Don’t give up! I am virtually recovered: clear head, minimal headaches

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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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).

  8. 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.

  9. 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.

  10. Magnesium infusions. I started this at the same time as the Botox and again, slow but steady improvement.

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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:

  1. 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 :heart:

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And I should have added that I am happy to answer any questions about treatments or doctors, etc.

Forgot to mention one thing: starting in 2018 I had jaw pain that I assumed was migraine related, but when I finally saw an orofacial pain specialist (a specific kind of dentist), it turned out my jaw had been dislodged in a certain way by the car accident. I did simple exercises recommended by the orofacial pain dentist and it has it was 99% gone after a few months.

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Congratulations! So happy for you!

Where are you located? Im especially interested in where you found a good VT person. I have only found one.

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Thank you! My VT person was Paul Godlewski, in Toronto. He offers virtual care for those located elsewhere if that’s of interest. I found him kind, sensible, and very much an expert in his field. He also advocates (though does not conduct) mindfulness training for those with these conditions, which anyone with frustrating head issues can benefit from :slightly_smiling_face:

This is wonderful! I’m so glad you’ve seen improvement after so much diligence and thank you for sharing your story. I’ve also found vestibular and vision therapy immensely helpful. Regarding your convergence/divergence issues, did you notice difficulties with vision up close and at a distance (like outside on a nature walk) or both and did this improve?

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I actually didn’t notice much, which I know sounds weird. I mean my vision was “weird” due to vestibular issues, but I didn’t really know how to describe it. It was hard to judge depth of field and things like how fast a car was moving (I noticed this when trying to cross streets with traffic), and going up and down stairs made me nervous. I had the “floaty” feeling so many describe that make proprioception (judging where you are in space) difficult. Plus peripheral vs front vision felt off. I didn’t have trouble seeing, exactly, but knew that my brain was not processing visual stimuli normally.

I didn’t know about the nature of the vision deficiencies until they were measured and tested in vision therapy—definitely brain issues (b/c I’d been fully checked by my optometrist). After vision therapy I felt more stable when walking and moving around, I guess because of improvement in processing the stimuli normally, and my headaches improved too, I think because my brain/eyes were not working overtime or weirdly compensating to make up for the deficiencies as much. Hope that helps—I admit I don’t totally understand it

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Just a quick question…how long did it take you to fully recover? I’m six months into recovery and am feeling so impatient, especially on the days where i feel like i’m taking a step back instead of moving forwards. I know I just need to try and be patient but it’s hard when you’ve struggled for so many years and just want to be well again.

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Well the accident that exacerbated my head issues happened 5 years 10 months ago, and I started treatment 5 1/2 years ago. I know that is probably not what you have been hoping to hear. For me, improvement was a slow process and definitely not a straight line. I understand the desperation of feeling ill week after week (and month after month) and wanting so badly to be well again. I can only recommend persevering and changing up your treatment protocol if you’re not seeing any changes over a certain period of time, maybe six months? It can take about six months to see results from a medication, which feels so long when you’re sick every day.

A suggestion would be therapy with someone who specializes in chronic illness and medical trauma, if that is accessible to you. If you can try to view the mental/psychological side of things as separate from your physical condition, then you can move towards achieving some peace of mind with your condition even if your symptoms do not change. This can really help with patience

Thank you for taking the time to reply. To be honest, i should be thinking how lucky I am rather than thinking only of my frustration and impatience. I started feeling results from my medication after a few weeks, and six months later i’m about 50% better than I was before I started the meds. I’ve improved alot, i’m just impatient that it takes so long and i get so down on those days where i don’t feel as good as others. Given my rate of progression, I’m guessing it might be eighteen months in total for me to feel well again. I’ve been through this recovery before and it took about twelve months and I had a smooth progression without relapses. This time it’s taking longer and I have minor relapses. After fifteen years of this i’m just desperate to get my life back. I just need to learn patience. Easier said than done.

I completely understand the frustration and impatience, especially if you have been through a recovery and relapse before. It is so tough.

Without knowing your history and what you have tried: maybe consider adding something to your treatment plan (with doctor’s agreement), if you want to feel like you are doing more to expedite your recovery.

Acupuncture and TCM were surprisingly helpful for me and also an interesting experience. Or you could inquire with your doctor about adjusting your medication dosage or adding another medication. If you think vestibular therapy is an option for you, that could be something to look into.

And mindfulness meditation practice can be hugely helpful, not necessarily in healing your condition but in reorienting your thinking and mindset so that achieving peace with your current condition (even if it’s not the state you want to be in) is possible. I know you don’t want to be feeling this way, but it is possible to feel more ok about the present via mindfulness practice—it’s a good tactic for giving yourself time and space to heal. There are lots of resources available online for free in this area.

Wishing you much luck and peace in your recovery. You’ll get there :heart:

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