Off-Label uses for Gabapentin-

I had stopped taking gabapentin to check pain levels, and found that there was no longer the pain I had previously.  I decided to stop for a while. No need to keep taking it if the pain was not there, or so I figured.  

A couple of weeks after stopping, I noticed that I was shaking again.  I had not really thought of it, but my shaking had diminished while I was on gabapentin.  I started it up again, and within a few days the shaking had diminished again.  My tremor had also subsided a bit.  Further research on Gabapentin revealed that so called “off label” uses for gabapentin show a reduction of spasticity in multiple sclerosis. 

As seen, spasticity relates to muscle tone problems causing tightness and inability to relax muscle groups, related to repeated damage to myelin sheaths of nerves.  So, either it is also helping the tightness of Neuralgic Amyotrophy myelin sheath damage, or I have something else going on.  

Shoulder update

It appears my physical therapy has ended for now.  I have reached Medicare’s hard cap for therapy for the year evidently.  I am lucky I suppose that most of my issues with my arm have resolved favorably.  I have real good range of motion, even if my strength is still way too low.  Gabapentin helped me reach this. If I had not started taking this, I doubt I ever would have made such improvements in range of motion.  (As of now, I have stopped taking gabapentin as pain has gone away).  Actually, D3 helped also.  Or it may have been a coincidence that shortly after starting D3 supplements, my stamina improved enough to begin some light exercise with goals of improving my strength.  Neither of these helped enough to get me to think in terms of even a short term recovery from NA.

Those sites that suggest that recovery is an easy thing for PTS/HNA are still wrong, at least as far as my case goes.  I am still weak, especially in my lower back.  My arms seem a bit stronger now, but not to any noticeable degree that would allow multiple reps of an exercise with weights.  My therapist is interested in following my case at least as much as allowing me to briefly drop by to fill him in on my progress and get new exercises.  I figure that I saved Medicare as much as $20,000 by use of PT to get use of my shoulder back. Nothing says I would not have problems in the future even with successful shoulder surgery now.

“Low-D” update

I have been taking a daily supplement of vitamin D for the last couple of weeks, and there are early indications that this 5000 IU daily supplement is helping a number of issues that I had earlier attributed to NA.

The biggest thing is the reduction of nerve/muscle fatigue.  During my regular physical therapy sessions, I had been asked to exercise using an arm exercise style “bike”.   This is on a machine that has an arm crank that you turn using different settings to achieve goals of reconditioning your upper arms and shoulders.  While initially doing this exercise prior to my taking the D3, I had trouble turning this for more than a couple of minutes with very little to no resistance.  As the Borg would have said, “Resistance was futile.”  A couple of times I had to stop before reaching the preset goal of only ten minutes, and it felt extremely hard to go past 5 minutes.

Now since taking D3, the last few times I have had no sensation of fatigue in the early going, and this is with the settings now on what they call “constant work.”  This setting really is weird in that if you maintain a certain speed you do not really feel the resistance. If you go too slowly, the resistance sets in.  But the key is that you have to go faster. Before the addition of vitamin D supplement, when I finished the 10 minutes, I could usually end up around 1.0-1.1 miles on a good day and usually in the .9-1.0 mile range, with no resistance set.  Since the addition of vitamin D, I have been regularly hitting 1.3-1.4 with a high of 1.5 miles using resistance setting as constant work.  And at the end of 10 minutes, I now feel as if I could go on for a longer time.  It is true that I feel like my muscles are getting tired during this, but I can tell that they recover while still exercising and the strength is not negatively impacted.  This has made a real difference in my physical therapy.

My therapists had been concentrating on having me do stretching exercises and including the exercise bike if my arms would tolerate it.  Now my therapy is being geared to a more active use of my arms.  Instead of passive stretching, I am actively using my arms within my achievable range of motion with a ling term goal of increasing strength.  This is closer to what my arms would be doing in the real world.

A few days ago, I also tried to do a pushup.  I was not successful.  My shoulder still has too much pain with certain actions.  But my left leg feels stronger at my hip, and my right leg just above my ankle is much stronger when driving around town.  That had been getting worse and I had been getting a bit more worried that my ongoing weakness would impact my ability to do necessary driving; like to doctors for me and my significant other, grocery shopping, etc.

"Could it be low-D? " (Vitamin D3 that is. . .)

Long time readers will remember how I have often wondered if my weakness, tremors and all other weirdness that did not quite all jive with my understanding of HNA were really a part of that illness or some other odd thing a bunch of doctors may have missed. . .  Well, it may well be something the doctors missed that was caught by my Physicians’ Assistant.

In a routine (yeah, like a $2,000.00 test can be routine) MRI of my neck looking for source of arm pain, in an aside, the pathologist said it looked like I might have a small lesion on my parathyroid.  Hmm. On my parathyroid?  Yes.  Well, my thyroid recently came up with a nodule that is benign and thyroid function was normal.  So, my PA ordered a test of parathyroid which was off the charts high for PTH, but showed normal for calcium.  Before the lab had a chance to get rid of the rest of my sample, he ordered a vitamin D test, which showed extremely low vitamin D.  What does this mean?

Well, the parathyroid regulates calcium and phosphates and is linked to vitamin D levels.  I am lucky that my case of hyperparathyroidism seems (so far anyway) to have been caused by low vitamin D. If this is true, I should be able to reverse it with additional supplements of vitamin D.  How does this relate to my weirdness of tremor, weakness and muscle fatigue?  Evidently, low vitamin D not only can cause  secondary hyperparathyroidism, but it also contributes to muscle weakness, tremor, fatigue and even in adults some risk of malformed bones- maybe like what is happening to my pinky of right hand.  The cause of D deficiency varies, but leading culprit is long term vegetarian diets and lack of sun exposure.   If you are worried about sun, use blockers. If you do not eat much red meat or eat other things that have no D3, use a supplement.

I will let you know if the supplement works.

Updated- Yes, the vitamin D supplement has done its thing.  My PTH is now in the normal range, and this is also true for vitamin D levels.  Overall I feel a bit better, but no where near anything approaching normal.  It is one less thing to worry about though. . .

To gabapentin or not, that is the question. . .

Gabapentin, aka Neurontin, was developed to treat epilepsy and currently is being used to treat certain types of neuropathic pain.  It is the neuropathic pain that interest me, since I have had ongoing aching pain in my right arm since the most recent attack of NA last summer.  My doctor suggested that Ultram or others like that may be beneficial, but I have tried Ultram and Ultracet (Ultram and acetaminophen mix) previously and they have no impact on pain ongoing and usually cause me to have sleep disturbances on top of being ineffective.  Gabapentin seems to keep me pain free for the most part through the day.

I say ‘for the most part’ because I am taking the lowest dose for now of 300 mg per day. The recommended dose for me was 900 mg per day, with a ramp up to that dosage over nine days.  Note that if you take this drug long term, discontinuing dose should be done equally as slow over time.  I find that I get relief with the one a day, but it still allows spikes at this low dosage.  For my case, I want to know the thing causing pain is still there.  I know some may still feel spikes at the higher dosages.  As the car ads say, your mileage may vary.

For me, I am in less pain.  I am sleeping better.  My physical therapy is easier to take because I do not have to fight against the nerve pain to stretch my arm, thus regaining range of motion.

You really want to be careful with this drug though.  Some may not have any relief.  Some may find that it alters mood particularly at higher dosages.  Keep track of any changes you experience and keep your doctor informed.  Here is more info describing gabapentin and potential side effects.

Reinventing the wheel – Back to step one of diagnosis?

Regular readers should remember my history.  Actually, it is the same as most of my fellow NA/HNA/PTS (call it what you will) sufferers.  It takes forever sometimes to get a diagnosis of this kind nailed down.  I have had countless tests over the years that seem to suggest a diagnosis of Neuralgic Amyotrophy, and some doctors have agreed it is probably the hereditary version.  That is the diagnosis I have had since 2007 after my winging scapula, and it has been suggested that the prior problem with my right hand was an earlier flare of the same thing.  I have also determined on my own, that I have had a number of previous possible flares dating back to around age 12.  Fast forward to today.

Well, actually starting the end of last summer to be precise. . . I had a few weeks of pain very similar to prior episodes.  One might think that by now, I would be a pretty good judge of how this manifests itself.  But each doctor seems to have to reinvent the diagnosis.  I have told my current and still relatively new doctor about this possible flare up.  I have given him information about the disorder, namely the St. Radboud pamphlet referenced in my links section. My current arm pain resulted in a bit of a loss of range of motion since the episodes of pain lasted a long time, and resulted in my loss of some arm strength.  That pain is ongoing.  He has done an MRI of my shoulder to rule out orthopedic causes, and there does not seem to be an orthopedic cause for the arm pain.  Now, since I have pain after months of Physical Therapy and recurrence of arm weakness with that pain, he seems to think it could be due to problems in my thoracic spine.  I told him that I had an MRI of my neck years ago which did suggest I had some mild disc degeneration, but not at sufficient levels to cause the pain I had back then.  In a funny Déjà vu, he suggested that if the MRI rules out an orthopedic cause for my ongoing pain, that he would suggest that I see a certain doctor in town.  He mentioned the name, and it is the same doctor I had seen years ago who thought I had muscular dystrophy.  I said I was acquainted with him, and he asked how my relationship was with this doctor.  Well, it started out good, but when I called to ask him if he would see me for pain issues when I had still had better insurance, I was told he did not want to take the case.  Any reason why?  No, they just were not interested in seeing me again.  I guess I would have to see someone else if it comes to that. . .

Anyway, I guess it is OK to rule out things that may not be known, but I have a diagnosis that is of a disease for which there is no cure, and people do not generally get better. Even in types of NA that do not repeat, full recovery to prior level of function seems to be rare.  In my case, I have a form which repeats.  In those types that repeat, you have even less chance of full recovery of prior function.  And in my case I have ongoing weakness and periodic bouts of pain.  This has gone on most of my life.  Sure, look at other stuff if you have to. But the diagnosis is what it is.  There are certain aspects of this that do not change; at least not in my case.

But you still do not look sick. . .

I have posted about this link (Funny, you do not look sick- Spoon Theory) previously.

I hear this quite often, and it is true. I really do not look as bad as this can feel at times.  I find I have to keep reminding some people anyway, that just because it appears I am OK does not mean that I am totally fine.  On the contrary, I am not fine, and it really appears at this point that any recovery I may have now, or at some future speculative date, will only be a partial recovery at best. And probably will not last very long.  I hope I am wrong.

This is a common problem for many with a disease that makes one just feel worse than they may look to the untrained and some trained eyes as well.  There is an acquaintance of mine, who has spoken to others about my condition saying to the effect, “I do not get this.  He looks OK to me. What is up?”  Even my current Physical Therapist who has had a prior patient with PTS/NA and knows at least some of the limitations, had appeared to forget recently that I may not be up for any exercise right now even of a fairly low-key type.

I had to re-explain to him that my muscles do not respond at this point, to any physical “training” that other PT patients may be expected to do at this stage of treatment.  I told him that there may have only been one time in my life when my muscles really felt normal, and that at that time it all felt so good to me that I over-exercised and set my recovery back quite a bit.  I mentioned that currently my body feels extremely shaky with almost all movements.  True, there are some days it is a bit better, but overall it is way out of any normal muscle response to exertion.  All my muscles fatigue easily.  What I can do is limited by this fatigue.  They warned me my muscles may feel stiff after exercise.  I said I really doubted that since to be stiff, they would have had to do some work- beyond what the basics of my mobility currently.

I think that maybe now they get it.  I hope so anyway.  I may be the last PTS patient they see in there practice, but I am there now.   There are things I just will never be- and one main thing is, that I will never be muscular to any normal degree.   I no longer seem to be wired that way, if I ever was.