Treatment progress & questions

So an update: I’ve now been on propranolol for 8 weeks, the last 4 of which have been at 120mg ER. About 2-3 days after jumping from 80-120mg, I improved 50% pretty much overnight. Most of my symptoms reduced in intensity by about half. This has been enough progress to be able to work long hours from home and also to head into the office 2-3 days a week, which I’ve been doing.

Since that point, I feel like I’ve plateaued at the 50% over the last 4 weeks. I still have a lot of visual symptoms, still have positional dizziness and still have stronger 24/7 symptoms than my baseline. The symptoms are not strong enough to prevent me from living semi-normally, but I’m still very restricted in my activities - no TV, no restaurants unless they’re very quiet and not busy, no gym yet, etc.

Wanting to get everyone’s thoughts on the above. What should be my next steps? Dose increase? Watch and wait? What did progress look like at various points in time for you all?

watch and wait – you’re early. this disease is a long-haul. discuss at your next MD appointment

I actually had an appt yesterday. Doc said I should’ve gotten the full benefit already from my propranolol and said either bump to 160mg ER or add a second agent (nortriptyline). I opted to try the 160mg ER since I’ve not had major issues with propranolol.

Why specifically do you recommend watching & waiting? Is it because the pattern is usually that people get to ~50% quickly and then it takes time no matter what med/dose?

if your doctor said to bump, by all means bump, but people tend to get impatient with this disease and start getting anxious when their therapies don’t fully kick in for sometimes as long as 4-6 months.

personally, i did achieve 50% pretty quickly…probably within 3-4 months of starting my medication. I’m at 80% now, roughly a year after starting medication and getting to my current dose. Of course, I have better coping mechanisms now and rescue medications that work too so that 80% is probably functionally a lot higher, but its a long haul for sure.

I expect to deal with it in one way or another for the rest of my life, but feel confident in the tools available and the way that migraine science is advancing (we just got CGRPs not even 2 years ago) and more drugs are coming down the pipeline.

For me at this point its like any other annoying health problem, like arthritis or back pain, and not a full-blown disability like it was for me before medication.

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That’s good to hear. Do you still have any 24/7 symptoms?

In my case, I’ve had this for 10 years, so it’s already been a “long haul” for me. I’ve been dealing with it for that amount of time, so I’m not expecting 100%, just hoping to get back to my baseline (90%) within 6 months. Compared to the first bout, this one is more intense and also taking longer to subside. It’s encouraging that for many people, the therapies don’t fully kick in for a few months. I’ll bump to 160 mg, both to see whether I can tolerate that much propranolol (lol) as well as to see whether it starts to make a significant dent at that dose. I seem to remember reading around this site that 160-200mg is the dose a lot of people need.

What rescue medications work for you?

I don’t really have any 24/7 symptoms that aren’t psychiatric in some ways. For one, this disease has given me really bad depression which I’m still working with and 2.) certain anxieties about the future. Therapy helps with this (also my preventative is an antidepressant with a known high efficacy rate for psychiatric problems). For the longest time, my biggest issue was derealization/depersonalization but I don’t really notice it or worry bout it anymore. If you’re not thinking about it, its not there right? And thats how it is most of the time.

This disease has inertia – think of it like a really really heavy rock that you have to push. Once you get it to a good place, it tends to stick around there, but when you’re in a bad place, it takes a lot of pushing and lot of effort and time to get where you want to be. I think having an understanding of that, that you’re not going to have perfect days, is critical to getting to a better place. The fear of the disease is part of the disease itself, and they feed eachother. The more you fear the dizziness, the more dizzy you feel.

As for rescue medication, mine are clonazepam and ubrevly. Normally I take one clonazepam a day with my 150mg of venlafaxine and they work together as a preventative. If I get dizzy, I have the option of taking another clonazepam. If that still doesn’t work, I take ubrevly as well and the combination is normally enough to knock it out or at least keep me functioning so that I can work, do whatever else (or put me to sleep, which for me, is the ultimate abortive.) As soon as I fall asleep and wakeup again, its like a migraine reset.

Its all about patience and understanding that you’re going to be okay. Part of the anxiety and the feelings of doom surrounding vestibular migraine, is a part of the vestibular migraine itself. You realize that after you get out of a chronic cycle. The thoughts you have when you’re dizzy are warped and not at all like yourself when you’re healthy. Recognize that. The disease is a demon that wants to keep you in its clutches and fear is the number one way to do that.

Start by letting go of your fear and continue to have patience. Life is long; waiting it out for a few months to get treatment to really stick isn’t going to hurt you. You’ll be thankful for it in the long run.

I would watch and wait. My medicine also gave me a quick relief at the beginning and later I stagnated a little bit. But again I improved after 7-8 months. I am never 100%; however, I can have a normal life and I am grateful for that. I have relapses (nothing too bad) and I come back to my new normal. Maybe you felt so good that you quickly came back to working long hours. You can evaluate yourself if you are tired from working too much, if you are sleeping enough, if you are exercising, if the diet is good, etc. Lots of things can be a trigger for us. In my personal opinion, doctors normally increase the dose without much evaluation. I really trust my doctor, he is great, but he is trained to treat patients increasing doses of medicine. But he accepts when I explain that I prefer to keep my current dose. Good luck!!

Update: 2.5 weeks ago, I bumped from 120 to 160 ER of propranolol as recommended by my doctor. Within 3 days, I felt further improvement, going from 50% at 120 to 60-70% on most days at 160. I can now go into the office 3 full, long days each week with only minor issues. I can meet a friend at a restaurant from time to time. Issues are still around but mild. For posterity, I’m so far having a great experience on propranolol - minimal side effects and very effective, but I’ve needed to get to 160mg to really be able to say that conclusively. It has given me 70% of my life back on its own.

After bumping the propranolol, I’ve come to realize, though, that it isn’t yet doing much for the myriad of visual symptoms I have. 24/7 shaking/shimmering vision, weird halos around objects, after-images, flashing lights, and the like, so at my neurotologist’s recommendation I went to go see a migraine specialist - Dr Joseph Safdieh in NYC - yesterday. He recommended adding in venlafaxine for these types of symptoms, and said that in his view lots of people find it very effective for vestibular migraine at 75mg, with some finding it works even at 37.5mg. I figured, what the hell, so I started the venlafaxine today, but I did as Dr Hain suggests and took 1/3 of a capsule. Will keep everyone posted of my Effexor experience, and I fully expect a couple of weeks of worsened symptoms, but overall I’m very happy with my progress and the fact that propranolol got me to 60-70% already.

venlafaxine made me feel worse at first and initially after every dose change…

then stability

Recovering from vestibular migraine takes a long time. Expect 12-18 months or even longer to reach wellness of perhaps 90% or higher. That’s what i’ve gathered from personal experience and other members posts. It’s really frustrating and disheartening at times, especially when progress will not always be smooth. It’s a two steps forward, one step back scenario for me. I wish it was quicker.

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