guy123
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Posts posted by guy123
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wow, I just found this thread in a google search for adult PANDAS.
This is what I'm trying to find some more info about now. Seems there's not much research on PANDAS much less on adult PANDAS. I was always a little OCD as a child but when I was 17 my OCD exploded and I developed a blinking tic following a bout of mono and some other things. lol you guys already know my story.
Hey sunflower, any updates?
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what are the "full supplements" you give him?
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Not all treatments have bad side effects. Just stay away from Neuroleptics and atypical neuroleptics if you're worried about side effects. Most of the other drugs have side effects that, if any, usually reduce over time and stop when you come off.
Not telling you what to do, just saying that there are some decent medications that can lessen the tics if that's something you want to consider at some point.
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Guy123,
You do crack me up!
lol. I was gonna respond with a *blush* smiley but there isn't one in the list
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^^ tetrabenazine can cause Parkinsonism. That would make me extremely hesitant to use it.
It doesn't cause Tardive Dyskenesia, tho.
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Unfortunately, most (all?) drugs that mess with dopamine have horrible side effects, such as tardive dyskenesia and parkisonsim.
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Tetrabenazine has just recently been posted about with good results. I dont know what category it falls under, but it is now FDA approved. Thanks for us who like to be informed and keep our options open!
i believe thats one of the ones in my updated list.
can you give me a link to some studies about it?
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Guy
50 views can incorporate forum guests (ie not registered members) so not everyone who reads has ability to post
also, you posted over a weekend when the forum is usually quieter as most are busy with family stuff etc
if you do a forum search on PANDAS you will find the info you need. There have also been a lot of recent threads with the info. also look at the "essential threads" sticky at the top of the board
there is no one definitive "test for PANDAS" but rather a series of diagnostic criteria
I am not a PANDAS parent so am not up to date on all the info
based on your worsening with Mono, I would suggest also looking at PITANDS, not just PANDAS
PITANDS? Never heard of that before. Off to do some research!!
Thanks!
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Bump for lurkers and new members who haven't seen this thread.
Also I have an updated version of this document that I will upload when I get back home. It has a few more fields filled out and possible some more medications. I can't remember.
I encourage everyone to study this document and bring it with you to the doctor/neuro so you have some info to discuss about drugs. So if he says "hey, let's try this neuroleptic," you can say "I don't feel comfortable with that because it messes with the QT interval and can cause Tardive Dyskenesia, see this study?" or whatever.
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I'm going to the neuro tomorrow and I'm going to mention PANDAS. I don't really have any of the symptoms, but my tics did begin following a bout with mono and a horrible sore throat. I've never had strep, however. I've been tested (throat culture) a lot, but it's never come back positive.
But in hindsight, I've always been a little OCD ever since I was a child... but it got much worse following mono.
50 views and no one knows what the test is? I thought half the people here had had it.
Anyway, I met with the neuro today for like an hour and he was the coolest doctor I've ever seen. He went over my big list of drug research with me and said it was very thorough. We basically said I'd stay on Clonidine for a while longer and then maybe try Topamax if I want. He said he had had good results with low doses of some neuroleptic (risperdol?) but I said I didn't want to go there. He was super cool about only giving me drugs that I was comfortable taking. He asked me a few times if I was sure no one in my family had Tourettes, and I said yes. He also said it was extremely weird that my symptoms began at 17.
I told him that Lorazepam had no effect on my tics, so he said that Klonipin (also a benzodiazepine) probably wouldn't, either. We talked about GABA and I told him that I had used Phenibut recreationally, and while it was awesome, it had no effect on my tics.
I asked him about PANDAS and told him how my tics and an extreme worsening of my OCD happened after I had mono (which was accompanied by a horrible sore throat). He said he had never heard of it but would do some research and get back to me.
Alright my questions for you guys:
1. How is PANDAS tested for?
2. I think I remember reading somewhere that PANDAS has to be treated early on (ie. not 10 years later). Is this the case? Since I've had these symptoms for 10 years, if it was PANDAS would it be untreatable in my case?
3. What antibiotics worked for you (or your child)? Pleae give the name, dose, duration, and weight of the child.
4. What antibiotics didn't work for you?
5. Does anyone have a good article on PANDAS I could email to my doctor?
Thanks.
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Scary article!!!
I do believe we (eventually) will be able to "vaccinate away" disease.
Except it won't be through injections of vaccines. It will be through gene manipulation. Biochem science has a long way to go before this becomes a reality, tho.
But imagine one day when a woman is pregnant and with a simple procedure, the fetus' immune system can be made to protect against all (known) diseases.
Or, if a "virus mutation algorithm" is discovered (probably not likely), they could be protected against most unknown diseases as well. If that doesn't make sense, think of it like how some computer virus scanning programs have a huge database of known viruses they scan against, but also have an option to use heuristics to scan for unknown viruses.
This is, of course, assuming the world doesn't end in 2012
I'm a huge nerd and used to watch Star Trek: The Next Generation when I was a kid (ok, I still watch it to this day, sometimes). I remember on one episode, they made a reference to how they eliminated all diseases on Earth within 100 years. I thought that was awesome. I know it's a fictional future, but still. I remember thinking "whoa, I want to live in that time period!!!!"
And now on a totally unrelated note, this smiley face looks like a ninja -->
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I'm going to the neuro tomorrow and I'm going to mention PANDAS. I don't really have any of the symptoms, but my tics did begin following a bout with mono and a horrible sore throat. I've never had strep, however. I've been tested (throat culture) a lot, but it's never come back positive.
But in hindsight, I've always been a little OCD ever since I was a child... but it got much worse following mono.
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I have three things to contribute:
1. I laughed when you mentioned "pee shivers." It seems like most, but not all, people (males) have experienced this phenomenon. There's even an article on wikipedia about it. Sorry that's not really relevant.
2. There have been exactly two times in my life where I have felt like I needed to pee every few seconds. Both times were when I was a kid. I would feel like I needed to pee, and then go pee, but as soon as I would finish, I would feel like I had to pee again. So a few moments later I'd go back to the bathroom and try to pee, and a few drops would come out. And then a few moments later I'd feel like I had to pee again, and repeat this cycle for 30-60 minutes. The first time it happened I was like 5 or 6 and I freaked out and asked my mom what was going on. She said it happens every once in a while and the cure is to drink some water and hold it in for as long as you can and then go pee (a normal pee), and then that will "reset" everything in your body. So I drank some water and went back to bed, luckily didn't wet the bed (come on, I was like 5 and went to bed feeling like I really had to pee!), and in the morning I woke up with a bladder about to burst, went and had a nice long pee, and everything was back to normal.
3. You said she said it "tickles." Every once in a while (maybe once every year or two) when I'm done peeing it's like something gets messed up and the stream doesn't get cut off right or something, and it leaves this weird sensation at the end of my urethra that "tickles" except it's more like a burn (it's not an STD!!!!!). The peeing itself feels fine, and this doesn't start until the very end. It just seems like something gets out of whack for a little bit. It usually goes away in a couple hours. This has happened to me rarely since I was a kid.
So all I'm saying is it could just be a little glitch in your kid's pee system.
And this is officially the weirdest post I've ever made on a forum
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Update:
Still on .05mg.
Side-effects are slowly going away. I"m not lightheaded every time I stand up anymore, altho the other day I stood up and REALLY started to spin + lose it yet I continued the sentence I had started before I stood up. I asked my gf who was over if what I said made sense cuz I was about to pass out and wasn't thinking clearly. She said yeah.
I've read that this drug can take weeks to months to build up high enough levels before it starts to be effective.
Ok, seriously, that last 4 days have been WONDERFUL. I would say my blinking tic was reduced around 90%. It came out of nowhere... the days prior to that sucked/were normal, and then Tuesday I realized "omg, I haven't blinked in 10 min!" "omg, I haven't blinked in an hour!" "omg I haven't blinked in 4 hours!"
It was absolutely fantastic. And then this evening after I got out of the shower it kind of started coming back. I'm hoping this is just a little swing and it will go back to being awesome like it was for the past 4 days.
I can't put into words how the last 4 days were. Mine never wax or wane... I have never had a break, ever (outside of during sex/masturbation) from my blinking tic in the last 10 years, until the last 4 days.
Anyway, I have a neuro appointment on Monday. I'll post more updates here later.
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SO IN SHORT--ALL THESE KIDS WITH TICS ARE DEFICIENT IN MAGNESIUM!!!!
Aaand no.
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Guy if you are experiencing these side effects you really should talk to the doc
They've cooled down a bit during the last few days.
I may be biased because of the issues, including psychosis, that my husband had on it, but I really do feel it is a dangerous drug that needs very careful physician supervision, especially if side effects are prevalentThat's why I'm only taking 1/2 a pill per day
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blood pressure *was* being monitored before i moved (we has a bp machine where i used to live). Not anymore, tho.
Do you think i should buy one and take my bp throughout the day, like maybe morning, noon, evening?
On a side note, last night i was having terrible headaches/eyeaches. i forgot to pack my ibuprofin wen i moved and the grocery store closed last night at midnight.
could headaches/eyeaches be related to low bp?
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ok cool it works from my phone. i wanted to test before i wrote a long reply and not have it go thru.
forgive any typos and bad gramar since i am posting from my phone.
ok, i decided to only take 1/2 a pill (so .05mg) because i read about that dose on the internet. i figured i can always increase it later.
i took it the night i made this thread.
The next morning i woke up and my eyes hurt. like they were actually throbbing to the beat of my heart. slightly painful, enough to be annoying. it went away after a few hours. since then, i've only felt this for a few *minutes* here and there, and sometimes only in my right eye.
on the first day i noticed that i felt like i was blinking less. let me explain this, however:
ever since i got this tic, i have been EXTREMELY conscious of the passage of time, every second of every minute of every day. the reason is because every few seconds i get the urge to blink, and i am aways consciously aware of it. i am never "in the moment" ever, because i am always aware of the passage of time. the one exception is when i have sex or masturbate because as i've said before, this causes the tic to go away.
i would have these moments the first or second day on clonidine where i would suddenly realize "omg! i havent blinked (hard tic blink) in the last 5 min!" it was like for a short time my brain went back to "normal" and lived in the moment. and the i would becme aware of it (usually when the next tic blink urge came).
i hope that made sense.
overall i would say, with one exception, the urge to blink hard has been reduced by 25-50%. the one exception is the other day when my eyes were killing me (like a usual, pre-clonidine day).
Side effects:
- the drowsiness is intermittent. some times i dont notice it. but the other day i almost fell asleep while driving. it was a chemical sleep feeling, the kind you have no control over (like taking ambien vs. being naturally tired)
- dry mouth/throat: bad the first two days. improving since.
- dizzyness upon standing: sometimes it's bad (light headed and seeing pretty colors). sometimes it's not noticeable at all.
- sexual side effects: i'm kind of pissed here. it could be coincidence but my libido has been decreased since i started. and when i do have sex, my erections are less rigid than before. i had never heard of this as a side effect before so i googled it and found that its a rare one. it could be linked to the drowsiness. i'll see if it goes away.
I monitored my blood pressure the first few days. it was fine. my bp is usually low so i was worrid about adding clonidine to the mix. my usual bp is like 120 over 68. i think this is low considering how high strung i am.
pulse is normal. occasionally i have noticed it randomly racing for a few moments. this is weird.
headaches: i never get headaches unless i'm sick. in the past few days i have had a few, transient headaches. this stuck out to me cuz like i said, i dont get headaches.
eyeaches: mentioned above. countered with ibuprofin.
I havent tried working out yet since starting clonidine. i'm kind of worried cuz of the lightheaded thing while rising. i'm afraid to do squats.
part of my ocd is bdd so not working out might be an issue. i am literally repulsed when i look in the mirror at how much weight i've lost in the last week (i have a very fast metabolism). but thats another issue altogether.
i am interested in possibly trying tenex. i read that there's basically no reason to ever use clonidine now that tenex is available.
i also read one case where a guy said tenex didnt work for him but clonidine did. weird.
oh yeah, im posting from my phone cuz i just moved and i dont have internet at my condo yet.
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test reply from my phone. refresh this page in 15 min to read my reply.
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Went back for a follow up visit today and brought with me my 12 pages of research (the doc I posted in the other thread). I told him how Zoloft made me vomit a few hours after taking it and I stopped taking it.
My doctor told me the fact that I did 12 pages worth of research for tic treatment medicine is indicative of my OCD. I laughed. I then told him I did it cuz I wanted to know what we were talking about. He said "you're obsessed with it." I said "I'm obsessed with fixing whatever is wrong with me, yes." hehe
Anyway, he talked about SSRIs but I said I didn't want to try any other ones. I also said I don't want to use neuroleptics or atypical neuroleptics because of Tardive Dyskenesia. He looked through my research with me and said he didn't want to put me on anything that I wasn't comfortable taking, which I thought was cool. I had it narrowed down to 4 drugs I wanted to try:
Clonidine
Tenex
Marinol
Topamax (inspired by the thread here about topamax)
He said let's start with clonidine and I said I was fine with that. I told him I wanted to try marinol but I had heard it was ridiculously expensive ($700/mo). I said it's cheaper to buy it on the street. He told me "it does work but I won't give it to you so you'll have to get it on the street." lol. Maybe he'll write me a note so if I get busted by the cops I can say "but my doctor told me too!!!" haha.
Anyway, he also said it's good I'm meeting with a neurologist later this month and he said the neuro will be able to rule out any brain problems (even tho that's what I suspect it is anyway).
Cliff's Notes:
- I'm starting clonidine tonight at bedtime (drowsiness is a side effect) and I will let this forum know if it works.
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For what it's worth, if you can find some without iron they might taste better.
Iron has a distinct smell and taste. A lot of post-workout protein bars have some iron in them and you can always tell from the smell if there's iron in them or not. It has a funky taste, too. You can also smell the iron in multi-vitamins.
I take a men's multivitamin that doesn't have iron in it. Of course, I'm 27 and I'm not developing anymore and I also get enough iron from all the red meat I eat
So maybe find a chewable one for kids that doesn't have iron, and then give them some liverwurst for the iron.
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I don't know a single kid who likes lima beans, tho
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the roll-on anti-acne med. you are referring to was more than likely salicylic acid...something many of our kids are sensitive too.
Does it cause tics that last for 10 years after cessation?
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I said I would try and find out if the fact that he is 13 would make TS less likely.
I believe the clinical definition of TS is onset of symptoms before age 18, and I saw another source that said 21.
ADULT based PANDAS Tourettes? & Tics diminish with antibiotics?
in PANS / PANDAS (Lyme included)
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Yeah, I am pretty scared that a doctor is going to say "oh yeah, you do have PANDAS, but it's been 10 years so we can't do anything."