Small dose of Nortriptyline totally cured year-long PCS systems
 

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.

Hope Norty works for you....stopped working for me after a few weeks...
 

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

good news
 

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

still feeling okay
 

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 Neuro tried Periactin, Horrible stuff
 

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.

Question about PCS
 

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.

Thanks
 

Thanks Mark. I'm getting better at making connections between what I put into my body and what happens to it. I'll let my doctor know about how Nortriptyline might be affecting me.

It's a balancing act: do I try to make myself go to the bathroom or risk another headache in the process :)

Start eating a diet higher in fiber. Get a bowl of chili w/ beans. It works for me. Plus, increase your water intake.

Years ago, I had chronic constipation due to a paralytic ileum and needed a softener/spasmodic combined laxative for about 6 months. It helped things run smoother.

Thanks. I'll take in more water and try to get some chili w/beans. Sounds pretty good right now as another winter storm has come upon us.

I should probably avoid caffeine but I drink coffee which probably doesn't help my situation. Maybe I can switch to decaf for awhile.

About 5 years ago I had an Ileum issue too where they said a part of it expanded kind of like a balloon. They found out because I ended up in the ER needing a - are you ready? - the big E. Talk about panic, but I survived.

About 4 years of IBS (irritable bowel syndrome) followed but things somehow seemed to work themselves out. In the meantime I learned all the relief tricks like home enema kits (on Amazon), suppositories, and related things like Miralax, etc.

I hope to never be in a real jam again (no pun intended).

My paralytic ileum was due to a TOS cervical problem. Once the cervical issues were resolved, the system started working. I probably lost 3 or 4 pounds that first day after my PT got the ileocecal valve to release. I had it so long before treatment that the intestines were distended due to weak muscles and bloating and I needed the spasmotic laxative to exercise the muscles back into shape.

It can be surprising to see how many systems can be messed up by poor nerves exiting the spine.

That really is remarkable. I just looked up TOS (Thoracic Outlet Syndrome).

I'm glad someone finally made the connection between that and your paralytic ileum issue. Similar to PCS I suspect it was no easy road.

I'm impressed that you have a good command of the knowledge behind the ailments you have encountered and the treatments for them. I need to use your example and start to understand the treatments I am getting into and if/how/why they work.

As I approach the beginning of my cervicogenic PT I'll be reading more to understand its principles and effectiveness.

I've come a long way though these past few weeks as just reading a few web pages would have been too much for me. Not sure if its the Occipital Nerve Block a from few weeks ago or the Nortriptyline.

I find it is important to understand what happens to my body because up until 2007, I paid for all of my medical care, in either premiums or co-pays or out of pocket. I did work that could be abusive to my body so I needed to know how to minimize my medical costs and stay working.

Doctors usually struggle to think out of the box so it can help if they are given a nudge. I've had Standford Med School docs who are also professors who were baffled so I found someone who could think outside the box.

I have a number of symptoms that are caused by spine issues, TOS, gastric issues, esophageal reflux, tingling hands and forearms, and more. Treating the cause was a lot better than treating the symptom.

One doc wanted to schedule me for emergency carpal tunnel surgery until I told him how I had does some things that caused a substantial improvement since I first scheduled the appointment 6 weeks prior. He decided it was worth waiting and see if my improvement continued. 25 years later, I have still been able to avoid surgery. I need to be disciplined with how I use my hands but it beats surgery.

I can understand how saving money can be a big incentive in doing research. It reminds me of one of Malcolm Gladwell's books where he says many things come down to incentives. I don't remember the specifics exactly but I'm pretty sure he mentions money as one of them.

"Treating the cause was a lot better than treating the symptom."

I certainly agree with this. Right now my concern is because I think Nortriptyline is working I might prolong my PCS healing time by not recognizing things that aggravate my condition.

It's confusing. Could be ON Block or Nortip - guess I need to be vigilante and do things in moderation.

I'm glad you were able to avoid surgery. This sounds a great example of how someone can improve their own situation by doing their own research.

By the way, quick question: Do you have any advice on how people can determine when and how to come of a med like Nortriptyline? If it's working over time should I give it awhile then slowly reduce the dosage and keep an eye out for symptoms?

It's not going to cause healing but it can reduce some symptoms (insomnia, headaches, depression) so your brain can be under less stress and heal.

I would think that coming off, you would want to step down. A reduced dose for a week or more to see if the reduced dose allows any symptoms to return.

That's interesting. Thanks. Getting my brain under less stress sounds pretty good.

I certainly feel better after so long. I'll keep the Nortrip steady for awhile and at some time reduce the dose. That sounds like a good way to go - just try it for a week and see how I feel.

I appreciate your help. Thanks.