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clonidine


DancingLight
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hello all!!

i have searched on both this site and ndrf to find out other folks' experiences with this med...but didn't find too much.

i was wondering if anyone else had tried it and what their experience was with it.

also, what dose did/do you take.

sorry if this thread has already been discussed, but i couldn't find it...if it was, please guide me to the earlier discussion on it!

my pots doc has suggested that i take this drug b/c of my overactive sympathetic outflow. i know the basics of the med, etc. but wanted to hear personal stories...

the drug seems a good fit for me b/c ANY activity regardless of whether it is good stress or bad stress, emotional, physical, social, causes me extreme responses of my heart pounding, sweating, etc.

thanks all...

emily

PS so, i DO see that you took it morgan...but not too much other info...

sorry for my brain fog.

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I took it years ago. It didn't help much, but it didn't hurt any either. The patches did leave bright red marks on my arms, but they don't do that to everyone. Hopefully it will help you. Best of luck.

Michelle

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i took the oral dose. 0.05 mg a day. a very tiny dose. it did slow my heart rate down slightly but didn't really help my bp. when we upped it, it made my fatigue worse. but i had no other side effects at all, which is quite unusual for me. i just stopped because we were using it mainly for bp and couldn't take the higher doses. a pretty benign drug tho. morgan

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thanks you two!

morgan, i glad to hear it is pretty benign!

like you, i have had awful reactions to most meds. so, i was glad to hear that it didn't have any really nasty side effects.

i feel like it is worth trying. most posts i have read seem to say that it might not have helped much but didn't have any awful side effects either. so, i think i will give it a shot.

my system is going wild right now, andi hope it might calm it down a bit.

morgan...do you remember a while back you said you thought tylenol was one of the worst drugs/most unsafe out there? i was just wondering if you could give more of a scoop on it? just curious. i always pick tylenol over advil or aleve...

emily

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emily, it was while we were having discussions on benzos as i recall. that is such a touchy subject. i am a person who believes that different things work for different people and we can tell of our experiences, but shouldn't terrify or tell people what they should and shouldn't take. i think sometimes comments made on these sites will cause a person to feel ashamed or afraid to take something that can actually help them. i was trying to make that point by saying ANY drug not taken properly can have serious consequences. there are doctors who will push drugs on people when it is not in their best interest, but anyone who's dealt with this illness knows it's pretty much left up to us to get information. i never get my info from just one site either. that is just the forward to what i said about tylenol. i take it too. over 4 grams of tylenol a day can be lethal. it is very toxic to the liver. it is insidious too. it is not a quick thing. so my point was, even otc drugs that people presume to be fairly inocuous can be just as or even more dangerous than drugs you need scripts for. i am not saying you shouldn't take tylenol or even not take it every day. it is the amount you take that can cause problems. taking some everyday should not affect people not allergic to it, but over 4 grams and your liver has a very hard time metabolizing it. so if you take 500 mg tabs, it's not a great idea to take more than 8 a day. so that was the point i was trying to make. sorry if you misunderstood. this is a very stange illness and what works really well for some, is like poison to others. we have to decide individually what it is that does work and doesn't and unfortunately, we have to do a lot of our own research. hope that makes it clearer for you. so if tylenol helps you, that's great. it helps me too. :) morgan

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hey morgan,

thanks! i appreciate that clarification.

i did know that tylenol in large doses consistently was toxic.

i usually only take 1 or 2 eight hour gel tabs at bedtime....unless i am really needing some during the day, but not often...so i think i am okay!

yes, i remember the benzo topic, and i agree with you. it is a tough one, but i agree about not scaring people...sometimes xanax is the only thing that helps me, but i don't take it all the time. we are all so different in what works.

anyway, i took my first dose of clonidine tonight, and i only took .05 mg...just like you did. that is what he prescribed for the first week, and then up it to .1 mg if i tolerate it.

i am very sleepy from it! so, off to bed! but otherwise, no problems yet! only been a couple of hours though!

emily

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emily, i stayed on the .05 for a little longer than a week. more like a month. it's funny, because i saw my doctor yesterday and he put me on a clonidine patch! the lowest dose is .1 and that's what it is. he thought i wouldn't have the peaks and valleys you get with the pills and if my bp dropped like it sometimes does now, i could take the patch off as opposed to just waiting for the pill to wear off. the only side effect i've had is a weird taste in my mouth. not even the fatigue increase i had with the pill, so maybe it would work for you too. the patch is very tiny and easy to hide. and it hasn't irritated my skin so far. you wear it for a week then take it off and put on a new on. so it's pretty easy too. i am really hoping this one will help even things out. good luck to you with it. keep me posted. :) morgan

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  • 2 weeks later...

i just wanted to update on this med....just in case anyone else is thinking about it or wants to know more about it...

i started at .05 mg and then have now upped it to .1 mg.

it really has made the extreme heart pounding/fight or flight better. i still get it, but it is not nearly as extreme. and i feel better sort of having this med prevent the attacks and keep them under control more, rather than having to wait until i feel so awful and take a xanax. this way i can save the xanax for when i really need it and it will be more effective that way.

also...the biggest bonus on this med...is that i have not had a single stomach ache at night since i took it, nor do i have any problems goign to the bathroom in the eve before bed. okay, so i'm talking about my bowels now and pee in my other posts....sorry!

but, anyway, this med can help some people with delayed gastric emptying. i ddin't know that was what was going on with me, but maybe it was...all i know is that it feels great not to have a stomach ache for hours every day and not to be "clogged up"!!! :)

the side effects are tolerable (i already feel so bad right now that i figured, i might as well try the drug!)...the dry mouth is yucky...but that is not a major problem.

and i am still in the "adjustment" period for the med, so am even more spacey, fatigued and dizzy, but mostly just fatigued....hopefully i will conitinue to adjust more.

this is the best i have tolerated any drug in recent memory, so for me it is a good start. ( i hope i didn't just jinx myself!).

it is really nice not to have such extreme fight for flight...in which i think my little heart might take flight outside my body somewhere! i can feel it in there saying "hey, let me out, i'm working so hard...i need a little breather!"

okay, just an update.

thanks y'all!

emily

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  • 6 months later...

soooo....with all this discussion of adrenaline/fight or flight...i wanted to bring this topic back up to the top b/c so many of us seem to have questions about this drug right now...

i took the clonodine for about 3 months and then, boom, after surgery it is what stopped working and caused me the horrible POTS when i couldn't move without a spell. my bp was dropping way too much at night.

but, before that....i LOVED this med and my doctor and i are discussion whether or not to give it another shot now that i am farther away from surgery.

my other choice is cozaar. i figure either way...it's a new drug, new experience, either one can cause good or bad effects! so, i may try the clonodine again.

it helped greatly with sleep, the anxiety, and GI problems.

i would like to hear the scoop from other folks...

especially in regards to the patch vs. the pill!

i have only ever tried the pill form...

okay, later alligators!

today, i am actually NOT in major adrenaline mode and have been able to go on the computer more than any other day since surgery! progress!

emily

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Hi Emily,

it's great you're feeling a bit better today. Actually I'm off to bed right now bit I saw your topic about clonidine. It took some time before I realised it's an old one but I have tried the clonidine pills as well. I can't remember how much I used but what I CAN remember is that I FELT pretty good but it didn't WORK very good. Hope this makes sense to you. I stopped using it, because my former neuro wanted me to try something else and it didn't get me out of my wheelchair. I hope you can use this information. Wishing you the best,

Corina

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Emily, at the time we posted this, I had just started the patch. If you have sensitive skin, the patch is not for you! I no longer take it, as I just couldn't get used the dose high enough to help. It just increased my dry mouth and fatigue too much. But it is a great drug for a lot of people and highly recommended in the NDRF literature in conjunction with a benzo. Like xanax. I finally just told my doctor I don't want to try anything new and will just stick it out without anything. Except meneires meds. But a lot of that is not meds, but diet too. I think if it helped you before, it would be worth it to try it again, now that things have settled down a little for you. It's so good to see you posting again!!!! :lol: morgan

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Oh man Emily, I think I'm going crazy! :lol: I just found out that Clonodine patches are not called Clonodine, it's called Catapres or something like that! The phramacist said the U.S. doesn't have a patent for Clonodine! Then why do they call it Clonodine if you can't even get it here!!!???? They said the NAME BRAND is Catapres and the GENERIC NAME is Clonodine. I've never heard of anyone calling a drug by the generic name when they write a prescription for you especially if they can't even get it in the US!! Why don't they just call it by it's namebrand since it's the only form you can get?

I'm so confused! If anyone can shed a light on this subject please do!

Those that have taken the patch vs. the pill or the pill vs. the patch, please let us know your experience on them and what the name of the patch/pill is...Clonidone or Catapres (sp?).

Also do you all take Clonodine/Catapress and a beta blocker together???? I read on the internet where it says not to take Clonodine with a beta blocker. I have low blood pressure, it's weird to take all these things for high blood pressure when that's not our problem!!! I know it is for some but aren't the majority of you on these meds. have low blood pressure?

Thanks!!!

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the pills are clonidine, the patches are catapres-tts. probably the reasons it says not to put them together is bp or lower heart rate or something. There are zillions of people out there that take combo drugs. If you don't know if your doc knows if it's okay, just ask your pharmacist, mine are always happy to answer those kinds of questions. morgan

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Oh!!! :( Good to know!

Clonodine - Pill

Catapres - Patch

Just got my patches so I'll keep you posted on what they do. I have Patch #1.

Well crap, my patches say Catapres (clonodine) on them so they must be called both. Oh who cares!

What Emily and I want to know is if you took the pill or the patch and what it did to you...helped you or worsened your symptoms.

Ernie, did you take the pill or the patch?

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I took both .05 of the pill and .1 of the patch. I did okay on the pill but when he gave me the higher dose patch, I got a lot more fatigue and that awful dry mouth. It just made me feel icky all over. The reason he switched is because if the patch bothered me, I could just pull it off, wash the area and it would be out of my system a lot faster than the pill. The .05 wasn't making any difference, but the .1 was too much. Go figure. morgan

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Well I have been on the .1 patch since 4 pm yesterday and it is 10 am the next morning. Last night I felt an erie calm, like the calm before the storm. Which was somewhat welcome because I'm use to feeling anxious and wired from major adrenaline rushes. I felt kind of light headed and spacey. I took some ambien 5 mg (like everynight) but it didn't work so I had to take more than normal (another 5 mg). With each passing hour my blood pressure got lower and lower but my heartrate kept increasing so I tried to take a beta blocker (Nadolol 5 mg - which only makes my heart feel like it's beating through glue so I never use it but I was desparate) and my last bp was 71/51 and heartrate 54. I felt like I was going into a coma. Now that my hubby has fixed me some eggs, I am starting to feel a little better but still groggy and have an underlying hyper feeling. I just feel strange. I'll stick with the patch though and see if over the next few days I feel better. I'll keep you posted. I don't feel bad enough to stop it so maybe my body just needs to get adjusted.

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I was started on the patch .1mg last fall along with an ssri and for about 6 weeks I did great, hr was normal, bp wasn't too low, was feeling like my oldself, then I refilled my prescription and the patch caused me to blister, my cardio changed me to the pill .1mg twice daily, never really seemed to get any better, been playing the add a med take away a med game for months now. last week tried .2mg patch, bad bad :blink: idea, so dizzy I could barely stand, heart racing out of control. doc had me come off patch and wean down with pills, off completely, hr all over the place, right now as I type I'm 135-155. just make sure your doc starts you low. hopefully you'll get where I was during that 6 week period and stay there.

much luck and support

joyce

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I've been on the patch two days now and yesterday afternoon I felt awful! I was very lathargic and weak and couldn't even hold my head up. At dinner time I could barely chew my food and I my bp was in the 60/40s range. Heart rate 58 (mine's usually 110). I emailed my doc and he said to take the patch off or cut it in half (I'm on .1), so I cut it in half. I had a much better night and even though my bp is still really low, I feel SO much better. Go figure. I'll keep you all posted.

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tammy,

are you still out there?????

steph are you still out there??????? i hope you aren't having your next surgery and we missed giving you a 'send off'!

i wanted to see, tammy, if you were still giving the clonodine a shot????

or if that 'ol bp just stayed tooooooo low for you??? that was a bit low! i would have been unable to tolerate that as you did...

i didn't know you could cut the patches in half...cool.

i am still 'waiting out' things...

am lowering my dose of corgard first, then will see...

sorry i haven't checked on you sooner...have been thinking about you...

i'm drowning in pots and can't keep up with this site or my email!

oh well...such is life1

later alligator!

emily

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Hi Emily! So sorry I didn't post on this!! I cut the patch in half .1 to .5 and even though I did notice some benefits, like a calmer feeling, it made my heart beat harder and I was more constipated (and I'm already in major pain from that daily), plus my blood pressure just kept getting lower and lower. So I took it off last Thursday. I may try the pills at some time.

Right now I am trying a new blood pressure med (it's for high BP as well...errrr, why can't they make as many low BP meds as they do high?? :)). It's called coreg. I'm taking a tiny dose and so far it hasn't lowered my BP but hasn't helped either. I feel a little dizzier and spacey on it but will keep trying it.

So sorry you are having SUCH a hard time in your POTS hole! Steph and I are praying for you really hard! Thanks for checking up on us. That sounds like something you'd do, check on us in your time of need!

Take care and I'll check in with ya soon!!!

(ps: steph hasn't had her latest surgery yet, she'll keep you posted on that)

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Guest Julia59

I wanted to chime in a bit. In the beginning of my POTS I was so hyperadrengic, but not diagnosed yet. Docs tried to put me on Paxil, Ativan, and risperdol. UGGGGG---the risperadol is an anti-psychotic drug---now you know what they were thinking. The only one I tried was the Paxil and ativan. The paxil made things worse, and the ativan helped a tiny bit with anxiety, but actually made me sicker in other ways, so I didn't take it very long.

Finally when Dr. Grubb diagnosed the POTS he put me on Wellbutrin........

Now this drug isn't tolerated well by a LOT of people----but go figure----I tolerated well. I am very much the same as you Emily----extremely sensitive to drugs!

We are now trying to manage my pain with topamax. I couldn't tolerate the small dose of .25 mg. It helped with the pain, but I was spacey and had a very sleepy kind of fatigue. The Doc will now try .15 which is a dose for babies. I can't believe it---i often wonder if it's in my head, but Dr. Grubb assures me it's not. I also have hashemoto's thyroid----which is also notorious for making people sensitive to meds. A double whammy for me. I can not tolerate narcotic pain meds at all.

One problem with the wellbutrin-----WEIGHT GAIN!

I asked Dr. Grubb about going off it, and he never really responded. I don't think he wants me to do that with everything I have going on.

I'm wondering if the clonidine would work out better without the weight gain side affects. However, I am on a beta/blocker-propranolol----can the two be mixed?

I have been on propranolol for 15 years---would love to get off that! The only side affect I had on that was sluggishness---and you guessed it--WEIGHT GAIN!

I need a DRUG MAKEOVER!

Dr. Grubb isn't overly concerned with weight----he's more concerned with keeping me stable.

Julie :0)

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Julie, are you saying you want to go off of wellbutrin and take clonodine instead? Cause clonodine is for high blood pressure (even though I have low, they were hoping it would balance me out). I just needed that question answered first. Since one's an anti-depressant (wellbutrin) and one's a blood pressure med (clonodine), you can't substitute one for the other. Clonodine seemed to make me calmer and why I don't know, but it wasn't because it was an anti depressant.

As far as taking clonodine with a beta blocker, yes you can. Lot's of people do.

Blood pressure meds help to lower or raise BP, while Beta Blockers are used to slow the beating of your heart (for tachy).

I'm super senstive to meds also and cannot seem to find anything that doesn't make my symptoms worse!! Good luck.

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