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Everything posted by guy123

  1. Cool. I've updated my drug document which had Tetrabenazine listed as not approved for FDA use.
  2. I'm not sure what I was treated for. I remember they gave me a bunch of tests (pricks on the arm) and the ones that become swollen were the ones I was allergic to. I guess they put those items into the shots and that's what I was given. But I never completed treatment. I stopped after a few weeks cuz I developed this blinking tic. The allergy doctor also gave me a prescription for a roll-on anti-acne medication. My mom thinks that is what caused the tic to start. I have no idea what it was or what was in it. I should maybe give this office a call and see if I can get the info about my shots, huh.
  3. Very interesting. Do you have any info or links to how allergies affect dopamine? I'm still pretty new to all this. Thanks! Oh and I don't know if you're still in contact with that lady but if you could ask what medications she used I would appreciate it. I hope it wasn't one of the common ones!
  4. Wait, am I reading this right? If someone has PANDAS, even if they've had it for a while, it can still be treated with antibiotics?
  5. Any idea what medications she used? And the TS itself got worse on medication? Or they just had bad side effects? Did the TS go back to normal after they quit the medication?
  6. I said I've had a few cigarettes here and there but never noticed an effect on blinking. That's what I'm thinking too but I won't know for sure until I get tested by the neuro. Side question: isn't dopamine one of the "feel good" hormones? So shouldn't people with too much dopamine always be happy? Interesting. I've also read that alcohol increases dopamine (altho I read one source that says it has the opposite effect), and alcohol seems to help a bit, sometimes. I'm familiar with the homeopathic principal of "like cures like," but doesn't that only apply in infinitesimal amounts? I haven't studied homeopathy in a while. I've kind of given up on it. I've tried quite a few products from Boiron, colloidal silver, etc. (not for tics, but for sickness in general) and never saw any difference vs. when I didn't use them. The internet is full of stories from people who cure strep throat in 5 minutes with colloidal silver, tho. Maybe I'm doing it wrong Perhaps a coincidence, but my blinking tic started a shortly after I started getting allergy shots when I was 17. What is NAET and bioset? Now that I think about it, yes. I had the following: - for a short while in 6th grade I had this thing where I would always look at my watch. It wasn't preceded by any premonitory sensation, I just had some fixation with always knowing exactly what time it is down to the second. This went away shortly after someone asked me "dude why are you always looking at your watch?" I'm pretty sure this was a tic cuz it was a repetitive movement, altho it went away when I was doing something (like in gym class). - for another short while in 7th grade, I had a transient vocal tic. In certain situations I would make an almost inaudible "nnt" sound, except it was just a millisecond of vocalization and then a glottal stop. I wouldn't even open my mouth to do it. I think it was OCD... I had to do it a certain number of times or until it "felt right" in certain situations "or something bad would happen." Now I recognize that as OCD. Anyway, after a short while, this went away. On that note, I've always been OCD since about middle school (6th-8th grade). I've always had rituals. None of the super long ones like you heard about on TV, but maybe 10-30 seconds in duration. I was then tic free (altho still OCD, altho I didn't recognize it as such), until I was 17 when the blinking started. I have recognized now that occasionally I will still do the "nnt" thing, except there's no premonitory sensation... I just do it in certain situations, like after I read a certain type of sentence... I'm about 99% sure it's OCD related because it's always the same type of situation in which I'm reading something that it occurs. I've never tried to quantify it before but I would say that it's after I read a sentence that hold significant information (I make the "nnt" sound to acknowledge and let the information "sink in") or after I read something that would evoke laughter in a crowd of people (I make the "nnt" sound to represent people laughing). I'm sure there are a few more but that's it. It never just like comes out on it's own, which is why I think it's OCD-related. If I ever accidentally do it around people, I can disguise it as a small laugh. Sometimes I'll do it in conjunction with the blink, however, and that scares me. It makes the blink "feel more effective." This fact really scares me that there's something seriously wrong with me neurologically. re: smoking - if I want to try this, can I use a nicotine patch instead? I don't like the smell of cigarettes.
  7. Hey, I figured I'd reply to your PM questions here cuz it might help someone else who is searching or reading. Sometimes. A few times I have almost had a panic attack because I read about how people's tics change, and I seriously freak out that might might change from something that is fairly manageable (blinking) to one that is much more socially unacceptable and harder to make excuses for, such as shoulder shrugging or head jerking. A couple times I have literally freaked out about this and gone into panic attack mode (I'm naturally high anxiety but have probably only had 3 anxiety attacks in my entire life, all of which were in the last year, and 2 of which were related to what I'm talking about here). My doctor prescribed me lorazepam for acute anxiety attacks. While it's a wonderful anti-anxiety drug, it has no effect on my urge to blink. Yeah. Sometimes it will pop into my head like "oh man, I haven't had to blink hard in 5 minutes," but that thought comes along with the sensation. I've had a few cigarettes here and there but never noticed any effect on blinking. I was thinking of trying it Have you ever smoked weed? I've read a lot of promising studies about marijuana and Marinol (prescription pill made from marijuana) relating to TS and tics. That's what someone on here told me. I really don't know anything else about it but I plan to talk to my neurologist about it. I'm not sure. I've heard that dopamine issues can cause tics but I'm not sure if that's the only cause or if it's necessarily MY cause. I need to do more research here. No, but after reading that other thread I am doing more research on it. Shrinks can't write prescriptions so maybe you meant psychiatrist. When I go back to my doctor I am going to print out that document and bring it with and say "let's talk about drugs." That way if he suggests a neuroleptic or whatever I can say "nope, see this research suggesting tardive dyskenesia?" I haven't tried it yet. Alright dude, I pretty much look at it like this: having a tic SUCKS. It's probably the worst thing that's ever happened to me in my life. But as far as tics go, blinking is probably the least obtrusive one you can get. In other words, if I HAD to choose a tic, I'd probably pick blinking, because it probably sucks less than the other motor tics that people get. You can always blame it on your contacts (I don't wear glasses and have 20/20 vision, lol, but I tell people I wear contacts when they ask "hey what's wrong with your eyes?). This viewpoint is hard for me as I am pessimistic by nature but I try to keep it. Oh, more bad news for us, but I've read some things suggesting that tics beginning in adulthood tend to not go away. This is compared with children who develop tics/TS early in life and often have a partial or full remission as they approach adulthood. I do not plan on having this for the rest of my life, hence my tons of research. I am fine with taking a (side-effect free) pill every day for the rest of my life. That's not even an issue for me. But having tics is not acceptable to me. Once I see a neurologist and/or get some medication from my doctor (have an appointment on 9/2) I will make a new thread here with what I learn.
  8. Hey. I know how you feel. I started blinking when I was 17 and it hasn't stopped yet (I'm 27). You are consciously blinking, right? Like your eyes aren't automatically closing themselves, are they? If they are, you might have blepharospasm. Here's my story: http://www.latitudes.org/forums/index.php?...ic=3538&hl= I am extremely intent on fixing whatever is wrong with me. Here is a list I have compiled of different medications used to treat OCD/TS/tics along with notes and side effects: http://www.latitudes.org/forums/index.php?...ic=3696&hl= In the meantime, I've noticed that alcohol tends to reduce my urge to blink (not eliminate, but reduce)... not that I'm encouraging drinking. And during sex/masturbation the sensation is almost or entirely eliminated. Oh, my eye doctor just gave me a trial of Restasis. How is it working for you? The reason I went to an eye doctor is my doctor wanted to rule out issues with my eyes before we start talking about neurological issues. And I've just been referred to a neurologist but I haven't seen him yet. Oh and speaking of Wellbutrin, my research suggests that it may exacerbate tics. There are no reports of it improving tics. Have you noticed any decrease you in urge to blink while smoking? edit - geez I forgot to answer your questions. No idea but possibly. There are a lot of meds that can have an effect on tics. Download the document in my research link I provided. There are 12 pages of medicines and their classes/names/methods/notes/side-effects. Tennex (Guanfacine) has some studies suggesting it may reduce tics. Most importantly you want to look at the class of drug and the side-effects. Personally, I am going to avoid any medicines that are classified as "neuroleptic/antipsychotic" or "atypical antipsychotic" because one of the side effects of that class of medication is tardive dyskenesia, which is irreversible, involuntary muscle movement and I've seen incidence reports as high as 20% of users developing tardive dyskenseia after 1 year of use. Since I plan to be on medication for the rest of my life, that's entirely unacceptable. I've heard a PET Scan can tell you if your levels of serotonin, dopamine, norepinephrine, etc., are messed up. Me too. Some people report this as a tic trigger. They say that LCD screens are less bothersome than CRT screens. I don't notice a difference. Good luck. Welcome to the board.
  9. I'm 27. I also read of acute glaucoma as a side effect. Seriously tho I will ask my doctor about this. And I don't drink pop anyway Are you allowed to just stop taking Topamax whenever you want? Or is it one of those that you have to come off very slowly? Seriously, reading your thread made me happy. I'm glad you found something that works and I hope it keeps working :D
  10. Thanks for the replies. I've done a ton of research, at least on medication. I have a 12 page document (uploaded on this forum). I'm hoping he's cool. I heard a PET scan will tell you if your levels of serotonin, dopamine, norepinephrine, etc., are out of whack. That's why I want one.
  11. Glad you have success! My notes about Topamax say this: Class: - Anticonvulsant Name: - Topiramate Tradename: - Topamax Method: - The reduction of tics in some patients may be explained by its potentiation of GABA activity Notes: - Can be used for OCD - No reports of it exacerbating movement disorders Side-effects: - Change in taste - Pins and needles - cognitive deficiency - difficulty understanding concepts - loss of appetite - somnolence - nausea - upper respiratory tract infection - osteoporosis Tomorrow I'm going to do more research on this drug. Right now it's 3:20 AM and I should be in bed
  12. Since my symptoms disappear when I go to the doctor, I recorded a movie of my blinking on my phone. I showed it to my eye doctor today. She said it looks like blepharospasm but my symptoms don't sound like it (ie. my blinking is not involuntary and my eyes don't stay shut). I'm simply blinking to alleviate an uncomfortable sensation ("premonitory urge"?) She gave me a referral to a neurologist. What should I expect from my visit? I want to get a PET scan. Is that something I say on the phone when I'm making my appointment or is that something we'll talk about at our initial visit and then schedule a followup visit for or what? Oh, can neurologists write prescriptions? Based on my research I want to try Marinol but I have a feeling it's going to take a while before I find a doctor who will prescribe it. And I'm going to feel weird asking for it.
  13. My doctor just said I "have a blinking tic." He believes it's OCD/chemical related. I'm going to ask for a neurologist reference next time I see him (9/2) because I want a PET scan done.
  14. Are you wanting to stay within the realm of SSRI antidepressants? There are some non-SSRI antidepressants but they have been known to make TS/tics worse.
  15. I drank a good amount last weekend and at one point noticed that it had been an hour or two since I had ticced (blinked). This was a big deal to me because normally I have a hard blinking tic at least a few times per minute. I googled "alcohol tics" and a few other variants and found some sites that said: - alcohol can reduce tics by interfering with dopamine transmission (under the assumption that people with TS/tics have too much dopamine) But another site said: - "Alcohol also helps to increase the release of dopamine, by a process that is still poorly understood but that appears to involve curtailing the activity of the enzyme that breaks dopamine down." and - Dopamine causes an excitatory response at dopamine receptors in the frontal lobes (7). Alcohol increases the amount of dopamine acting on receptors and enhances the normal feeling of pleasure associated with the dopamine system Does anyone know what is going on in the brain? Wouldn't increasing dopamine production make tics WORSE? I'm actually kind of worried. For the last two days my blinking tic has been HORRIBLE. In fact, it was so bad yesterday that today I had DOMS (delayed onset muscle soreness, like the soreness you feel the day after a hard workout) in my eyes from blinking so hard yesterday. The tic was so bad today, too, that I started drinking this evening just to relieve it. I'm 27 and have never had an issue with drinking ever (even in college where I liked to party). But I'm a little worried. I'm not drinking to get buzzed/drunk, but to lessen my blinking tic. Here is a study suggesting a link between dopamine and TS: http://ajp.psychiatryonline.org/cgi/content/full/159/8/1329
  16. I don't know how authentic this source is, but: http://www.freshpatents.com/Compositions-t...20060217321.php You might also want to read this post: http://www.latitudes.org/forums/index.php?showtopic=1408 Altho this post says it makes tics worse: http://www.latitudes.org/forums/index.php?showtopic=3635 I imagine it may help or worsen tics based on the cause of the tic. What did they say about coming off the phenibut?
  17. You should contact the producer and ask them how much of their proprietary blend is phenibut. I don't know much about coming off of Phenibut after long term use. I've read a few accounts of people doing it online, including one guy who was on it every day for 6 months and then quit cold turkey and it was absolutely horrible. Here is one story of a guy who quit taking 1g daily: http://www.mindandmuscle.net/forum/lofiver...php/t14199.html I honestly don't know if tapering is better than cold turkey or what. I don't want to tell you the wrong thing. One thing to keep in mind if you're reading about it online, tho: a lot of people say that they use HUGE doses, like up to 6g at a time. I can't imagine that. I've used a max of 500mg and I was definitely feeling the effects. I'm about 170lbs with a fast metabolism. Some of the people taking bigger doses said they felt great, and others said they got a horrible hangover feeling. You have to remember that a lot of people using recreational drugs use larger doses than they should. I think this combined with the fact that oral phenibut takes a few hours before you "feel it" leads to people taking more than they should. So just take any doses that seem to be pretty high with a grain of salt. And honestly, if it was me and the naturo said that it was "perfectly safe," I would ask him (her?) through what mechanism phenibut works and why, what is its half-life, does it cross the blood-brain barrier, does tolerance build and if so, why, if not, why not, how quickly does tolerance build, why, what receptors in the brain does it stimulate, why, and through what chemical process, how is it eliminated, etc.? If someone is telling you that a substance is "perfectly safe" they should be able to answer all of those questions. Otherwise they don't actually know why or if it's "safe." I'm assuming "naturo" means "naturopath?" Which I'm assuming is a homeopathic doctor? I don't really know much about that stuff, but I know that I'd be more inclined to listen to and believe a chemist when it comes to drugs. Then again, I don't know what kind of training a naturo goes through to become a doctor. Good luck. Keep us posted.
  18. If by "phenylbutric acid" you are referring to "4-amino-3-phenylbutyric acid," which is also known as "phenibut," then you really don't want to stay on this long term as tolerance builds quickly and withdrawal can be terrible. What dosage are you using? Most recreational users recommend using 500mg to 2g (very high dose) no more than a few times a week, max, and taking breaks frequently. Maybe your dose is different, or maybe your supplement is different. I know it's used for depression in Russia and I think it's a longer term use there. I've only used it recreationally (and never more than 500mg). It caused euphoria and was definitely effective as an anxiolytic (the reason I took it). It had no effect on my blinking tic. I never used it more than twice a month and only used it a few times ever. http://en.wikipedia.org/wiki/Phenibut
  19. How is your diet? Most men don't need iron supplements because we get enough from a regular diet. Men's multivitamins have no iron in them (women's do). Generally only women need iron supplements because of the blood loss during their menstrual cycle. I've never heard of men needing iron (outside of some heath condition like anemia or whatever).
  20. Do you do it intentionally, such as to relieve stress or an uncomfortable sensation, or does it happen involuntarily and you have no control over it?
  21. Of course this morning and all afternoon while I was at the eye doctor's office, my eyes were fine and I hardly blinked at all. But as soon as I was done and I went to pay my bill, they got bad again. She told me if I do have blepharospasm, there's no cure and it gets worse as I get older. But it can be suppressed with botox. Anyway, here's why I'm not sure I agree: All the research I've done online suggests that blepharospasm movements are actually involuntary, and sometimes involve the eyes remaining forcibly closed despite that patient trying to open them manually with their fingers. Someone I talked to on a blepharospasm forum said that for the first 6 months they thought it was voluntary, but then as it got worse they realized that it was happening on its own. Another person said their eyes would force themselves shut and they had to use a cane to make their way around their house. I've read descriptions online saying that sometimes the eyes will stay closed for HOURS despite the patient trying to open them! I've had whatever condition I have for 10 years and my blinking has never been fully involuntary. I mean, it's involuntary to the extent that I feel an uncomfortable sensation in my eyes that I have to blink to relieve, but the blinking is always voluntary, and I've never had my eyes stay shut despite me trying to open them. However, someone on the forum did say that the uncomfortable sensation I feel is the ring of muscles around my eyes spasming... so maybe I have like very beginning bletharospasm that just hasn't progressed at all. They also said it's caused by something misfiring in the brain so it could be a chemical imbalance similar to a tic disorder. Anyway, I think I want to see a neurologist. Can I get my brain scanned so they can figure out exactly what chemicals I have out of proportion or whatever? Oh, also I read that blepharospasm typically affects women over 50, and this started when I was 17. Odd.
  22. I developed a blinking tic when I was 17 that I still have today (I'm 27). I have an occasional "breathing tic" where I exhale a certain way out of my nose. Sometimes it's coordinated with my blinking and sometimes it's not. I've always been pretty OCD ever since I can remember. I haven't been diagnosed with anything (altho my doctor did say "you've developed a tic. We'll put you on Zoloft and that will take care of it) but have been going to my GP recently because I'm tired of this tic. I'm not interested in taking the Zoloft tho because of the sexual side effects. And also a few hours after I took it the first night I started throwing up. I don't think it was related to the Zoloft, however, because I only took 1 and I was sick for the next two weeks. Zoloft's halflife isn't that long. I'm also extremely high strung and have a lot of "nervous habits" altho they are not tics because I can stop them if I want and there's no premonitory sensation that precedes them, unlike with my blinking where it feels like there's dusty air in my eyes and that sensation is only relieved by blinking very hard.
  23. Some people have reported that activities requiring intense concentration like playing video games (and therefore looking at the TV) actually reduce tics. I haven't really noticed any correlation. I have two LCD monitors at my computer and sometimes when I've been using them for awhile (which is most of the time, lol), my blinking tics get really bad, I'm talking like a hard blink every 5-10 seconds. Other times it's not bad at all. Same thing with watching TV. If it does cause a reaction, I would guess that it has more to do with the refresh rate or the frequency of the images on the screen rather than the electronics themselves. Keep in mind that's entirely a guess and isn't backed up with any research or scientific thought. edit - I believe I remember reading something here about someone having better results when switching from CRT (the old kind of TV/monitors) to LCD (the new flat kind). Again I haven't noticed a difference.
  24. Download here: http://www.savefile.com/files/1707877 Click the link that says "Download File" on that page. It's a .doc file with a bunch of tables in it so hopefully it should work for everyone. edit - I've been told that link doesn't work anymore. You can view the list here instead: http://www.tourettestreatment.com/list-of-treatments.php I know a lot of people on this forum are more interested in natural treatments but maybe you can use this document to see the side-effects of different medications and confirm your decision to not use them. Also, perhaps some other lurkers (visitors who read but don't post) found this site through a google search (like I did) and are interested in medical treatments. I will be updating this document constantly and will reupload a new version when there have been significant changes. Please note that this document is primarily about the treatment of tics (whether occurring due to TS, OCD, or other tic disorder) and not necessarily about the treatment of TS as a whole. Each drug class is divided into the following sections: Name - Tradename - Method - Notes - Side effects Some spots are blank because my research isn't complete yet. Here's what it contains so far: Anti-psychotics/Neuroleptics Pimozide Haloperidol Fluphenazine Supiride Thioridazine Atypical Neuroleptics Risperidone Olanzapine Thiothixene Clozapine Quetiapine Ziprasidone Aripiprazole SSRIs Sertraline Fluoxetine Paroxetine Fluvoxamine Citalopram Escitalopram Non-SSRI Antidepressants Nefazodone Clomipramine Nortriptyline Imipramine Bupropion Blood Pressure medication Clonidine Guanfacine Dopamine inhibitors/blockers Tetrabenazine Supliride Dopamine agonists Pergolide Dopamine autoagonist Talipexole Norepinephrine Reuptake Inhibitors Atomoxetine ( R)- (-)-N-methyl-3-(2-methylphenoxy)-3-phenylpropylamine Reboxetine Desipramine Marijuana Marijuana Marinol Benzodiazepine derivative Clonazepam Anticonvulsant Levetiracetam Topiramate Lamotrigine Antiepileptic Carbamazepine Opoids Propoxyphene Naltrexone Muscle Relaxant Carisoprodol Anti-hypertensive Propranolol Unclassified so far: Supiride tiapride metoclopramide piquindone Ondansteron Baclofen Donepezil Finasteride (yes, the baldness treatment ) Botox Injections Deep Brain Stimulation
  25. Wait, we can attach images here? Or do you just mean display them with tags? edit - you know what nevermind I have it hosted now. Mods please delete this thread.
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