Clonidine

[bluegirl]

Hi

Does anyone have any experiences with taking a medication called Clonidine for PoTS please?

My consultant is considering putting me on it as I appear to be developing high blood pressure whilst taking midodrine. I also take Ivabradine, fludrocotisone, and verapamil and numerous other meds for my autoimmune conditions.

Thanks in advance

[IceLizard]

Hello bluegirl. I just started the clonidine time-release patch last Thursday. I had developed high blood pressure on Florinef and plenty of salt.

Pros so far:

It reduces sympathetic stimulation, so I am less anxious and moody, my muscles are relaxed instead of tense, and I am less shaky (usually)

I don't need to sleep as long.

Cons so far:

My heart rate is higher now when standing and I don't tolerate being upright as well. (Worsened my OI)

My doctor has asked me to combine this medication with a beta blocker to reduce my heart rate, but I am scared to try it just yet. I have the feeling that it would cause me to have more low BP spells (I have those as well).

[gjensen]

I do not have a formal treatment plan in place, so I cannot remark on much. I am taking Clonidine however.

It has tempered my "spells" in frequency and intensity. I also have not had any noticeable bad effects from it. My mouth gets a little dry as it kicks in, and that is about all.

I have noticed that if I split the dose throughout the day, I get more consistent results. I am not making that recommendation.

It does come in a patch form for more consistent results, but I would not want the patch without first seeing if I tolerated it well.

Right now, I am glad that I am taking it. I do wonder if it is not contradictory in my case.

I had wondered if clonidine and midodrine was and could be prescribed together. It had seamed to me that they would contradict each other, but everything with POTS seams contradictory to me.

I do not seam to tolerate beta blockers well. At least the one I have tried. I also was not a good candidate for Mestinon, so I am hoping that clonidine can remain on the table for me.

Hopefully someone with more experience will reply.

[gjensen]

I was typing while IceLizard was posting.

[bellgirl]

Funny that bluegirl and bellgirl, would be wondering the same thing!! I just started on it today, Clonidine .1mg twice a day, decreased my Losartan from 100mg to 50mg daily, off of Hydrochlorothiazide 12.5mg for swelling in my ankles, which really made me dry, but decreased fluid retension. I'm also on a Beta Blocker, Bystolic 5mg, so we shall see what happens. After I researched it, I approached my doctor with the idea of lowering my losartan to be on it, so that I would have medication for my spikes in blood pressure affecting two areas of my body instead of one. I liked the idea that it would reduces the sympathetic response in my brain, and work on the excretion of aldosterone, catecholamines and reduce renin, since my sympathetic nervous system is more of a problem for me, and work on the excretion of aldosterone, catecholamines and reduce renin, in adrenal glands and kidneys. Losartan works exclusively on the kidney, and I thought Clonidine might help with the adrenaline surges I continuously experience around the clock. We shall see some sort of result in a few days, so I'll keep you posted. All antihypertensives cause dryness, unfortunately. I've been on them for about 13 years now. I'm always researching, because we are our best advocate!! If your doctor wants to put you on a beta blocker you might want to consider to ask for one that is cardioselective, so you won't be as short of breath. This is all a balancing act, gjensen, so yes, they seem to contradict one another. I'm on an antidepressant so I won't be so sluggish on my beta blocker, go figure!! It actually helps with the reuptake of norephinephrine and dopamine, too, and does give me more energy to do more, but the problem is if I do too much with this, I'm in trouble, and suffer the consequences later, so I try to limit myself to one or two tasks a day. Some days I've used all my spoons before I even get out of bed, but the sun is always shining, even if it is behind the clouds!

[gjensen]

bellgirl, what I call my spells is adrenalin surges. Clonidine has mostly solved that for me. I am taking .1mg per day. Nothing else yet.

[bellgirl]

Well that's great, because that is why I wanted to get on it...How long did it take you to get used to it, and do you take it in the morning or at night, gjensen? I'm thinking 2 doses may be too much for me, but I'll monitor my B/P closely, because she cut my Losartan dose in half. She said I could experiment a bit. I'm a Retired RN.

[gjensen]

Bellgirl, I was cautious because my experience with the beta Blocker was not good. I took half of what they told me, and still had very low blood pressure. The longer it was in my system the more it dropped. It gave me fits breathing to.

So, I told them that I wanted Clonidine. I was just trying to get stable until someone smarter than me could help. The spells were pretty traumatic to me. Especially when I did no understand what was happening to me.

I was a coward and took a 1/4 of the pill. twice a day, and it did not give me any trouble. Then I went to half, once before bed and a quarter in the morning. Then I went to how I was supposed to. Once per day, but I found dividing across the day helped my HR better.

It has not dropped my blood pressure noticeably, but I am not taking anything else at all.

This condition has taught ne to be cautious, and I am sure that you know better than me.

You could not take Clonidine from me right now.

[bluegirl]

Hi all. thank you for your informative replies and for sharing your experiences. I cannot take beta blockers due to raynaulds as they are contraindicated.

The verapamil is to treat the irregular heartbeats i get, together with ectoptic beats and was switchd a year ago following an electrophysiological study I had done by my cardiologist.

i have been advised that if my systolic figure is higher than 160 i need to be careful with the midodrine as it could increase the bp higher but then the medics are now wondering whether i need a higher blood pressure to actually be upright. oh its all so complicated. Unfortunately at the clinic in Dec my bp was 198/111 which is why they are concerned!

I would be interested to hear the updates whilst you are progressing with this medication.

in the meantime im awaiting a 24hr blood pressure monitor from my neurologist to see what my bp is doing. Even though i do get the high blood pressure, I still get postural drops with my bp in addition to a hr increase of over 40-50 bpm and thats me being medicated.

Thanks again for taking the time to read and post and please post any further comments you have here.

[Psalm 23]

I was started on Clonidine 0.1mg twice daily about 2 years ago. I don't recall that it took very long to adjust to it. I was absolutely amazed at how much reduced my tremulousness was as a result of taking this medication. It really does help immensely with those catacholamine surges. I can't imagine getting by without it.

[bellgirl]

The first day, just after my first dose of .1mg of Clonidine, my mouth was so dry and my blood pressure dropped to 79/43, so I decided to skip my night time dose, and take half the next morning, and my B/P increased to 98/54, which is actually functional for me. It's my "normal"...what's normal, anyway. So now I'm on .1mg/day in divided dose, 1 tablet cut in half, because it is a scored tablet. It's important to divide the dose if you take less, because it only lasts 12 hours. Mind you, that I'm still on Losartan 50mg, and Bystolic 5 mg. I was on Losartan 100mg with 12.5 Hydrocholathiazide, but I told her I was too dry with the diuretic, so she cut that dose in half. It's going well right now, without any trouble. I've had one surge, and that's when my dog woke me up abruptly at 5am to get under the covers, since she was cold, and she disconnected my humidifier from my Cpap, pulling the tubing going from my mask to the machine...lol. She scared me to death!! All is well with my soul!!

[Goschi]

I take Clonidine since 2 weeks now (0,04mg 3 times a day) and start to get slowly angry about this med, to be honest.

It is thought to get my adrenergic spells under control and thus "make my pots better", according to my doc.

The first is done somehow, the second - well not at all, I am afraid. My HR goes up higher than before when I am upright, my legs get shaky and weak from the first second I stand up. It almost seems to me, as if Clonidine does some vasodilation, as I can feel more blood pooling!? But why would it be rxd for pots then? Shouldn't it rather act as a vasoconstrictor?

Not to mention it makes me very tired, almost lethargic and slightly depressed. Also some strange "hallucinations" occur quite often. Can only be from Clonidine as I never had them before.

[IceLizard]

Goschi,

I also had the some of the same issues with Clonidine. It worsened my orthostatic intolerance and made my heart rate faster. It is a vasodilator, btw. I also had trouble with depression. I have stopped this medication, and now use Librium to help with adrenergic spells, which I seem to tolerate better.

[BSmith85]

I have taken clonidine but it was prescribed pre-diagnosis when the physicians were just attempting a quick fix for my elevated BP's. My diagnosing cardiologist advised I stop taking it due to the "rebound" effect it can have on BP. It always helped temporarily but I am glad I am on my beta blocker now.