New to forums and MAV

Hello,

If there’s anyone here who also posts on the HealthBoards forums, you may recognize me (GeorgeKoch there also) from there, particularly the Inner-Ear Disorders area. It wasn’t until later that I found out about MVertigo, but when I did, I decided to “transition” over to here, for the most part.

Anyway, despite the misleading username, I am George.

I recently got a diagnosis of MAV (after about five other doctors all misdiagnosed VN) and am on ~day 4 of the prescribed medication.

Can I ask some questions, here, that I have – some about the medicine, some about the disorder itself?

Welcome George

I think you will find a great deal of support here because of the many people who have been dealing with this for some time.

Questions are welcome as many here have been through many different phases of the Mav disease and can tell you what has helped them.

This board has been a huge support for me and I think you will find it to be the same.

Timeless

Hi George,

Welcome to the forum. Ask away! There’s plenty of knowledgeable people here to help out.

Best … Scott 8)

Ask away, that’s what board’s like this are here for. We will talk about just about anything dealing with this disorder, no matter how odd the subject.

Brian

Seems like I have an endless number of questions.

For the moment, though, there are two things I’ve observed that I’d like to know if anyone has any comments on or reaction to.

One: This also happened in late Feb., about a month after the dizziness began but before I found out I had MAV. I went to an ophthalmologist for a full eye exam because I thought maybe an eye problem was making me dizzy.But I also had what felt like a “twitching” somewhere around the eye. In the last few days, it’s returned. If I look in a mirror, I can occasionally see a quick, slight twitch in the corner of the right eye, but generally the sensation isn’t anything observable (e.g., I don’t have nystagmus, lazy eye, etc). In general, my right eye feels almost “tired” – certainly more so than the other eye.

Two: You know the sensation “furrow your brow”, i.e., using the facial muscles to raise the eyebrow(s), and in turn, the forehead appears to “crease” or “wrinkle.” Anyway, there always feels like there’s pressure or stiffness in the forehead. If I do that “furrowing”, it heightens the sensation of soreness.

… The only other thing I can think to add is that I’m on verapamil (low-end dose) but I don’t think that has anything to do with the way I’m feeling.

Wow, two posts and I sound completely fruity already.

George- both those symptoms sound like migraine symptoms. if you haven’t already I recommend reading “Heal your headache,” by David Buchholtz. You can order it on amazon. It explains the symptoms you mentioned.

Many thanks, Lisa. Yes, I’ve heard of that book. I meant to order it and forgot to.

Tim Hain formally diagnosed me with MAV.

Until Jan. of this year, I’ve never had dizziness accompanying a migraine, nor have I had that twitching.

What’s interesting (OK, well, to me) is that the eye that feels “twitchy” is also near where I traditionally get migraines (though I don’t get actual headaches a lot lately) — the temple above the right eye.

I thought maybe I’d overexerted my eye(s) because I do computer-intensive work (yeah, even while lightheaded). Maybe not, huh?

I am seeing Dr. Hain on Monday. I saw many doctors before him and have been dx with MAV by many. Unfortunately, though, the doctors haven’t managed my meds very well. I look forward to meet Dr. Hain and see what his recommendations are.

If it’s any encouragement, Dr. Hain is a super guy. He talks TO patients, not AT them, and listens well. He takes all comments seriously and isn’t dismissive of any. He’s also really smart, and it shows. He’s the only doctor I’ve seen who not only correctly pegged the diagnosis but ran various tests to RULE OUT labyrinthitis, VN and other possible conditions.

In preparation for my visit with him, I’d written up a whole list of various symptoms and self-observations, as well as doctors I’d seen previously, what diagnoses they gave and what tests they had done (e.g., MRI). Dr. Hain said that all such “additional” info was helpful.

There’s a form that his office will ask you to fill out when you get there. If you didn’t already know, you can also download it beforehand, print it out and bring it with. (I have the link if you want it.)

Later on I’ll get back to some other question(s) I have about my own current experience with MAV, but thought you might find the above info useful.

George - Thank you for the info. I actually already downloaded the form and filled it out. It sounds like it will be worth my travels from New York to Chicago to see him. I forget - are you currently on meds? what did he suggest?

Yeah, I started verapamil (120 mg, I think it is – the low dosage) on Thursday. Saw Hain on Monday of that week, but the front-desk staff is disorganized (or something) and took forever to get back to me about which medicine Hain had decided on.

Speaking of which, I’d like to ask a couple of questions about this medicine I’m on (particularly versus another one that was being considered). Maybe I should make a new thread, instead, and just label it “verapamil questions” or something.

George- just a bit confused. Why did Hain’s office staff recommend a med? Didn’t he prescribe your med during your appointment? I have been on Verapamil if you have questions. there have also been threads on verapamil. It has not helped me at all (I got up to 480mg) but it has helped many people.

Sorry, Lisa. I didn’t make clear what I meant.

What happened was Dr. Hain said he wanted to consult with Dr. Leventhal, another physician of mine, who years ago diagnosed me with Asperger syndrome. So, Hain wanted to get Leventhal’s opinion as to whether verapamil or Effexor (an SNRI) would be more appropriate for me to use (given the AS). Hain even shot off an e-mail to Leventhal while we were still in his (Hain’s) office.

He gave me a prescription for verapamil, which he felt would probably be Leventhal’s recommendation. He said to hold onto the prescription, and if verapamil was the choice, to have the prescription filled; otherwise, Effexor would be phoned-in to the pharmacy.

The front-desk staff was supposed to relay Hain’s (/Leventhal’s) decision to me, but instead, kept calling and asking for Leventhal’s number. This despite the fact that, as I later learned, Leventhal wrote back right away. So come Thursday, I was sick of waiting and finally called the office in a huff. I basically said, It’s been three days. Find out what Hain decided and tell me – ASAP!

I don’t know what’s going on with the office support staff, but apparently someone hadn’t been paying attention, or something. A more responsible person would’ve just said, “Hold please,” called Hain on his intercom and said “I’m sorry to disturb you, but we just need to know what your decision was regarding patient George Koch’s medication,” and resolved the matter in five minutes.

Basically, the whole story is long, boring and stupid. (There’s one woman who often answers the phone at Chicago Dizziness & Hearing who talks at 10 decibels, can’t give a straight answer and keeps putting me on hold, never to pick up again. I suspect she may be involved…!)

I’ll post my question tomorrow, I think. Feeling rather dizzy today.

Hey George,

I only just saw your post on the healthboards and answered you over there. Glad things went well with Hain and thanks for letting me know about those nice comments he made.

Best … Scott 8)

— Begin quote from "scott"

Hey George,

I only just saw your post on the healthboards and answered you over there. Glad things went well with Hain and thanks for letting me know about those nice comments he made.

Best … Scott 8)

— End quote

What did Hain say? He knows about this site then?

bcrelief: I don’t think Hain knows of this site. What I meant (on the other forum) was that, among the info I provided to Dr. Hain, I included Scott’s “argument” in favor of MAV for my diagnosis. I showed it to Hain and said “This is what one person on some health forums told me and why he thinks so…”

Dr. Hain basically said, ‘Whoever said that to you, I think they’re exactly right and clearly have a lot of knowledge in this area.’ (Or something to that effect.)

I haven’t been back to the HB forums to see recent replies, Scott, so I’ll get there a bit later. Then I still have a question or two about my current medicine, so I’ll probably put it up here (this forum) and see what replies I get.

I’m a real noodge, I’m sure. You’ll all get tired of hearing from me soon enough.