I have a feeling that a few (if not many) people on here might be able to empathise with the feeling I currently have of being at a crossroad!
I’ve been on nortriptyline for 1.5 years, and it worked well for me. Recently, after a Covid infection, I’ve had more symptoms (detailed story is in another post).
I’m very much currently at a crossroad with how I proceed. I’m circling between remaining on Notriptyline (cannot increase it) and hope I’ll improve, switch to Amitriptyline as it’s supposedly stronger (?) or try Effexor/Venlafaxine. Don’t get me wrong, I’m grateful there are options, but that doesn’t make it necessarily easier.
Whilst I’m struggling at the moment with daily living, I don’t want to take anything which might make me take steps backwards or worsen. It’s a difficult path to navigate.
I’ve heard the horror stories, and also the success stories about Effexor/Venlafaxine, but it’s hard to ignore the former.
This post isn’t necessarily looking for advice on my specific medication situation, but rather if anyone has some words of wisdom or advice for how they’ve navigated this path.
It’s certainly a difficult one, and not similar to having a broken leg, where there is a clearer path to healing. Medications affect each of us differently, and Specialists have their preferred medications.
Yes, until I had MAV I didn’t really understand the concept of a “complex illness”. And most people don’t. You naively think that you will go to the doctor, get pill X, take it for a few weeks and you are back on the road with zero symptoms.
In some way i understand how you feel. I am feeling very impatient with my recovery process and have often wondered if i should try adding another medication to the one i already take but i’ve had bad experiences with 4 of the 6 drugs i’ve tried and don’t want to feel worse again. I’m just scared of being stuck where i currently am rather than getting better. I am ALOT better than i was but still not in a position to call myself well and still not feeling as well as i did last time i was on this med. I have so many doubts of whether i will actually ever feel as well as i did last time. If the drugs would have no effect on me, i’d try it, but i’ve had several drugs make me feel much worse and i desperately don’t want to go backwards. It sucks that meds that are meant to help you can potentially make you worse. People who don’t have chronic conditions don’t understand this.
Sorry i don’t have any words of wisdom to help you but know that you aren’t alone. Is there any other medication you could try instead of effexor? Something with less potentially bad effects? There are so many treatments out there, not just medication. Vitamins, botox, anti-cgrp meds etc.
Just knowing that I’m not alone in feeling like this helps so much! Thank you!
So glad to hear that you’re feeling a lot better too. I often find it difficult to see one’s own progress, and sometimes just taking a step back and seeing how far you’ve come makes all the difference. Since I’ve been feeling worse the past three months, I can’t believe how much I was doing last year! Wish I had given myself less of a hard time back then.
I can’t increase the Notriptyline that I’m taking, so I think a medication switch is needed - Effexor was recommended to me by two neuro’s with the aim of also helping with the anxiety side I have. I was thinking about alternatives, or even trying amitriptyline. It’s just so difficult to make a decision!
If you don’t mind me asking, what medication are you currently on?
Lotte - I know the feeling well. It’s the wild, wild west out there in VM-land . . . definitely trial and error. I, too have tried several drugs that didn’t help my symptoms but had side effects I just couldn’t tolerate. It’s scary and depressing. But honestly, if the goal is to feel better you just have to take some risks. I tell myself I’ll never know if a drug will work if I don’t try it. It usually comes down to desperation for me. I don’t need to feel great all the time but I want to live a normal life. For me that means listening to my docs about trying new meds, knowing they might not work and some will have unpleasant side effects. But I keep trying. Fortunately, my current meds are keeping me stable most of the time . . . for now at least. Hang in there, Lotte. We’re all in this together.
I’m on flunarizine. I don’t know where you currently live but It’s not available in the US so it might not be an option for you. I’ve been on it before and felt great but it caused parkinsonism so my neuro took me off it. Unfortunately the VM returned and I’ve been back on flunarizine for 9 months now at a different dose schedule. It’s brought huge improvement but i’m not feeling as well as i did last time i took it. I don’t know whether to be patient snd wait longer or try adding another medication on top of this.
If nortriptaline has been working for you can you just add another med to it rather than swapping? I tried both nort and amitriptaline but both made me much worse rather than better. I’ve not heard of Ami being anymore effective than nort, only that nort is better tolerated.
There’s a new medication called Atogepant, i don’t know if this is available for you or not.
I hope you find something that gives you more relief!
I can relate to that. Once I started on meds the debilitating huge migraines stopped but all the uncomfortable symptoms remained and some new ones appeared and things morphed several times.
During that long period (years!) it was hard to determine if I was getting better or not, very confusing and disheartening.
But eventually the clouds did start to clear! (Crazy how long it took though!)
The recovery time seems to differ between each person. In the success stories i’ve seen people report massive improvement within 3 months and then others say years. It’s hatd to know when to jist wait and see or whether to try further treatments. Especially when you go through relapses and wonder if you are actually making progress or not.
@sfnative you are so incredibly kind for writing this, thank you! You’re totally right about getting back to normal (or a better “normal”) and weighing up the risks.
I’m waiting for the pharmacy to process my Venlafaxine prescription and then will be go go go. I’ll keep you posted on how I get on! Out of curiosity and only if you feel comfortable, which meds are you currently on?
Thanks James! Really reassuring to hear that your symptoms have changed/new ones appeared too, throughout the course of your recovery.
Did you have any relapses? I think one of my main concerns is that Covid has caused my symptoms to increase, and also is what triggered this all off for me!
Lotte - I’m currently on 50mg of topiramate (anti-seizure) daily, plus rizatriptan and clonazepam (another anti-seizure) as rescue meds (plus some anti-nausea meds). The side-effects of topirimate aren’t great, but they’re tolerable at 50mg (I’ve been at higher doses), Anything is better than collapsing on the street with no warning – I will titrate back up to a higher dose if necessary. I’ve tried many other drugs that just didn’t work or I couldn’t tolerate. It seems that, for whatever reason, anti-seizure meds are what keep my brain from going haywire. My neurologist has a list of meds to add to my drug cocktail if needed. I’m willing to try anything, but my situation is, at times, extreme.
I have a long history of VM, undiagnosed and misdiagnosed for many years. I was finally properly treated and, after successful drug therapy, vestibular therapy, vision therapy and lifestyle changes, I found relative stability. I was able to titrate off most meds (rescue only) and for several years led a fairly normal life as long as I was careful. But a year ago out of nowhere I had a massive relapse that threatened my ability to live independently. So now I’m all about the drugs.
The first time my brain went crazy out of control (seizure, concussion, trip to ER) my primary care physician got right in my face and said “You do whatever it takes to get this under control. Because if you don’t you will become isolated, and that’s the worst thing that can happen to you.” I’ve heeded his advice ever since. I wish we had better treatment options than trial and error, but unfortunately that’s where we are with VM. Do what you need to do, Lotte. We’re all pulling for you.
Thank you for sharing! I’m glad that you have found a preventative which works, and interesting that clonazepam is one of your rescue meds - that seems to be quite common on this forum.
Sorry to hear that you have recently had a relapse, after a period of stability. I took the time to read your “personal diary” post and all I can say is that you are very strong! I’m sure you will get back there again, as you have done before.
This advice has really resonated with me, thank you for sharing it. Partly, I think, due to that I have been moping in the sadness recently and it is easy to stop “living” life, or at least have some of that positivity.
I am also sending you a virtual hug - wherever you might be in the world!
Hi Maria! My doctor very much welcomes my opinion on what I’d like to do, which I really do appreciate. But it does make decisions that more difficult!
oh sorry Lotte! You are not alone. Here I am also wondering if I should increase my medication. I don’t know if this happens to other people, but the change of season also affects my brain. I have relapses in the Fall and Spring. I am more stable in the Summer and Winter. My brain doesn’t like change at all. Sometimes I don’t know what to do next!
You’re totally right about getting back to normal (or a better “normal”) and weighing up the risks.