You know what the real problem is

No guidance. I feel as if I do all of my own research. Because of its rarity even neurologists, the supposed brain “experts” don’t know all that much about MAV. So I make suggestions to my doctor, if they do not listen to my suggestions I am frustrated because I feel as if what I have to say is validated by the hours of research I have done. On the flip side, if they do listen and my suggestion backfires I feel like I hurt myself and feel an immense amount of guilt.

This is why:

  1. doctors do not treat themselves
  2. 19 year old college students such as myself should not “practice” (practice being the key word here) medicine.

Another problem: Doctors who are too proud/arrogant to admit they don’t know what’s wrong (not that they’re all like that). I’d still be on Valium & Dyazide if I hadn’t done more research - on my own - & found a neurotologist who seems to care enough to listen. (Can you tell I’m still a little ‘put-out’ with the ENT who told me I have Meniere’s last year?! )

— Begin quote from “joy”

Another problem: Doctors who are too proud/arrogant to admit they don’t know what’s wrong (not that they’re all like that). I’d still be on Valium & Dyazide if I hadn’t done more research - on my own - & found a neurotologist who seems to care enough to listen. (Can you tell I’m still a little ‘put-out’ with the ENT who told me I have Meniere’s last year?! )

— End quote

Joy,

I would be deaf in one ear by now if I had let the an arrogant doctor perform an unneccessary operation on me.

Dizzyupthegirl,

Sometimes you have to take your own health into your own hands when it comes to deseases such as MAV that the doctors have little knowledge of. The important thing is to talk to you doctors. If it seems like they aren’t doing anything to help, or making things worse, then it is time to move on to another doctor. My first doctor dx’d me with meniere’s and two years later wanted to do surgery without doing further testing to warrant the surgery. I started doing a bunch of research and figured out that I probably didn’t have meniere’s and started talking to other doctors who agreed with me.

Yeah, Brian, I once had a gyno doc who had me scheduled for surgery twice only to be examined by the surgeons beforehand who ended up telling me I didn’t need surgery. Obviously I have dumped said gyno doc :slight_smile:

Make my headache go away!! I have to get some work done here! Was off half-day Friday with dtr - she has had the flu since late Thursday night. It seems like all I did this weekend was laundry … eat … cook … eat … clean … & try to get HER to eat! It’s my own fault I’m miserable this morning. I saw it coming. Now I have to pay the piper … yeesh.

Unfortunately, I’ve had my share of bad experiences as well. The first neuro-otologist, who just tested me, epleyed the wrong ear (which can lead to permanent dizziness–and did) and then wrote for klonopin and told me never to come in for a visit, just call for scripts.
The second otologist who made a diagnosis and is friendly, but when presented with medication issues, refuses to deal with them–“I’m a surgeon”–then don’t prescribe drugs you don’t understand.
Recently when I had a set back, this otologist refused to intervene, and made some negative comments.
So, I saw my local ENT yesterday, armed with articles, emails from some national experts who were willing to answer some medication questions (and I discovered that everyone has their protocol–they just don’t tend to agree with each other) and we came up with a plan.
This is a difficult disease, and its treatment is in its infancy, and so many doctors don’t even know it exists.
Yet Dr. Hain writes on his site: “Most vertigo is caused by migraine.”
In frustration, I emailed a board member of the vestibular disorders association who had recommended my otologist, and she wrote back that in the end we all manage our own cases. That’s a huge burden to bear.
I think in MAV there are no absolutes, so I distrust anyone who “knows” exactly what to do. I trust someone who is willing to admit that it’s a trial and error situation, and the disease waxes and wanes, and they will hang in there to help you.
Kira

Kira,

that is exactly the kind of care i wish i could find - somebody flexible enough, compassionate enough, to work with me and try options other than those on his short list. You’re right, the treatment of this illness is too new for anyone to believe themselves a true expert. When my neuro-oto says that he will not treat me with Lyrica because he does not find it helps with dizziness (although he finds that it may help with the headache part !?) I can’t just say - “yea, but Rodneysydney says he’s doing great on it.” I feel like screaming at him - so you’re just going to leave me like this, having to OD on Valium to get here, because you think Lyrica (or substitute about 80 other drugs being trialed) only helps with the headache?? Some day I may just give in and beg.

BTW, I was real confused that he thought some drugs were better for vertigo, some for headache. I queried Dr. Hain, who told me “my understanding is that if you stop the migraine, you stop all the symptoms.” Makes sense to me! (and my doc trained with Hain - i sure hope he doesn’t visit this board, he’ll send me packing for sure.)

Julie

— Begin quote from “Brian B”

— Begin quote from “joy”

Another problem: Doctors who are too proud/arrogant to admit they don’t know what’s wrong (not that they’re all like that). I’d still be on Valium & Dyazide if I hadn’t done more research - on my own - & found a neurotologist who seems to care enough to listen. (Can you tell I’m still a little ‘put-out’ with the ENT who told me I have Meniere’s last year?! )

— End quote

Joy,

I would be deaf in one ear by now if I had let the an arrogant doctor perform an unneccessary operation on me.

Dizzyupthegirl,

Sometimes you have to take your own health into your own hands when it comes to deseases such as MAV that the doctors have little knowledge of. The important thing is to talk to you doctors. If it seems like they aren’t doing anything to help, or making things worse, then it is time to move on to another doctor. My first doctor dx’d me with meniere’s and two years later wanted to do surgery without doing further testing to warrant the surgery. I started doing a bunch of research and figured out that I probably didn’t have meniere’s and started talking to other doctors who agreed with me.

— End quote

Couldn’t agree more. Excellent feedback.