Mission Statement

This website documents one man's quest to cure his MS through determination, perseverance and a little luck.

Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.

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Below is a summary of my MS pain/medication experience and management. For those of you who have been following me, you know that pain is my most significant symptom. For the first five years of my MS progression, it was strong and increasing, which is why I was constantly increasing the medication dosage and always looking for something better. You should also know that I have had painful problems with my C-spine, independent of the MS, including a C-spine surgery in year five (and a misdiagnosed L-spine surgery in year two).

As one doctor from Stanford said, anticonvulsants have strong side effects. However, we use a cocktail of two (or more) of them, so we can get the additive benefits with less than additive side effects. Gabapentin (e.g. Neurontin or Gralise) and Pregabalin (Lyrica) are both gabapentinoids, which makes them easy to transition between. Those and Carbamazepine (Tegretol) are all anticonvulsants.

Early MS (1-2 years), increasing pain:

  • 100-300 mg Gabapentin: helped me sleep at night
  • 600 mg Gralise (gabapentin XR): Moderate help with daily and nightly pain.
  • 1200 mg Gralise + MMJ: minor to moderate pain control

Mid MS (2-4 years), horrible pain:

  • 1200 mg Gralise: minor to moderate pain control
  • 1200 mg Gralise + 250 mg Tramadol: minor to moderate pain control, opioid problems
  • 1800 mg Gralise: minor to moderate pain control
  • 1800 mg Gralise + 200 mg Tegretol XR + MMJ: moderate to good pain control
  • 1800 mg Gralise + 400 mg Tegretol XR + MMJ: moderate to good pain control
  • 1800 mg Gralise + 800 mg Tegretol XR + MMJ: moderate to good pain control
  • 1800 mg Gralise + 1100 mg Tegretol XR + MMJ: moderate to good pain control, couldn't tolerate the side effects

Post HSCT (5.5-6 years), bad pain:

  • 330 mg Lyrica ER + 800 mg Tegretol + 10 mg cannabinoids: very good pain control
  • 330 mg Lyrica ER + 900 mg Tegretol + 10 mg cannabinoids: very good pain control

Keep in mind that my pain has been dynamic throughout this experience. Every three months or so, there was a noticeable change in type, location. I attributed this to three things:

  • pharmacokinetics (how the meds are interacting with the particulars of my body, including tolerance and adaptability to the medication)
  • CNS deterioration (active MS)
  • CNS repair (post-HSCT)

Note that around year 5.5, it was suggested that I swap the Gralise for Lyrica. I took this a step further and swapped it for the brand new, Lyrica CR (extended release). During the first month, the pain was the same, or even worse, but the side effects were much less. Around month two after the switch, I started feeling noticeable lower pain.

Around month three, the pain was miraculously better. It wasn't gone, but I had tears in my eyes over how much better it was working, with much fewer side effects (I didn't feel drunk and stoned all the time). After suffering for over five years, I finally had some relief. Unfortunately, that only lasted for about 3-4 months. My fix was to add another 100 mg of Tegretol XR. Note that the Lyrica CR / Tegretol XR cocktail is so much easier to handle. Not only is the pain much less, but the side effects are much less, too. 

The side effects I do have

In the morning, I do have to juice up. I take a 330 mg Lyrica CR (one pill for 24 hours!), plus 500 mg of Tegretol ER. Then I need another 200 mg of Tegretol ER again around 3-4pm. Finally, I take a final 200 mg Tegretol ER again before bedtime, in order to sleep well. I'm pretty sharp in the mornings as the Tegretol concentration is low in my body. As the Tegretol begins building up, I start to get better pain control, but I have a small speech impairment that begins to creep in. Some of this might be due to the MS (lesion in PVM) or due to chemobrain (see earlier post), but most is due to the drugs.

There's a tightrope to walk. Of course, the body is constantly using-up or filtering the medication, so it needs to be replenished. There's an odd cycle that happens,. As the drug concentration goes up, I get better pain relief but worse disability (mostly cognitive). I should point out that the same happened with the Gralise/Lyrica cocktail, but that disability included both cognitive and physical (worse walking).

In summary, if you can afford the Lyrica CR, I would highly recommend using it over Gabapentin (or Gralise). The side-effects are fewer and the relief is better. It allows you to use a larger dose of Tegretol before you have intolerable side effects.