Clonidine

[juliegee]

Mack, my 16 y/o has recently started clonidine. He started with a half tablet and is now up to one tablet .1mg at night. We aren't sure if it's helping. It seems to make him sleepier at night after he takes it. He says "I get better use out of my sleeping hours." That's good as chronic fatigue is one of his issues, BUT he's worried that it's making it harder for him to get out of bed in the AM & get ready for school. That's bad.

Maybe, overall, he's functioning slightly better- no big change really. He's on 3-4 weeks now. How did it make you feel? What changes did you experience? We're trying to decide if he should stick with this med.

Thanks-

Julie

[bjt22]

I've used the Catapres patches for several years. This does offer a superior delivery system that maintains a better level of the medicine in the blood stream. I pay nearly $200/month for this as insurance does not fully cover the name brand.

This has been a very good drug for me. Alone, it's not enough to bring down my heart rate, keep my blood pressure steady or stop chest pain. It is helpful, however....I found that out a couple years back when I tried to reduce the dosage. Forgot about how much worse I felt without it.

I've come to the point that I except medicines that might just provide a little improvement or relief. I've long since quit looking for that magic bullet. If a small dose of clonidine helps your son to sleep, well, even if he doesn't get anything else out of it, that might be enough to justify taking it. Before I started with the Catapres, everyone told me that I'd have a couple weeks in which I'd feel AWFUL when first starting it. That really didn't happen. Ofcourse, I was so sick at the time, I'm not sure how I could have felt a heckuva lot worse. I started on the patch with the smallest dosage and there was no difference in symptoms at all...so we moved up to the next step. Then it started helping...and it still didn't make me feel "worse" for any length of time. Maybe if your son continues to use this he'll start to see side effects diminish soon.

[mjan]

Hi Julie

Have I told you lately what a GREAT mom you are?

I am taking clonidine nightly. Started with hit as a PRN ONLY if my tachy/autonomic symptoms started especially when working.Wished I had it a long time ago.

BUt now that I take it nightly rather than another tablet of Atenolol.. it helps me sleep and I am not groggy any more. At least not from that.

Hope your son gets used to it. Does he take it late at night? Maybe back up the time in the evening so its not so bad in the AM.

Let us know k?

Warmly, Jan

[Lizzegrl]

I also use the patch and when I first started, I had a bit more tiredness, but it got better after the first month or so. It is supposed to provide a much more steady dose so that there aren't as many ups and downs as there are with the oral. It hasn't been a miracle drug, but it has helped a bit and I'm much like bjt, in that I will take any improvement! I do find that if I don't replace it soon in time (if I forget to get a refill and am a day late) I do get a severe headache and get very tired.

[ramakentesh]

Clonidine is usually used in hyperadrenergic POTS to decrease sympathetic activation when orthostatic. In some people it seems to really help during the day, whereas for others it increases the drowsy feeling already present.

Ofcourse, as with most medications used for POTS there arent any randomised trials or anything other than empirical data.