The Vestibular Migraine Community

Neurologist appointment was a diappointment....need advice please!


#1

Is it common for neurologists to not want to acknowledge that migraine associated vertigo is an actual type of vertigo separate from just vertigo??? I have been to 3 different doctors prior to the neurologist that all gave me different diagnosis vertigo, meriere’s, labrynthitis and now he wants to label me again with vertigo when I know myself that I have for sure without a doubt in my mind MAV because my cousin was diagnosed and had the exact same thing happen to him that I experienced, and it’s hereditary. I’ve been having good results with topiramate and was hoping to have an increase but he wants me to stop completely because I was crying at my appointment. That’s because he was a total rude arrogat a–hole!!! I was in total shock and wanted to walk out so badly :frowning: I waited so long for my appointment. My an husband came with me…the doctor scared him with the side effects of topiramate. I have agreed to taper off the meds and see what happens. Start with a clean slate and go to my doctor and ask for another referral. I will try another medication with less side effects and go from there. I’m such an emotional mess. I’ve not been feeling well since March 21st, been off work, haven’t driven and been dependent on my husband to drive me everywhere. It’s tough when you are used to being independent. I’m sure you all totally understand. Thanks for letting me vent. This group has been a Godsend!! Thank you!!!


#2

Sorry to hear that you had such a horrible experience at your appointment. I had a similar experience at my last ENT appointment so I completely understand how it feels to wait to see someone, and then to be unexpectedly upset and patronised by them instead of helped. It actually takes a bit of time to get over it.

Getting another referral from your GP to see someone else is a good idea. And if coming off Topiramate causes you to feel worse then you have a really good case for asking to go back on it (or something similar) and also for helping strengthen your argument for your diagnosis being MAV if Topiramate helped.


#3

Thank you Sarah…helps to know that you are not alone in your struggle. May I ask if you have had any success since?


#4

I think this all depends on the consultant …if they are “old school” they will not take on new theories and opinions unless thay can read it in their neurology or ENT training manual. This leads to patronising doctors who dont study the latest findings and get opinions from the country experts on the subject. Just tell him that you need migraine medication and that your balance centre is malfunctioning …it could be from your ears/eyes/bones and muscles and be a form of the mentioned diseases…but ultimately the right medication should lessen your symptoms and get you back to a near normal life…paul


#5

I think this is absolutely true. And I don’t suppose they have any idea how badly some patients are affected by this attitude.


#6

My biggest gripe about a lot of doctors is how they fail to EXPLAIN things to you properly. If something doesn’t make sense or is not the complete story I feel let down and on my own. Also I wonder sometimes if the doctors deliberately hide some of the truth from you so as not to make you anxious or alarm you. That to me is counter productive because I’m left with feeling I don’t know the whole story, so I become more anxious.

My main specialist who I see most often always dismisses the feeling of fluid i get in my ear in the morning. I am convinced this is the biggest clue about what is REALLY going on in my case …


#7

Hi there. Well he sounds like a complete idiot. Vertigo is a symptom of various illnesses, it’s not an illness in itself. The best kind of consultant to see is a neuro-otologist, as they deal with balance issues specifically. Where are you? Someone may be able to recommend someone near you.


#8

Hi sweetheartsok. My story is a bit long and ongoing so I won’t write all of it or you will fall asleep reading it :sleeping:. But since I saw this ENT consultant in February I have seen a neurologist (my second one) who was really nice, (there are nice ones out there). She listened to me, made suggestions but then allowed me to try the medication that I asked for first, that was Zonisamide. Unfortunately I wasn’t able to tolerate it (ear pain, burning feeling, ear fullness/pressure, numbness, felt like my head was in a clamp). I then tried her choice which was Amitriptyline, but I had problems again (ear pain, facial numbness, fast heart rate), so I had to stop that too.

I am now back on just a low dose of Propranolol. I have a collection of different medications which I try at lower doses now and again to see if I can get any success, but I am sensitive to ear side effects, I am still a work in progress!! I still do have some dizziness, but it isn’t all the time, and it is a lot better than it has been. I have been struggling with stress/anxiety and restlessness a lot more now though.

I have another appointment with the same ENT consultant on the 16th May. And the neurologist on the 5th June.

One thing I did do after my horrible ENT appointment was write a three page letter to the consultant! I find that I can get in quite a state at appointments and unable to articulate what I want to say very well. Also there were two HCAs in the room as well so I felt a bit outnumbered and intimidated.

It certainly does help to know you are not alone. I have found this forum really helpful, not just for information (though it is great for that) but for support as well.

I hope you get more success with your next referral. Neurologists are not all like that one.


#9

I know that feeling of feeling let down and on your own with it, especially when it is a consultant who has fobbed you off. They are supposed to be the experts, so if you don’t get the help you need from them, where do you go next? I went back to the nurse at the GP surgery for an ear check having been fobbed off by an ENT consultant! She told me it wasn’t appropriate to go from an ENT consultant to her (and I did know that really) but I didn’t know what else to do. It makes you feel like that.

That’s really annoying. Did he/she explain why they didn’t think it was important?


#10

No, just dismissed it as an “adherent sensation” which basically means its not normal … yes I know that! :smiley:


#11

I know its not good to be a pessimist - but I often feel that Dr’s believe that “BS baffles brains”, especially if they don’t know the answers themselves, or even worse, feel that the patient is too stupid to understand.
Rant over!


#12

My doctor says that he is not sure if i will get better…,but i am getting better, so i try to dont believe in him and keep praying and thinking posite.


#13

Hi Scott…that’s exactly what I said to my husband wants I came home and calmed down enough to speak again. I had a complete panic attack in the car and couldn’t even breath. I have never been treated so inhumane in my entire life. That is exactly right Scott…vertigo can be a symptom of many serious illnesses. He’s a very bad neurologist!!! I am in Southern Ontario Canada. I have a nephew who is a dentist who is trying to get me into a neuro-surgeon in London Ontario, but if he can’t I think I will go to McMaster Emergency and see if they can’t refer me to a doctor in Hamilton. I live near Niagara Falls and this area has nothing. I would even consider traveling to Buffalo if it didn’t cost me a fortune. All I wanted from this doctor was a diagnosis…I am pretty sure it’s MAV from my symptoms. I am tolerating Topiramate very well and I’m at 50 mg 2 times a day. I was hoping for a small increase and to work with a doctor who would maybe also increase my anti depressant because I’m pretty sure it’s not working so well right now. This neurologist definitely contributed to that…he asked what medication I was on and when I said zoloft he says for what I said anxiety and he says oh I can see why. Who says that?? Obviously I’m anxious!! I’m dealing with a life changing illness right now and he’s not helping me any :frowning: Thank you so much for your response Scott. Great idea on asking in here if someone may have a recommendation on a neurologist :slight_smile:


#14

Thanks for the info Sarah…hope you figure out a med that works for you. Glad you have had good experiences with your doctors. That makes it so much easier. I am going to try again and hopefully have better luck :slight_smile:


#15

Brilliant. Like you I would have thought something like that would be significant to reaching a diagnosis.


#16

Thanks. I wish you all the best with it.


#17

PRECISELY!!!


#18

Hello Swetheartsok,

Your post caught my attention and I feel for you. It’s not nice to be treated in such a disrespectful manner by a physician. I noticed you are in Southern Ontario as am I. If I could make a recommendation, it would be Dr. Parnes at the London Health Sciences Center. Here is a link - https://www.southwesthealthline.ca/displayservice.aspx?id=168812. I can’t say enough about him and his team. I was diagnosed with MAV be him and although it’s not “cured” it is more manageable. My GP always said vertigo is a symptom, not a diagnosis. It sure helps to calm the anxiety when you understand what is causing it.


#19

I have had two good experiences and one bad one. After not getting anywhere with my primary care doctor for my vertigo (episodes on and off for over thirty years, I did some research online and found a specialist near me (a neurotologist), as the episode I was experiencing wasn’t resolving. That specialist diagnosed me with potential MAV. Unfortunately, shortly after we started treatment (nortriptyline), he moved and there was no one in the practice that had his specialty. That left me to find another doctor on my own again, so I tried an ENT in my network. Bad idea - he talked to me for ten minutes, handed me a pamphlet for Meniere’s (which my previous doctor said I definitely did NOT have), and told me he couldn’t manage my nortriptyline, that I should find a neurologist. I was devastated, as my symptoms were better, but not completely gone (it had been five months since my major episode at that point). I was determined, however, to find someone that would address my issues properly. I researched all the neurologists in my network, and found one that had actually written a couple of articles on MAV. At my first appointment with him, when he heard who had prescribed the nortriptyline, his immediate response was to say how much respect he has for that doctor. Then, after about 15 minutes of reviewing my history and symptoms he shook his head and said, “You mean through all the years no one has suggested migraines?”. He was visibly disappointed. He said he was confident in my former doctor’s diagnosis, and confident that we could get my symptoms under control with the current meds, and eventually taper off of them. I have seen him twice since then, and could not be happier. He has convinced me to up my meds each time, and now I am back to 100% almost all the time. Please don’t give up - you will find someone!!!


#20

Hi DizzyButHopeful you found relief with nortriptyline? Can I ask what dosage you are on? I am currently on Topamax and nortriptyline. I just started the nortriptyline for sleep and I am going to titrate up to 50-60mg and titrate down to 50mg of topamax because it is causing sleep difficulties for me. I may come of the topamax completely if sleeping conitiues to be an issue. I like seeing people have success with nortriptyline.