Confused = today's outcome = "possibly vestibular"

OK, so I’m back. The 2.5-hour ride up to Milwaukee is a pain and road construction is everywhere.

Summary: He thinks it probable that this problem involves the vestibular system and/or labyrinth. The decision was to have more comprehensive testing done to help rule out certain possibilities and to discover any possible abnormalities or problems.

Yes, MAV is also called “vestibular migraine,” and he didn’t say “I think you have vestibular neuritis / labyrinthitis,” but he DID focus on those areas (the vestibular system and the inner ear) as quite possibly involved with the problem. He didn’t specify whether he felt those were where the problem was ORIGINATING from.

Unclear as to whether he knows of MAV. He seems to feel that migraine alone is not the root problem, however, and wants additional testing. I will ask him (in an e-mail) if he knows of MAV and what led him away from the existing diagnosis.

He said that both verapamil and Effexor were medicine choices he would almost never use in treatment of such a problem. He felt they were poorly chosen and pretty much said that, in his opinion, SSRI’s/SNRI’s can cause extremely troublesome results.

His thoughts:

  • Believes the 7th and/or 8th cranial nerves may be involved, but not sure. These are the facial nerve and the vestibulocochlear nerve, respectively.
    • In part, this is because some of the symptoms I’ve reported include a feeling of twitchiness in one eye and occasional tearing-up of the other.
    • He also noted that I have a slight “grimace” – or labial fold – on the left side of my face when I speak.
  • The 7th nerve innervates the facial muscles. The 8th nerve is involved with hearing, balance, gravity, etc., and obviously I’ve been complaining of dizziness.

Additional testing suggested or done:

  • Some bloodwork today – including for “EBV titers.” (EBV = Epstein-Barr virus.) Basically blood tests to make sure there isn’t anything infectious, such as Lyme disease or what have you.
  • A CT angiogram. I’ve had an MRI and a “regular” CT scan, but he said this specific type of scan is the only one that can REALLY get a good, close look at the vascular part of all this (basically, the blood vessels in the brain, blood circulation, etc).
  • Additional audiometry tests.

FINAL STUFF:

  • We’re not sure what’s going on, but he definitely thinks more testing is in order. He said to taper off the verapamil permanently (“just because it isn’t doing any harm isn’t good enough – if it’s not clearly helping you, a medicine shouldn’t be continued”).

  • He prescribed acetazolamide, better known as DIAMOX. Another choice was meclizine (Antivert), but I said I’d already tried it, to no effect. Unfortunately, I am ALLERGIC to sulfa drugs!! I broke out in a bright red rash all over, years ago, when sulfanomide was given me in an antibiotic. So, I e-mailed him about that, adding that no “drug allergies?” questions were included on the patient intake forms.

… I don’t know what to think! Does this fly in the face of MAV? Is this a case of MAV being misdiagnosed as a vestibular-based disorder because the dr doesn’t know about MAV? [I don’t know if he’s familiar with it or not.] … Well, for now, I guess the additional testing can’t hurt. Hain could well be wrong. He basically said that the testing done to date was not extensive enough to be able to exclude a vestibular or labyrinthine-related or -originating problem.

Thoughts? The more the better! I’m all confused. (Scott, where are ya?)

Hello,

For what it’s worth, yes, I do think you have gone to a doctor, however eminent and brilliant in his field, who doesn’t specialise in dizziness. I think his diagnosis of VN is almost certainly borne out of little knowledge of the various manifestations of MAV.

I have been on dizzy boards over the years. There has been many a person who has seen someone who may be great at what they regularly deal with, but when faced with dizziness simply don’t have the years of experience and expertise in the field of the likes of Hain or Roach or doctors within a neurotology department.

I understand why you went to see this doc, he was obviously very helpful with your brother’s epilepsy. I don’t know whether you thought maybe there was an epileptic component to this. I have an uncle with the condition and thought the same myself once. In that sense it’s useful as he clearly didn’t feel there was something Hain had missed. However, when it comes to this condition I would trust the diagnosis of someone who specialises in this field a million times over someone who doesn’t. It is a much misunderstood condition, and there are many, many misdiagnoses of VN and menieres along the way. Diamox is also used as a diuretic which is one of the treatments for menieres, I wonder if he is also thinking along those lines

As you know the fact that migraine preventatives haven’t helped you yet definitely doesn’t indicate a misdiagosis, the treatment of migraine is notoriously hard and hit and miss. Both effexor and verapamil are totally legitimate treatment choices for MAV. He’s right they would be of no benefit in the treatment of a vestibular injury, but a huge number of cases of dizziness are attributable to migraine not VN.

One question - did he recommend vestibular rehabilitation therapy? VRT is the gold standard treatment for VN - well that and time. (There is no other treatment apart from drugs like serc and cinnarizine which can temporarily halt symptoms but ultimately hinder compensation.) If you did have VN this is what you should be doing. MAVers find VRT very hard, in general it stirs up their symptoms with little to no benefits unless the migraine is under control. A test for whether you have VN would be if you slowly improve over time with VRT. I did VRT for months but it didn’t solve my problem.

I’m sure this doc is well meaning, but, to summate, I would take what he says with a pinch of salt as it sounds to me like you may have taken a diagnostic step backwards rather than forwards. As you say, there is little harm in having further testing done, blood tests are generally a good idea as very occasionally people have vestibular problems which can be caused by the likes of lyme disease.

H

Hey George,

Glad you’re back - you’ve been missed!

Here’s my two cents’ worth.

a) MAV is difficult to diagnose
b) MAV symptoms can mimic many other conditions
c) MAV symptoms are variable with some commonalities
d) Migraines change over time
e) migraine and MAV seem to be quite highly correlated with a number of other conditions

Given all the above, I think that even if this dr is on the wrong track it certainly can’t hurt to do more tests, at the very least to rule out other possibilites. It seems that to a certain degree a MAV diagnosis is one of exclusion. If you get all the tests at least you will know for sure what you are NOT dealing with, or perhaps you may be dealing with more than one condition.

It is very frustrating, tedious and tortuous to get a diagnosis and then getting the right treatment is often equally painful. Hang in there!

Victoria

George: I understand your disappointment and frustration. We all have gone to Dr.'s appointments hoping to come out with a definate diagnosis and treatment plan. It is so frustrating leaving the Dr.'s office with more questions than answers. I know my diagnosis of MAV was not made until I had all the vestibular tests that there are including the rotational chair test, MRI, caloric test (where they squirt warm then cool water into your ears to invoke vertigo). All my tests came back normal. I also went to 6 months of vestibular rehab and felt worse. After all those tests coming back normal, the Dr. was ready to say that my dizziness was not labyrinthitis, vestibular neuronitis, menieres or the like. My inner ear and hearing were fine so he said the cause of my dizziness had to be “systemic”. That is when the questions and testing turned to the results of hormonal testing I had done and questions of family history of migraine since I had no personal history of migraine. I also had eye twitching and was told that was from eye strain, where my eyesight was blurry and I was trying so hard to focus and spend all day at work using a computer, eye strain was common. Also I believe one symptom of migraine is eye tearing; that also happens to me. I have had the chronic dizziness for almost 3 years.

I find it tolerable now that I understand what is happening. I spend my day using coping skills, like moving slowly, quite often putting cold compresses on the back of my neck; I walk away from the computer for “rest” periods. I have had some of the florescent lights removed from above my work area, I got to the gym at least 3 times a week, I do yoga 2 times a week. Believe me it is not always easy to get through the day, but knowing I have coping skills to get me through the day makes it easier.

Pleae keep us updated as you have additional testing done and learn what the results are.
My thought are with you.
Joan

Hi George,

Sorry to hear you didn’t leave the appt feeling more satisfied. My gut feeling from what you’ve written is that this doctor is not well familiarised with migraine associated vertigo at all. That he did not understand the two treatments that you have trialled tells me that he cannot possibly be up to speed on this and hasn’t been following the literature much over the last 5 years if at all.

I think what the others have said above covers all of the main points: hard to diagnose (by exclusion usually unless you are Hain, Rauch or Baloh) because of this illness’ ability to mimic other diseases. Hannah makes some good points about the 2 meds you’ve trialled being ineffective not being a reason to exclude migraine. We all know how one person’s migraine miracle drug can be another’s nightmare. Second, that VRT appears to be a good way to rule out inner ear problems and compensation issues. You could give that a go and see if it works. Of course if you just felt much worse it would suggest MAV.

I don’t think it will hurt to have those additional tests done to at least help illuminate what you’re dealing with which I would throw money on as MAV. I’m glad Joan chimed in about the eye tearing being migraine. I haven’t heard of that before but suspected it could be a migraine phenomenon.

Glad to see you back on the forum but wish the news was better!

Scott :slight_smile:

Any of you ever watch House M.D., the show about the curmudgeonly but super-brilliant doctor? This guy is basically the equivalent of a “Dr. House” in his field (minus the sucky attitude), and since he’s world-renown AND helped my brother years ago, Mom and Dad thus think of Dr. Hecox as all but infallible.

Dad says he has three big issues Dr. Hain and his practice:
(1) He’s failed to solve the problem;
(2) I basically got the “top guy” (Hain) on the intake visit, and then the “second-best” guy (Cherchi) thereafter; and
(3) I was given a minimal amount of time on followup visits (30 min.) and the doctor(s) didn’t really pay any attention to me all the time when I was speaking (e.g., about the terrible service with the front-desk staff).

Now, can I guarantee that I have MAV? No, it seems likely but it’s not totally provable. Is it possible that it’s affecting the vestibular system? Of course it is. Does that mean the problem is ORIGINATING in there? Well, who knows. Jury’s out. Hecox does feel that they’re definitely connected (the brain and the labyrinthine / vestibular systems), including some of the cranial nerves.

Sure, I COULD try to go back to my folks (and the doctor, for that matter) and argue that I think they’re all wrong, but you know what the response will be (and in a way, I guess it’s hard to argue with): “Who’s the doctor / who are you going to trust – a bunch of people online you don’t even know, or one of the brightest neurologists in the country?”

Hecox MENTIONED migraine, but didn’t dwell on it much. No idea if he knows of MAV. If he does, that’s one thing. But if he doesn’t, well, what am I supposed to do – try to convince the U.S.'s top neurologist that he’s mistaken and that there’s a neurological disorder he doesn’t know of?!

I e-mailed Hecox already to say that Diamox contains a drug I’m allergic to. Not sure yet what he’ll reply with. (He may even say, “Try it anyway, and if you get a rash again, stop.”) So, I’m not sure where to go from here.

I’ll post a little more later on, perhaps, but for now I am in my office with some work to do. I guess I’ll just try to get it done and not dwell (for now) on the newly formed conflict of opinions.

Hi George,
I am sorry to hear of the dilemma you and your family feel you are facing and I am also sorry that you are not well yet. I am a physician and work in New York City where there are many world renowned doctors. I first want to say that I agree with most everything the others have written, although I don’t know your case very well. I also want to tell you that sometimes even if a doctor has this teriffic reputation, high recommendations, brilliant schooling, etc. you must question everything and trust your instincts. I know this on both a personal and professional level. Doctors make a lot of mistakes, even the best of the best. We are only human and sometimes the ones that are the best are very short sighted and don’t listen as well to the patients as they should. I don’t know your doc, but I just don’t want you to feel demoralized or “just follow the doctors orders” because of your feelings about how wonderful this doctor is. I’m sure he is teriffic, but my advice to all patients is question everything, follow your instincts, and don’t stop with just one doctor no matter how highly regarded if you are not completely satisfied or feel something is being missed. I do feel doctors truly care and want to help people, that’s why we go into this profession, but if this doctor lacks experience with numerous patients with MAV, he may not be the right one to treat you as the others have stated.
Good luck to you and all of us suffering with this horrible condition.
Lisa

Didn’t read every reply, but wanted to make a possible correction. Someone said mav was hard to treat; I don’t think that’s entirely true. MOST migraine-types are episodic, and I bet that includes most cases of mav. They also tend to respond moderately to quite well to preventatives (unless im mistaken). People here seems to have some very extreme form of this, which isn’t very well understood. This type seems much more intractable to treatment for some reason; I think it may be in part because not everyone here actually has mav.

It seems this doc is thinking you may have microvascular compression George. Its another somewhat controversial disorder, and it needs a special type of mri/ct to show up; however many people have blood-vessels crossing the 8th cranial nerve, so just because you have a bloodvessel crossing, doesn’t mean its causing your problem (about a third of the general population has blood-vessels crossing).

Lisa: I am so glad you are part of this forum and take part in the discussions. It is nice to hear a dr.'s point of view. I think all of us have to really listen to our bodies, I think we have a natural instinct for what is right for our own bodies. I know that meds are not right for me. I know that my body does not metabolize meds very well and respond better to lifestyle changes, etc. So George, if you are not comfortable with what the Dr. is telling you, keep searching. You will know when you find the right diagnosis and treatment for you. As they say in yoga practice, “listen to your body and honor your body”.
Good luck.

The problem is, I’M about 90-95% sold on the idea of MAV, but because of Hain and his practice’s shortcomings (what I mentioned before – too-short followup visits, switching doctors on me, etc), Mom and Dad are disillusioned with him and are now sold on Hecox and HIS ideas – and as such, they take his word as pretty much infallible.

I think had I stuck with Hain, it’d be a matter of continuing to look for the right medicine. Now we’re one step back and supposedly looking for the right diagnosis.

Now that I can’t even take the first medicine Hecox gave me (because the forms didn’t ask if I had drug allergies, and Diamox contains a drug I cannot take), I’m stuck until I find out what he wants to do next. I could have been long since trying out the Keppra, which has one of the lowest side-effect profiles of any drug there is.

— Begin quote from ____

The problem is, I’M about 90-95% sold on the idea of MAV, but because of Hain and his practice’s shortcomings (what I mentioned before – too-short followup visits, switching doctors on me, etc), Mom and Dad are disillusioned with him and are now sold on Hecox and HIS ideas – and as such, they take his word as pretty much infallible.

— End quote

But doesn’t Hain do this to everyone? I mean, isn’t it common for folk to see his second in command so to speak for follow up appointments? That isn’t necessarily bad for I believe this fellow is supposed to be good too and Hain still is involved in your case. If the follow up appointment is brief, how brief are we talking about? It certainly won’t be as long as your initial one. I’m not trying to make you upset, but rather, maybe what you experienced with Hain wasn’t as big of a deal? I’m not discounting your dissatisfaction or the fact that you are feeling overwhelmed, just that Hain may still be the way to go here if the Hecox was unable to truly help you and understand the complexity of your problem. Hang in there.

— Begin quote from ____

But doesn’t Hain do this to everyone? I mean, isn’t it common for folk to see his second in command so to speak for follow up appointments? That isn’t necessarily bad for I believe this fellow is supposed to be good too and Hain still is involved in your case.

— End quote

He probably does do that to everyone – and that doesn’t make it right. Cherchi actually has a higher academic degree than Hain, but it’s clear Hain has had more clinical experience over the years. Besides, I don’t care if the second guy is almost as good – I went there, and paid the big $, to see “the dizzy doctor” – HAIN. Dr. HAIN was the one who saw me in person and at length the first time. It’s poor practice to then pass off your patient to another doctor, who hasn’t had the benefit of having spoken with, observed and evaluated you in person.

— Begin quote from ____

If the follow up appointment is brief, how brief are we talking about? It certainly won’t be as long as your initial one. I’m not trying to make you upset, but rather, maybe what you experienced with Hain wasn’t as big of a deal?

— End quote

Thirty whole minutes. It takes me almost 90 minutes just to drive into Chicago. Then as soon as your time’s up, the doctor interrupts and informs you as much (“Sorry, I’m going to have to cut you off; we’re out of time”, etc). If you’re lucky you may be able to get him to stay an extra five minutes.

Patients should be able to request either a half-hour or full-hour appointment, based on how complex their case is, or how many new developments there are, etc. To be given the “time’s up – don’t let the door hit you on the way out” immediately after 30 stupid minutes is insulting.

I understand your frustration, George. I hate to say it, but I think many here have experienced this as you have described. I agree that the 30 minutes, ding, time’s up, see you later, is insulting.

Hi George,
I completely understand your frustration and how much effort we all put into finding the right doc and actually getting them to spend time with us. I have to say that most docs don’t even spend 30 minutes with their patients. This is a result of the healthcare industry and the pressure that docs have to see as many patients as possible. This is not an excuse but it is an unfortunate reality. I’m not sure if you read my suggestion about how to prepare for an appointment, but the best way to really maximize your time with the doc is to be as prepared as possible, to have everything organized and to move things along in the discussion with your doc so that you get to all the points and questions you have. Medicine should not be this way and trust me when I tell you that physicians wish they could have more time with their patients. It is actually an ongoing discussion amongst physicians that we feel we can’t help our patients as much as we would want given the time constraints put on us. I was also wondering if when you make a follow-up appt., can you insist on seeing Dr. Hain? Or does he only do initial consults?

Keep the faith:-)
Lisa

Hi George,

Reading through all of this, my feeling is that you should be sticking with Hain. Even though you’re not thrilled with the bell going off at 30 minutes (nor would I) Lisa made some very good points that it’s the unfortunate way the system is set up. Not the best, but it’s the best there is for trying to sort out this junk with a specialist. I don’t think you should let that deter you from Hain’s experience and knowledge even though their front desk people sound disorganised as well. I know Emma didn’t have great luck with repsonses to emails from Hain either but he did answer some of them – the really crucial ones. I can only imagine he’s inundated with dizzy cases and he has to draw the line somewhere else he’d have no life or never get through the day to help as many as he can. Molly speaks very highly of Dr Cherchi … he responds to her emails in a very thoughtful manner. Even here in Australia, sometimes I will see the big boy and the follow-up might be with someone else.

It certainly seems to make more sense to me that you try a drug like Keppra next (over Diamox which you cannot use). Given that epileptic type stuff has hit another family member, it may be that this class of drug will work well for you if you share a similar genotype. I don’t think anyone is infallible – and so you have to use the best evidence you have collected from all sources and use your best critical thinking to work out what you think is best. I don’t think you should let others tell you that listening to “people on a forum” is completely without value. Sure, no one here is a medical doctor (except Lisa :smiley: ) but we at least have concentrated advice and literature here from specialists around the world with which we have formed our opinions. Hopefully it can at least act as a good guide.

Hang in there my friend … Scott :slight_smile:

It had better not be a 30 minute consultation as I’m flying all the way from Argentina to see Hain!!! That said I think I am also seeing Cherchi as well as Hain

George - sorry to hear you are being mucked around…but I have to go with Scott on this one…go back to see Hain/Cherchi as they understand dizziness…

— Begin quote from ____

“I basically got the “top guy” (Hain) on the intake visit, and then the “second-best” guy (Cherchi) thereafter; and
(3) I was given a minimal amount of time on followup visits (30 min.) and the doctor(s) didn’t really pay any attention to me all the time when I was speaking (e.g., about the terrible service with the front-desk staff).”

“But doesn’t Hain do this to everyone? I mean, isn’t it common for folk to see his second in command so to speak for follow up appointments? That isn’t necessarily bad for I believe this fellow is supposed to be good too and Hain still is involved in your case.”

— End quote

No, Dr Hain does NOT work with everyone this way. I have been seeing him since December of '06. I see him for 30-60 minutes a visit (most often 45-60 minutes.) Perhaps the timing of our visits has to do with our mode of communication. Because I am deaf, he types out our conversations. That takes a bit longer than verbal conversations. I have never seen Dr Cherci, but I was given that option last year one time when Dr Hain was running behind. We were deciding if I would go to Mayo for a consult at that point so I opted to wait for Dr Hain.

Having said that, last Friday I was VERY sick with side effects from the high dose of Effexor I was taking. I emailed both Dr Hain & Dr Cherchi. Dr Cherchi was very kind & wrote me 2 long, well thought out emails after reviewing my electronic file (it turned out he was home on his day off). That day I also received 5 emails from Dr Hain and he called my husband on the phone.

I have a lot of confidence in Dr Hain. He believes in Evidence Based Practice, as do most of the doctors that are discussed here. He also takes the time to answer my questions. He does not get offended if I ask him why he is choosing a particular path or I tell him that I was disappointed that he did not return an email. Finally, I have a rather complicated otovestibular/migraine history but I don’t think he will give up on me until we find a solution.

George, I hope you find some answers. It’s very frustrating when your body doesn’t work the way it is supposed to work & you feel so crummy.

Claudia

Thanks, all.

Boy, the amount of support from folks here is something else. You’d think everyone has known me for years. Speaking of the forum folks here … has anyone heard from MAVLisa? I haven’t seen any recent posts from her. Last I heard, she was pretty darn miserable, after two-plus years of no success.

OK, so I’m willing to submit to the extra testing, even though my insurance plan is basically worthless (I’ll get a PPO discount and nothing more). Maybe as other possibilities get (presumably) ruled out, I’ll get the chance at some point to say, “Hey, doctor, do you know of [MAV]?” and describe it to him.

In the meantime, you guys, is there anything you could say that I can pass on to my folks? They just want to see me better, and think Hecox has the answers. But first I would have to convince them that now is not the time to dump Dr. Hain, and that vestibular disorders don’t fit my picture 100%. They’re skeptics about him for obvious reasons, and Hecox made a fairly compelling case. What can I possibly say to help “un-disillusion” them about Hain and convince them that he’s likely the better expert for this case?

Hi George,

Not sure where or how MAVLisa is. She hasn’t been on the board since 15 June. Hope she’s ok.

I think the best thing you can say to your parents is that you have been looking into this for a very long time and know the research and are very familiar with similar cases (the forum) and have the input here from not just Hain but Steve Rauch. You could show them the video that Steve has put together on MAV as well. I would also print off some of the articles we’ve posted here and have them read through those too – the latest one from Joan is excellent. If you need help digging them out I’ll help you … I should put them in a separate archive. At the end of the day there’s plenty of evidence to suggest you are dealing with a migraine issue as the root cause. If Hecox is unaware of the far reaching effects of migraine (which I find amazing) then he cannot be relied upon – particularly because Hain pegged this for MAV. Hain sees this daily. Even in the distant past, even the most well respected physicians and specialists got it wrong (e.g. a top doc sued a colleague in 1800 for bagging him out over bloodletting which was accepted as standard back then complete with detailed documentation on how and why it worked – all without evidence of course) due to their ignorance. And it appears that Hecox is profoundly ignorant about migraine and its effect on the vestibular system.

Scott 8)

It was so kind of you to ask about me. Coincidentally, today, was the day that I finally got my computer hooked up. There were problems getting internet access in our house. We were only hooked up in the basement and that screen is impossible to look at. I am doing the same. Probably worse. I’ve been having a great deal of trouble looking at computer screens, so I might not be able to post as often :(. My dysequilibrium has worsened further, and the dizziness in my head (if that makes sense) is so incredibly bad that I can’t look at the computer screen, tv, etc., without great difficulty. Having migraine with aura quite often, and constant head pain. Still hate how this illness has robbed us of our lives. I see Dr. Rauch August 11. Will let you know how it goes. And, George, I did look at your recent posts, and I have been to many TOP doctors that are just not aware of MAV at all. What happens is that you end up having zillions of tests for no reason. Dr. Buchholtz writes a piece about that in his book. But, you have nothing to lose by further tests. It could just drive you crazy. I sure hope they get to the bottom of it. I will try to write more often now that I have my computer hooked up. I wish you all the best. I miss our daily “chats.” This illness is so very isolating. It means a lot to communicate with others who understand. Just so down in the dumps about this illness from this illness. Keep on thinking this is the 3rd summer with this crap. Just want to enjoy life again!! We all deserve to.