Clonidine Is Worsening My Chest Pain

[janiedelite]

Last night I was supposed to start 0.1mg clonidine twice a day. I decided to take just 1/2 a pill at first, just in case. Here's what I like about clonidine so far:

- It really helps my neuropathic pain, including reducing the burning I feel in my skin as well as the aching in my skin and joints. I really want to stay on this med if only for this benefit!

- It put me right to sleep last night. It was so sedating that I doubt I'll be taking it during the day, or I might not function! But I have difficultly sleeping so I like this effect.

- It actually CLEARED UP my brain fog! Even now, 17 hours past my dose, I think more clearly. Woo hoo!!

- My facial flushing and burning are improved.

- It no longer feels like I have a band around my chest. I can breathe deeply and without restriction.

But here's the drawbacks:

- I woke up at 4am, feeling so tired yet wide awake. I did read that one of the possible side effects in addition to sedation is insomnia.

- I've had near constant chest pain since taking this. The cardiologist who prescribed the clonidine has effectively treated my chest pain the last 5 months with carvedilol. But today, I'm having to take double the amount of carvedilol in order to control the chest pain. And while I'm waiting for the next dose to kick in, I'm taking nitro sublingual for temporary relief . I called my cardio's office (of course ) and was told to continue the carvedilol and maybe even increase the clonidine tonight to the full 0.1mg.

So tonight I plan on taking 0.1mg at bedtime. We'll see how things go tomorrow. At least I do have resources at my disposal in case the chest pain becomes problematic (nitro, a helpful cardiolgist, the ER if all else fails). I just really love how effective it is against my pain and brain fog. I really want to give this drug all my effort and a good try.

There is NO other change in my routine lately, so I'm confident the clonidine is causing the increase in chest pain. But isn't clonidine supposed to HELP chest pain? Thoughts, anyone???

[janiedelite]

I'm still having chest pain that's radiating down my arm and into my jaw. I'm taking extra carvedilol which helps a bit, but unfortunately I don't think this is a side effect I can tolerate. No more clonidine for me .

[MomtoGiuliana]

Do you know what causes your chest pain?

I also get chest pain with flare ups. Sometimes just getting better hydrated helps this tremendously.

Sorry the med is not working.

[mkoven]

My most recent ep thinks that arterial spasms underlie my chest pain. These are potentially dangerous and need to be taken seriously. Chest pain caused by spasms is considered rare, but I bet it's more common in dysaut than realized. thankfully, my arteries are clean. I guess if my blood vessels are hyperreactive, it would make sense that they both dilate and constrict inappropriately. (I didn't think I had official Raynaud's, but last week at the doctor's office, right after I was asked if my hands ever turn blue, and I said no, we looked down, and they were! Like I had ink on them! )

[janiedelite]

I've always had mild chest pain since developing POTS, and since my EKG's and other tests were normal I ignored it. Hydration, salt, and compression normally are quite helpful. Then last November, I was taking mestinon and the chest pain started occurring not only during times of stress or if I'd been up too long. I went to the hospital and my troponin was up to 0.35 (anything higher than 0.1 gets you admitted). That's when we discovered nitro helped my chest pain, which would indicate that some sort of abnormal vasoconstriction is taking place. I also have other problems with constriction, and raynauds/pernio was one of my first POTS symptoms. My toes also turn blue when up too long. Wierd, huh?!

The carvedilol has been helpful in reducing my chest pain, and now I usually only experience it when up too long or under stress. When I lie down, I feel better after a bit. But with the clonidine, the chest pain wakes me up all night, is much more intense, and radiates down my arm and into the left side of my face.

Mkoven, my cardio isn't sure what causes my chest pain but does believe there's some type of problematic vasoconstriction also. He thinks my elevated norepi levels are probably the culprit, which is why we were hoping clonidine would really help me.

So far there are two meds that prompt worse chest pain for me: mestinon and clonidine, both of which either reduce sympathetic response and/or increase parasympathetic activity. You'd think that this would make my chest pain BETTER. I just wish I knew why this happens to me....

Don't we all, though?

I was reading about peripheral neuropathies and it's not unusual for folks to have abnormal dilation as well as constriction. I used to belong to an erythromelalgia support group because my hands and feet turn bright red and firey hot sometimes. Small fiber neuropathy is thought to be a major cause of EM, and quite a few of those folks also have Raynaud's, interestingly.

[janiedelite]

When I took midodrine (an alpha1 agonist) it worsened the frostbite/raynaud's in my hands and feet. Maybe an alpha2 agonist is causing the same problem, just in different areas of the body? Just a thought.

[mkoven]

Our different responses to meds are really interesting. Midodrine helps my cp, as does compression, slat/fluid, florinef. I think my body reacts to a drop in bp by overcosntricting-- but if I have a med that helps it to constrict (midodrine) a bit, then my body doesn't have to go overkill? I frankly have no idea. I also get cp in the middle of the night if I go from upright (to use the bathroom) to supine. I have to lie on my side and gradually let whatever redistribute, and then on to my back. Like too much blood rushing back to my upper body at once freaks my arteries out? Who knows... Knock on wood, the combo of norvasc, midodrine, and florinef seems to have improved things, though it's odd to combine midodrine and norvasc.

[janiedelite]

Knock on wood, the combo of norvasc, midodrine, and florinef seems to have improved things, though it's odd to combine midodrine and norvasc.

Thank you so much for sharing your reaction to meds. It's comforting to know that I'm not alone in this. It's so frustrating. I'm thankful that my cardiologist hasn't given up on me yet, but I don't think he has any more options right now. Sigh

[mountain girl]

I was interested in the chest pain issue since that has been one of my main problems. While I have never taken Clonidine, it seemed other meds actually increased my chest pain that were supposed to help. I felt that my cp was worse on midodrine and on ritalin. I take Bystolic 2.5 mg. and Florinef 0.1 mg. It seemed that when I went to higher doses on these same meds that I had more cp. I always thought maybe it was in my head, but after reading others responses, I am not alone it seems. I also experience the chest pain if I lie supine after being up all day and have to lay on my side. Not that I don't have cp other times, but it seems worse then. My legs also ache when I go to bed, so I always thought it must have somethin to do with the whole circulation thing. Anyway, it was reassuring to read that some of you also have had unusual reactions to meds that are supposed to help.

[janiedelite]

Thank you for sharing, Mountain Girl. It has been my experience that I'll try a new med, feel good and be encouraged, but then the chest pain or circulatory problems hit the fan. Thanks again.

I just got a phone call from my cardio. He said that since my other symptoms are being helped so greatly, as long as the chest pain is mild and managed by the carvedilol and nitro that he'd like me to continue with just 0.05mg clonidine at night only. Of course, I'm to call him if the chest pain isn't manageable. He hopes that this side effect will diminish with time, and then we can increase my dose.

I hope that is the case. Whenever I increase my carvedilol, I always get worse Raynaud's spasms in my legs but it does diminish after about 5 days. I hope this works.

[janiedelite]

I just wanted to post that the chest pan has lessened. It seems my body needed to adapt to this drug. I'm experiencing less negative side effects, like insomnia, as well. So far so good!