Donna…the more I thought about this, I wanted to interject a little more input / thoughts that I had on this subject.
When you went to visit Baloh, I would have bet the farm that he would diagnosis MAV and prescribe Celexa and send you on your way.
If you went to see the (now deceased) Dr. F. Owen Black, I am fairly certain that he would have diagnosed Perilymph Fistula and treating you accordingly.
A different Neuro-Otologist might very well diagnosis Vestibular Neuronitis and treat you with VRT and different medications.
**I am not trying to discount your diagnosis of MAV…I am just pointing out that different physicians have different diagnoses locked in their head and convince a patient that their diagnosis is correct!!!
**
I think it is important to begin keeping a journal (retrospective as well) and try to chronologically itemize all of the issues as they have occurred. Put dates and symptoms as you go along and see if your start to notice a pattern with anything.
Most importantly, do not give up. Do not take a physician’s word that there is nothing left to do that will help. They are not the one that is sick…thus the very poor effort in digging into your case and finding a solution to your unique situation.
Their (the physicians job is this area is a little more convoluted in that the test and diagnosis do not always match up and are not crystal clear.
If we have a patient at my hospital with an ejection fraction of 9% and they are on Inotropes, we know for certain that they are destined for a heart transplant to help fix their clinical situation.
Inner ear / MAV /Vestibular Neuronitis are not as clear cut. Take this medical issue that has nailed you and start taking matters into your own hands…don’t take the physicians word as the gospel and take control of your life!
Todd,
That was very well said. It does seem that our symptoms can fit many different diagnoses. That being said, a doctor is more likely to diagnose something he or she is familiar with, than diagnose something he or she doesn’t know. I have been to countless neurologists that did not believe MAV even existed and many that even if they believed it existed, they said it could not be constant. I wish the medical community would somehow decide on what MAV really is so maybe proper research and treatment can be done. I guess since this illness is not life threatening, there is not much research money going into finding out more. I feel frustrated with the many diagnoses I have received, and you are right, the only reason I even got a MAV diagnosis finally was because I saw a MAV expert.
Christine
Unfortunately, the info is hiding in plain sight. Medscape is the online reference that physicians use more than any other. WE can use it too - it’s free to register. As I posted on the “Constant dizziness or episodic?” thread recently, here’s a quote from their MAV article:
“The manifestations of migraine-associated vertigo are quite varied and may include episodic true vertigo, positional vertigo, constant imbalance, movement-associated dysequilibrium, and/or lightheadedness.”
If docs would only read the Medscape article about MAV, they’d know more about it. The MAV article - written by a group of experts, with a list of meds to try and foods to eliminate - covers the latest thinking about it (I’ve noticed that they’ve updated it more than once since I first read it).
I think two of the biggest problems MAV patients encounter with doctors are migraine itself, which is something too many docs know too little about - and when it comes to the docs who do have some expertise, then egos can sometimes get in the way of providing good patient care.
I think I must have been very “lucky”. I was diagnosed with MAV by two different hospitals in different cities, back in 1996 and again in 2003. It was ME who had to be convinced! I’d never heard of the term before and actually thought they were fobbing me off.
I’d like to agree with Todd that keeping a journal can make all the difference between continually wondering and supposition, to being able to spot patterns in triggers of all kinds and subsequent symptoms. It’s surprising how easy it is to forget and even to attribute symptoms to incorrect triggers and therefore waste time and energy pursuing assumptions that ultimately prove to be false or at least dubious.
I’m not giving up by any means. I do feel really let down right now, but I will keep fighting
I like the idea of keeping a journal and am going to start doing that. I did a timeline and symptom log for Dr. Baloh, but I probably did forget some stuff.
My regular physician has been wonderful through all of this. When I see her or talk to her on the phone, she listens to me and tells me we are going to keep searching for the right medication or whatever else it might take. I am going to start the brand name Effexor on Tuesday. If I don’t have too much trouble with side effects, I will work up to 75 mg. for at least three months and go from there.
The driving issue has really been bothering me all weekend. I really want to try it again and see what happens, but know I will be dizzy because I had a very long car ride yesterday (1 1/2 hours each way) and took xanax before we left, and I was still a dizzy mess. I tried to explain to Dr. Baloh that I am not anxious when I ride in the car, and I feel like he thinks that I am too aware of the dizziness every time I’m in the car and I shouldn’t give in to it. It just doesn’t make sense to me. I have taken up to 1.5 mg of xanax for car rides to check and see if it’s just anxiety and nothing changes (still the same dizziness every time the car moves).
Thanks for the offer to give you a call. I may take you up on it again one of these days
Donna - a quick thought about your driving issue… Even though your dizzies are bad when riding, it’s possible that it won’t be as bad if you’re the driver. (Not saying it’ll be great…) On a decent day for me last week, I drove without any trouble to get to a friend’s house. Then I rode from that friend’s house to dinner and got a bit dizzy as a passenger. As someone who’s always been prone to carsickness, it didn’t surprise me - I definitely do better as the driver than the passenger. That said, on a bad day, I wouldn’t want to be either!
Donna, I’m with Erika. I’ve been prone to carsickness, particularly when I was younger (this is true of many MAV’ers) and I can’t recall ever having that problem when driving; it’s only when I’ve been a passenger. So some of the messages that our brains get from being “in control” when we’re at the wheel may make the dizziness less of a problem. Not that it will eliminate it, but there are degrees of dizziness, as we all know!
And while Baloh may not have given you much hope medication-wise, he may have given you a “gift” in terms of instilling some hope in re driving. It’s possible he was seeing it mainly as an anxiety issue by saying to take the Xanax, but remember that he was also suggesting lifestyle modifications AT THE SAME TIME, so I don’t think he meant to suggest that the Xanax alone was going to improve the driving situation for you all of a sudden.
Do you go to bed at the same time every night? Get up at the same time every day? Little things like that can make a big difference. Not skipping meals, not getting dehydrated, trying the diet, etc.
I have had the same degree of dizziness or worse when I drive from what I recall (I haven’t driven since August). I never had carsickness or motion sickness as a child. I was always fine and could read or do anything I wanted.
I do go to bed around the same time every night, but often wake up in the middle of the night and end up getting only 2-4 hours of sleep lately. I’m pretty sure it’s the hormone thing going on (going through menopause). I’m trying to use meditation cd’s to help, but so far it hasn’t worked.
You poor thing! That lack of sleep is probably a big part of your problem!! Lack of sleep can be a HUGE trigger for migraine, and chronic sleep deprivation is one of the worst things that can happen to anybody’s brain, but especially a migraineur’s. I remember those nights, though I didn’t usually have many in a row. You just wake up, wide awake, and there seems to be nothing that helps you to get back to sleep. It’s awful!
I have a recliner, and the best thing for me was to get out of bed (they say not to stay in bed after 20 minutes of lying there awake - it just makes it worse) and go downstairs and watch the most boring TV show I could find (shopping network or something else really stupid). I’d eventually fall asleep in the recliner. It was easier than falling back asleep in bed. Then I’d eventually wake up and go back up to bed. But it still wasn’t a good night’s sleep.
Have you tried a warm bath before bed? Cool temp in your bedroom? Fan on you (if you get hot flashes)? Ugh - it’s a terrible feeling, so lonely, when you’re wide awake in the night. But night after night - Donna, that’s just awful. And dizzy, too.
Have you tried a Xanax when you wake up? I don’t know if that will work if you’re not awakening from anxiety, though.
I want to echo what MaryAlice is saying–lack of sleep is a HUGE problem for migrainers. Even though the Topamax has started helping me, I’ve found I can still mess myself up if I manage to get a short night of sleep and only get 4 hours or so. And I used to be a night owl–I would regularly pull all-nighters or get very very short nights of sleep for my job, so I’m not someone who was used to getting a regular amount of sleep.
Just based on how my own body reacts, I suspect you may struggle to get your migraines under control if you don’t find a way to get a consistent night’s sleep.
I am not trying to discount your diagnosis of MAV…I am just pointing out that different physicians have different diagnoses locked in their head and convince a patient that their diagnosis is correct!!!
— End quote
Todd – don’t doubt this is the case as I’ve also experienced this when one doc was hell bent on treating my “chronic tension-type headache” problem. It was not migraine according to the old fart. However, in defence of the more switched on physicians out there (Granot and Halmagyi for example), they have approached this with an open mind and through differential diagnosis worked out what was going on with me. This is what their training at University is all about plus understanding the meds. Many doctors obviously feel more comfortable with certain drugs over the others — no doubt some confirmation bias going on here.
When you went to visit Baloh, I would have bet the farm that he would diagnosis MAV and prescribe Celexa and send you on your way.
If you went to see the (now deceased) Dr. F. Owen Black, I am fairly certain that he would have diagnosed Perilymph Fistula and treating you accordingly.
A different Neuro-Otologist might very well diagnosis Vestibular Neuronitis and treat you with VRT and different medications.
— End quote
Funny because I’ve been diagnosed with all 3 in the past 18 months! By 3 different doctors of course :lol:
