New to Neurontin

[Richy31]

I've had MS for 25 years and for 20 of those years was fine.  In the last year I have had two excerbations and have suffered declining neurologic function.  My leg pain was getting worse and the tingling/numb feet were permanent.  My neurologist recently prescribed Neurontin relatively low dose.  I started 300/mg at bedtime for 7 days and then added 300/mg in the a.m.  At first, the bedtime dose knocked me out but as the days wore on I did not react as badly.  Then the daylight dose started.  The first day I slept for 5 hours (thank God it was a Holiday from work).  The second day I took off work and slept for about 3 hours.  Yesterday, I went to work and made it 1/2 day until I could bear the fogginess no more and went home.  Today, I'm a little gooney but my thought process seems better, I'm not quite as foggy and I don't feel like I must sleep.  I should add that my legs and feet are pain free!!!  Is this the normal acclimation process for this drug?

[kwarendorf]

I'm on to Plan B; added 25mg amitriptilyne to the 3600mg of gabapentin. Feet are much better, but there are some side effects, of the adult activity variety, that are going to have to be addressed!

Kyle

[Richy31]

Still on 300mg 2 x per day.  It works great but I can tell when it's wearing off.  Might have to go to 3x per day which is what my Neuro originally told me.  As an aside, I was at the podiatrist yester afternoon.  Turns out I have Morton's Neuroma in my right (bad foot).  He injected it with steroids and by this moring feels about 90% better.  Still have the tingling in the rest of the foot and the off and on tingling in my left foot.  But it is not continual, only when the gabapentin wears off.  I feel almost like a totally new person!!!

[kwarendorf]

What points in the direction of neuropathy is the lack of any consistency.

Sometimes my feet hurt as if someone has just dropped a bowling ball on them. Sometimes they burn like I have really bad athlete's foot. Sometimes it's both the bowling ball and the burning. Sometimes it's both feet, sometimes it's just one. It can happen when I'm sitting down or when I'm walking.

There is no one constant related to my foot issues.

[twopack]

Have they given you any idea what plan B would look like Kyle?

Guess I'm still wondering how sure they are that this is pure neuropathic pain.  It would be a shame if there is some bone or soft tissue damage that is being missed.  That can happen if MS is preventing the proper perception or interpretation of pain signals.  It can also happen if a particular specialty practitioner interprets symptoms with a bias toward their own area of expertise.  Probably for other reasons as well but these two sprang to mind first.

Lots of possibilities exist for foot pain and they aren't always easy to find or define.  It took two x-rays and a bone scan to locate the suspected stress fracture in my own foot.  The bone scan finally revealed TWO.  I would have never thought I had fractures.  It had been uncomfortable for weeks but was still able to walk.  I even worked my all-day-on-your-feet job as docs investigated.  The fractures couldn't heal because trauma reoccurred every time that foot pushed forward to take a step.  Use of a walking boot finally allowed it to heal.  That's just my personal example to show a possibility.

All this makes me think of Alex.  She tried lots of things to treat her painful MS spasms.  Some worked better or longer than others.  Sadly, she didn’t know she could be working toward a cure instead of settling for temporary relief.  Alex lost a lot of time before discovering particular symptoms had their root in a darker invader than MS.  She will never know how little treatment may have been enough a few years back.  Only that today’s battles are longer and harder because her counter attack was delayed - perhaps by assumptions.

I don’t really think your foot is anything that serious.  The point is:  Not everything that can be explained by MS is caused by MS.  For lots of reasons everyone forgets that - our doctors forget and so do we.

I didn’t intend to lay TMI at your personal feet, Alex.  Just figured this needed to be here for the people who read it when their search engine pulls them here but don’t stay long enough to ask pertinent questions.

[kwarendorf]

I'm now on Day 4 of 1200mg 3X/day. I've not had a significant improvement in my foot pain. The NP from my MS clinic is going to check in with me on Thursday. I think it may be time for plan B.

Kyle

[twopack]

I think gabapentin might be somewhat like baclofen regarding dose timing.  I had good symptom relief initially but didn't dare delay or miss a dose.  As you say, there was little 'carry-over' power when the relief timer got close to its final count down.  The symptoms started to return before the next dose was due.  

Now that I've taken gabapentin for a while it seems there's a bit more forgiveness about how rigid the dosing schedule needs to be.  I was even able to add-in an extra dose for a few weeks when afternoon pain made it hard to get through a work day.  The extra dose offered more relief when I needed it, then I was able to drop back to my regular dose again without problem.

As a side, I'm one of the many people who take both gabapentin AND baclofen.  I've found the combo approach gives me the best relief from spasticity and parasthesias PLUS I get better results using a lower dose of each drug.

[Richy31]

I have adjusted and am feeling great.  Since it is not time released, I can tell when it's time for the next dose however it has worked wonders!  I'm also glad I have the second script of 100/mg.  This way when my does needs to be increased I can do it slowly at my own pace and hopefully will not go through a huge adjustment.

[chefaid90]

I have been on 800mg 3x daily and no relief. I finally just took myself off of it. I dont like taking meds to begin with much less the fact that it didnt work at all. I took that for over a year and finally had enough and got off. Has anyone else had problems with it not working for them?

[twopack]

Having 100mg tabs/caps on hand will allow you to increase the dose gradually over several days or weeks if another increase becomes necessary.  I did that because I'm one of those people who take a while to adjust to dose increases.  I was afraid to take daytime doses for a while because weeks after I started the 400mg dose at bedtime I was still head bobbing before I reached the bed.  It is nice to know I can get a good nights' sleep though!

I just saw my pain management doc today (an anesthesiologist).  He says he generally only uses gabapentin in doses totaling up to 1800mg a day.  In his experience higher doses don't provide enough additional pain relief to merit the potential risks of mega doses.  He prefers to reassess a person's total pain management plan and see what needs to change.  

Unfortunately, pain isn't a stagnant problem.  It's yet another aspect of MS that renders us clueless about what each tomorrow may bring.  Just about the time we're confident pain is under control it shows up in a new form or attacks a different body part.  It's one of the reasons I maintained contact with the pain clinic even when I wasn't hurting much.  Not much is worse than waiting months for an initial assessment when you need relief NOW.

Glad the gabapentin is working for you.  May all your tomorrows be yours to enjoy.

[Richy31]

Just got a call from the Pharmacy and my Neuro group has called in a script for the 100mg!  I had asked for that on Tuesday already.  I told them I would pick it up be really...I seem to be adjusting to the 300mg and see no reason to reduce.  I know each day I'm feeling better and my legs/feet are free of pain!  

[Richy31]

Doublevison - I've been taking Avonex for 9 years.  Mr Neuro classified me as Relapsing Remitting Benign (however she hates the benign)! I had small changes in my MRI over the years but any symptoms could have been attributed to growing older.  Prior to the Avonex...nothing.  She had to convince be to start taking that!  It began with a false diagnosis of Bells Palsy.  5 years later I had Optic Neurotis.  By then MRI's were in place and it showed the lesion from the supposed Bell's attack was actually MS.  My then Neuro apologized and explained that it had actually been my first attack.  I have been blessed but when reading about the benign form it appears that most of us go an average of 19 years and then it flares up.  I made it 20!  But when it reared it's ugly head it never looked back.  They are monitoring me closley as when this hapens it usually changes form to Secondary Progressive.  Only time will tell if that is happening but 2 attacks in 7 months and the neurologic decline does not assure me.  I've always been positive and certainly don't plain to change that now.

[doublevision1]

I've been on the 3600mg max dose for a few years now.  Oddly, though gratefully, I've never had one side effect.  I titrated to the max dose fairly quickly.  I've decrerased from time to time wondering if I really need to be on a dose so high, and I always discover that I do.  It's far from complete relief, but Í do better on a high dose than not.  I've coupled this first with amitriptyline, and when the urinary retention became an ongoing problem, recently swtiched to a very similar drug, nortriptyline, with a lesser side effect profile.  I did try to wean off of it altogether, again to test if is really doing anything for me, and I noticed a major increase in my hand pain when I did, so I'm back on 50mg at night.  It occasionally causes some sleepiness, not severe, though I do stick to a nighttime dose only.  

Try not to be concerned about gabapentin's primary purpose as an anti-seizure med.  It has been used successfully off label for many sources of neuropathic pain, and docs like it due to its rlatively low side effect profile.  It's a well established tool in pain management.  

Generally fatigue as a side effect does reduce over time as your body acclimates to the new drug in your system.  If however this side effect is really disruptive in your life, you may need to titrate on a very slow basis.

On another note, it's really encouraging that your MS was so inactive for so many years.  Can I ask if and for how long you may have been taking a DMD?

[Richy31]

Thanks Sarah...that's what I'm thinking.  As good as my legs and feet feel I won't hesitate to give it time and go with the flow!

[Richy31]

I worried about the anti-seizure thing as it is.  But several medical professionals advised me that it is use so much for this type of pain.  MS or Diabetes caused.  I must admit...today is much better (4th day).  I'm going to make it through the whole day of work and I actually feel somewhat energized.  Still a bit foggy but NOTHING like the last 3 days.  I'm thinking I had to acclimate to it.

[SarahL2491]

iy took me a month to get used to it, now its great, give it time

[HVAC]

It should with time if not there is Lyrica and Trileptal. Each person responds differently to medications. I could not do Neurontin especially at that dose. My GP thought they should have started me at a lower dose than the pain clinic tried. I was also on two other anti seizures. I am doing better with pain since i went to a private pain clinic which thinks out side the box. No more anti seizures and loopiness for me.

Alex

[Richy31]

Right now the 300mg a.m. and 300mg p.m. seem to be doing the trick.  Just hoping the fogginess goes away.  Today it seems  as though it hasn't lasted as long.  I'd like to stay low dose as long as it's working which it appears to be.  I am taking the Gabapentin (generic form).  My insurance insists on generic unless otherwise noted.  I have also been on Avonex for 9 years.

[kwarendorf]

I'm fairly new to Neurontin too. my neuropathic pain is in my feet. I started at 300mg in the morning and 300mg in the evening. I had some relief but nothing significant. I moved to 600mg AM & PM. Again some relief but not enough.

We tried 1200mg AM & PM and the results were the same. This morning I got promoted to 1200mg 3x/day. This brings me to the 3600mg max. It will be a week or so until we know if it's working.

I have had no side effects from taking the generic form of the drug, gabapentin.

Kyle