Just got back from my Neurologist…I gave him some reading material on MAV that Scott sent to me by e-mail and he said he would read it later. I verbally went over all my symptoms again…gave him some repeat history and other information regarding my condition and he says that he believes I have a Vestibular and Anxiety condition. The vestibular condition he referred to is i believe he said Vestibuleropathy (spelled). In other words, my inner-ear most likely does not function correctly and anxiety medication is the only treatment and there is no other treatment for this. Dr. Cole said that if he thought i had Menieres (which he does not believe is the case…nor do i)…there is some treatment for that. He also does not believe i have Benign Postional Vertigo because it should not have lasted this long. Also…he said that the fact that a number of years ago when i went to Stanford Ear Institute and they did a number of Vestibular tests which i was able to perform except the very last test…the ENG. I had to have the test stopped in mid-stream because it made me sick and i had to throw up…so he said…people with Migraines don’t have problems with the ENG. A person with a Vestibular condition would mostly have a problem with it. I told him that i use Vestibular Exercises on occasion when the motion gets really bad and it gives me a little relief. Dr. Cole said…this is another sign of a possible Vestibular condition. Another thing he said was the fact that anti-anxiety medication has been the only medication over 16 years that has given me some relief points to a Vestibular/Anxiety conditon. He says the Xanex helps to suppress the inner-ear nerve. He does not feel confident that my condition is Migraine. I told him that i belong to a MAV forum and a number of folks there are on anti-anxiety medication. He did not say anything to that. Dr. Cole said that many of vestibular symptoms are similar to anxiety symptoms.
At the end of the session i picked up from him that he has no interest in pursuing to help me and i felt similar towards him. So i will see my general doctor at the end of April and see where we go from here. I can also get in touch with “Patient Advocate” and ask if they will help me see a private physican (outside of the Va). After 16 years…i continue to go in circles with this condition. Is this a Migraine, Vestibular, Anxiety or a combination?
Joe, how do you feel about what your doctor told you? Sounds like he kind of left you hanging there.
I looked up vestibuleropath but can find almost nothing on it. What exactly is it?
As far as the caloric part of the ENG, from talking with others I have heard that those with MAV do terrible with it, much worse than those with MM or other disorders. I’m thinking if one’s vestibular functions were off and/or not working don’t they fare better in this test, as far as how they feel physically that is, because they don’t suffer the vertigo? It is those with fully functioning vestibular sytems who get the most vertigo. Maybe I’m wrong about that.
Is he suggesting it is anxiety related because Xanax helps?
The doctor has made me feel more confused. Seems like each doctor has their own version. Drives me batty! I had heard on another forum that if your vestibular functions are doing well then chances are you would be more affected by the Eng. I probably should have mentioned that to him. The doctor said that he believes there is a good chance i have both (vestibular and Anxiety)…and the Xanex helps with both conditions. As far as Vestibular conditons…when doctors can’t figure out what kind of Vestibular condition that you have…it’s called Vestibularopathy or if that spelling is wrong i know for certain the last few letters of the description were “opathy”. So maybe it is vestibulopathy…and he said there is very little a doctor can do othern than anti-anxiety medication because it calms the inner-ear nerve down. I even told him i saw one of the best doctors in the country at UCLA (Dr. Robert Baloh)who diagnosed me with Migraine Equivalent…and he just looked at me with a Stone Face.
he said…people with Migraines don’t have problems with the ENG.
That’s absurd. How can he say that when it is documented in the science literature that migraine CAN cause screwed up results on an ENG? This is a known fact. To me that suggests that you could easily fail an ENG test or at least have a nasty reaction (throwing up) if you are a migraineur. When I went through the caloric test, it showed no permanent damage although I am very certain I initially had VN. I didn’t react with wanting to vomit but instead became HUGELY anxious instantly. The inner ear stimulation triggered a massive panic attack. It took me 2 weeks to recover from it. Perhaps VN had something to do with that reaction but I can tell you that if I was subjected to a claoric now, I’d be a train wreck for days.
Joe, by pegging it as a “vestibulopathy” sounds to me like he’s just saying “something’s not right in there”. It’s a generalisation because he doesn’t know what else it could be. Personally it sounds to me like Baloh would be more a reliable person to trust on this.
he believes I have a Vestibular and Anxiety condition
That made me laugh actually. That’s like you walked into the surgery with an apple on your head and he said, “you have an apple on your head”. It seems to me he just doesn’t get that anxiety can be solely a result of the physiological upset caused by a messed up balance system. He may be partially right that you do have an element of fear that you have over this. What do you think Joe? If you had to make a guess on this, do you think that a significant amount of the anxiety generated (mostly all of it) is simply physiological or would you say some is your own fear too? It’s hard to separate at times I know but I’ve observed my body reacting with anxiety as a direct result of an attack and had nothing to do with my thinking most of the time.
Have you been through most of the migraine meds? I can’t remember where you’re at. Often a MAV diagnosis can only be certain when the patient reacts positively to a migraine med.
Too bad he wasn’t a more engaging doctor. Sounds like his bedside manner was very average at best.
he said…people with Migraines don’t have problems with the ENG.
That’s absurd. How can he say that when it is documented in the science literature that migraine CAN cause screwed up results on an ENG? This is a known fact. To me that suggests that you could easily fail an ENG test or at least have a nasty reaction (throwing up) if you are a migraineur. When I went through the caloric test, it showed no permanent damage although I am very certain I initially had VN. I didn’t react with wanting to vomit but instead became HUGELY anxious instantly. The inner ear stimulation triggered a massive panic attack. It took me 2 weeks to recover from it. Perhaps VN had something to do with that reaction but I can tell you that if I was subjected to a claoric now, I’d be a train wreck for days.
— End quote
Couldn’t agree more. Seriously, that made me look a bit “what the f**k?”. Feeling sick from an ENG is a STRONG sign of migraine according to many professionals, one of which I’ve spoken to who happens to be an ENG technician.
Here’s at least two articles that shows your doc was full of it when he said migraine does not cause problems with the ENG. Complete bull. Also, some brief info on the comorbidity of migraine and anxiety. Both of these articles are recent. Your doc probably has info from the symptom-free periods only. He hasn’t done his homework. One thing you can be certain of about Baloh is that he READS the scientific literature. He has to because he’s a prolific publisher of studies in the migraine vertigo field. You should have asked this guy if he ever reads anything. That would have got you stone-faced stare for sure. Wish I was sitting there too … I would have got stuck right into him. Good on you for stating your case. Scott
Joe, it sounds to me like your doctor never heard of MAV until you walked into his office. Maybe he will read the info you gave him and change his mind (but don’t count on it). Many doctors don’t see this as a “real disease” and that is part of the reason I have problems accepting it as well. If they don’t believe in it, how can I? You doctor may think you are talking about regular old migraine, not vestibular migraine.
As far as the anxiety - Even though the many doctors I have seen can’t tell me what I have, somewhere along the line someone told it isn’t anxiety, even though I may be anxious. This greatly relieved me as I don’t like hearing “oh, you’re just anxious.” In my case, as most others, the vertigo causes me to be anxious, not the other way around. Feeling like this day after day, week after week, year after year would causes the bravest of souls to be anxious.
Xanax, valium, ativan, these all help with this and it isn’t because they are helping the anxiety part (though they do), it is because they are calming down the inner ear, dizzy, vertigo part. Those drugs affect that part of the body which in turn, helps take away the anxiety, because that “thing” that makes us so anxious, the vertigo, unsteady, dizzy feeling is not there when under the influence of the drug. Yes, unfortunately it’s only a short term temporary fix not a total cure and really, I don’t want to become addicted to it so I take it only when I really need it, but there are plenty of people who take it regularly,
I won’t even take the ENG test, just thinking about it makes me sick. I’m pretty sure following blinking lights and turning my head this way and that way etc would put me out of commision before I even got to the pouring water in my ear part.
Joe all I can say is since I started taking the small dose of Valium my symptoms have decreasd a lot. I am not sure why and noone has really been able to explain it to me as of yet.
I have an appointment with another neurologist in May perhaps he can give me some information.
Whether it has just settled the anxiety to a cope able level or whether it has improved the condition overall I do not know all I know is that before I started it I was not able to hardly function and now I am much better and able to do a lot of the things I could not and was scared to do prior to starting this medication.
Maybe someone else has an explanation , I sure do not.
Thanks everyone who shared their thoughts regarding my wacky Neurologist appointment. I’m going thru another one of my confused states again. It’s like i want to take a break from the doc appointments. Even if my condition is mostly an inner-ear problem that just malfunctions(semi-circle region)… and there is no name for it at present…then i’m very limited on treatment. I take a tab of xanex daily and that gives me help. As far as Migraine there are many drugs a person can experiment with and also for depression and anxiety. Mal de debarkment syndrome is another condition i believe with few choices for treatment.??
Since 1992 i have tried a number of SSRI’s…Elavil &Verapmail…many others (i forget there names) + topamax and NONE of them have helped me except Xanex and to a slight degree Verapamil. So where do i go from here? I think it would be a waste of time to see another Ent or Ear specialist. I believe i would be better off seeing another Neuroloigist who specializes in Migraine. I feel very confident i do not have an Anxiety Disorder…yes i have my days that i worry a bit too much and a little anxious but it’s not everyday. I have anxiety but it’s mostly due to this motion condition. I need to make a decision if i want to ask the Veterans Administration if they would be willing to send me to a private physician (Neurologist). They sent me to see Dr. Baloh a couple of years ago and paid for both visits…so maybe they would be willing to send me to another doctor who is very well read on MAV. I already have a doc in mind.
So i need some time to decide on my next move. I’m exhausted!
Joe, I feel the same as you. Having gone through all the ENT tests more than once years ago, I dont want to go down that inconclusive route again. Anyway, I have been on the serc (betahistine) for 10 years now, and dont want their operations which mostly seem to help people only temporarily. I chose to go back to the neurologist (next week).
Apart from that, I am waiting on some research that should produce some results soon on the Chronic Fatigue side of things.
Could you go see an otoneurologist? That is a MD with a specialty in otology and neurotology? I have seen ENT’s, Neurologists and Otoneurologists and, in general, the later seem to have the most knowledge about the diagnosis and treatment of dizziness.
Christine…what is Serc? Yes…at this point i think an informed competent neurologist would be the most helpful.
Kritlyn,
I went to see Dr. Robert Baloh at UCLA…i believe he is an otoneurologist?? If i’m wrong here…please someone correct me.
If i’m feeling motion and tension pultizing in and around my head 24/7 then it appears this would be more of a migraine/vestibular condition rather than an anxiety condition.
I’m doing another little test on the Verapamil that i’m taking daily. Last night (right before going to sleep)…i noticed when i got into bed and did not take my 2nd pill of verapamil…there was more motion than normal. So in about a half hour i got out of bed, took my pill, and within 10-15 minutes seemed like things improved somewhat and i fell asleep. So i’m going to do this same routine for the next few days and decide if this drug is really giving me a 10 to 20% improvement.
How much verapamil are you taking daily and how long have you been on it?
Serc (betahistine) is what they give for inner ear problems, it is supposed to help the blood flow to the ear and drain away fluid. I am very sensitive to meds and never had a problem with this. It takes a while before you see an improvement but I think it has helped over the years. Up until this last 6 months I was doing loads more daily stuff, shopping centres etc.
Christine
For what its worth, I think dr cha at ucla (think shes an adept of baloh or something) is currently undergoing a study of mdds + other causes of phantom motion perceptions. I say “I think” because I know for a fact about the mdds part, but am not entirely sure about the other causes; altough I think shes doing that as well.
Its a study conducted with a functional MRI and later I think theyll be usin PET-scans to map out where the problem-area is.
I would be suprised if MAV wouldnt show up on a pet-scan. Has anyone here taken one? Theyre quite expensive I think.
Christine…i was taking two tablets per day (morning and before bed-time)…which is 240mg. Recently i cut it down to one tablet per day and currently experimenting with it to see if this med is really giving much help. I know it helps some… but trying to figure just how much?? Been on Verapamil for about a year. There have been a couple of times where i weened down and noticed that the motion and tension increased…but i want to experiement one more time.
Mikael…you are right…Dr. Cha is undergoing some type of study regarding MDDS. I found this out from a friend. Hopefully they will receive some important info and apply that knowledge towards Migraine.
Wish I was sitting there too … I would have got stuck right into him. Good on you for stating your case. Scott
