1st time to the headache center pgh

next week for the 1st time i will be seeing the neurologist for mav.
i would like to know what i should expect and questions i should ask.
thanks

My neurologist asked me LOADS of questions that took ages, that usually required a yes or no answer. EG:

  • HAve you a history of headaches/migraines?
  • Have you ever had IBS?
  • Have you ever had Raynauds syndrome?
  • Have you ever had aura?
  • Do you get neck or shoulder pain?

There were loads more but I can’t think of them right now.

Becky

One thing you might do is ask them to fax you the questionaire to fill out ahead of time so you can at least get that over with. one less thing.

They’re going to try to pin you down as to whether the world is moving or you are moving. For me, i said both. They wanted me to decide between the two. I kept staying, both, because that is the correct answer.

They’ll do a physical exam like you’ve never had one before, but it’s the most fun, too. Don’t worry about that. Except i cried when they had me doing different kinds of balancing. I used to be a ballet dancer - i could stand on one foot in pointe shoes with my eyes closed. i couldn’t believe how much balance i’ve lost.

Becky, it sounds like you have a great neurologist. My oto-neuro had his PT do the questioning and she asked me qustions way too quickly and when i didn’t give her the answer she was looking for, meaning, it didn’t fit into a box she could easily check off, she would ask it again, then finally give up. I did feel dazed and confused about all the questions they were firing at me, so probably every experience is different. Of course, I had 30 mg of Valium in me, so i was dazed and confused anyway.

I hope you have a good experience, get a good diagnosis and treatment plan.

Julie

thanks for giving me some heads ups.
what about meds.? i was taking a very small amount of klonipin 1/4 of a .05 1xdaily. i stopped taking it when i started the diet in June. when i have not great days i rest more and the woozy feeling goes away enough to function. i don’t work anymore so i can.

are you going to have any testing done? If so, you need to stay off your meds. If not, there is no reason to quit your meds. That amount of Klonopin is really tiny. I take 1.5 mg q.d.

What neurologist are you seeing in PGH?

Heather

dr. kaniecki

I figured that’s who you were going to see.
If I could travel, I’d get out of this city.

All I got from the headache center was a headache. :roll:
He’ll probably refer you to Furman and UPMC if you mention vertigo.
Furman knows MAV. Actually he calls it MARD I think.
But how ridiculous to be tortured by tests you don’t need just to see Furman.
I refuse to be tortured.

Just had an ENT screw up my right ear last week.
Now I am experiencing horrific symptoms, on top of what I was already dealing with. :shock:

Heather

Heather-

I know you probably won’t answer this question either, but do you have an MAV diagnosis?

Kim

idon’tfeelgood-

Good luck with your appointment. Its never fun, but its all part of the process.
Please let us know how it goes!

Kim

My first visit was also to a neurologist. It got the testing process going anyway. I’m not sure what you’ve had already. I know Heather had a bad experience with her MRI but she is a rather unique case, wouldn’t you agree, Heather?

I’ve had two MRIs and a boatload of other neuro testing. It was all unobtrusive and a piece of cake.

I’ve never had any vestibular testing, so i can’t comment on that.

If you want a diagnosis, and treatment, Furman is considered one of the best. I’m not sure if his first choice of preventative is Zoloft, but I found that to be useless, at least in terms of dizziness. It was a great antidepressant. I’m off of it now, but I don’t need an antidepressant anymore. Anyway, you’re lucky to be so close to Furman.

Julie

I’ve seen dr furman a few times. the first time was about 8 yr. ago when my bppv went away but i continue to have this woozy feelings. he put me through all the test and said take klonipin and that was it. i didn’t i just started wearing my glasses all the time and took care of the woozy until 2 years ago when during pt for my neck problems i got bppv and like the book if you give a mouse a cookie i got the woozy again and back to furman after weeks of vest therapy. did all the test again and was told it could be meniors or migraine or my neck. so he gave me the choice so i started with the water pill and then the klonipin.

so far i done the dizzy test 4 times 3 cats for scd 3 test with 3 different opinion . 1 mri
in june i went to jhh to see dr. minor and he said mav and scd but mav is causing me more problems so deal with this first . he wanted me to come to see their neurologist but i didn’t want to so they gave me the name of the dr. here.
i stopped taking meds when i started the diet. so far I’ve been mostly OK.

i really not know what i want to get out of this appointment . i know what i have and i know i really don’t want to start with med but i do want to stop leaving with this fear waking up so sick again that i can’t function. i tell everyone that i don’t need to watch the fear factor and live it everyday.

I’m assuming wanted you to see Carey? for MAV?

What meds did you stop when you started the diet? Just the K?

— Begin quote from “AZdizzy”

Heather-

I know you probably won’t answer this question either, but do you have an MAV diagnosis?

— End quote

What does that mean? Did you ask me a question before that I didn’t answer?

A couple Docs “think” I may have some migraine variant, but you can’t really DX MAV.
That’s right, you can’t. There’s no test or proof. I agree with a Doc at JH for saying that
to someone I know who went there. I think it was Doc Rosenberg who said it.

I have several problems going on and I know I have an inner ear issue also.
Heck I’m living it after an idiotic ENT used a suction device to get some wax out.
Well, you don’t do that to people who have ear pressure problems.
Now I’m really hosed. Visual problems, a sensation of the room moving when I get up.
He screwed me over good.

And people wonder why I refuse testing?
Any time I go near a doc they make me sicker.

Heather

— Begin quote from “Julie”

I know Heather had a bad experience with her MRI but she is a rather unique case, wouldn’t you agree, Heather?

— End quote

Unique and ugly case.
Took me awhile to figure out that’s how the hyperacussis began. Sound damage.
Still don’t know what happened to my neck that night.
Doc wants to do a cervical MRI and I’m terrified to even do it. But then I haven’t met a neurologist I trust yet.
I’ve had it with the female docs. I need a guy who is smart as a whip.
I’ve been so ill since last week, I can’t leave the house much less my bedroom anyway. :frowning:

Heather

“That night,” meaning in the MRI machine. Your story is so long and convoluted (no offense) i’ve lost track.

Julie

— Begin quote from “idon’t feelgood”

I’ve seen dr furman a few times. the first time was about 8 yr. ago when my bppv went away but i continue to have this woozy feelings. he put me through all the test and said take klonipin and that was it. i didn’t i just started wearing my glasses all the time and took care of the woozy until 2 years ago when during pt for my neck problems i got bppv and like the book if you give a mouse a cookie i got the woozy again and back to furman after weeks of vest therapy. did all the test again and was told it could be meniors or migraine or my neck. so he gave me the choice so i started with the water pill and then the klonipin.

— End quote

Can you imagine taking tests that cost thousands, risk going through hell, only to be told to take Klonopin?
I don’t know whether to laugh or get pissed it’s so absurd. Why don’t they just forego the tests and trial klonopin? sheesh.
Oh, silly me. They’d miss out on the money for the tests.
Menieres, has anyone not been misdiagnosed with it?

Heather

i went to see minor since he is the expert on scd. now i saw 3 dr. for this spent a lot of money and got 3 different opinions :?
i was only taking 1/4 k 1x daily.
i am hoping that this dr. can explain how having bppv can trigger mav. as i said before i had mav went away and for about 4 years i was free of it until i got a bppv attack. i am going to sub tomorrow at the pre-school its with the older kids so i should be able to make it through the day.

I asked a Doc why it is that you get 5 different opinions from 5 Docs.
He said it was my job to decide who was right. :lol:

Heather

— Begin quote from “Heather”

What does that mean? Did you ask me a question before that I didn’t answer?

— End quote

Hi Heather, yes actually I did. (See “Anyone Diagnosed With MAV Get These Symptoms?”) A couple different times in that thread, September 3rd, and September 5th. Its ok, though, this is an open forum and you aren’t required to answer questions. :wink:

I understand you have multiple issues going on, but I’m assuming you think MAV is part of the picture otherwise you wouldn’t be here, yes? The symptoms you describe (ear problems, balance trouble, visual problems etc. ) to me, they sound very typical of MAV. In fact, I’d bet most of us here are dealing with them, or have dealt with them at one time before treatment.

You don’t speak of preventatives, is that because you don’t want to try them, or are they not being offered? I know, sorry - more questions. :mrgreen:

p.s. - I’ve never been diagnosed with menieres, so I guess I guess I can say I’ve never been misgdiagnosed with it either.

Kim