Neurontin Withdrawl.. Was it helping or not? (Part 1)

In this post, I share ongoing experiences with ceasing to take gabapentin. Hopefully this information is helpful to others in my situation.

I had a two week vacation this year and decided, partially by accident, to stop taking gabapentin (Neurontin). I have been taking it for years for nerve pain and muscle spasm associated with syringomyelia. I knew coming off gabapentin would be disruptive to my life. It is an anti-seizure drug which can cause seizures if you discontinue it too quickly--even if you don't have epilepsy. At the dose I was taking this wasn't a big risk, but any time I've forgotten to take it I definitely get crabby and my muscles start tensing up.

Why Did I stop taking Neurontin

I'm not sure if it was helping anymore. When I first started taking it (300mg 3x/day), it helped considerably with muscle tightness and nerve pain. I could concentrate better because of the pain reduction. It is one of those drugs you get used to, though. After taking it for a few years, I wasn't sure if it was still helping, of if it just made me feel normal, and the withdrawals sucked.

I was concerned about side effects. I can always use better concentration and short term memory. I wanted to see if how my cognitive function fared without gabapentin. I also have other symptoms I wanted rule out as being caused by gabapentin. This is tricky as spinal cord disease pretty much causes symptoms all over (everything is connected to it). I wondered if things like irregular heartbeat, chest pain, rashes, mood swings, etc. were at all caused by the drug.

I am sick of the mood swings. Gabapentin really affects my mood. When it is time to take the next dose I'm often an asshole, despite my best efforts to be nice. Which is worse, the mood swings caused by taking gabapentin, or those caused by chronic and varying pain. We shall see.

How did I gently adjust to zero dosage?
I used lorazepam and occasional dexamethasone for a week or so. The hard part was after ceasing all of it.

How is it going so far?
It has been about three weeks without any gabapentin. Now that I'm taking nothing but vitamins and ibuprofen, I have to say it is pretty rough. Considering I usually feel like crap this is not a big adjustment, but some things are worse.
My mood is better at times, and worse at times. Yesterday I was not nice because I was miserable. Besides that I feel like my mood has been more stable. Less "4 pm asshole effect".
Muscle tightness is a bitch now. I thought it was bad before but my sholders and neck are so tight it is hard to turn my head.

What is next?
I'm going to try and hang tough for another month and a half, at which point I may try a lower dosage of gabapentin, or maybe some of the other related drugs such as Keppra (Levetiracetam). Meanwhile, I'll go for walks 3 times a day, and try to stretch and meditate. Leave a comment with any other good tips.

Research Tackles Scar Tissue Formation in Spinal Cord Injuries

Today on Slashdot there is a story about some research that has found a way to mitigate spinal cord scar tissue formation if not actually remove it after it has formed. The approach is to use a stabilized enzyme that helps remove the scar tissue. The Reuters story also mentions that this is but one small piece of the complicated puzzle which is trying to repair spinal cord injury. Many other advances have to happen for repair to be viable, but this discovery is a step in the right direction.

Great article on cord tethering...

The term "tethered cord" is overloaded with two meanings. This is article about spinal cords which have scar tissue (or adhesive arachnoiditis) attaching them to the dura at any level, not about the controversial "occult tight filum terminale" tethered cord.

This article, Untethering the Invisible Knot, follows a group of patients with varying degrees of partial paralysis as they try cord detethering sugery to try to preserve or restore neurologic function.

What I like about this article is the stories of strong people who are living with spinal cord injuries (SCI). I also like the realistic reports of surgical outcomes. I feel like most neurosurgeons have a excessively optimistic view of their outcomes, which is reflected in the very positive statistics they report. When you talk to patients, you get a different view of surgical outcomes.

I believe any intradural spine surgery is very risky, and that the scarring and inflammation caused by the surgery often negate any initially positive results.

If I may get on the soapbox for a moment, I'd like to urge neurosurgeons to be more scientific about their outcomes. Having a neutral third party doing pre- and post-surgical assessments would yield a more accurate picture of true patient outcomes. I know this is easier said than done but I've found the current set of outcome data presented by neurosurgeons to be, at times, significantly optimistic.

Chiari and Syringomyelia Handbook

The Chiari and Syringomyelia Foundation recently posted a very informative book on Chiari Malformation (CM) and Syringomyelia (SM). It is over 40 pages of writing by the best and brightest physicians on the subject. It includes pictures, and is a free download, or you can buy a printed copy for cheap. Thanks to Dr. Batzdorf and others who put this book together.

Chiari and Syringomyelia Handbook.

Small Syrinx, Big Pain, and Faulty Reasoning

Thanks for all your comments to my original post about small syrinxes (syringes) (from 2006).

I noticed that this post gets more comments than any other. Allow me to comment further:

We are in the dark ages of treatment for syringomyelia. There is a lack of education for physicians on what syringomyelia does to a person. The knowledge that is out there is flawed. The biggest problem with it is that physicians (especially neurologists, it seems) focus on the following faulty logic:

There exists patients who have a large syrinx and no symptoms.
Therefore a small syrinx does not cause symptoms.

This is simply incorrect deductive reasoning. It is like saying "there exists a woman who wears no shoes, therefore, all women don't wear shoes".

This pervasive knowledge that a small syrinx cannot cause symptoms is patently absurd. Take my example. I had dermatomal numbness in my pinky and ring finger. First we tried to rule everything else out. MS, vitamin deficiency, carpal/cubital tunnel syndrome. After all that, and a number of dismissals by my GP and neurologist, I insisted on a cervical MRI. My GP chided me for wasting money and perscribed an antidepressant (which never did help). Guess what the MRI showed; a syrinx at C7--the exact dermatome where my first symptoms occurred.

For those of you who have left comments on my original post with similar stories, here are a couple of tips for you:

- See a pain specialist if your other doctors aren't responsive to your needs.

- Shop around for a good primary physician or neurologist (good luck) who will listen to you.

- Try walking every day. Nothing strenuous--but get a pedometer and walk 2 miles every day if you can tolerate it.

- Avoid straining or heavy lifting. 15 lbs is a good limit for anyone with a symptomatic syrinx.

- Get involved--channel your pain into helping all of us who are afflicted with this painful condition and are getting poor medical care.

Also, see my post about pain medication I've tried for syringomyelia.

There are two parts to the posting. Consider printing them out and taking them to your doctor to discuss each drug. Neurontin is the #1 treatment for nerve pain from a symptomatic syrinx--but I've taken it for a couple of years now and it has some negatives. I don't think constant therapy with narcotics helps--and it may actually hurt (according to some of the brightest docs, e.g. Dr. Barth Green IIRC). They make you weak, depressed--that's the last thing we need. Episodic treatment is ok though. Sometimes you just need a break from intense pain.

The most effective drug for me has been dexamethasone, a potent steroid I first tried when I had detethering surgery (that drug seems to have helped more than the surgery). Unfortunately, this is not a drug you can take continually. I find it useful to treat occasional flare ups, but you may need something else to help you sleep--or you'll end up staring at the ceiling all night.

I look forward to hearing more comments from you. Remember: Positive Mental Attitude (PMA). ;-)

Pain Exhibit

A collection of art expressing pain.

Expressing feelings of chronic pain can be difficult. If one were to just verbalize their feelings of chronic pain, it would no doubt sound like incessant complaining. Most friends and family would have a hard time dealing with such behavior. Instead, most people with chronic pain try to put on a happy face, and it works: Most people with chronic pain look perfectly normal. They are trying to fit in and live their lives, even though they may sometimes wish they were dead.

Pain treatments can improve quality of life for chronic pain sufferers, but getting the right amount of treatment is very difficult. Many patients do not want to constantly complain to their doctor in fear of being seen as lazy or just drug-seeking. Prescription drug abusers have created a stigma to seeking pain treatment. Personal pride and reluctance to using drugs are also barriers to treatment.

Because of these things, suffering with chronic pain is very frustrating. You're dammed if you talk about it, you're dammed if you don't. Verbalization of chronic pain just doesn't work.

Expressing Pain Through Art

A friend sent me a link to the Pain Exhibit, which seeks a non-verbal way to express chronic pain:

The PAIN Exhibit is an educational, visual arts exhibit from artists with chronic pain with their art expressing some facet of the pain experience. The mission of the PAIN Exhibit is to educate healthcare providers and the public about chronic pain through art; and to give voice to the many who suffer in abject silence.

Very cool.

How to Add CSF Fundraising Button to your site/blog.

One easy way to help raise funds for Chiari and Syringomyelia research is to place this fund raising button on your website or blog.

All you have to do is post this HTML text in your site where you'd like the button to appear:

<a href="http://www.csfinfo.org/donation.php">
<img src="http://www.csfinfo.org/images/csf-button.gif"/></a>

If you have a blog here on blogger.com, follow these directions:

1. Log in and click on the Layout tab of your blog's dashboard.
2. Click Add a Page Element where you want to add the button.
3. Choose the HTML/Javascript option.
4. Copy and paste the above HTML into the content field and save it.

Any questions?