clondine

[footballguy]

How long did it take to notice a postive change in your or a loved one? I think im on day 4 and don't notice a great amount of change. Does it take awhile to work?

[crazy]

My son was on clonidine for about 2 weeks. The first week it increased his tics. The doctor upped the dose and my son was practically a zombie. My DH demanded he come off the medicine immediately. That is how I found this board. We needed alternative treatment.

[guy123]

About 7-10 days. Do a search for posts by me with keyword "clonidine." i'd link for you but i'm browsing on my phone and i cant copy paste.

 

how much do you weigh and what dose are you on? what time of day are you taking it?

 

clonidine is subtle. one day you will just notice "whoa, i havent ticced in the last 20 min!" At least thats how it worked for me. I used to blink hard at least once or twice per minute, every minute of every day.

[twobit]

Football,

Clonidine didnt do anything for my son either, but we didnt give it much of a chance. Just spaced my son out and turned him into a zombie, so we stopped after one dose. The effects were awful. Who gave you the scrip? Our son got his from the ER doc. I got the feeling it was a knee jerk reaction. She didnt even tell me to go see my regular ped. Just saw his motor and verbal tics which had just started within the past 72 hours and gave us the scrip, then told us that tics usually go away on their own.

[lynsey]

Clonodine results vary greatly from person to person, just like TS varies greatly.

 

Some people see rather immediate positive results, within a few days to a week.

Some people see increased tics. Some people have more pronounced sedation or other side-effects.

It is all dependant on the dose, and how your body may react to this medication, as in any medication.

Some people see slow improvement in tics and other behaviours, over the course

of a month or two. My TS doctor had told us you should give it a few months to

really know. This is hard to do when you are looking for immediate benefits.

My sons were on a very low dose for years and I noticed the benefits. Because

it was low dose, there wasn't complete elimination of tics, but I believe it helped

lessen their frequency and severity.

 

If your children are like zombies on Clonodine, it could be that the starting dose

was too high. We started on a micro-dose, and titrated up to our regular "low"

dose over a two week period.

Did you titrate up? Ask your doctor about trying a lower dose, and titrate up

to it, and see how this works.

 

Lynsey

[Chemar]

my husband was on a very low dose and it made him psychotic.

[faith]

I am curious as to why clonodine seems to be the one prescribed and that some are trying rather than the "tenex" which is a similar blood pressure med used off label for ts and tics and I believe does not have the sedative effect. For those that have experience with the clonodine, was tenex an option?

 

 

Faith

[myrose]

My daughter was on clonidine in the beginning as well. She seemed okay but then complained of always being tired. Shortly after starting she would have BAD nightmares that woke her every night. I called the neuro about this and was told it was a rare side effect but indeed a side effect. We went in immediaitely for a check up and then found out how low her blood pressure was! Even on that very low dose.

She was then taken off and thats when they offered the tenex.....I thought they were actually CRAZY!!!!!!!!!!!!

The blood pressure thing was just too scary for me. Also it was HORRIBLE to try and get some blood out of this girl when we were trying to check the titers. The nurses attributed this to the blood moving so slow???? Made sense to me, took forever to fill just 1/2 vial and she was also screaming through the whole thing. Isn't the med for someone with HIGH blood pressure....this would slow it down to normal I am assuming, so when its taken by someone with normal blood flow then you must end up with low pressure?

Do people with low blood pressure also take meds to speed it up???? I don't understand (as usual)

Maybe I am just not awake yet, but to me lowering normal blood pressure can not be a good thing can it???

[lynsey]

I had heard about Tenex through my friend, who had read about it online, and I

certainly asked the doctor about it but at that time I don't think it was available

in Canada yet, or it hadn't been approved by the Canadian Food and Drug

Administration. Had it been available here in Canada, I would have tried it.

 

The doctor always checked my sons' blood pressure at regular intervals while on Clonodine.

Their pressure was never a problem while on Clonodine (i.e. it never went too low).

Nor did they complain of anything like tiredness or dizzyness.

Again, I've talked about my friend whose son was on a much higher dose,

and his pressure wasn't a problem either, but he did have fatigue, which you might expect at higher doses.

 

However, as you can see from the posts, Clonodine results seem to run the gamut.

Everyone seems to take different doses, and the results can be anywhere from good

to bad, and a whole range in between. If you read the literature on Clonodine as regards

to treating tics, it is talked about as being generally a first-line treatment because of the

low incidence of side effects, but it also can be the least effective out of the other meds available.

My personal opinion (and it is only my opinion) is that since it seemed to be the medication to try with the least

potential side effects, it was worth a try, because I knew I could always take them off without too

much trouble. Other medications require you to titrate off very slowly. Certainly there are much

stronger medications with more potent side effects, and people are willing to try them too,

if they feel they must have relief. It is up to each individual family. I certainly felt Clonodine

was worth a try, and it has been beneficial to us. Again, our sons doses were

one .025 mg tablet, three times daily.

 

Lynsey

[airbucket]

myrose:

 

clonidine is a med for those with high blood pressure. when it is given for other reasons, like tics, it is given in a tiny dose because a little lowering of normal blood pressure is not a bad thing, not dangerous, but it should be monitord. in other words, if the clonidine is helping, then the childs b/p being little on low side is not a dangerous or scary side effect. This is simply what i learned when clonidine was prescribed ot me for anxiety long ago. when i took it, it just made me literally pass out. a tiny bit would calm me down but left me too tired to care if i was calmer or not -

 

good luck, i was going to ask my sons ped. about it for his immense anxiety and on edge-ness.

 

My daughter was on clonidine in the beginning as well. She seemed okay but then complained of always being tired. Shortly after starting she would have BAD nightmares that woke her every night. I called the neuro about this and was told it was a rare side effect but indeed a side effect. We went in immediaitely for a check up and then found out how low her blood pressure was! Even on that very low dose.

She was then taken off and thats when they offered the tenex.....I thought they were actually CRAZY!!!!!!!!!!!!

The blood pressure thing was just too scary for me. Also it was HORRIBLE to try and get some blood out of this girl when we were trying to check the titers. The nurses attributed this to the blood moving so slow???? Made sense to me, took forever to fill just 1/2 vial and she was also screaming through the whole thing. Isn't the med for someone with HIGH blood pressure....this would slow it down to normal I am assuming, so when its taken by someone with normal blood flow then you must end up with low pressure?

Do people with low blood pressure also take meds to speed it up???? I don't understand (as usual)

Maybe I am just not awake yet, but to me lowering normal blood pressure can not be a good thing can it???

[guy123]

I am having overall good results on .05mg per day and I am considering discussing with my doctor reducing that to 0.025mg per day (1/4 of a pill) to see if that dose is still effective for me.

 

Footballguy it's been a few weeks now. Have you noticed anything else from the clonidine?

[footballguy]

I am having overall good results on .05mg per day and I am considering discussing with my doctor reducing that to 0.025mg per day (1/4 of a pill) to see if that dose is still effective for me.

 

Footballguy it's been a few weeks now. Have you noticed anything else from the clonidine?

I actually went off of it. Wasn't liking it and prescription meds In general even thoe my dad realLy wants me to go on them