JayCS’s Fibro Blog

Freedom, a second opinion is great. Just the question who you think is “righter” in the end, the first or the 2nd…

And now Stiff Person’s Syndrome after all?!?
Last May you’d said here that the 1st opinion was that the neurological exam was not in favour of SPS. Is taking the klonopin meant to “diagnose”, if it helps then it is SPS, and a sort of shot in the dark as well?

Klonopin’ = clonazepam, a benzo. Ouch…
When taken for seizures max. is 20mg & panic max. 4mg a day, So 3x2mg=6mg is not necessarily that high. Except that taking these meds at all is a high risk of side effects. BTW wikipedia says diazepam is the more commonly used benzodiazepin for SPS.
As they relax the muscles by increasing GABA I still wonder like I’d already once asked you, if taking GABA itself might not be a risk-free way of trying to keep the meds down. Especially as you say you’re med sensitive (like me…). That’s exactly how I use it: To relax the muscles, which decreases pain and stiffnes… So really, I’d experiment with quickly increasing doses of GABA (again: the amino acid gamma-Aminobutyric acid). Some docs still believe that this is can’t cross into the brain, altho my experience and recent research shows it is.
Next in line after the benzo has had to be increased to a point where the side effecds outweigh the main effects might be baclofen, again a GABA-derivative (see my post on GABA-derivatives.)

Aside from the direct effects the interactions between these two may also be an increased problem. I spose it’ll be hard to distinguish what’s from what if you’re increasing the clonazepam plus adding topiramate.

Essentially of course you’re the one who’s got to decide if the main vs. side effects and risks are worth taking (not your doc - he’s just guessing and there’s hardly any real medical evidence to go by for SPS)…

Reflex scales. The one your doc used is the “DTR (deep tendon reflex) scale”. Since 5 there means clonus, rhythmically regular contractions, 4 would be the highest level apart from that. 2 is normal, 0 is no reflex (bad). So your reflexes are “too good”…