Hello all. I haven’t been on this site for ages for assorted reasons, but it was my lifeline for several difficult years so I thought I’d update in case it helps anyone. (TLDR: After 5+ years of treatment, therapies, and patience, my head is virtually normal. Keep going and have faith in your ability to recover!)
Background summary: lifelong headache issues, plus intermittent episodes of motion sickness so severe I’d be bedridden for 12+ hours (these were migraines but I didn’t know at the time). In 2015 the headaches and dizziness went chronic, meaning all the time, every day, except when I was lying down. It was awful, but I still functioned/worked. In March 2018, I was hit by a car and this exacerbated my head issues immensely; I was debilitated by them. I also had a ton of orthopedic and facial injuries.
I was finally diagnosed with chronic migraine in June 2018 and began treatment. It’s been a long road and I’ve tried many things. I honestly thought I had the worst chronic migraine/vestibular migraine that anyone had ever had. My quality of life was very low for several years and there were some very dark times, where I despaired of every being able to enjoy simple things like a walk or a movie, or anything other than sitting on my couch. But—over time things got better, amazingly so. Sometimes my progress plateaued at a pain/dizziness level that frankly sucked for months or years, and sometimes there has been slow progress and sometimes a sudden improvement that’s lasted. I had one sudden deterioration that felt like it undid a year of progress, but slowly recovered the progress (I drank a can of diet Dr Pepper before going out to the theatre one night and next morning had such a bad head! Was it the Dr Pepper?).
As of now I have no daily dizziness and the lightest of day-to-day headaches. There’s only a few things that really make it worse: 1) not enough sleep (sleep hygiene is major for me), 2) reading on my phone while walking (which I probably shouldn’t do anyway), and 3) sometimes, very overcast weather. I exercise vigorously daily, can work on a computer, go to movies (masked) and social events (also masked), concerts, have great energy, can travel on planes (and feel MUCH better than I did even before I was hit by a car) and can trust that my brain will hold up for a day full of activities. I can enjoy perfume again. It’s great! Literally amazing! I’m still a little more noise- and strobe light–sensitive than your average person, probably, but these are not onerous restrictions on my life.
I have tapered off one of my migraine drugs (topiramate) and am in the process of tapering off the other (venlafaxine—I’ve had no trouble reducing and if things continue will be off it in a couple of weeks). I still do 1) scalp Botox—my neurologist says there is room for more improvement there, my scalp muscles are still quite crunchy, and 2) magnesium infusions.
I’ll try to remember here the things I have tried and/or that I think have helped.
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Reducing activity and stimulus. I know not everyone can do this (i.e. not work). For the first two years after my accident, I wasn’t doing a lot, but I think I was still doing way too much—lots of appointments and trying to find solutions. When the pandemic arrived in 2020, all my treatment appointments stopped. One year into the pandemic, I had a huge improvement in my symptom level. If we think of migraine as a wound that is exacerbated by all stimuli, this makes sense. So: doing as little as possible, as difficult as it is, is in my view, very beneficial for healing this condition. You have to think of healing your migraine as your job, and do what that requires: nothing.
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Time. Everyone’s condition is different, but once you have a diagnosis and start treatment, patience is your friend. Even the most effective drugs don’t heal your brain instantly. Sticking with a treatment regimen that’s only partially successful is torturous (and of course adjustment when needed is good), but as with any injury, healing takes time.
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Seeing a neurologist that specializes in pain. The medical system is focused on acute illness and injury, and chronic conditions are not a priority. For pain specialists they are. It wasn’t until I began treatment at a pain clinic that I felt really understood.
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Nortryptyline. This was the first drug I tried. For me it improved my headache level, but didn’t help with the dizziness/vestibular aspect. I stayed with it about 6 months, then asked to switch to venlafaxine.
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Caffeine. I stopped caffeine since the migraine experts recommend this. I do eat chocolate (sometimes a lot!) and it doesn’t worsen things, so I don’t know. But it seems like a good idea. I tried the migraine diet and it had absolutely no effect on me. I know it helps many people but I guess not everyone has same sensitivities.
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Supplement cocktail. I take 400mg CoQ10 and 100mg riboflavin daily. I don’t know if they do anything, but this is the first thing my GP recommended and so I’ve kept it up. Used to take magnesium at night but now just to do the high-octane infusions at my neurologist.
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Venlafaxine. I have taken this drug from late 2018 on, I think, at 75mg. It worked well for me for both headache and dizziness, though I plateaued at a pretty meh symptom level for a couple of years. I’m so much better now and in the last month I’ve tapered down to 18.75mg and next week 15mg, and so on. No withdrawal symptoms. (Though you can’t stop this drug suddenly: I was VERY ILL when I ran out while travelling and stuck in a snowstorm).
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Aimovig. I took this for a couple of years, the first year-plus on a free trial. It definitely didn’t hurty but I can’t measure specifically how much it did, since I was taking top and ven at the same time. Maybe a little improvement? I stopped taking it for cost reasons and because I wanted to try Botox, as recommended by my neurologist, hoping for an improvement from the plateau I was at.
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Botox. I started this about two years ago I think and have slow but steady improvement. I’m not squeamish about needles at all and it’s so fast—about 10-15 min every three months initially, and now I think I’m at five-month intervals and will space out more in the future.
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Magnesium infusions. I started this at the same time as the Botox and again, slow but steady improvement.
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Vestibular/concussion therapy. I went to a specialist physiotherapist who is a leader in vestibular and concussion therapy (was lucky to be referred to him by my regular physiotherapist who was helping me with all my broken-bone injuries). The great thing about a vestibular/concussion therapist is that they actually believe you about your head feeling strange, dizzy, pressured, not normal, and have quantitative tests for measuring your status and also your progress. The exercises and activities that I did in his program were not necessarily fun, but the idea is to expand your boundaries and capabilities gradually. I had measurable improvement over about a three- or four-month program.
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Vision therapy. You can also do this with a vestibular therapist but mine suggested a specialist’s office. I didn’t realize the extent of my vision deficiencies before I began this therapy—and I don’t mean I needed glasses or contacts, I have an excellent optometrist for that—vision therapy measures your convergence/divergence functioning and other aspects of vision that I had no idea were malfunctioning. This is challenging therapy but also interesting, and I had a measurable improvement over about four months of weekly sessions, and I was pretty diligent about the homework.
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Acupuncture/TCM. I did about six months of weekly acupuncture with a doctor of Traditional Chinese Medicine. The focus was on headaches but they needle your whole body (TCM takes a holistic approach). I enjoyed this and virtually every time I went, I fell asleep so soundly I thought I was in my bed at home when I woke up. I had moderate improvement with acupuncture but also found it so relaxing it was worth it for that. What really surprised me was that when I explained my situation to the doctor she asked if I was open to TCM remedies and of course I said yes (at the time I would have tried literally anything). She concocted a tea that is for dizziness and to my astonishment IT HELPED QUITE A BIT.
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Tiger Balm White. Obviously this doesn’t address the root issues but for the last few years I’ve relied on the temporary pain relief that Tiger Balm gives, for my everyday low-level headaches. Plain peppermint oil is too strong and burned my skin! But Tiger Balm White is something you can reapply all day long, so long as you don’t mind your spouse calling you Peppermint Patty. I am weaning off it now since my daily headache level is so low and now only use it maybe once a week. It has a strong menthol scent that you and/or the people you live with may or may not like. Really works, though.
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Spiral hair elastics. This sounds ridiculous, but if you have long hair and put your hair up a lot, I recommend these over regular hair elastics or other implements. I was introduced to these a few months ago and my daily level of headache (which was pretty low) has improved measurably, to quite minimal. We’re talking about fine gradations here, but with headache even a 1% improvement makes a difference, right?
Things I wish I had done:
- Therapy, earlier. I spent at least a year crying every day with despairing “I just want what I had” feelings. There are therapists that specialize in chronic illness and medical trauma, who can help you through the process of grief around letting go of the person you used to be and making peace with the person you are now, a person who has a difficult health condition. I didn’t start talking to someone about this until years after my accident, and it would have helped if I had.
I will end this book shortly, but I just want to send encouragement to anyone struggling with head issues that great improvement is possible. You don’t have to try every medication or therapy, but if what you’re doing isn’t working, there are a lot of things to try. I was both patient and impatient: I never expected a medication or therapy to work instantly or even within a few months so I was patient in that respect, but I may have explored too many things at once at times, and set myself back in recovery simply by having too many appointments etc—I wanted to heal and get better, and when I was doing so little in the rest of my life, I felt motivated to try everything I could (though it’s also so tiring getting setting up with new practitioners etc).
So just keep going! If you have good doctors and just the basics of social support, you can get through this. And chances are you will regain much of the health and life you had before 
