A little back story… I was diagnosed with MAV on December 20, 2012 at John Hopkins in Baltimore MD after almost of year of symptoms and endless other tests/doctors. I live about an hour away so they just sent all their findings back to my local Neurologist to continue care. I had my first, post diagnosis appointment with him this afternoon… and it felt like the doctor could not have cared less. This week has been horrible, I swear the worst my symptoms have ever been, I spent all yesterday literally on my bedroom floor and haven’t been to work all week. My appointment was scheduled for 4pm. I ended up not seeing the doctor until nearly 6pm. After about 30mins of waiting I couldn’t be upright anymore so when the doctor came in, was literally on the floor again. He didn’t ask me if I was okay or offer any type of help just told me to get on the exam bed. So then I sit on the exam table for about 10mins as he reads through my chart because he had no idea who I was or why I was being seen prior to walking into the room. Finally he acknowledges my presence and offers to put me on a medicine that should help then basically tells me to have a nice life. So I stop him from leaving and tell him about how my life is practically unbearable, I get these episodes almost daily, I barely sleep, I’m missing work etc is there any lifestyle changes I should make, work accommodations, therapies? And he gives me nothing, just says take the medication and schedule an appointment for 6weeks
What med has he put you on? Very disappointing treatment from a professional who is supposed to care for his patients! I’d like to see him in the same boat as us - his attitude might change. Can you get to see another neurologist - preferably one who has some rapport with his patients and understands the mav condition. Someone on the forum may be able to help. Just ask.
The first neurologist I saw put me on Nortriptyline - said that 50mg was the max I could take & if that didn’t work I’d just have to ‘live with it’. Some doctors are definitely in the wrong profession! Don’t give up - at least you have found the forum & with all the info here can be more informed than a ‘dead beat’ doc!!
Can you just see the person who diagnosed you at Hopkins, or maybe another neuro there? UGGGGH for obnoxious drs…I had one who literally laughed in my face and said “i don’t know” when i asked him what he thought was wrong with me. I was referred to a local regular neurologist to treat my MAV, and she thought that MAV only occurred when you got dizzy at the same time that you get a migraine…and she insisted that I had BPPV even though I told her I tested negative for it at the ENT. This lady also told me the only meds to treat vertigo were ami and nortriptiline. Wrong, wrong, and wrong!!!
I know it is a pain to drive that distance, but honestly it is probably worth it. I actually was living in DC when my mess first started and was referred to a neurotologist at the university of maryland. he has an excellent reputation but he was kind of a jerk to me and missed my MAV - he said it was “anxiety” and that i should do vrt and see a psych. so i wish i could give you a referral but honestly had i known about hopkins i would have tried to see someone there myself.
so like you, i can’t rely on my local neuro- i drive 3 hours to boston to see an otoneurologist- it is a pain but it is my only option to get real care.
Thanks for the support ladies. I would LOVE to be able to continue being treated at Hopkins, I received A++++ quality care there. The only issue is, my primary doctor took away my license until I get this under control so I can’t drive myself and my family has been less** than supportive throughout this, my mom is firmly convinced it’s all in my head and that if I had a boyfriend i would feel better. (lovely right?). We don’t even have a train/bus here that runs to Baltimore. What’s so odd is this neurologist came very highly recommended, he treated both my mother and my aunt for their strokes and I swear I’ve met him over a dozen times before while they were getting treatment. He put me on Nortriptylin as well, but only 10mgs to start for a week at bedtime, the second week 20mgs, the 30mgs the 3rd week. He has 30mg as maximum dosage. Didn’t prescribe any other medications or look at my food/sleep diary or make any type of recommendations. He also very casually mentioned that my arteries are “narrow” but didn’t seem that was anything we needed to look into. I don’t have any type of medical degree but as far as I know does that not mean I’m at increased risk for stroke/heart attack and I’m only 24.
I got a referral for another neurologist, my best friend from high school Schizencephaly and has been treated by this doctor for years so hopeful for better results. When I called the office they seemed much more friendly at least.
I’m sorry to hear about the driving/family situation- that is a lot to deal with on top of the dizziness I hope this new neuro works out for you!!!
i was just thinking, do you have a good primary care dr who you like and trust? When I went to see an otoneurologist in boston (3 hrs away), i mentioned how my insurance was ending and i would no longer be able to see him. he wrote down a list of meds that he would recommend and said just have your primary care dr. prescribe these for you. my primary care dr. wasn’t comfortable rx’ing the beta blockers and calcium channel blockers for the purpose of migraine though. But that is also an option…the drugs are really the same no matter who the dr. is. you could call your hopkins dr. and see if he would be willing to write a letter to your primary care dr. outlining med options?
That is so disappointing. Since you already have a diagnosis, you don’t necessarily need to see a neuro, as they are usually more expensive, harder to get into etc…If I wre you, Iwould find a good psychiatrist. They are well versed at the same meds that we use for MAV, and I have found them to be more sympathetic, will answer their phones if needed, and quite honestly, how many of us haven’t suffered with some depression and anxiety in dealing with a chronic illness?
THat being said, 10mg Nori is a good place to start. That is what my neuro prescribed as well…but my p-doc (psychiatrist) thought better to start me on ami since it’s more sedating.
You will find more information, support and feedback on this forum than any doctors office.
Glad you are here!
Are you in va or md or pa? You say you are about an hour from Hopkins…so trying to pinpoint where you are?.. I went to Hopkins as well for many years but am being treated at Georgetown…very “MAV savvy” drs here… Pm me if you’d like te name… Don’t accept subpar treatment from any doctor…ever!!
@sarah - My primary doctor is actually at a satellite branch of John Hopkins, she doesn’t seem to want to touch my MAV with a 10ft pole however since it’s a “neurological” issue. I would really like if she managed my care because she’s been with me since day one, I swear I’ve been in her office at least one every two weeks since March 2012. I will definitely look into this.
@rocky - I’ve never been to a psychiatrist/therapist in my life so I’m sure I’m overdue Have many of you found this helpful?
When my internist (who was my good friend) told me I should see a psychiatrist, I was thoroughly offended. Looking back, it was because she knew they knew a lot more about the meds, and had more time to spend with me. She worked for a place that scheduled 15 minute spots for appointments, and I spent more time than she could allot. I think she also knew she was out of her league with me when the meds that worked for most people didn’t work for me. (i.e. Lexapro, and Trazodone)
I found both psychiatrists I worked with to be wonderful. One man in particular I called sobbing a few times and he was so caring. I send him cards now and then to remind him that I will never forget his kindness and that I’m pretty much normal now.
I really don’t think it’s something people should be worried to do…there is a stigma to it, but I think you have to do what you have to do to get better.
I think Kelley made excellent points- and a lot of the mav meds are also psych meds, so there is a lot of overlap. It can be hard to find a good psychiatrist/therapist that you like though- it took me 4 therapists to find a good one!!!
Kelley, what other meds did you try before the Cymbalta?
You say you are about an hour away from Hopkins, but not what direction “away.” I don’t want you to tell us where you live, but I travel to a doctor in Delaware who is NOT a neurologist. He is an ENT and he specializes in migraine treatment. He’s amazing–though he is ALWAYS at least an hour late with appointments. He’s always late because he spends extra time with every patient. SO you sit in the waiting room irritated to the nth degree that you are waiting forever, but when he is with you and answering all your questions and offering you so much information you are SO GREATFUL it is insane.
It took me about three months…much of which was my own fault for not putting 100% into my treatment (denial) to get anywhere with the diagnosis and treatment, but we are getting somewhere now–and it is a GOOD direction we are moving in. I consider this guy my hero. So if you live in the Eastern direction of Hopkins–maybe give a private message and I’ll shoot you some contact information so you can try an appointment with my guy. After the first 4 appointments and once he gets you set with a stable medication, he sets you up with his nurse practitioner to monitor your med titration etc. And, I swear I thought “great–some numbskull who will shuffle me around–this’ll be the end of that,” but the practitioner is just as thorough if not MORESO than the doctor. He is AMAZING and patient and full of information and helpful advice.
SOmetimes it isn’t the neurologists who are the better docs in this one I believe.
so i did schedule an appointment with a therapist… oh my lord, now i see why therapy gets such a bad reputation. She basically told me to smoke weed, have some wine and all shall be good in the world. Probably what I get for booking an appointment with someone named “Sky”. I have the worst luck in doctors but not giving up, i did ask to be seen by another person in the practice for next week’s appointment. I’m not really one for “peace, love & happiness”, I’m more a tough love kind of person. I probably should’ve seen a therapist a decade ago when I had this little problem called anorexia but no one paid much mind b/c honestly I just went from 300lbs to 120lbs which isn’t underweight at all so in the backwards world I live in that’s just a fat kid getting skinnier - nothing to be concerned about at all… oh well
I just got a call and I was able to move my appointment up with a different neurologist to tomorrow, so hopefully better results there.
TEE HEEE HEEE
Sorry–I have to chuckle. I understand the “crappy doctor” issue though. After all the work to get yourself an appointment, take a day off work (or whatever your life is sheduled for), get yourself there, and then sit in the waiting room for eons–you finally meet the person and they are either 1) a quack with goofy ideas of wellness 2) mean and nasty telling you that its all mental and you need to get over yourself 3) clueless in general–making you wonder how on earth they EVER got their degree or if you are having a super lucky, over the rainbow, lotto winning sort of day you hit pay dirt and actually find a good one. But then you worry every week that you are going to get a call that the good one is leaving town for some reason and you’ll be stuck out there all alone again.
Oh yea–I forgot the doctor who scares the holy raisinettes out of you by telling you that it might be a tumor and you’d better get an MRI right away to make sure you aren’t going to die next week. And then tells you that he can’t schedule your MRI for six weeks because the MRI center is backed up with appointments until then!!!
Yeah–loved that guy. :twisted:
Oh my goodness, I feel so sorry for you. I really feel your pain! I can’t stand obnoxious doctors. I have been flat on the floor at the docs with this before also and the GP just looked at me as if to say “ok, are you done now - I have another appointment.” It’s ok for them. You leave, they get on with their life…but you on the other hand, your life is on hold! I can’t help you at all with doc recommendations as I am in Australia but just wanted to say I sympathise and to hang in there. It took me so many years to find the right people and even then I had to travel 12 hours by car to see them! I feel sad that your mum thinks it’s in your head. I think my mum thought it was in mine too for a while, just because she had sat with so many docs with me who didn’t have an answer so just gave me a psych refferal. Keep on pushing for answers and don’t give up. I got to the point that i didn’t care if the docs thought i was crazy anymore, i kept coming back. In the end with my Mav diagnosis from a top neuro, they are all jumping on board saying “they suspected migraine all along.” Yeah right!!! Did give me satisfaction letting them know though
such a shame that everyone’s had such difficulties. you’d think, as a doctor, “patient care” would include actually caring for your patient. I can relate to every single one of those stories… but lucky enough I can say that the neurologist I saw today was FABULOUS!! I swear we spent over an hour discussing every one of my symptoms, she’s going to help me with work restrictions, set me up with an action plan for lifestyle changes/medication. Could not have asked for better
Don’t you feel like you’ve won the lottery!!! So happy you got lucky at last. Now to the real work of getting well. Good luck!
YEAH MILEY!!! so happy for you!!! good luck with the meds and keep us posted!
That is all…
Just happy for you.
My first neuro visit was awful too, but Dr. Denise Taylor in Orlando was great (found her name via Luna in this forum). I’ve only seen her once and am now waiting to see how the physical therapy goes before going back for a follow up…always hope!