The Scary, Bumpy Road Coming Off My Meds

By Mick78

2 min read

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.

Thank you for taking the time to read my story.

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Nancy Harris Bonk Moderator
Hi <inline-mention username="Mick78" user-id="4522883"/> Thank you for sharing your story with us. NDPH is a tough one and there is no harm (except waiting) in slowing down your taper. I hope you keep us posted on how you are doing. I did want to mention there is a new organization that was just launched called NDPHAware, that's right, all about NDPH. Here is the link so you can check it out; <a href='https://ndphaware.org/' target='_blank' rel='noopener noreferrer ugc'>https://ndphaware.org/</a>. Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
1. Cheryl Picerno Moderator
 <inline-mention username="Nancy Harris Bonk" user-id="3845796"/>, thanks for dropping the link to the NDPH site. Tom lives with that in addition to chronic migraine. I will be sure to have him check out the site. Have an awesome day. Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Nancy Harris Bonk Moderator
 <inline-mention username="Cheryl Picerno" user-id="3673232"/> Let me know what he thinks of that site! Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
1artsychick Member
Mick78 I too have NDPH and Chronic Migraine. I've had the NDPH for a very long time, so weird to call it new. It never got above a 6. The migraines are a whole different story. I've had a retractable migraine for almost 3 years. But I recently decided to go off some meds, including Keppra, I have been going off a bit slower, last one today, no bumps. Since this went smoothly I'm looking to go off more. I'll keep going until I find one that's actually working. If none of them are, why am I on them? I hope your pain is always so low you don't notice. Wendy
1. Mick78 Member
 <inline-mention username="Holly Harding" user-id="3755969"/> forgot to say the only downside is that I haven't lost the weight that I put on whilst on medication, my energy levels are still not what they used to be. But small sacrifice in the grander scheme of things.
2. Holly Harding Moderator & Contributor
 <inline-mention username="Mick78" user-id="4522883"/> That is interesting to note. The many side effects that accompany the treatments we try often are as complicated as the symptoms of migraine. For instance, we may have to decide if significant weight gain is worth a decrease in severity, but not frequency, of attacks. Or, one I have to choose often - is whether or not I want to live with nausea and vomiting every day, or take the one medication that works for me to stop it - the side effect? Extreme drowsiness to the point that I can't function. Never easy choices. The weight gain one, as you said, is most tricky, as it doesn't immediately disappear when we discontinue the medication that caused it. I gained over 50 pounds once with a migraine preventative and while it did eventually come off, it took much longer than it did to come on! Energy is another that's difficult to recalibrate. I hope these things do come back online for you as these systems start to refire on their own with time. Thanks again for these helpful insights. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
deedeevee1 Member
Mick78 It's so funny that I can't across this article. I too am currently in the process of weening off all my medications!! I've gone from 22 meds a day to just 5!! It's been incredibly rough!! But I'm surviving. I too have to ndph and it's no joke especially without any meds. I've been struggling with depression a lot recently. I'm very tired. But very glad I'm not alone in the fight!!
1. deedeevee1 Member
 <inline-mention username="Melissa Arnold" user-id="3827796"/> Yes I'm working with my primary care and my pain management doctors. We started with all the headache meds. That included topamax, nurtec, vyepti, diamoxx, cyclobenzaprine, and trazadone. Then weening off the narcotics. Then anxiety meds. I'm left with blood pressure meds, stomach meds, allergy meds, and an antidepressant. These will ween as well starting 4/12 I'm hoping. That's when I see my primary care again. It's been rough as hell but I'm pushing thru. What sucks now it's I don't have a plan besides suffering. And that's not going to work for long. I do have to say tho that there may have been some medication overuse headache mixed in because my head still hurts daily but not as intensely. Am curious to see what happens next. Ps I also quit smoking cold turkey 21 days ago. Can you say glutton for punishment?? Lol
2. Holly Harding Moderator & Contributor
 <inline-mention username="deedeevee1" user-id="3718603"/> Gracious! This is a huge undertaking and takes major dedication and commitment. I find what you are doing to be inspiring. It's easy to pile on treatment upon treatment as we seek solutions and relief until we feel like we're swimming in a soup of medications - hard to parse apart what's working and what's causing more trouble than good. So many medications come with side effects that get tangled up with our migraine symptoms. It really is tricky and difficult to manage. I applaud you for wanting to wipe your slate clean and take stock of where you are in your current state. I join you in being curious as to what will happen next. I hope you will keep us updated on your journey and do encourage you to take it slow and steady as you go. So glad you continue to be with us - I've always enjoyed hearing from you. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.