and treatment. I took my husband with me to that appointment.

The doctor went over everything and told us that all of my tests came back normal, which meant there was nothing wrong with my vestibular system. He then said, in sort of a dismissive voice, “so it’s probably vestibular migraine.” He acted like he had totally lost interest, since he hadn’t been able to find anything wrong with my vestibular system.

I said, “So, what am I supposed to do about it?” He told me to just take Antivert (meclizine) as needed when I had episodes. In other words, THE EXACT SAME THING I WAS TOLD 20 YEARS AGO.

Before that appointment, I had read up on vestibular migraine. It sounded a lot like it might be the new “catch-all” diagnosis when they can’t find anything else. Plus, it seemed too vague – it could manifest itself as dizziness, or vertigo, and might happen with a headache, or maybe never with a headache, and maybe with a visual disturbance, or maybe never with a visual disturbance, and so on.

I was very discouraged. These episodes are scary, and if I happen to be standing up when I have one, I am going to fall. I now have osteoporosis and a fall most likely will result in some sort of fracture.

The next time I saw my primary care doctor, I told her about going to the specialist and going through all of the testing. I told her that his diagnosis was vestibular migraine. The first words out of her mouth were, “Vestibular migraine? What’s that? I’ve never heard of that.” Sigh.

So here I am. I’m wondering whether anyone else has had super-violent episodes of vertigo, like I’ve had. And whether anyone else has had them without being associated with a headache at all. Whether it really is “vestibular migraine” or something else. And of course I’m interested in any ideas for how to prevent the episodes from occurring.

Thanks for listening, everyone!


#3

November, 2017
As you all know, Dr. Timothy Hain in Chicago is one of the U.S. experts on dizzy disorders. I’ve been aware of him for the past 20 years and have read much of his website. I’m not confident in my diagnoses (first vestibular neuronitis, then vestibular migraine) and was considering finding another specialist in our area. I’ve told my husband a little bit about the research that I’ve done, and about Dr. Hain, so my husband said, “Why don’t you just go to that guy in Chicago?”

It would be a long trip, halfway across the country, but I decided to call his office. The woman I spoke with explained that for out-of-town patients, he will see them once but won’t treat them on an ongoing basis as long-distance patients. That’s fine with me; I figured if he can figure out what I have and what I need to do, I can find a doctor here who will follow his recommendation. She said that his first opening for a new patient would be in February, but that for out-of-town patients they require them to first fill out his online questionnaire. Then he reviews the questionnaire and determines whether he is willing to see the person before they will schedule an appointment.

So I filled out the questionnaire, which probably took a good two hours (no exaggeration). It was extensive and I had to dig out all of my test results, plus list every drug, vitamin, supplement, etc., that I now take or have taken in the past five years, plus answer all sorts of questions about my symptoms. The questionnaire also had a few open-ended questions where they allowed up to 3,000-character responses, so I used those to write as much as I could about my history and such.

I submitted it probably about mid-morning on a weekday, expecting to hear back in maybe a week. To my surprise, at 5:00pm that same day I got a call from his office. Wow! The woman who called said that he had reviewed it and that I am a candidate to be seen by him. Woo hoo! But she said that because I am so far away, he gave her a list of four neuro-otologists closer to my home in case I would like to avoid such a long trip.

I told her that I’d investigate the list of doctors and then if I still wanted to make an appointment in Chicago, I’d call her back. A trip to Chicago in February isn’t particularly appealing (snowstorms are a possibility), so I reasoned that if one of the closer doctors sounded promising, maybe I could try him first and then if I still wasn’t satisfied, I could make an appointment to see Dr. Hain and by then it would probably be for April or May, which would be much better weather for traveling.

So, I researched the other three doctors and made an appointment for January with one of them. Interestingly, he’s an expert in BPPV and has taught the Epley maneuver alongside Dr. Epley himself. He has also invented a couple of surgical tools.


#4

January, 2018
Hello, everyone, a quick update and I will write more later. I saw the neuro-otologist today. He was great. I told him that we had driven over last night from the other side of the state. He looked a little surprised and I told him that I had originally called Dr. Hain’s office and they had told me that if I first wanted to try someone closer to home, Dr. Hain had four recommendations for specialists in Florida and he was one of them. His first question was, “Who were the other three?” I laughed out loud at that.

I only had time to ask him a couple of questions from the above list but I think I did get some valuable information from him. I had forgotten about trying to record the conversation but my hubby did and said he got the full 30 minutes. I think the sound quality is going to be good enough for me to transcribe the conversation so when I do that I will report back.

Quick highlights:
–For me, he thinks it’s neurological in origin but I don’t fit the profile for vestibular migraine. He’s thinking it’s some sort of neurological problem, maybe even short seizures. But his thought for now is that I should try nortriptyline, starting at 10mg for a few days to see whether I tolerate it and then progressing up to 30mg/day. So I’ll be searching the past posts to get more info about that drug and how it has affected others. He admitted that the drugs are all sort of trial and error, and when I asked about side effects (and told him that some people on the forums have reported bad side effects) he said that in his experience every person is different and reacts differently to the drugs. He said that if that one doesn’t work his next choice is Topamax and then after that would be a calcium channel blocker.

–Toward the end of the visit we discussed the “vestibular migraine” diagnosis, which is a fairly new diagnosis for the medical community. He said that a lot of doctors don’t believe in vestibular migraine or are very skeptical. I told him that someone on the forums has described it as a sort of “hand waving” diagnosis and he nodded his head in agreement. He said that five years ago, he didn’t believe vestibular migraine existed. But some of the other specialists (he mentioned Hain and maybe another name) convinced him to try some of the migraine treatments (such as nortriptyline). So he did, and he said that patients started coming back to him saying that he had changed their lives for the better and treated him like a god (he didn’t say that last part; my embellishment there). So his attitude toward vestibular migraine has changed and he’s more convinced that it’s a real thing.


#5

March, 2018
I’m now wondering whether my issue may be vestibular paroxysmia. @Bex85, my only symptoms are short, severe attacks of rotational vertigo. As you described, “the most severe I could ever imagine.” Mine last maybe 30 seconds or so, and they only occur once every 2-4 months.

Unlike @Bex85’s case, I don’t have any lingering symptoms afterward, at least not lasting two weeks. I may feel “off” or slightly dizzy for a couple of hours afterward. My most recent attack was a couple of weeks ago and I was fine almost immediately afterward.

I’m scheduled to see a neurologist next month and will be asking about this. I’ve had an MRI of my head but I don’t know whether anyone was looking for the signs of vestibular paroxysmia when they reviewed it. I have the MRI on a CD and will be taking it with me to the appointment.


#6

April, 2018
I saw the neurologist yesterday and he agrees that I may have vestibular paroxysmia!

I waited two months to see this guy. A couple of weeks ago I mailed his office a copy of all of my previous test results (all of those balance tests, ear testing, MRI, etc.). It was almost 50 pages. With it, I included a two-page letter to the doctor where I explained my 23-year history of (mis)diagnoses. In the letter I mentioned that I had recently read an article about vestibular paroxysmia and that my husband and I both agreed that it seemed to fit my symptoms better than anything else.

I hadn’t corresponded yet with @Bex85 when I wrote the letter. After she so kindly provided me information about her attacks and her treatment in the posts above, I was even more convinced that this was probably my diagnosis. I read every PubMed article that I could and I printed several of the ones written by Michael Strupp. I also printed some of the above discussion thread where Bex85 explained what dose of carbamazepine she started on and how she tapered up. I took all of that with me yesterday.

When I got there yesterday, a nurse first called us into a room where she took my blood pressure, temperature, etc. Then she asked us to go back to the waiting room until the doctor was ready. He came out himself and led us into his office instead of an exam room. We walked in and had barely sat down when he said, “I’ve been reading over the documents that you sent. I think your diagnosis may be correct.”

I looked at him and said, “Vestibular paroxysmia?” He said yes. So we talked for a while about my symptoms, history, etc. He agreed that I should try one of the drugs. I pulled out the printouts of the above posts and told him about Bex85’s description of her attacks (which sound almost identical to mine), her drug dosage, and how she tapered up, and he read all of that. Then I gave him the articles written by Michael Strupp, and an article from Dr. Hain’s website where he has a little chart listing four different drugs, the dosages, and some comments about each.

He decided to start me on oxcarbazepine. I am starting at a low dose and will work my way up.

He did say that I need to watch for any allergic reaction. I am allergic to three different drugs and he said that might make it more likely that I could be allergic to this. So I have to watch for a rash and stop the drug if that happens.

I am really hoping that maybe this is finally the answer to my mystery. And I am keeping my fingers crossed that I will be able to tolerate the drug. I took the first pill this morning and so far, so good!


#7

May, 2018
I ended up having an allergic reaction to the oxcarbazepine after about 10 days of taking it. So the neurologist switched me to Keppra (levetiracetam) and I began taking it around May 1, 2018.

June, 2018
I weaned myself off the nortriptyline. I decided that there was probably no need for it, plus it was still causing a dry mouth and constipation.


#8

October, 2018
It is time for an update. I’m almost afraid to put this in writing, for fear that I might jinx myself.
I’ve been taking the Keppra for almost six months now, with no noticeable side effects. My last episode of “violent vertigo” was in March. Since then I have had no episodes of the violent vertigo, and only one day of mild-to-moderate vertigo (which I was able to control with meclizine). So, I am hoping that the Keppra is going to be the answer! I think I’ll be even more sure if I can go another couple of months with no episodes.

An interesting “side effect,” maybe, is that I think I am having fewer headaches since I began taking the Keppra. It’s not normally used as a migraine treatment, and no one has been able to tell me whether my headaches are really migraines because my symptoms don’t quite fit into the migraine definition. (The headaches have never coincided with my vertigo or resulted in any sort of vertigo.) I had started keeping a medical diary about a year ago, to log both my vertigo episodes and my headaches to see whether there was any sort of connection between the two. There wasn’t, but I was kind of surprised to see that I was getting the headaches every 3 to 6 weeks. (I didn’t think it was that often.) Anyway, I think I’ve only had one headache in the past 3 months, so if the Keppra had something to do with that, I’m all for it.

I am indebted to @Bex85 for her posts here and her private messages back and forth with me. Her experience helped me convince my neurologist of my possible diagnosis.

And I am indebted to all of you here for your advice, research, support, and encouragement. And especially to @turnitaround (James), for stepping up to take over the management of this forum when the original owner had to step down.


#9

Hey Anna, uber happy Kepra is working for you. Pray it continues forever.


#10

Really good diary, great to bring it all together. Must start one myself. Great to hear you are improving, delighted for you x


#11

Hi Anna
Thank you, your experiences are really interesting and illustrate how we need to be our own advocates in order to get the right diagnosis and treatment. It is good to hear that you have finally found a medication that you can tolerate and that works. Very inspiring. :blush:


split this topic #12

2 posts were split to a new topic: New to this forum and of course looking for some answers


Dr Joel Goebel