Clonidine

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Clonidine

Postby SquirmingSusan » Sun Aug 11, 2019 4:08 am

I'm surprised that this medication doesn't have heading in this message board yet. At least, I couldn't find one.

Is anyone else taking this and having success with it? I was getting desperate because between methadone and kratom, I'm not sleeping at night lately. In desperation, I borrowed a half a clonidine from my dog. (Ahem, I know, I don't recommend this, but I haven't been able to get in to see my neurologist for a while.)

This stuff is fantastic. I'm sleeping through the night and taking less than half as much kratom, and no methadone. Needless to say, when I do see my neurologist in a couple of weeks, I'll be asking for my own prescription. I may also drop him an email in the meantime. My blood pressure tends to run a bit high, especially when at the doctor, so hopefully it will help knock that down a few points.
Susan

stjohnh
Posts: 983
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Clonidine

Postby stjohnh » Sun Aug 11, 2019 12:13 pm

I haven't. I scanned the search results for clonidine, seemed like it had been tried a fair amount and a few had good results, most didn't. Keep us posted.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Clonidine

Postby ViewsAskew » Sun Aug 11, 2019 7:36 pm

It used to be brought up LONG ago - like the early 2000s. I think when the DAs became de rigueur and then the gaba trio was found effective, all energy into those other options completely stopped.

A few ppl here and there have talked about it, but not often. Over time, we have had ppl with ADHD who found that being treated helped resolve their RLS. Some versions of clonidine are used to treat ADHD, do that sort of makes sense.

Glad it is working!!! I have noticed that my BP is high when I drink coffee. I originally just stopped drinking coffee when I went to the drs office, lol, so it wouldn't be high, but after some reading, I think that I should likely treat it. I wonder if I can ask for clonidine specifically instead of something else...it isn't one of the common options these days, I don't think.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 575
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Clonidine

Postby QyX » Mon Aug 12, 2019 8:23 am

I've tried Clonidine like everything else that could work in theory. It did not work for me.

It is well known that Clonidine can help with sleeping disorders, especially when connected to ADHD.

However it seems that in most cases the hypnotic properties don't last very long and drugs like Clonidine have their own unique set of side effects when tolerance kicks in and you have to increase the dose. Nevertheless, please keep us updated. I experimented with this drug for quite a bit ... unfortunately no luck.

Please keep us updated. Clonidine needs to be investigated further. When you already tried lots of stuff and nothing is really working, Clonidine is always worth a shot, in my opinion.

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Re: Clonidine

Postby SquirmingSusan » Tue Aug 13, 2019 2:39 am

I've been dealing with augmented RLS for a long, long time. Have gone through the whole litany of medications, and have mostly been managing with kratom, with an occasional boost from methadone. Oddly, when we traveled to Japan last fall, I had to get a prescription for methadone because kratom is illegal in Japan. My neurologist is willing to prescribe methadone, but is also very happy to have me take kratom. Nothing is working lately, so hence the clonidine. It's likely time for iron infusions too.
Susan

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Clonidine

Postby ViewsAskew » Tue Aug 20, 2019 9:31 pm

Well, went to doc the other day for the eczema and my BP was high (often is after caffeine). When she said it was high, I said I knew it was after cofe and she asked, "So, what are you going to do?" I said I could stop coffee...then remembered this. I said, Hey, how about clonidine? I can take it only when I have coffee if it gets high and it might help the RLS. She agreed.

I used it three days in a row - same meds the first night just in case. Second night reduced methadone (not the pramipexole) by about 1/6. Same, third night. Fourth night reduced it by 1/3, still same pramipexole dose (I am in a phase where I get about 50% coverage from each, so, not a huge decrease, but glad to get the methadone down). Then I saw the hematologist that day. Nurse took BP and said, "Your BP is a little low - 98/62."

Huh! I guess it lowered it, alright, lol. Today instead of just taking it when I had coffee, I tested my BP. It was 126/78 - didn't seem high enough to take one. But, if it IS helping reduce the methadone, I am conflicted.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Re: Clonidine

Postby SquirmingSusan » Sat Aug 31, 2019 4:54 am

That's great if it helps you reduce the methadone, Ann!

I did get my own prescription, and it is very much a miracle drug for me. I had no trouble talking my neurologist into prescribing it, especially since my blood pressure that day was 148/98. (But I had ridden my trike 15 miles to get there, and had raised my body temperature and been stung by a bee, so who knows what was going on.)

My ferritin was 8 and my iron saturation was 25%. No wonder I get out of breath riding my trike and walking up hills. I start a series of 3 iron infusions on Wednesday.
Susan

stjohnh
Posts: 983
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Clonidine

Postby stjohnh » Sat Aug 31, 2019 2:13 pm

SquirmingSusan wrote:...
My ferritin was 8 and my iron saturation was 25%. No wonder I get out of breath riding my trike and walking up hills. I start a series of 3 iron infusions on Wednesday.


Are you anemic? Very likely you are with a ferritin that low. If doc didn't say, what was your hemoglobin or hematocrit, those are the tests that tell if you are anemic.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Clonidine

Postby ViewsAskew » Tue Sep 03, 2019 3:53 pm

I continue to take 33% less methadone, so am happy about that! I think I might be able to go a bit lower as I have NO symptoms, but until I get used to the AD prescribed for the fibro, I am keeping things as they are.

Your ferritin is definitely low! Yay for the infusions.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
Moderator
Posts: 7649
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Clonidine

Postby Polar Bear » Tue Sep 03, 2019 5:38 pm

You can just feel the joy when one of us managed to lower a medication.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

User avatar
SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Re: Clonidine

Postby SquirmingSusan » Wed Sep 04, 2019 12:44 am

stjohnh wrote:
SquirmingSusan wrote:...
My ferritin was 8 and my iron saturation was 25%. No wonder I get out of breath riding my trike and walking up hills. I start a series of 3 iron infusions on Wednesday.


Are you anemic? Very likely you are with a ferritin that low. If doc didn't say, what was your hemoglobin or hematocrit, those are the tests that tell if you are anemic.


He didn't test directly for anemia, just iron levels and ferritin. They are all very low. I know that low ferritin can cause exhaustion, even without being anemic. I'm just looking forward to turning down the intensity of the RLS a bit.
Susan

Icantsleep
Posts: 134
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Clonidine

Postby Icantsleep » Thu Oct 10, 2019 4:36 am

This interests me personally, as I've been prescribed 0.025mg clonidine up to 4 times daily for my tramadol taper/withdrawal

I may take it solely for this reason though , as my BP is normal or often low .
My family doctor said it would be high during withdrawal

I think I'd consider it long term if there wasn't the hypotension factor
AFAIK clonidine is more effective in higher doses for RLS than what I've currently been prescribed

Icantsleep
Posts: 134
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Clonidine

Postby Icantsleep » Thu Oct 10, 2019 4:37 am

Polar Bear wrote:You can just feel the joy when one of us managed to lower a medication.


Yup

Absolutely


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest