Have you seen a neurologist?

My MAV started in November and I’m being treated by the Balance Centre at my local hospital. I don’t seem to be getting anywhere, so am considering getting a referral to a neurologist.
Has anyone else seen a neurologist? What are your experiences?
Also, if you can recommend health professionals in other fields, I’d really appreciate it

Seems strange that you are at a balance centre but haven’t been seen by a neuro. They should at least have one in-house. Who saw you, an ENT? What have they prescribed?

I saw an ENT specialist at my first appointment and my hearing and eyesight tests were above average, so they diagnosed me with MAV. They prescribed Beta Blockers, which didn’t work, so I had a follow-up appointment today and they prescribed Amitriptoline. I’m in the UK so am wondering if I should go private to see a neurologist

Louise, that was the same order of prescriptions I tried, only difference is amitriptyline seems to work for me (i’m not always 100% but it’s still night and day compared to the suffering I was enduring). Sometimes it can take a higher dose to have an effect, are you titrating up to 30mg?

Wow, that’s great! I hope the same happens for me. Yes, for the first 3 days I’ll take 10mg, days 4-6 I’ll take 20mg, then 30mg from then onwards.
Have you found that you can take them at different times during the day, or on a night only?

Take them only in evening, at 9:30pm or thereabouts. They can make you very drowsy so don’t take them during the day. :slight_smile:

Thank you! My packet says “take one tablet, three times a day” but something didn’t seem right when my Grandma told me that she takes Ami. to help her sleep!

Grandma knows best!

1 Like

How are you getting on now, any improvement?

Thanks for asking :slight_smile:
I started taking the Amitriptyline at 9.30 every night (as you said) and also started some physio exercises, which were recommended at my appointment on Monday. On Tuesday night at midnight I fainted and drifted in and out of consciousness for about an hour…pretty scary! Not sure if it was due to the exercises or the medication. Thankfully, I was fine last night. Have you had any of these issues?

Gosh that sounds scary, poor you! Not had that experience with it … I wonder if it was the Amitriptyline … can lower your blood pressure sometimes. If you are feeling light headed, get up slowly. Any improvement in symptoms?

None as of yet, but it’s early days so I’m still hopeful. I feel dizzy/faint for an hour after I do my physio exercises, which I do 4 times a day, so it’s hard to judge. Ironically, I have a high blood pressure, so it’d be great if the Amitriptyline lowered it!

Were you getting attacks and if so how regularly? I was getting vestibular migraine attacks as frequently as 1 every two days and once I’d been taking amitriptyline for a week or so they completely stopped.

Wow, I’m glad they worked so well for you! Mine is more a case of constant dizziness, then attacks are brought on by triggers (stress, disrupted sleep, anxiety, hunger, bright lights, heat, doing too much etc) and hormonal changes.

Yeah, I count myself very lucky, but then at the start of this journey I had breaks with no attacks without meds, but decided to accept meds to make sure I was consistently without attacks as they end up becoming a vicious cycle.

My triggers are visual ones (it all began whilst watching a projector), particularly artificial lights and disrupted sleep. The attacks disrupt sleep which becomes a vicious cycle. Without the meds I got to a point where I could not look at a computer screen without feeling symptoms after only 30 minutes and could not walk around a supermarket without feeling really weird, like one leg was longer than the other. I don’t believe I have food triggers, but have given up caffeine and dark chocolate.

Hi there. Thought I’d pipe in! I’m on nortriptyline which is the newer version of ami. I was told to take it at about 6 pm rather than at bedtime to minimise any kind of ‘hangover’.

Louise, it made me so lightheaded to begin with. I did actually black out once. If I get up too quickly, especially out of bed, I get very lightheaded. It subsided after time and it’s not so bad any more. It took me a good couple of weeks to adjust to each increment. It has worked wonders though so stick with it.

So you’re both in the UK? I’m in the south east and see Dr Surenthiran. Who do you see?

Yeah, at 20mg I can get a small hangover from Ami in the morning … but ‘hangover’ is a rather strong word … more like additional lethargy …definitely not as bad as a red wine hangover!! :smiley:

Agree these drugs are ‘transformative’ as my occ. health doctor promised.

Indeed, I’m in SE UK and I used to live in Tunbridge Wells, he’s based there right? I’m seeing someone in a London balance centre. I can PM you more details if interested.

@turnitaround, I don’t believe that I have food triggers either, strange! I went for a month without an attack once, but wouldn’t want to risk not taking the medication either.

@Scottl, thanks for the information! I’m up North. It’s reassuring to know that you had a similar experience when you started Nortriptyline. When I’m finally back at work I’ll have to take it at 6pm (12 hours before I wake up) but at the moment I still can’t work. Seeing an Occupational Health doctor next week though :slight_smile:

1 Like

Just wanted to chime in on the original question. I saw two different neurologists and had very different experiences with them. The first was a run-of-the-mill guy who didn’t specialize in migraines. He did some standard neuro tests, found nothing wrong, but got me to do a round of Botox since that’s been shown to help with some of the symptoms. Well that didn’t work. About a year later, I was able to find my way to a neurotologist (sort of a neuro crossed with an ENT), who after seeing me and diagnosing me with MAV gave me a list of neurologists who specialize in migraines. So the second guy I saw was much better. He confirmed my MAV diagnosis and told me to take magnesium and Vitamin B, and said if that didn’t help enough I could try nortriptyline. However I take a different antidepressant which I like and don’t want to switch that up. In any case, the magnesium helps me a good deal, so I’m sticking with the following regimen: 50mg B-complex once a day, 500mg magnesium twice a day, and 200mg CoQ-10 once a day.

Is the antidepressant you take a known migraine prophylactic? I may try those supplements, given you and liv85 seem to get on well with them …