Update

Hi, how is everyone doing? I haven’t posted for months. Things have gone from bad to worse for me, and I’m completely despondent about the whole thing now. Anyone doing any good? I wondered what meds have worked best for people overall, does anyone know? Because I’m seeing my specialist on Wednesday, and we are going to try something new - not sure what to go for next though really. Have tried Pizotifen and Nortriptyline - no good at all :frowning:

In fact, after 23 years of this living hell I really feel like I’ve completely had enough. I came off Lustral to go on the Piz & Nort, and I feel worse now than I have in years. All I see ahead of me is changing meds every few months, and feeling anxious and depressed and dizzy forever and ever :frowning:

Everything for me is visual triggered. Can anyone tell me the best med for visual triggered stuff? If anyone could please offer any advice I’d be very grateful.

Hi Sally,

I don’t think there is one answer unfortunately, and what works for one person doesn’t necessarily work for another. I was very visually triggered (both for MAV problems, but I have also been very much so for normal headache migraines, as I’ve always found the supermarket environment very difficult, flickering lights etc as triggers for me), and found pizotifen the best thing for me, but it took months to be fully effective, so I was wondering how long you gave it a go for?

I can’t really go anywhere anymore. It’s all so much worse than before. I can only spend a few minutes in a shop before I go so dizzy I can hardly see. I can’t walk down a street or anywhere. My life is getting more and more restricted all the time.

I started the Pizotofen in April, and the Nortrip was added a couple of months later. I came off the Lustral gradually, and have been off it completely for about the last 2 months. All I feel now is the same but worse - worse dizziness, worse (almost unbearable) anxiety, and now feel completely depressed as well. I didn’t think it could get any worse but it has.

Thanks for the reply, Beechleaf. I saw Dr S today, and he’s told me to stop the Nortriptaline and start on Pregabalin. I hope it improves things a bit - I’m scared it won’t. Hope everyone is doing ok x

Hey, hang in there, I might not be able to speak from experience as I’m just beginning to look for treatment options but I know there are a wealth of treatment options available and it’s not a hopeless endeavor, just a matter of finding the right combinations.

Keep discussing your options with your doctors, you might and I emphasize the word might want to look into MAOIs such as nardil. That’s a very potent medication and also a dangerous medication. I haven’t heard anyone on this forum try that medication yet, but I know that for other anxiety and depressive disorders it’s considered one of the most powerful antidepressants. I don’t want to sound like I’m recommending that medication though, because it is dangerous, I just want you to know that there are more treatment options than what you might be aware of.

Vestibular rehabilitation, yoga, progressive muscle relaxation, relaxing your jaw, regular exercise, proper diet, and medications. Hopefully these can alleviate your symptoms.

I wish you well :slight_smile: please don’t stop trying!

Jangle - thank you so much for your reply. I am feeling a bit more positive since I saw Dr S again the other day. I’m pleased that we’re trying a different med, and my vestibular exercises have been tweaked too, so fingers crossed.

I hope you start to feel better soon too. It sounds like you’re equipping yourself with lots of knowledge about MAV and what can be done about it, and that’s a brilliant place to start :slight_smile:

Thanks again for replying :slight_smile:

Sorry to hear you’re having such a bad time finding the right medication but, I’m sure with DrS help you will get there. What dose level of Nort and Pizo did you get up to ?