Hi Friends -

I posted here a few months back asking about alternative therapies for my PCS; I had been to two neurologists and was not experiencing any relief. I had also tried chiropractor, cranial sacral therapy, accupuncture and Physical therapy, and was still plagued with constant headaches, nausea and achiness. I was at my wits end.

At that time, several folks wrote back and suggested a very lose dose (10mg) of an Elavil or Nortriptyline, which are antidepressents, but can work with the neurotransmitters in your brain after this type of injury (or something pretty close to that ...).

I scheduled an appointment with a third neurologist, who seemed to be better equipped to handle folks with PCS. He prescribed 10 mg of Nortriptyline and Celebrex. I don't know how or why, but after almost a year of constant headaches, nausea and achiness, I am feeling symptom free, OVERNIGHT. And, I haven't even taken the Celebrex yet (not covered by my insurance and quite expensive out of pocket).

So, my humble advice is to make sure you find a neuro. who really listens and understands that these symptoms are REAL. (The second neurologist's medical records indicated that he thought I was most likely suffering from and should be treated for anxiety. I think I was anxious in his office because I was queasy and didn't want to throw up on his $200 loafers...). I live in the Boston area and thought that after seeing two well respected neurologists who basically shrugged their shoulders that this was all there was. FIND SOMEONE WHO WILL LISTEN TO YOU! I am not say this treatment will work for everyone, but it is certainly worth a shot for a percentage of folks out there. I hope this helps. Those of us that have gone through this are rooting for you.

Hi,

Good luck to you! Nortriptyline was the first med my neurologist tried to get a handle on my post TBI migraines. It worked great at first, cutting my migraines by about 50%..then we tried to up the dose. Long story short.....I got no additional help from the additional dose and some disturbing side effects. I started at 25mg and ramped to 50mg.

Anyways, I'm not trying to rain on your parade. I really hope it works for you better than it did for me....but beware the effects may wear off after a few weeks. Topamax is the only thing that so far has helped my migraine headaches...but no relief from my other PCS-type symptoms.

Nate

hi

thank you for this post, if it works then it is turning on the right neurons so there is a good chance it could be permanent given the premise of plasticity



so please keep us posted

Hi Friends -- it's Goodscout reporting back. It is now March, 2009 -- 15 months since my injury and 3 months on the Nortripyline. I still have need to be careful around certain aromas that make me sick (coffee, interestingly), and I don't drink alcohol and try to get a decent night's rest. However, the Nortripylne seems to be continuing to work. it took three Neurologists to fiind this answer and so I want to make sure people have this info as a resource. Good luck to everyone out there still stuggling.

Getting the idling neurons to jump back into action has, as far as my research has found, been all about blood perfusion in the brain. The inherent plasticity of the brain can work for you if you let it. So glad you´ve found something that works!

My health plan neurologist prescribed Periactin since I was having headaches and insomnia. It is an anti-histamine that is supposed to help the brain settle down. It sure settled my brain down. It settled into a deep depression like I had never experienced before.
I stopped it after only one day.

I had also been put on Indocin (an anti-inflammatory drug) It made me nuts. I could not think straight. I could walk into a room and forget which way I just walked in. I was in Wash DC and went down into a underground Metro Station. I realized that it was for the wrong train but was so lost, I could not figure out which escalator to take back to the surface. They each came out at very distant parts of the area. It scary to have meds mess up your mind so bad.

Since then, I am very careful about "Off Label" uses of drugs.

Hi, It's my first time on this site. I was wondering how you are doing? My daughter was just prescribed this and she's been suffering from headaches since her concussion in Nov 2015. I am very worried. How long does this take to get over? Any suggestions. Any side effects from this med? Thanks.

Itoledo,

Goodscout has not been around for 6 years. Sort of a "no news is good news" concept.

Hello Itoledo,

I've had PCS for just over 10 months now and have been on Nortriptyline for a few weeks. I'm at 40mg right now and the bottle says up to 50mg max.

What I've noticed is that the pains around my head seem to be diminishing. They used to move around from place to place (except the upper right side of my head for some reason).

I still have trouble with noise and lights (turned my smartphone on in the dark while in bed - not a good idea). Also, I thought I'd watch some of the GOP debate the other night and that did me in for a day or so.

As for side effects there might be a little constipation going on, but then again maybe I'm all cramped up because of this New England weather I read that this could be temporary, though.

Has your daughter tried it yet? How is she doing?

p.s. If Mark catches this post I'd be interested to hear what he thinks about the 40mg dose. He said recently low doses can be helpful. I'm wondering if I should stay where I am or decrease.

From what little I know, Nortriptyline is a tri-cyclic antidepressant used in low doses for relief of some PCS symptoms, insomnia and headaches are the primaries.

I have never seen it benefit any other PCS symptoms other than anxiety.

Constipation is a known side-effect. Tell your doctor just so he knows.