The Scary, Bumpy Road Coming Off My Meds

Last updated: August 2022

I have suffered now for over 3 years without a single second pain-free. What was originally diagnosed as chronic migraine got re-classified in April of this year as New Persistent Daily Headache (NPDH). During my appointment when I was diagnosed as having NPDH I made the decision that I would try and come off my meds. I was on 1500mg twice a day of Kepra and 150mg a day of Nortriptyline.

My reasons why

My reasoning was that I was fed up with being fatigued all the time unable to enjoy life, having to wait for the alarm to go off to take my meds, and unable to even go out at night as by 9 pm I am normally wiped out. I was also fed up with weight gain (over 18 pounds) and am unable to lose it. Which, by the way, the neurologist at the migraine clinic supported.

I hoped that by coming off my meds if I could live with the pain level and get some energy back into me I would trade the pain for a bit of normality of my previous life. This previous life, the life before the pain, is such a distant memory now that I cannot remember a pain-free day, hour, minute, or second.

The plan was to reduce my Kepra by 250mg every fortnight and then come off the Nortriptyline.

How the plan is going...

Well, I am now about 3 months along the road and it has been a nice smooth road just a couple of small bumps as my body adjusts to the level of meds that was until this week when I think I have hit my first big bump.

Since my last decrease, I am now on 750mg & 1000mg a day of Kepra. Normally I struggle in the morning but once up and about and at work the pain eases to a normal level. A normal level of pain what a crazy thing to say but I am sure most people who read this will understand...

However, this week and the last couple of days the pain is not moving very much. I experienced this back when I last moved my meds down however it was only for a couple of days but then was back to normal... not this time.

I won't give up

Luckily I am a very stubborn person which does help in not giving up but at the same time can be a hindrance. I am due to drop another 250mg next week but am unsure whether to pause the drop for a week or to carry on. My head says one thing and, yes, my head says another.

Ready for this road...

I am determined to carry on along the bumpy road but I might have to take my foot off the gas and slow down as I am sure it's going to get bumpier and bumpier the further down the road that I get.

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