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An mvertigo.org question list for my specialist appointment


#1

Many of us on this site, including @turnitaround and @getbetter, have discussed whether migraine could solely be responsible for our dizzy disorders, or whether the ears play more of a role.

I’m traveling to see a specialist in a couple of weeks and, if I have time during my visit with him, I’d like to bring a list of questions from all of you that I can ask him.

I can’t promise anything, of course, since I don’t know how the appointment will go but if I can, I want to tell him that I am on this forum, that everyone here is trying to learn all they can, and if he could shed some light on a few questions we would all appreciate it.

So, if you have a question you would like me to ask him, please post it. @turnitaround, I expect you to provide me with a few questions related to your hydrops/fistula theories!

The first question for the list that came to my mind was this one:

Question 1: True or false: If meclizine helps alleviate dizziness symptoms in a patient, then the dizziness is being caused by the ear and not by migraine. In other words, dizziness caused only by migraine will not be helped by meclizine. True, or false?

Here is a short biography of the guy I am going to be seeing. One of his areas of expertise is the Epley maneuver. http://www.dr-li.net/AboutUs.html


#2

I’d be curious to hear the results from that doctor. The first dizzy doctor I had seen said meclizine is a waste of time. I didn’t ask the following doctors about meclizine.


#3

It definitely helps me.


#4

Meclazine helped me for maybe the first 3-5 months of the condition, then stopped helping. I tried it about 5 years later when I was much worse and it seemed to make things worse, but I was trying it at night because it was the first night the dizziness prevented me from sleeping so all I got was more groggy which in turn probably made the dizziness feel worse.


#5

Thank you for thinking of asking questions on our behalf, great idea. My question would be “can chaotic electrical activity in the brain damage the vestibular centre?”.


#6

OK, that is “Question 2”! I want to make sure I understand what you’re asking. When you say “chaotic electrical activity,” are you referring to migraines or to something else?


#7

Revolver’s question would maybe make sense for how mine came about possibly?


#8

How about if Question 2 is worded as follows (feel free to suggest edits):

Question 2: Can chaotic electrical activity in the brain (such as from migraine, from hallucinogenic drugs, or other sources) damage the vestibular centre or system?"


#9

Yes, I am referring to the migraine explanation of VM, ie chaotic electrical activity causing our symptoms. I wonder if it has a transient effect whilst the electrical activity is disrupted (in my case for over a decade), or if it causes more permanent damage?. Thank you.


#10

Hey Anna,

Hadn’t forgotten you :slight_smile:

Starter for 10, with questions erring on the least controversial:

  1. Do we know for certain the underlying aetiology of MAV?
  2. Is there a single ‘school of thought’ in relation to the aetiology of MAV?
  3. Is it possible the condition starts due to a change in the inner ear?
  4. Is it possible that the change could be a degree of hydrops, however small?
  5. If Yes to 2. and No to 3., what might be the change?
  6. Is it fair to say that MAV is a condition in which a change to the vestibular system has not been compensated for?
  7. Are all the symptoms experienced in MAV hallucinations, or are some of the symptoms artefacts of the inner ear?
  8. Do we know why MAVers experience ear pressure, positional vertigo or hearing loss (where present)?
  9. Do we know why each medication works in MAV? Or are the medicines prescribed purely due to positive consolidated clinical experience without knowing their exact mode of action on the condition? … and something a bit different:
  10. Do you think there will be significant innovation in this space within the next 10 years and what technological change is likely to drive that?

Thing is I’m slightly wary of you raising these questions to a single person as opinions may vary on this, and that is part of the challenge we face. Some doctors don’t distinguish ‘hydrops’ with ‘menieres’. If you meet a doctor like that there is no point in going deeper, they simply don’t know enough about hydrops. Be good to repeat this with a number of doctors.

Also you may get a different answer from a ‘line doctor’ to someone involved in teaching and research who may be more aware of the controversies and different ‘schools of thought’. Some doctor’s also get ‘cagey’ when they detect you trying to dig for answers. I’m not sure why this is and if the reason is because they wish to limit your anxiety or don’t want to be drawn or quoted on something because there is no safe professional consensus.

My other concern is that you need to have time for YOUR appointment and the focus should be on YOU. I prepared a set of personal questions for my doctor the last time I saw him - in fact I created a powerpoint presentation - so I could get through it efficiently. Despite this, there was barely enough time despite it being a private appointment and the questions were all focused on my case only! :sweat:

Best of luck with your appointment, Anna.


#11

Hi Anna,

Also most doctors care more about the treatment course rather than patient education. Some of them do patient education when the case is cut and dry. MAV or VM is no where near cut and dry.

i agree with James focus on what YOU want out of the appointment and in the process if you got some questions answered then it’s all good.


#12

I also agree, this is very sweet of you, but please focus on YOU at the appointment!


#13

Oh, yes everyone, the appointment will be all about me :slight_smile: but this is a “just in case there’s time” sort of thing. I’m trying to learn and understand all of this, too, as it’s such a weird disorder and I’m somewhere halfway between @turnitaround’s and @GetBetter’s opinions as to whether it’s the ears or the migraines that are the problem.

Tonight I’ll be working on making copies of all of my previous tests to take with me to the specialist. I was going to mail them ahead of time but when I made the appointment his office person told me that he wouldn’t look at them until I was there, anyway, so I don’t think I’m going to mail them ahead of time. I am creating an index/table of contents page, but overall it’s going to be way inferior to what @turnitaround did for his appointment (creating a PowerPoint presentation). :slight_smile:


#14

I know I won’t have time to ask all of these questions, but here is the list I am going to take with me next week. Last call for edits, additions, etc.!

Question 1: True or false: If meclizine helps alleviate dizziness symptoms in a patient, then the dizziness is being caused by the ear and not by migraine. In other words, dizziness caused only by migraine will not be helped by meclizine. True, or false?

Question 2: Can chaotic electrical activity in the brain (such as from migraine, from hallucinogenic drugs, or other sources) damage the vestibular centre or system?

Question 3: Are all the symptoms experienced in MAV hallucinations, or are some of the symptoms artefacts of the inner ear?

Question 4: Do we know for certain the underlying aetiology of MAV?

Question 5: Is it possible that MAV starts due to a change in the inner ear?

Question 6: Is it possible that the change could be a degree of hydrops, however small? And could ongoing MAV really be a case of hydrops, or a very small fistula that leaks only occasionally?

Question 7: Is it fair to say that MAV is a condition in which a change to the vestibular system has not been compensated for?

Question 8: Do we know why MAVers experience ear pressure, positional vertigo or hearing loss (where present)?

Question 9: In MAV, does treating the migraine also treat the dizziness? In other words, does a migraine treatment that works on the headache also work on the dizziness?

Question 10: Do we know why each medication works in MAV? Or are the medicines prescribed purely due to positive consolidated clinical experience without knowing their exact mode of action on the condition?

Question 11: Do you think there will be significant innovation in this space within the next 10 years and what technological change is likely to drive that?


#15

I hope not!


#16

Hello, everyone, a quick update and I will write more later. I saw the specialist 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. :slight_smile:

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.

There’s lots more but I’ll wait until I can transcribe the visit and review the notes…

AL


#17

Hi Anna,

Appreciate you taking the time to post the dialogue with your doctor.

The doctor thought your problem was neurological maybe even short seizures and still put you on Nortriptyline. If you diagnosis was not MAV/VM then why a migraine med ?


#18

Well, when he says “neurological,” he’s not completely ruling out migraine (even though he says I don’t fit into the nice neat profile). He admitted that I’m kind of a paradox.

As for the nort, I think it’s because it’s used for a lot more than migraine. I just got off the phone with one of my friends who is an anesthesiologist. She said that it’s used for quite a few different things.

I forgot to mention that he thinks I should still try to eliminate some of the migraine triggers, too, just to see whether that does anything. I do have occasional headaches which have never really been diagnosed (when I told a doctor I get headaches, the response was to hand me three different prescriptions and “see if any of these help”).


#19

BTW Nortriptyline is an excellent med and a great first choice. I started on Nortriptyline and later switched to Ami as i could not sleep on Nort.


#20

Thank you. That is interesting because my anesthesiologist friend warned me that it can make people groggy, and to take it in the evening. I then found a discussion in the Facebook group where one woman says she takes it at 5pm because if she takes it any later than that, she’s still groggy when she gets up the next morning.