For anyone who has used Clonidine successfully

[guy123]

How long were you/have you been on it? Did you ever have to increase the dose?

 

I talked to someone on another forum who said he had to increase the dose (once in two years). That kinda got me worried because I don't really ever want to increase the dose. However it's worth mentioning that he said when he was on Haldol he had to increase the dose every few MONTHS. Ick.

 

So my questions to that are:

 

With reference to Haldol, does anyone know why doses must be increased in order for it to stay effective? Does the body adapt?

 

With reference to Clonidine, does the body typically adapt? Is there rebound exacerbation if you stop? If so, will that exacerbation return to baseline eventually (in other words, if you stop and tics become worse than before you started, will they eventually return to the level they were at before you started)? If tolerance develops, can Clonidine be cycled (perhaps 6 months on, 1 month off, or 5 days on, 2 days off, like how some people do with SSRIs)? If adaptation is present, is the method of adaptation understood (ie. does the body produce more dopamine or increase the sensitivity of dopamine receptors in order to return to what it considers "baseline")?

 

I'm obviously going to bring all these questions to my neuro next month when I go, but I figured I'd ask them here, too. I'll post the replies from my neuro if I get any.

[faith]

guy123,

are you still using this? If so, could I ask if it is helping in any way your attention or focus, or is this just for the tics? It was eye blinking for your, correct?

 

I don't use this for my son or any drugs, but I am starting to get a little frustrated with his eye twitching that seems almost chronic at this point, its been all summer till now. I don't want to resort to drugs, but I am trying everything I know of and this particular tic is stubborn. I don't want to go this route, but I also have foucus problems with him and am curious if it helps that. Is it helping you any?

 

Faith

[lynsey]

guy123,

are you still using this? If so, could I ask if it is helping in any way your attention or focus, or is this just for the tics? It was eye blinking for your, correct?

 

I don't use this for my son or any drugs, but I am starting to get a little frustrated with his eye twitching that seems almost chronic at this point, its been all summer till now. I don't want to resort to drugs, but I am trying everything I know of and this particular tic is stubborn. I don't want to go this route, but I also have foucus problems with him and am curious if it helps that. Is it helping you any?

 

Faith

 

Faith

 

I did not want to use drugs of any kind on my sons, however I found I was in your position about 10 years ago - frustrated with their tics, having

tried eliminating many things from their diet and getting some success, but also dealing with a restlessness issue that was driving my son crazy.

I tried Clonodine after many many months of thought, I knew I could take them off it if it wasn't working. They started on what the doctor said

was very low dose, .050 three times daily, however even that was too sedating and made them irritable, so switched to even lower dose, .025 mg

three times daily (this small dose is available in Canada) which they tolerated well, and I think it helped their tics although not eliminated them (remember it's such a tiny dose), but it helped the other aspects enormously - removed the agitation. Having said that, Clonodine results are very individual and different with each

person. For some it helps greatly, some it helps minimally, and some people it can make things worse. The only way to know for sure how it

will work for your child is to try it under the direction of your doctor

 

Lynsey

[guy123]

.050 three times daily, however even that was too sedating and made them irritable,

 

Oh geez, if I'm reading that right that's a huge dose!

 

I take 0.050mg ONCE a day, and I weigh 160-170lbs. It makes me sleepy sometimes.

 

I can't imagine how bad the sedating effects would be if I took THREE TIMES that much!

 

Just for clarification I live in USA and my Clonidine comes in 0.1mg tablets. I break a table in half (they're scored down the middle so they break easily most of the time) and take 1/2 a tablet nightly. So that's a total daily dose of 0.050mg.

[guy123]

guy123,

are you still using this? If so, could I ask if it is helping in any way your attention or focus, or is this just for the tics? It was eye blinking for your, correct?

 

Yes I'm still using it. I don't know if it's had any effect on my attention or focus... I never really had attention issues anyway. Well, I joke that I have "adult onset ADD," but in reality I just didn't like my job very much

 

I don't use this for my son or any drugs, but I am starting to get a little frustrated with his eye twitching that seems almost chronic at this point, its been all summer till now. I don't want to resort to drugs, but I am trying everything I know of and this particular tic is stubborn. I don't want to go this route, but I also have foucus problems with him and am curious if it helps that. Is it helping you any?

 

Ok here's my experience with 0.050mg of Clonidine daily. For the first week or two I had some annoying side effects, such as headaches (prior to this I never get headaches, ever, unless I was sick, so I am confident the Clonidine was causing them). I also had eye aches (like a headache, but in my eyes. Feels like someone was squeezing them. Both of these were treated with ibuprofin. I had some sexual side effects that persisted for a few weeks (super annoying), but they seem to be going away. The only side effect was lethargy, which is why I take my dose at night before I go to bed. I didn't really notice too much lethargy during the days, but maybe a little bit more than usual (I'm pretty lazy to begin with).

 

Alright, let's talk about my tic now.

 

On a scale of 1-10, with 1 being "tic free" and 10 being "constant", before I started Clonidine, every day was somewhere between a 7 and a 10.

 

After being on Clonidine for about 2 months, every day is now somewhere between a 4 and an 8. I still have days that are pretty bad (the 8s), but I also have days that are wonderful (the 4s)... like literally, I enjoy going outside on these days because I know I can talk to people and hold eye contact and not be concerned about how I look or what they are thinking. It's like this ball of happiness wells up inside of me and I even smile sometimes (lol I'm pretty cynical most of the time so for me to smile randomly is huge, LOL).

 

Actually, the last few days had been really bad and I was starting to get annoyed thinking that maybe it was losing its effectiveness or something, but out of the blue today is a 4!!!!

 

I'm going to start keeping a record of how I feel each day (rather, how intense the tic is) and see if I can figure out a pattern as to why some days are still bad but some days are good.

 

As for the "improving focus" aspect or whatever for some people, it may just be because Clonidine can make you a little tired which may give the illusion of them having more focus because they are being less ADD because they are a little tired. I dunno. Or it could be that Clonidine's action on the brain promotes focus. I have no idea. I didn't notice any change one way or the other.

 

I have been taking naps recently now that I think about it.

 

Finally, the only other thing I've noticed is that my tic seems to be less now when I am walking around or moving. I thought that was strange. I was working on my computer the other day blinking up a storm, and then I walked into the kitchen to get something to eat, and when I got back I was blinking immediately, but I noticed that during my trip to and from the kitchen, it had stopped. Beats me.

 

If you want to medicate, Clonidine is probably your best bet for a first medication because the side effects are mild compared to other tic drugs. Clonidine can make you sleepy and give you headaches and make your erections less hard than they used to be. Other tic medicines can kill you or give you permanent movement disorders as a result. Clonidine is a smart first choice

[lynsey]

guy123,

are you still using this? If so, could I ask if it is helping in any way your attention or focus, or is this just for the tics? It was eye blinking for your, correct?

 

Yes I'm still using it. I don't know if it's had any effect on my attention or focus... I never really had attention issues anyway. Well, I joke that I have "adult onset ADD," but in reality I just didn't like my job very much

 

I don't use this for my son or any drugs, but I am starting to get a little frustrated with his eye twitching that seems almost chronic at this point, its been all summer till now. I don't want to resort to drugs, but I am trying everything I know of and this particular tic is stubborn. I don't want to go this route, but I also have foucus problems with him and am curious if it helps that. Is it helping you any?

Ok here's my experience with 0.050mg of Clonidine daily. For the first week or two I had some annoying side effects, such as headaches (prior to this I never get headaches, ever, unless I was sick, so I am confident the Clonidine was causing them). I also had eye aches (like a headache, but in my eyes. Feels like someone was squeezing them. Both of these were treated with ibuprofin. I had some sexual side effects that persisted for a few weeks (super annoying), but they seem to be going away. The only side effect was lethargy, which is why I take my dose at night before I go to bed. I didn't really notice too much lethargy during the days, but maybe a little bit more than usual (I'm pretty lazy to begin with).

 

Alright, let's talk about my tic now.

 

On a scale of 1-10, with 1 being "tic free" and 10 being "constant", before I started Clonidine, every day was somewhere between a 7 and a 10.

 

After being on Clonidine for about 2 months, every day is now somewhere between a 4 and an 8. I still have days that are pretty bad (the 8s), but I also have days that are wonderful (the 4s)... like literally, I enjoy going outside on these days because I know I can talk to people and hold eye contact and not be concerned about how I look or what they are thinking. It's like this ball of happiness wells up inside of me and I even smile sometimes (lol I'm pretty cynical most of the time so for me to smile randomly is huge, LOL).

 

Actually, the last few days had been really bad and I was starting to get annoyed thinking that maybe it was losing its effectiveness or something, but out of the blue today is a 4!!!!

 

I'm going to start keeping a record of how I feel each day (rather, how intense the tic is) and see if I can figure out a pattern as to why some days are still bad but some days are good.

 

As for the "improving focus" aspect or whatever for some people, it may just be because Clonidine can make you a little tired which may give the illusion of them having more focus because they are being less ADD because they are a little tired. I dunno. Or it could be that Clonidine's action on the brain promotes focus. I have no idea. I didn't notice any change one way or the other.

 

I have been taking naps recently now that I think about it.

 

Finally, the only other thing I've noticed is that my tic seems to be less now when I am walking around or moving. I thought that was strange. I was working on my computer the other day blinking up a storm, and then I walked into the kitchen to get something to eat, and when I got back I was blinking immediately, but I noticed that during my trip to and from the kitchen, it had stopped. Beats me.

 

If you want to medicate, Clonidine is probably your best bet for a first medication because the side effects are mild compared to other tic drugs. Clonidine can make you sleepy and give you headaches and make your erections less hard than they used to be. Other tic medicines can kill you or give you permanent movement disorders as a result. Clonidine is a smart first choice

 

 

As far as prescribing dosages, our TS doctor said the smallest therapeutic dose was .075 mg per day, based on his reference

literature, because I remember asking him if there was a smaller dose than that, and he looked it up while I was in his office. I'm not saying what

you or your doctor decided is wrong, this is just what our doctor told us based on his reference literature. He said any dose

smaller than this would be of no therapeutic benefit. Additionally, in order to maintain an "even" amount of this medication

in your system for optimal benefits, he said it must be divided and given3 times daily, based on, I believe, how fast it's

metabolized. Again, not disputing what you or your doctor have decided for you, but it is food for though.

I know of a couple children who are on much higher doses than mine were, (2-3 mg. daily or more) tolerated it

rather well, and it helped their tics greatly, sometimes eliminating them. Again, having said that, my children could not tolerate

that high a dose so it was out of the question for us. Again, not everyone can tolerate Clonodine, nor does it help everyone.

 

You mentioned about the "improving focus" aspect of Clonodine. I am quoting from a manual on TS, and it states that:

 

"Clonodine is an imodazoline compound with alpha-adrenergic agonist activity. In low doses, it "down-regulates" alpha-adrenergic

neurons in the locus ceruleus, decreasing the release of central norepinephrine. (Therefore) the patient may experience a

reduction in tension, a feeling of being calm, or a sense of having a "long fuse" before tics are reduced. When there is a

positive response, improvement may progressively appear over many months and up to a year or more later. Patients gain

confidence in themselves, adjust better to school, feel less irritable, and have fewer tic symptoms. Those therapeutic

benefits reinforce each other."

 

We found that to be true in our sons cases, particularly the last two statements.

 

Lynsey

[guy123]

Interesting about dividing up the doses.

 

I read that the half life of Clonidine is 12-33 hours, so perhaps it varies greatly between individuals.

 

I would assume that a halflife of around 24 hours would mean that taking it once per day would be effective.

 

My neuro said that 0.050mg per day is what he starts people on.

 

At any rate, I'm glad it seems to work well for some people.

[lynsey]

Interesting about dividing up the doses.

 

I read that the half life of Clonidine is 12-33 hours, so perhaps it varies greatly between individuals.

 

I would assume that a halflife of around 24 hours would mean that taking it once per day would be effective.

 

My neuro said that 0.050mg per day is what he starts people on.

 

At any rate, I'm glad it seems to work well for some people.

 

I should also mention that we titrated up to the full dose of .075 mg daily, per our doctor's

instructions. For four days we started .025 mg once per

day, then next four days .025 mg twice per day, thereafter we used .025 mg three times daily.

Perhaps they avoided some of the initial side effects you mentioned by doing it this

way, I don't know, I am just speculating.

I also do find it interesting how Clonodine is administered differently to people, by

different doctors, but that is true of any medication I suspect.

I also notice that, 11 years ago Clonodine was not really known as a "TS" medication

per se, but now it is actually listed as being that, in most write-ups.