I keep getting the run around from dr’s and I’m so frustrated :evil: one minute I have MAV one minute I don’t and nobody seems to want to help me I’m so tired of crying begging the doctors to help me. Does anyone know of any good doctors in Oregon? At this point my family and I are even willing to travel for help to California, or Seattle if I can’t get any help in Oregon where I live which I haven’t been able to for a year I’ve only been brushed off I’ve even brought in the MAV survival guide handout from this site with me to my appointments after being diagnosed with MAV saying this is how I feel and yet they still don’t want to help me in any way. I need to find a doctor this site has helped me by reading your posts and trying to stay positive through this whole thing don’t know how I’d make it through this without this site thanks again for all your help.
I’m sorry you haven’t found a good doctor yet. Are you seeing a neurologist? It is good to find one that specializes in migraine. You can try to Google.
What are your symptoms?
THere is a site that is really informative and I got tons of information off of…dr. Hain in Chicago at the Dizziness and Balance Center. I live in Las Vegas but went ther because he seemed so knowledgeable about this disease. I have no regrets about seeing him, but truthfully, I didn’t learn anything new. HIs site is that good. He ended up prescribing Effexor, which I could have guessed he would. Between the book, “Heal your Headache”, this site, and his site…I think I"ve learned way more about MAV than from any doctor. That being said, you need to find one who can prescribe you meds if you want to try that route.
Dr. Baloh at UCLA is supposedly very familiar with this and would be worth flying out to see…
I have seen a Neurologist he said I had MAV I also saw a oto neuro who said I had MAV then when I saw the same Neuro yesterday he said he doesn’t think I have MAV that my migraines are different from my vertigo and dizziness and that it’s 2 different issues that he doesn’t need to see me anymore to go back to my primary. I’m not able to drive have motion intolerance, feel as though someone is always squeezing my head, hard to go into stores, got laid off my job because of it since May, at times I’m laid out in bed for days, head pain with headaches, I am taking topamax, and the Neurologist I saw was a headache specialist thats why I’m so frustrated because I’m not getting any better and he turns me away to my primary
yeah it can be a process for sure. So the Topamax isn’t working at all?
I know it supposedly takes up to 4 months to see results, and a slow titration very important. Do you have any issues with anxiety/depression? Low serotonin can be a problem with this as well, and many doctors prescribe antidepressants to help. For the motion intolerance, do you respond to any meds like Bonine, dramamine? You might consider asking for Phenergan…it’s good for motion intolerance, and has helped me a lot. It also helps with sleep and anxiety. You need a prescription for it, but it’s over the counter in some countries. It’s a fairly benign medicine, and most doctors don’t have a problem prescribing it.
The Topamax is helping some with the headaches but not with the other symptoms although it’s only been about 9 weeks and I am still going up on my dose I have tried meclizine which didn’t seem to help they put put me on atavin didn’t like that at all I’m sensitive to medicine so I feel yuck on a lot of it but I have never tried Phenergan or an antidepressent I have noticed recently getting more anxiety, not sure if that’s even what you call it just notice that I get afraid of getting worse or having a dizzy spell when where out as a family doing something and I’m not at home.
What dose are you on topamax? I’m on Topamax and finally starting to feel some steadiness after several weeks at 100 mg. I went up slowly over a month to get to 100 mg. I’ve been at 100 mg for just about 4 weeks now and in the last week I’m finally feeling better. I’m also on 15 mg Prozac, and am tappering slowly off of that to see what happens. I’d say stick with the Topamax for a bit longer and up the dose if you are well below 200 mg, the maximum dose shown to be effective for migraine–that is if you can tolerate the side effects.
I was on Celexa prior to the Topamax/Prozac combo and that worked pretty well.
I live in Seattle and haven’t found anyone who knows a great deal about MAV, just a neurologist who knows about the sensitivities that come along with migraine–dizziness, motion intolerance, etc., diagnosed me with this over two years ago. I’m going to see another neurologist that I’ve been recommended for migraines to see what he says.
Also wanted to add that I’d say you are experiencing anxiety if you worry about getting dizzy when you aren’t dizzy. An antidepressant might help with that and the MAV at the same time. There is an overlap with the MAV and anxiety for sure. Lots of us have both, and it’s no wonder with being dizzy all the time that we’re axious!
I think Kelley gave you good advice. I live in Oregon too, have seen a neurotologist and a flip-flopping otoneurologist and gotten no diagnosis (in 12-plus years). Everything else has been ruled out, so all that’s left (in my view) is MAV, even though I haven’t gotten any doctor to agree with me. Even though they can’t tell me any other reason that I’m dizzy!
I don’t think the famous local headache specialist is interested in MAV either. They all focus on the headache, the headache, the headache. (Which I barely have, and yes I’m extremely lucky on that point, and my dizziness is relatively mild, but I STILL don’t LIKE being dizzy and would like to STOP being dizzy, but no one is interested anymore in helping me figure it out.)
So if the oto-neuro said your migraines are not causing your dizziness, what DID he think was causing it?
I think, as Kelley said, you simply have to educate yourself and experiment with things (triggers, drugs) yourself, as long as you can get a PCP to prescribe stuff.
Dr. Hain’s site is a must-read for dizzy patients:
Good luck to you; hang in there.
I live in Oregon and I know of two great doctors…both in Portland. Both are otolaryngologists/neuro otos. Dr. Wackym is from Legacy-Good Sam. He did a craniotomy on me a few months ago for SCD. Another good one is Dr. Anh from OHSU. I went to him for a second opinion. I’ve also heard great things about a regular neuro named Dr. Jeffrey Brown (he used to be from Legacy-Good Sam, but he’s on his own now) and he allegedly specializes in MAV.
Hope this helps!!
Hi Linda, may I ask who diagnosed you with MAV? I am curious to find out if there are any dizziness specialists in Portland who “believe” in it, especially any who are interested in trying to treat it even if you don’t have headaches.
I have not heard that Dr. Brown specializes in MAV specifically, but he does indeed specialize in dizziness and hearing issues.
How did your SCD operation come out? Are you better?
Dr. Wackym initially tried the MAV route before he cut through my skull…I tried 3 meds for MAV with nothing but side effects. Dr. Anh is a BIG believer in MAV…even more so than SCD. Dr. Anh is the one who recommended Dr. Jeffrey Brown, who I have not seen.
My SCD surgery was somewhat successful…I have SCD in the other side too and I may wait a while until my symtoms get horrific again before I get the other side done. I WILL say…I have had a HUGE reductiion in “painful” migraines since the SCD surgery. There is some soft research going on right now to see if SCD causes Migraines. I think that it does.
I have said this many times before on this site…**everybody on here really needs to consider SCD **and push for the right high-resolution CT scan to rule it out. The symptoms (as with so many vestibular disorders) are very similar to MAV. Your doctor needs to know exactly what to tell the radiologist or the radiologist needs to be very familiar with this highly specialized CT scan before you waste your money or exposure by having it. I had 2 before they figured it out.
Well wish me luck I am going to see Dr. Brown this Thursday I hope he can give me some help I will let you know how things go.
Good Luck and Blessings to you with your Dr. Brown appt. If you need another opinion, Dr. Wackym DOES believe in MAV and you would get an unbiased opinion from him.
Let us know!!
I to am confused by Oregon docs. I have seen 2 oto’s that say MAV one ENT that said no. The two oto’s disagreed with the hydrops.
ECOG test positive, and put on low salt diet. 25 mg of Topamax for 3 weeks. Never upped dosage, said he doesn’t believe in higher dosage.
Found out thru other docs and research, that ECOG tests cannot be trusted, they are not very accurate at all. Most docs dont even do them.
Im very disappointed in the doc I saw, which is one you all talk about. I was dx with BPPV and that is where my vertigo is coming from, and
symptoms excubberated by stress/anxiety. Had a headache related to cervical issue, and didnt have migraines until I got off the topamax, now I
have had 4 minor ones THIS month. So confused. Feel better though, after getting off topamax and low salt diet. But still feel dizzy, or more wavy.
I have been prescribed Celexa. So I will try that, then if needed Effexor, which Im terrified of.
So good luck with the Oregon Docs. !!
How exciting to see fellow Oregonians, and a few Washington neighbors.
Not that I’m glad your not feeling well. Pacific NW and Australia must be drinking the same water.
It looks like its been a while since you all posted, are you all better? Just like
to compare notes. Thanks. Kayera.