Had another neuro appointment

[guy123]

I told him about my marijuana experience and how some weed made symptoms much better, but others made it much, much worse. He said it's not something he would recommend for long term treatment anyway due to other side effects like short term memory issues, etc. (side note: it's funny how docs will prescribe neuroleptics which have side effects of TARDIVE DYSKENESIA, but they don't like marijuana because of short term memory issues? Gee, I know which one of those two side effects I would rather deal with). I told him that was fine, I'm quite scared to smoke it again after it increased my tic which lasted for about a week, anyway.

 

Then I talked about cycling off of Clonidine in the event that my body becomes unresponsive. I told him most people's natural inclination would be to increase the dose, but I don't want to do that due to side effects (headaches, drowsiness, sexual issues). I asked him if it ever becomes ineffective, if I could cycle off, return to baseline, and then start up with my 0.05mg dose again. He said yes, that would work, but if Clonidine became ineffective he would rather pursue another treatment option because it would be annoying to go through the cycling, having on and off periods where the tics get worse, etc. I said ok, we'll cross that bridge when we come to it. Honestly, out of my huge list of possible tic treatments, there are about 2 other ones that I would consider trying, so I'm going to try to make Clonidine work as good as I can.

 

On that note, the last 4 days have been terrible. My tic has literally be going nuts, as bad or worse than before I started the Clonidine. This is out of the blue because for a MONTH prior it was being extremely controlled. On a severity scale from 1 to 10, with 1 being no tic at all, and 10 being constant, multiple times per minute, the last month has been an average of 4, which I was extremely happy with. The last four days have been a 7 or 8, and I am seriously getting pissed off. The last time it spiked up this badly was after I smoked the green marijuana, and that lasted for like a week. This time I haven't done anything out of the ordinary (I'm keeping excellent records of everything). I will be livid if Clonidine has stopped working after being on for only 2 months. This is also extremely uncharacteristic for my tic as before I started on medicine, it never waxed or waned, ever. It was always there. Always. Every minute of every day (unless I was having sex, then it went away). It never got worse. It never got better. The fact that now I have "good periods" and "bad periods" after starting Clonidine has piqued my curiosity and I consider it to be negative.

 

Anyway, we talked about benzos and I told him that when I take Ativan (which is very occasionally, perhaps a few times per month) I notice no change in tic severity. I told him I wanted to try Klonopin, which is the benzo specifically indicated for tics. He said if Ativan didn't do anything, then Klonopin probably wouldn't either, but he wrote me a prescription for a trial (14 pills) and he said if it worked, he would renew it for me. I took a 1/4 pill last night before bed and noticed no change in tic frequency, but I got the usually benzo relaxation. This morning there was a bit of a decrease in tics (down to a 6 on the scale), but tonight it's back up to 8.

 

I have a checkup with my GP next month. I'm going to ask for a slow strep test or whatever it's called (the 72 hour blood one). Because of my sudden onset at age 17, I don't believe my tic is genetic (no one in my family on either side has tics or TS), but must be due to exposure to something (toxins, strep, something to which I was horribly allergic, etc.). All I'm saying is genetic tics with an onset age of 17 would be such a statistical outlier that I would bet against it.

 

Alright, Latitudes.org crew, what specific tests should I ask my GP to perform to check for PANDAS? Anything besides the slow strep test?

 

Also, my neuro never wanted to perform any brain imaging or MRIs or PET scans or anything. Has anyone here had any experience with that? Was it useful? Did it help direct you to proper treatment or anything?

[faith]

guy123,

you could ask to have the aso titers checked, that is a blood test, but you should do that thru the neuro, not sure if gp will agree if they have no reason, but you could try. That is interesting about you being 17 when tics started, don't know what to make of that, but I would not be surprised at all if it was some type of allergen or antigen of some type involved. I'm still researching that end. I recommend getting the book "Brain Allergies" by William H. Phillpott, it might give you some ideas.

 

wish I could be of more help to you, but I'm just a harried mom here for my kid, as are most of us here, and so sex, drugs and rocknroll is just not our thing!

 

Faith