Relapsing, is it wise to start another drug too?

Hi everyone

I do hope you are all as well as can be.
I’m up and down with my relapse and this is the 4th week now that I haven’t been able to do much of anything. I have a written report from a private neurologist I consulted with and she suggests upping my Amitriptyline to 75mg (which I have 3.5weeks ago) she also suggests adding 37.5mg of Venlafaxine or Cymbalta to it for more control. She states she would do one thing at a time but how long is too long to wait to add in another drug? I feel like the Ami is starting to work as I seem to be able to move my head a little more comfortably but my vision is still very off and the other symptoms are still here.

Any suggestions?


So sorry you’re feeling so rubbish. Can completely empathise, as I’m sure so many of us on here can. Relapses are no fun in so many ways. I’m coming out the other side of a particularly nasty and long relapse. My meds were changed back in March. I started taking the new one (Betahistine) straight away, but only started my doubled dose of Amitriptyline about 6 weeks ago. I think it’s a completely individual and very personal decision as to when to start meds etc. I waited because I am ridiculously sensitive to medication changes and new meds and I wanted to make sure I was settled on one before I started the other. That worked for me but may not be right for you. It’s so difficult, I really do feel your pain and hope you get some improvement soon x

Remind me how long you’ve been on Amitryptyline? After taking it for over a year it stopped getting me much more improvement and I switched over to propanolol. However I could have also tried to increase the dose like you seem to be doing. I would try to wait another month before making the decision, but at the same time I know how crappy this thing is. Especially if you are feeling some improvement. Just my 2 cents

1 Like

Hey Erik

Thank you for your reply. I started Amitriptyline 2019 can’t remember the month, so a good few years now. I stayed at 50mg for a good 18 months and gained some weight with it. After a nasty relapse last year and my father passing away in Sept (brought another one) and now this years flare I was advised to go to 75mg, I am definitely seeing improvement I couldn’t leave my bedroom 5 days ago and now I’m uncomfortably hanging washing out in my garden, my vision is very off and has been for the last 12 days so I’m hoping for more improvement there. I can look at my phone but not out of the window, you know the drill. I’ve had double vision and the eyes not working together properly and the rest. I think I’ll stick with the Ami for a little while longer yes. It’s only been a month on Saturday so early days.

Seriously considering Cefely device now though. New Neuro has suggested some new things too like Ajovy and Venlafaxine so there are a few options for me yet.

Hope you’re well Erik x

1 Like

Personally, after reading your symptoms (double vision, head movement intolerance, eyes not working together) makes me re-live my own episode. Gosh I feel for you, and you seem so much more calm, logical and together than I ever was during that hell.

Ajovy has a very low side effect profile. For me it’s zero. I do the injection and forget. Effexor has a well established side effect profile, but much more evidence of it working for VM than Ajovy does so far.

If you are home (off work I assume) and have some support, perhaps a month is a long enough time to wait to trial something new as your body is already used to Ami. You could start something soon. I think I would as meds take a while to work. You want to feel better soon!

These relapses are too frequent and long lasting. You are doing so well my friend. Xx


Hey Belinda

Thank you for your message. I thought exactly that about the meds. Today has been my first day with no sickness tablets (managed to get down to 1 for the last 3 days) so I do seem to be on an uphill trend with the Amitriptyline.

Today I have been able to venture into my garden and potter about!! It will be 4 weeks on Saturday Since starting the increase so I definitely can feel it helping now. My vision is still off and I’m extremely tired but yes things are much more comfortable. It’s changeable as you know but I am trying to stay calm and not panic as it’s only a matter of time before this thing passes. It’s been going on for a long time now but this is the usual for my flare ups. Over the weekend last I couldn’t leave my bedroom so this is a marked improvement! I am so happy as I have to travel to see my Neuro at the end of the month and worried I wouldn’t be able to do the 3.5hr journey.

I’m unsure where to go after this flare passes I want to be better controlled but maybe the 75mg will do that? Or should I still consider adding in Venlafaxine whilst I’m better? I don’t know, but I am eager to try the Ajovy. How are you finding it in terms of symptom management? Xx

1 Like

It’s funny, I would like to give you a definite answer about Ajovy. But the fact is, I was out of the worst before I tried it - thanks to pizotifen. The past 2 days I’ve been a bit dizzy (visual vertigo and head movement intolerance). It’s definitely helped with headache migraines, I’m just not sold on the VM side of things.

I think it’s a good med in conjunction with another. I’m only on Ajovy though and suspect I’ll need something else if a bad relapse was to occur.

But maybe I’m not noticing it’s benefits? It’s a tricky question.

Hey Belinda

It’s great you’re only having the injection though?! Did you only take Piz for a short period of time? I think like you say it’s difficult to see improvements, especially over days. Great you’re not having side effects though.

I’d like to try the Venlafaxine as I’m still struggling especially with my vision. My eyes can’t focus if I’m looking out of the window or at myself in the mirror so that’s making me feel queasy! The other symptoms have really settled down but I’m still at home. I’m seeing my Neuro on 30th and I’m keen to get the ball rolling with something new. I need more control over time as my day to day is good and significantly improved but the flare ups are starting to become more frequent. The new Neuro seems to think they’re not but I’m the one having them. I’m glad to have an action plan though for sure.

Hi, I was on piz for 18 months. Yes I think you should too. Venlafaxine (Effexor) seems to be tricky to start from what I’ve read so I hope you can grit your way through the first few weeks for some great benefits.

Will be really interested actually as this may become something I try one day.

Hope today is an even better day than yesterday



Hey Belinda

Thank you lovely, things are starting to improve slowly. I have 10 days to go to see the Neuro and today attempted to put a little bit of makeup on to make myself feel a little better, difficult and uncomfortable as my gaze is very off and looking at myself in the mirror is super wonky but I put a little on anyway! Now have a migraine of course! Ear flushing the lot!

Do you ever have issues looking straight ahead during relapses or like rolling your eyes? Those are no nos right now for me but my eyes seem better in parts and others not so :persevere: ugh progress is slow :snail: xx

Hi, make up is a good step.

My vision is still a problem. My eyes don’t line up really. If I was to focus on a point, it’s not a sharp focal point if that makes sense.

I have long lasting issues with smooth movement. I actually think I have damage in that area of the brain - the v5 area. Moving scenes on screens are jaggered and never smooth. This I want to investigate, I want to see my report for the MRI and see where exactly my lesions are.

I don’t have a problem with rolling my eyes, however remember my eyes hurt to move when I was bad.

I have visual vertigo when lying down too.

It’s so bizarre that vision is so severely impacted. This is what I live with and yet I say I’m largely doing well.

I really hope you’re on the up Kirsty

1 Like

Hey Belinda

So I have my prescription for Venlafaxine at the chemist. I think I’m going to start them tomorrow evening, at this point I have nothing to lose. I have messaged @getbetter as I’ve read they are on the same meds as I am trialling for any advice. I’m hopeful I can tolerate them :pray:t3::pray:t3:

1 Like

Good for you. I think one of the side effects is insomnia so people take in the morning. See what @GetBetter thinks. Good luck :+1:

Bump up effexor. At high doses amitriptyline is a weight magnet.