Sunday, September 13, 2009

Nortriptyline, Butterbur, Feverfew, oh my.

Old info below. Seriously, for better information go to: http://itsonlymeitsnotmymind.blogspot.com/2012/03/how-not-to-die-and-other-useful.html

Just a quick note about herbs and meds.

A few days ago I started taking Nortryptiline, prescribed by the doctor at the pain management clinic. The first night, I had a ton of trouble getting to sleep. Odd! The med was supposed to make me drowsy, but it was sending me beyond restless to hyper. I tossed and turned, feeling jangled and agitated. After a while I slept shallowly, then woke, slept and had agitated dreams, woke, slept.

I stuck with the medicine, thinking this might just be an initial effect that would wear off. It's been five days now. Still getting less sleep, and more restless sleep, than before. On the other hand, I've also had less pain and more energy during the day. Not pain free, not normal energy. A slight but noticeable improvement. Will the sleep thing settle down? Should I go up to double the dose the second week, as scheduled? I'll be calling the doctor tomorrow to ask.

Meanwhile, a couple of days after I started the Nortriptyline, my family doctor said it would be fine for me to take too the herbs and supplements that the pediatric neurologist prescribed for Hazel. So I'm taking Feverfew, Butterbur, B2 and Magnesium as well as D and Calcium Citrate. Maybe some of my improvement is due to those supplements. It would be nice if I could get off the tricyclic stuff and use just the herbs and vites. However, it's unlikely that these slower-acting measures would already be causing noticeable improvement. On the other hand, Hazel, who is taking the supplements but not the Nortriptyline, has been complaining less often of severe pain, has been able to write and do computer programming, and has had improved appetite.

For the benefit of other ME/CFS/Fibro sufferers: Your doctors might not be aware that we tend to have high sensitivity to medicines. Always start with the lowest possible dose. Tricyclic antidepressants have been known to help some ME/CFS/Fibro patients fight the pain and insomnia. If your doctor prescribes and you decide to try, just remember, you probably will not need or tolerate the higher doses that would be prescribed for depression patients.

Feverfew and Butterbur are herbs that have been tested---so well tested that even a Kaiser Permanente doctor is allowed to suggest them---and proven helpful for sufferers of migraine and chronic headache. The hope is that these will reduce inflammation associated with ME. Depending on the length of time you've been in chronic pain, it may take a couple of months or more for the effects to be noticeable, as your brain has to lay down some new neural pathways and let some old pain-route ones close. Or at least that's what the pediatric neurologist told us.

Hang in there. That's what we're doing. And hey, drop me a comment and let me know you're reading, as Hegge, a fellow ME fighter from Sweden, did.

Edited a couple years later to add: I got off the Nortriptyline after it became clear that I had "an atypical reaction" to it.  I think my reaction may have been typical for people who have ME and not depression. I won't be trying any more psych meds. I'll try to post soon about the things that have helped, the things that haven't, and what I might consider trying next. ~ Creek, 24 Feb 2012

E2A: I've written that promised update. Please check it out here. Thanks! ~ Creek, 12 March 2012

5 comments:

  1. Have you tried taking the Noritriptyline in the morning instead? I'm the same way with codeine, it makes most ppl drowsy but it keeps me up.

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  2. Thanks, perpetualspiral. I was wondering if that were the case. I'll check with the doctor and maybe try the time shift. I'll keep y'all posted.

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  3. Just checking this works first

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  4. Ok what I wanted to say was that Nortriptilyn is having the same effect on me too, totally hyper. I also take it for Fybro and Chronic Headaches/face pain and my blood pressure has shot up and I feel as though I am on speed and not in a good way! LOL.

    One word of caution I have read on some sites that taking green herbs can make fybro worse due to the syllic acid content in them.

    Good luck to all who suffer with this painful condition. I will now go and jitter the night away. Personally I had less side effects with Amitriptilyn and that is supposed to give you more!

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  5. My data sheet for Nortriptyline says that you should seek help immediately for hyperactivity.

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