Titrating My Carvedilol Dose

[janiedelite]

I was assigned a cardiologist during a hospital stay last November, when I was admitted for chest pain and elevated troponin. The good things that resulted from that stay were finding a cardiologist who wasn't afraid to try to help me and finding that nitroglycerin helps my chest pain.

I've had episodes of chest pain/tightness/air hunger/migraine/flushing since the summer of 2008, which is when my POTS really worsened. This cardiologist is willing to prescribe the nitro pills as needed, but thought that carvedilol/coreg would help these episodes longer term because it would address my elevated norepinephrine levels (it's an alpha1, beta1&2 blocker). I did try imdur, a 12-hr nitrate, but you can only take it once a day and I still had chest pain during the other 12 hours.

I've slowly been increasing my carvedilol dose for 3 months and am now on 6.25mg four times a day. My BP and heartrate have totally normalized (normally I'm hypertensive on standing) and I have very little chest pain. But I'm still having episodes of flushing/migraine/air hunger in response to prolonged talking or moderate stress. I'm going to bring this up to my cardio, but he admits I'm the first POTS patient he's treated. He had talked with my Mayo neuro and other EP's who treat POTS, and basically admits this is all trial-and-error because no POTS patient responds the same way to medications.

I'm to the point with the carvedilol dose where I have periods of hypotension, my OI is worse in general, fatigue somewhat worse, and I'm really concerned about the upcoming rise in temperatures which makes all these problems worse anyway!

My cardiologist will pretty much do anything I suggest. Questions:

1. Are there any other meds that will effective control my chest pain and not make my OI worse?

2. Who out there has taken carvedilol and how did it affect you?

3. For those who took carvedilol, did you have to titrate your dose depending on the seasons/changes in temperature?

4. For those of you with flushing episodes, do any meds help? (like a beta or alpha-blocker?)

Thanks guys!

[erik]

The only "heart drug" I've taken (other than caffeine... he he), is propranolol so I've got pretty much no experience in these realms. I don't know what would help and I'm hesitant to say much of anything since heart stuff is so complicated and important to be cautious with, which I'm sure everyone here understands.

From scrounging drug information, it does seem like nebivolol (Bystolic) seems at least partially similar to carvedilol. Can't think of why it would work any better (seems more likely to be less effective on alpha-block lines). Nonetheless, it is something similar yet different if you get to the point of needing to change/experiment. Bystolic is said to have some nitric oxide impact, like carvedilol, so it's similar in that way which might have been part of the objective.

Clonodine is a pretty direct opposition to norepinephrine release and something I hope to trial some day. Typically it would concern a doc due to OH in a general population but with H-POTS this can be different or worth it for some folks, I guess. If going "way out 'da box" maybe there are CNS meds out there (which tend to be psych meds since that's "central") that could have indirect (read "side effect") that ended up being beneficial. There is an old neuroleptic/hypertension drug, for example, that works by "depleting catecholamines"... but one is going more "off the reservation" than "off label" there

It seems feasible that so long as dilation is steady & consistent, then blood volume can adapt to given "available space" and OI needn't be imminent... though perhaps hypertension is more likely. Maybe this means an ultra-extended release, or ultra-frequent but tiny dosing schedule could help?

Sorry. Not much to add (just some babble). Trying to throw some brainstorming out there into the void (and give the topic a "bump"). Have you or the doc come up with anything since first posting this question?

[janiedelite]

Have you or the doc come up with anything since first posting this question?

Hey I'll take your "babble" anyday! Initially, the doc had me taking a dose at bedtime which seems to cause worse OI in the morning (I was having a lot of chest pain at night). But I'm really trying to make myself more functional in the daytime, so after I posted I started taking 12.5mg in the morning and 12.5mg late afternoon. The half-life is 7-10 hrs, so I don't have a lot in my system when I first wake up and don't feel like I'm going to keel over on my way to the bathroom.

I'll let you know how this change in dosing goes. Only 4 days ago I increased from 3 to 4 doses a day. And this new change in schedule has me feeling pretty lousy once the doses peak for several hours after (chest discomfort, weak, cold, raynaud's flare). But that happened before and I just had to stick with it for a week and felt much better. I do have less flushing/chest pain since changing doses.

Yeah, I wanted to try clonidine as well. I think that was the next choice, depending on how well I did on coreg. I've always wondered how I'd do on that drug but my docs were afraid of inducing OH, like you said. It does seem to me that once I'm on the coreg for a week or so, my body does adapt to the displacement of blood volume and I feel more benefit and less negative side effects.

My GP thought the coreg would worsen my small fiber neuropathy pain since it peripherally vasodilates, which typically makes my extremities very red and painful. But I haven't noticed a difference. In fact, the b-blocker portion seems to stimulate my raynaud's and I've had very little SFN pain for the past 2 days, just cold achy feet!

[erik]

Did you have a chance to float the PDE5 (Viagra, Cialis) idea that Firewatcher mentioned before? There is research on that specifically for Raynaud's. I've wondered about Vinpocetine (PDE1 I think). These all modulate dilation so they're in the same boat as other stuff but you never know.

I think there are 21 PDE subtypes now, though most are not very selective. I wanted to get this topic to that CFS "Blood Flow" teleconference guy but I fell asleep quicker than expected while signing up and missed the conference! Some obscure ones are scoped out for some surprising "regulatory" effects at least based on research & patent filings (which are very speculative of course . One can hope for spinoff from that as a future insight to flow regulation things since it seems so central to all this. Plus I suppose there are more things like "Substance P" and NMDA neuroregulation and other more mysterious messengers that might open doors some day.

Do aspirin or NSAIDs have anything to do with Renaud's (good or bad)? Like via the prostoglandin (dilation/constriction) stuff? Histamine and kinins are constrictor/dilators too. Do those "mast cell stabilizers" do any stabilizing for folks that may not have MCAD or Masto? It seems like anything that brings stability to the dilation/constriction responses could be beneficial. I guess with denervation out there, the other signals can hit "unopposed" at times and swing to some radical extremes.

[janiedelite]

No, I hadn't been able to try the viagra yet! Also, I haven't noticed a difference in my Raynaud's when I take NSAIDs.

BUT, it looks like I get to try clonidine!

I have a friend who has suspected mild dysautonomia and I took her to the hospital for a TTT yesterday. Her cardiologist is in the same group as mine. After the test, he came out to tell me the results. But he also heard that I had POTS, and wanted to know how about my treatment thus far. He asked how Mayo approached my diagnosis and treatment, saying he wanted to make sure he wasn't missing anything in his treatment of POTS patients. Then he suggested that with my elevated norepi levels, it would be more helpful for me to have a central alpha1 blocker, like clonidine. He's talking with my regular cardio about switching me from carvedilol to clonidine, thinking that it will be more effective against the migraine/flushing episodes.

Wasn't that cool?! I got a consult with a doc willing to treat my POTS without even having an appointment!