Questions for Dr. Hain

I have an appointment with Dr. Hain next Monday (April 6) and am beginning to organize some questions. If any one else has anything to add let me know and I will add it to the list. After a costly trip to Chicago, I want to get as much as possible out of this visit. From the positive feedback, I am hopeful that it will be worth it.
These are some of my questions. Of course, some are specific to my case:

  1. Why is dysequilibrium chronic, while other symptoms (e.g., nausea, flu-like sxs) intermittent?
  2. Is fatigue, flu-like symptoms, etc., all part of the MAV symptoms? Why?
  3. Why did this initially go away 2 times when I first got ill, but has been here to stay since August 2007? (when I first got sick I was ill for a week, then went away for 1 month, came back for a few weeks, went away for a few weeks, and then has been here for good since August 2007).
  4. Why didn’t Verapamil work for me at all? I was on 480 mg.
  5. Experience with pregnancy and MAV.
  6. Would a short course of steroids help?
  7. Does VRT/exercise help?
  8. Thoughts on a migraine diet.
  9. Should I stay on Verapamil and add another med to augment the effects or stop verapamil since it is not helping at all?
  10. Stats on people who got better - what meds were they on, etc?

Poor guy - these are a lot of questions :slight_smile:

Hi Lisa,

  1. Anecdotally, the SSRIs appear to work well for MAV but not migraine per se according to the science literature. Why do you not promote SSRIs more frequently for people with vestibular migraine?

  2. It appears that many people who come down with VN or labyrinthitis can easily develop MAV. Do you think VN frequently precipitates MAV?

  3. Have you seen long-term cases when finally treated with a migraine preventative for a period of time, who then go on to be MAV-free minus that med?

  4. Is MAV and IBS common among your patients?

I may post more in this post as I think of them. Thanks for doing this Lisa!

Scott 8)

Lisa, I think this is great that you are offering to take questions. I will post a few soon. May I make a suggestion though? After you gather the questions, see if some can be combined or are the more important ones. I don’t know how receptive he would be if you walk in with 50 questions! :slight_smile: Also, you might want to consider bringing a tape recorder. I wish I had done that with my doc, as it is really difficult to remember everything and write so many notes as he talks. Best, Bonnie

I agree with Scott’s #3.

Is it possible after long-term preventative treatment to be MAV and med free?

Thanks Lisa!

Hi Lisa and Scott,

These are all great questions! One additional question: How long does he think you should push through side effects before you bail on a med (is 2 weeks enough?). I know he has told me that it would take 2-3 months to see if a med will work but that was assuming that the negative side effects dissipate. I am still struggling with Nortriptyline and it has been 12 days.

Thanks for taking this on, Lisa.

Ben

I’m not going for another week, so as you think of questions let me know. We’re all here to help each other and get through this.

Yes, I am definitely not going to come in and bombard him with 50 questions. But, I will combine them and make it more of a conversation. I never thought to bring a tape recorder. My husband will be my tape recorder :slight_smile: He is a physician so he is good to have at appointments. In fact, he is going to be in Chicago already taking his medical boards in neurosurgery a few days before, so I am going to meet him in Chicago. Not looking forward to navigating the airport alone, but I’ll get through it.

I like the question about IBS and MAV!! I suffer from both and am convinced there is a link…the brain-gut therapy link thing may be around here somewhere!! Also, can exercise actually increase symptoms? I find that when I do my daily 3 mile walk from work to meet my husband, I start to feel the familiar fuzzy/thick head descending on me about a mile and a half into the walk. A bit like one of those dawn simulator lights that come on gradually, so my symptoms come on gradually…and my face feels burning frozen…as though blasted by cold wind (even when there isn’t any!) and my eyes feel as though I have been crying for weeks on end…but look fine and I can see fine!
Good call. :smiley:

Hi Lisa,

I totally agree. Choose the best Qs that you think matter most. I like how you said you’d incorporate them into a conversation with Hain. I wish I could give you an mp3 recorder that we use here for the Sydney Diabetes Prevention Program (we record lifestyle intervention interviews). They fit in the palm of your hand and record up to 72 hours of conversation. You just hit record and sit it on the desk. Amazing. Imagine if you could post an edited version of the consult with Hain answering Qs? That would be awesome. :smiley:

Great that your husband is a neurologist!! Sounds like you’re in fantastic hands. And without a recorder, it’s great to have another person listening. Right after I saw Halmagyi over a year ago I made notes immediately so as not to forget what he said.

Scott 8)

Hi Lisa - I hope it goes well with Dr Hain, I’ve got my fingers crossed for you!

My neurologist told me that IBS is linked to migraine and MAV. At my first appointment with him, one of his diagnostic questions was whether I had ever suffered from IBS (he also asked me if I have ever suffered from Raynaud’s syndrome, which is another condition linked to migraine).

Becky

  1. What happened to your beard? :smiley:
  2. Why did your hair go completely white so fast? :shock:
  3. Although people respond differently, what do you see as the biggest advancement in migraine/MAV treatment in the next 5 years.

— Begin quote from “MSDXD”

  1. What happened to your beard? :smiley:
  2. Why did your hair go completely white so fast? :shock:

— End quote

Brilliant! :lol:

that’s funny. A sense of humor helps us get through this - that’s for sure.

Btw - I have been told I have IBS as well. Wonder if it was abdominal migraines? interesting that others have suffered with IBS as well.

All great questions. I will review them all before I leave for Chicago next Saturday.

Which meds does he think best for which sort of people? eg. insomniacs, those with more dizziness than headache? those with more headache than dizziness? those that are more depressed, does he then choose anti depressent, etc. Or does he just try one, then another.

Would save us all wading through them all!
Thanks
Christine

Christine,
that is a great question. i have always wanted to know if some meds are best for migraine associated dizziness or are all migraines treated the same. Most doctors have said “a migraine is a migraine,” but I wonder if some are more effective for the type of disturbance we are having.

Lisa -

I am so anxious to hear about your visit with Dr. Hain. I made a list of all my questions too when I went to him. That is so nice how you are involving all of us and trying to help everyone . I wish you the best of luck. His office help are all very nice. You are so lucky that your husband is a doctor. I bet your issues are taken more seriuosly at doctor visits when your husband is along. His office is really simple to find. If I would have been feeling better at the time of my visit, I would have done some exploring since it is located downtown. There were some good restaurants and stores near his office. Unfortunately, all I thought about was getting home. Once again, good luck and I am sure your visit will go very well.

Nance

Thank you, Nance. I am staying an extra day on Sunday (since my husband will already be there), and Chicago is a great city. But, sadly, I don’t think I’ll be able to leave my hotel room much. I will try to at least go out for dinner, but even that is an effort. I’m sure all of you understand all too well. It makes me sad to think that I won’t be able to explore at all. but I have to remember that I am not there for fun. I don’t even remember the last time I had fun :frowning:

Hi Lisa,

First, thanks VERY much for allowing us to post questions that you will take to Dr. Hain!
Secondly, good luck to your husband with his exam. It’s great that he is in the medical field and will be with you when you meet Dr. Hain and his associate. Having a “scribe” so to speak to take notes will be really beneficial.
Third, sorry to hear that you are feeling so poorly and might not be able to enjoy Chicago. Just keep in mind that you will find more answers (although not necessarily the “golden ticket” as in the absolute cure) when you meet Hain. At some point in the future, you WILL be able to go out an do more things. Keep the faith.

I do have two questions I would love to hear Hain’s responses to:

  1. Is a person with MAV who does NOT have inner ear damage or disease (VN, labs, etc.) more likely to recover quicker and more fully than those who do?

  2. What medications would you suggest to someone who only has very occasional headaches but has all the other typical MAV symptoms (daily great light sensitivity/aura/visual disturbances, brain fog, fatigue, off-balance feelings daily that vary in intensity for no apparent reason.) NOTE: I am on Klonopin and Tofranil which I believe may be helping with the headaches and balance, but to be honest, even when this all began, I didn’t have major headache issues.)

Thanks! Be well, Bonnie

— Begin quote from “MAVLisa”

Christine,
that is a great question. i have always wanted to know if some meds are best for migraine associated dizziness or are all migraines treated the same. Most doctors have said “a migraine is a migraine,” but I wonder if some are more effective for the type of disturbance we are having.

— End quote

As a side note, I think that there are indeed certain meds for certain symptoms, although some cover multiple symptoms. You may be interested to know that when I recently asked my neuro-doc what he thought about me maybe using Verapramil, he noted that the med is good more for headaches, but not for dizziness. Since I don’t have much of a problem with headaches (but do have all the other symptoms), it probably wouldn’t be a good med for me. I also believe he said that anti-depressants work well for dizziness. He said that in my case, because I have so many of the typical “migraine” symptoms too, I really should see a headache specialist who deals with migraines. It is thought that adding a med for migraines themselves may help which makes sense, because you have to kill the migraine problem to fix the MAV/dizziness as a whole.

Best, Bonnie

— Begin quote from “bcrelief”

— Begin quote from “MAVLisa”

Christine,
that is a great question. i have always wanted to know if some meds are best for migraine associated dizziness or are all migraines treated the same. Most doctors have said “a migraine is a migraine,” but I wonder if some are more effective for the type of disturbance we are having.

— End quote

As a side note, I think that there are indeed certain meds for certain symptoms, although some cover multiple symptoms. You may be interested to know that when I recently asked my neuro-doc what he thought about me maybe using Verapramil, he noted that the med is good more for headaches, but not for dizziness. Since I don’t have much of a problem with headaches (but do have all the other symptoms), it probably wouldn’t be a good med for me. I also believe he said that anti-depressants work well for dizziness. He said that in my case, because I have so many of the typical “migraine” symptoms too, I really should see a headache specialist who deals with migraines. It is thought that adding a med for migraines themselves may help which makes sense, because you have to kill the migraine problem to fix the MAV/dizziness as a whole.

Best, Bonnie

— End quote

Hi Bonnie,

Just thought I should share with you that my experience with Verapamil was the exact opposite of what your doctor told you. Verapamil helped my vertigo but gave me headaches as a side effect. My new neurologist, who is a headache specialist, says the anti-seizure meds tend to work better for those of who complain more of aura symptoms (including vertigo) and not as much from headache. Of course, we all know we each react differently to these crazy meds.

Marci

MArci and Bonnie - it is so confusing. unfortunately for us, I don’t think there is one right answer.