Disappointed

So I just found out my appt with dr hain is cancelled because he is no longer doing phone consultations! I’m very sad and discouraged as I was really looking forward to this:-( my only option is to go there which I would be willing to do but would need mire time to notify my employer I need time off.
Any suggestions on what my next step should be?
We do have a dizzy and balance center here in my city but I’ve never heard any feedback about the md there but it might be worth a shot…,
Feeling discouraged

Gosh that is so disappointing that he wouldn’t at least do the one’s that he has scheduled and not accept new ones! I’m sorry.

Are you currently seeing a neurologist or a GP? Have you had balance testing? What meds are you currently on and what dosage?

That is discouraging. Will his partner still do them? I hear he is great too.

Pharmgrl,

I’d go back to that dizzy and balance center and demand some help… I’m sick and tired of some doctors not wanting to handle this mess. They’re the ones that went to school to help people and they’re the ones making the big bucks! I’d demand some help now. And as far as Hain goes, he should have someone else handle the phone consultations that’s learned under him so they can help people through the phone. Unacceptable in my opinion. We’ve gone through enough suffering to have someone who can help us not lending a hand. Sorry for ranting.

Greg

Ann
If it’s any consolation, I went to see him and quite honestly, I knew all the answers from reading his website thoroughly. He has so much info on there. I enjoyed Chicago, but he put me on his favorite preventative, effexor, which I saw coming. It didn’t work well for me and he pretty much said I could try propranolol or topamax, and pretty much any neuro can get you on a preventative.
I also agree that it’s bullshit to cxl an existing appt. If he decided to stop it, it should have been after he took care of his commitments. Tisk tisk!
Kelley

Hi Ann,

Yes, that’s bad form to cancel a preexisting commitment like that. Maybe he had good reason but if he did he should have told you. :?

I agree with Kelley that not seeing him is definitely not the end of the world. I would be more interested in hearing that you’ve seen someone in the flesh who can run through some differential diagnosis with you and just confirm for your own peace of mind that you are definitely dealing with MAV. If Hain came to that conclusion he would almost certainly put you on Effexor.

But you still need to find someone close by or by phone/ email who can walk you through this junk as you try a new med. What city are you in? Sorry if I missed that.

Scott

Thank you all for the support with a frustrating situation. It stinks to have such a let down, I’ve been waiting and looking forward to that appt, but such is life I guess.
Yes I am currently under the care of a gp and a good neurologist, just wanted a specialist to diagnose me. I am currently on verapamil 60mg, will increase to 120 shortly. My next med will most likely be nortriptyline. I think what I was looking for from hain was a diagnosis, because I agree with those of you commenting that treatment course won’t change much between docs, it’s simply trial and error. But he deals with this every day and felt like he could’ve given me that concrete diagnosis I yearn for, for piece of mind that I’ll be ok and to keep fighting this.

Im from Rochester ny, I was able to get an appt with the dizzy and balance center here at strong memorial hospital, the md there is an neurotologist, and he is listed on the Veda website. I just wish I knew someone who has seen him and what to expect with him. Sadly I’ll have to wait til mid December to find out, bummer.

Hi there - So sorry to hear this!!! How is the verap going? Have you noticed any change? I do know what you mean about wanting the definitive diagnosis and hearing that you will be ok eventually… Hang in there!!

Alli

I am very sorry to hear this as well. I had considered doing a phone consult with him just to get a MAV diagnosis (if he would have felt it correct) so that my PCP would take me more seriously and consider appropriate medications if I needed to change/try something. Most PCPs just don’t believe your dizziness and other problems could be from migraine if you don’t have serious headaches.

I would ask if he would be willing to consult with a doctor close to your home. It is not easy to manage the meds and MAV over the phone, and there can be issues with physicians prescribing certain meds out of state, but if he could help a local physician, by providing some consult, maybe that would work.

Best of luck and well wishes to you.