Hi all, thought I’d post this as it may help some of the members on this forum.
As you can read on my other posts, I’ve been at a stable 90% on 112.5mg Effexor + monthly Emgality shot for 12+ months now and that’s allowed me to live my life completely normally, including solo international vacations and such. As such the last 10% wasn’t a real issue, but definitely an annoyance; the residual symptoms included: 24/7 mild floaty feeling in the head, susceptibility to visual vertigo in some situations, occasional bouts of momentary but strong dizziness, visual snow syndrome (shaky vision, photosensitivity, image burn in, aftertrails, etc).
Encouraged by my earlier progress, I asked my neurologist (Dr Adelene Jann in NYC) if I could add in a third drug I’d been interested in - lamotrigine (brand name Lamictal), and she agreed. Our reasoning was based on the plausible hypothesis that my residual symptoms were more related to perpetual cortical hyperexcitability and thalamocortical dysrhythmia than outright migraine attacks. If those terms are somewhat unfamiliar, ChatGPT was pretty good at explaining them to me and how they connect to vestibular migraine. Anyway, I started 7 weeks ago, and already by the end of Week 1 I was feeling a slight difference. Lamotrigine has to be titrated very slowly, and so I didn’t really hit a target dose (100 mg) until Week 4.
Pleased to report that it works for me really well. It has eliminated all the residual symptoms I stated earlier except for one - the visual snow. Visual snow is also partially improved. Side effects are barely noticeable - maybe some mild headaches and a some mild dizziness every time I bumped the dose lasting about a week. Since it’s been working so well, I’m continuing to ramp up and hoping to reach a dose of 200mg daily. Hoping that pushing into that range can further reduce or eliminate the visual snow entirely, but I’d still be perfectly happy with lamotrigine if it didn’t.
If you are similar to me and a) have no headaches and b) have 24/7 vestibular/”weird head”/visual symptoms, talk to your neurologist and see if lamotrigine might be worth a try for you. It’s supposed to work much better for vertigo than for headaches. Can’t speak for headaches but it has definitely worked well for vestibular stuff for me. Have had zero cognitive or any persistent side effects from it. And there’s modest evidence that it’s useful for the stuff we need it for (see links below).
As an update - this medication has been a complete godsend for me and I would recommend anyone with 24/7 non headache symptoms to try it. I had to get to 100mg per day before I felt any difference but it was very strong improvement from there on, with the 200mg per day dose really “locking things down” I felt.
please please please request your doctor to allow you to try this medication if your symptom profile includes really bizarre 24/7 visual symptoms, dizziness and this floaty terrible feeling in your head. Feel free to read my other posts to get a better idea of what my symptoms were like - I have come to strongly believe that specific symptom profiles can be roughly mapped to the parts of your brain which are acting up and then those can be targeted with one or more specific meds
you can also take the studies I linked above in this thread to your physician if you need to convince them to let you start it. Just remember to start very low and go very slow - your doctor will know how to titrate this med
Hi @nycsg , that’s really great news that you’ve found relief from the three meds, especially getting rid of residual symptoms can be very hard!
To share a bit of my experience - I was on 3 migraine preventatives too at one point and initially I thought that it was the final med that I added in (Aimovig) that was the most powerful / efficient because it was the adding in of that final med that got me back to full remission without 5-6 months.
I’m seeing things a bit differently now as I had a relapse a few years later, and started straight away back on Aimovig, but didn’t see the same improvement at all. I’ve now added in the second med and am hesitating as to maybe asking for the third to be added in.
When I added in the second one, I suddenly started making good progress - so my theory (for me at least) now is that it is the accumulation of migraine preventatives rather than each of them specifically that brought me the remission. I don’t know if that makes sense? I still believe each med has its own qualities and advantages, but I was very disappointed when Aimovig didn’t do the same at all for me on its own. It makes sense that when I added it in to Nortriptyline and Pizotifen (I’d been on them for 2 years or so), the cumulative effect of what I believe is called preventative layering in migraine medicine was remission.
Best of luck with your continued journey, and thanks so much for coming back on the forum to tell your story as it is so encouraging to read it!
Hi Lucy! Hope you can get your current flare up sorted out. I’ve definitely come to believe that multiple meds at lower doses are more effective than a single one at a high dose, since they modulate different processes in the brain, so if you know there was a combination that worked for you prior I wouldn’t hesitate to start it back up.
I will say though that the meds in my opinion should probably fall into different categories - I have one anticonvulsant, one serotonin modulator, and one CGRP inhibitor. In my case all 3 are working together well, as I explained above. I’ve also come to believe that your symptom profile can sometimes help you figure out which meds might help - for example I had a lot of visual vertigo & floaty head feelings, which venlafaxine is well known to help with, so I asked for that one. That helped a good bit but I still had visual snow, light and motion sensitivity and some residual visual vertigo that it wasn’t touching even when I stepped up the dose, so I began to search for a medication with any evidence for that remaining symptom profile, landed on lamotrigine as the first one to try, and asked for that.
as far as the Emgality (CGRP) it’s just generally known as an effective and side effect free migraine med so my doc strongly recommended that I add that in as well, which I did.
no doubt they’re all working well together, but in my case, for the symptoms which were most bothersome to me, I think the Lamotrigine is doing most of the work - it’s also about how fast I recover from migraine flare ups - it used to take weeks or months and now they’re gone in a matter of hours, when they even come on, which is very rare despite my lifestyle being the exact opposite of what doctors would recommend. As I stated my theory was that my cortex was being hyper reactive to any migraine episode/event and the reactivity wouldn’t die down quickly, so I think in that case the lamotrigine does a lot, since that’s sort of what it’s meant for
That makes a lot of sense - it’s so good you’ve found the right combination of medications to control your symptoms! I agree it’s important they should fall into different categories.