I haven’t posted in a few years but my vestiubular migraines or whatever this even is came on in January 2017. It started just as a leaning left and pressure on my head feeling but slowly developed into vertigo September that year and that began the worst year of my life. I began having slight to moderate vertigo 24/7. Not a full room spin more like being on a boat and the horizon shifting. I couldn’t even look at screens, at its worst i couldn’t even read books without my eyes watering trying to focus.
After seeing two neurologists. I trialed Nortriptyline, which helped but not enough. I went on Cymbalta which helped again but not enough and i finally found the right mix with Cymbalta and Topamax- 100mg. After about a year of being mostly bed ridden my brain found this mixture settling enough to where i could read again and start going on walks again and the vertigo is nearly completely gone. I’d have to struggle to notice it by staring on a point to see the slightest shift. I’d say im about 80% better and believe me from the hell i was in i’ll take it any day.
So after 3 years of this journey I’ll like to say what has helped me and what I’ve learned in no particular order.
- Sitting up. I use to roll my eyes at this but i find even now if i lay in bed and read too much its noticeable on my sense of balance
- Anxiety. Keeping your levels of anxiety down is hard due to the nature of the problem and the unknown nature of it usually but i feel it is definitely something that impacts your symptoms. I would fill out an anti anxiety cbt sheet if i got really bad that would help me switch from emotive panic to more rational thinking mode
- Boredom. This ties into two but finding yourself incapacitated for long periods of time can give you large amounts of time to dwell on suffering and sometimes without much entertainment. i’d listen to podcasts or audiobooks a lot.
- Depression. This can be the hardest one of all. It’s natural to feel depressed in the face of suffering and in many if not most of our cases we have no time frame of when we’ll get better. This is an internal battle that you can only really slowly win by being rational and seeing progress for yourself I find. Try to keep positive but i know it’s nearly impossible to be always optimistic.
- Finding your limits and challenging them. This came late for me due to the nature of my problem but I would walk the same area every day. There was a hill that was my limit. I could feel my brain strain at that point and i would turn around. That was my limit for a while. Later it wasn’t even my halfway point and I’d feel a small bit of elation every time I’d walk up that little hill. Progress wasn’t just some abstract thing it was before my eyes and under my feet.
- Remembering small improvements This ties in with the last point but it’s easy to take progress for granted and forget just how bad things were. Some times i catch myself being annoyed at a slight twinge of bad balance or off feeling and i’ll remind myself I literally could not read a book at once point. I can use a computer or watch a tv any time i want now. I never did this but maybe keep a diary of small improvements as you go.
Finally I’d like to say what I have gained from this problem. I know its an odd thing to think about.
- Extreme patience. A year bed ridden doing nothing really puts things in perspective about problems.
- Tolerance to suffering. This is similar to the first but other problems like sickness i’ve had since just don’t compare lol
- Compassion. I empathize a lot more with people who are sick and suffering now.
- Maturity. This one may sound self indulgent but when I had the problem I was somewhat young at 27 and I feel i’ve learnt a lot about myself going through this.
Anyway I hope this helps some of you. At one point I was another one of you here wondering if I’d ever get better.