Good News! made it back into cardio rehab.

[MikeO]

it's only been 1 day so far changing over to Coreg. This morning when i got up my heart was beating at 121 bpm and i had some strong chest pains (had to take a nitro tab) i was getting ready to go to the er but it resolved. I hope this is not an indicator as to how well the drug works.

[Rexie]

Hang in there Mike! Someone told me 50 years ago "Life is like a roller coaster". I looked at her skeptically, being young and weathering everything back then. Now her words come back to haunt me on bad days... 

[Pistol]

@MikeO - since every beat has a P-wave this looks like Sinus tachycardia. When you start out on any beta blocker you usually start out on a low dose to see how you tolerate it. Your dose ( 6.25 mg? ) may be too low to stop all of the tachy episodes. Once you determine if you tolerate this drug your doc will probably increase it slowly until you see improvement. As I said previously - I started out on the lowest dose and went all the way up to 25 mg until it stopped my fast and extra beats. I would not worry about this EKG strip - until you are controlled you will have runs of tachycardia. I so hope the carvelidol will help you as much as me! Just give it a chance!

[MikeO]

Well more to the story. Cardio rehab would not run me today Bp's were:

192/110

192/102

186/102

194/104

198/108

I did message my care team with the data. I do have to say my heart feels better today and my legs do as well. As @pistol mentioned carvedilol has a alpha property which affects the vascular portion of the heart. my cardiologist talked about my PVD in the legs and needed to keep that in mind as well as the drops in bp. I am sure i will get a med change at this point.

[cmep37]

Big hugs @MikeO - BP's that high cannot be pleasant!  My systolic is usually lower than your diastolic!!  At least your medical team is aware of the problems - fingers crossed they can do something to help you.

[MikeO]

Thanks for the Hug @cmep37I did get the bp down last night. I had a good stiff drink and it came down to 109/64

[cmep37]

3 hours ago, MikeO said:

I had a good stiff drink

I remember those days although I was always the cheapest date ever, 1 small glass of wine and I was tipsy!  I can't tolerate alcohol at all any more - my family joke that a wine gum gets me tiddly!

[Rexie]

7 hours ago, MikeO said:

I had a good stiff drink and it came down to 109/64

There you go, Mike. Drink one for me (sober since 1986)! 

I’m with cmep37 – I got to 110 systolic yesterday and consider it a miracle. My bp has been running real low after oral surgery last week and my head has been on backward or something - your readings were looking enviable even being a tad too high. The surgeon’s office sent me a lovely flower bouquet today, probably for not dying in their chair…

Hope you get "normalized" soon! You inspire me to keep doing what I need to do. Thanks! 

[MikeO]

Carido rehab did not run me again today due to high BP's we did look at the HR the change to carvedilol is working. have had steller 77 to 80 bpm. I did message my care team with with the data.

BP's were:

208/118

186/110

176/102

had similar readings when i got home.

@Rexie keep after it you can make a change as to how you feel.

[MikeO]

So UW cardiology got back to me. they are adding Amlodipine (CCB) to my med regiment. This is not their first choice of secondary meds but i am limited as to what i meds i can tolerate. My only concern is this med can cause swelling of the ankles. Guess i will deal with that if it happens.

[cmep37]

@MikeOIf you do swell in the ankles try flight socks.  My Granny takes Amlodipine (it's the only CCB she can tolerate) and swears by compression socks - she does have some swelling in her ankles but she also has mild congestive heart failure so it is hard to figure what is causing the oedema.  She was only telling me the other day that she read in the newspaper that Amlodipine is supposed to lower your chance of getting dementia. Granny is 85 and sharp as a tack so maybe there is some truth in that! 

[MikeO]

7 minutes ago, cmep37 said:

Amlodipine is supposed to lower your chance of getting dementia

Just googled this. I am feeling much better about the Drug. Thanks for mentioning it. Now i can be a sharp master passer outer

[Pistol]

@MikeO - I was on Amlodipine 10 mg for a while and my ankles did swell up. But it was not the reason I stopped it, for me it simply didn;t work as well, and Diltiazem was better for me personally. I hope it works for you!

[Rexie]

Mike wrote: "Now i can be a sharp master passer outer"

Mike, I understand the need for sharpness, having postponed going to an ER long enough to get my head together. Last time I went I took the time to write down all my info, complaint(s), and meds/herbs. Came in handy since they ask so many questions all at once – I just handed the gal my paper and relaxed. I also will not go until I have showered, even if I am half dead kneeling on the tub bottom – it gives me the illusion of control when it seems most lacking.

Exercising your calves is very good for increasing venous blood circulation from feet and lower legs back up to the heart, thus preventing swelling of ankles. There are some fancy exercises you could try but the easiest way for me is simply to just stand on my toes a few times a day while lightly supported by a window or door frame or a handy wall. I don’t have ankle swelling, I just like doing a little something for myself throughout the day – stretching calf muscles has become part of my mini pause and regroup moments since it also helps relieve tight, painful calves. Timed to breathing, tending to calves helps me make sure I am breathing naturally and adequately. 

Onward and upward...

[MikeO]

2 hours ago, Pistol said:

@MikeO - I was on Amlodipine 10 mg for a while and my ankles did swell up. But it was not the reason I stopped it, for me it simply didn;t work as well, and Diltiazem was better for me personally. I hope it works for you!

Like usual i will give a med a go and see what happens (i just know high bp's are bad) even with high blood pressures i feel it tanking when i stand up but i am high enough not to give me issues (sure this will change as i get pushed back down). I suspect UWM Madison is targeting what they are seeing symptom wise. Amlodipine does help with angina which is more prevalent with me and does lower bp's. I am sure this will give me issues.  Diltiazem will help with prinzmetal angina i do get that as well but is infrequent with me. I have read that Diltiazem has a lower incident of swelling ankles. Only other drug that i did take for angina was isosorbide and bp management i passed out so many time it not even funny.     

[MikeO]

1 hour ago, Rexie said:

Mike wrote: "Now i can be a sharp master passer outer"

Mike, I understand the need for sharpness, having postponed going to an ER long enough to get my head together. Last time I went I took the time to write down all my info, complaint(s), and meds/herbs. Came in handy since they ask so many questions all at once – I just handed the gal my paper and relaxed. I also will not go until I have showered, even if I am half dead kneeling on the tub bottom – it gives me the illusion of control when it seems most lacking.

Exercising your calves is very good for increasing venous blood circulation from feet and lower legs back up to the heart, thus preventing swelling of ankles. There are some fancy exercises you could try but the easiest way for me is simply to just stand on my toes a few times a day while lightly supported by a window or door frame or a handy wall. I don’t have ankle swelling, I just like doing a little something for myself throughout the day – stretching calf muscles has become part of my mini pause and regroup moments since it also helps relieve tight, painful calves. Timed to breathing, tending to calves helps me make sure I am breathing naturally and adequately. 

Onward and upward...

Thanks Rexie you are soo correct. I have been working on just this. It has helped immensely.

[MikeO]

On 10/7/2021 at 1:31 PM, Pistol said:

Amlodipine 10 mg for a while and my ankles did swell up

Pharmacy did point out the swelling. But i am not on the highest dose of Amlodipine only 5mg. So far day one it did lower my bp. I went from 188/115 at 8:03 am to after taking the drug to 145/93 at 12:50am. Hope this goes well. @PistolI can not believe you were taking the max dosage of carvedilol that would be like taking 200mg of metoprolol sure your heart was beating when you did this? 100 mg of metoprolol would have me passing out.

[Pistol]

3 hours ago, MikeO said:

I can not believe you were taking the max dosage of carvedilol

Yep, I took 25 mg Carvelidol twice a day and 240 mg Diltiazem once a day, and my BP would still go high! My vessels would keep constricting so much that I took seizures. But since getting regular IV fluids and becoming disabled I have been able to cut down on many of my meds, and my BP has been great! However - I have to constantly adjust my abilities to the whims of my ANS!

[MikeO]

Well on Monday Cardio Rehab would not run me again! Starting to feel a bit awkward about it. I squeezed some high bp's

192/106, 188/102,190,108 and 208/108

I did start Amlodipine last Friday and have been taking it before going to bed. Not sure how long it takes to get the full benefits from the drug i hope soon. I also read somewhere that it takes hours to get a working level of the drug in one's system.

I did switch to taking it along with my second dose of Carvedilol at dinner time has seem to have made a diff my just out of bed bp today was 135/89. But just like everything else with me when i think i have me finger on an issue my body does something else. 

[Rexie]

Mike, I know how frustrating it can be to think we’re making progress forward only to be knocked back a step or two. I find it helpful to pay attention to my breathing as well as my personal stress levels throughout the day. Ideally, I’d have cardio rehab as well as pulmonary rehab, but that’s not the case for me (age discrimination?). There is a complicated interaction between carbon dioxide (CO2) levels in our blood and blood pressure, among other things. 

In people with autonomic issues there can be hyperresponsiveness of blood pressure to hypoventilation/hyperventilation. In those with autonomic failures, hyperventilation decreases blood pressure and hypoventilation increases blood pressure. 

In those with various autonomic insufficiencies: 

Hyperventilation (overbreathing) is deep and/or rapid breathing (can be induced by one breath per second for 30 seconds). Excessive breathing may lead to low levels of carbon dioxide in the blood. In normal people hyperventilation causes a drop in arterial blood pressure, apparently because of the direct effect of hypocapnia on the peripheral vessels. In persons with disease of the autonomic nervous system, the drop in blood pressure is much greater because vasodilation is not effectively opposed by reflex vasoconstriction. This decrease in blood carbon dioxide levels causes a rapid fall in blood pressure, sometimes ≥40 mmHg within 60 seconds. To prevent fainting, rebreathing into a paper bag or through a piece of tubing has been shown to considerably lessen sudden hypotension. 

Hypoventilation refers to a state of decreased or inadequate ventilation due to a reduced depth and rate of breathing leading to hypercapnia, an elevation of carbon dioxide in the blood. Hypercapnia (such as can be seen with hypoventilation) can rapidly raise blood pressure 20 mmHg or more. 

People with orthostatic hypotension respond to standing/upright cardiovascular alterations and worsening symptoms (lightheadedness, tiredness, palpitations, blurred vision) with reflex overbreathing and increased depth of respiration (hyperventilation), which augments oscillations in blood pressure. This in turn results in hypocapnia and cerebral hypoperfusion, worsening orthostatic intolerance. Hyperventilation caused by anxiety may also greatly intensify postural hypotension. 

Keep on walking! I’m often reminded of the tune by AC/DC – Thunderstruck: “Yeah, it's alright, we're doin' fine, fine, fine“.  

Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance, Vera Novak, Judith M. Spies, Peter Novak, Benjamin R. McPhee, Teresa A. Rummans, and Phillip A. Low, Stroke, Vol. 29, Issue 9; 1998
https://www.ahajournals.org/doi/full/10.1161/01.STR.29.9.1876 

Dysautonomia: Perioperative Implications, Mustafa, Hossam & Fessel, Joshua & Barwise, John & Shannon, John & Raj, Satish & Diedrich, André & Biaggioni, Italo & Robertson, David, Anesthesiology, Vol. 116(1), pp. 205-215; 2011 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296831/ 

Hyperventilation in Postural Hypotension, John F. Burnum, John B. Hickam, and Eugene A. Stead, Jr, Circulation, Volume 10, pp. 362-365; 1954 https://www.ahajournals.org/doi/pdf/10.1161/01.CIR.10.3.362 

Excessive Gravitational Blood Pooling Caused by Impaired Venous Tone is the Predominant Non-Cardiac Mechanism of Orthostatic Intolerance, David H. P. Streeten; Thomas F. Scullard, Clinical Science, Vol. 90, Issue 4; 1996
https://portlandpress.com/clinsci/article-abstract/90/4/277/76521/Excessive-Gravitational-Blood-Pooling-Caused-by?redirectedFrom=fulltext 

Pathogenesis of hyperadrenergic orthostatic hypotension, Evidence of disordered venous innervation exclusively in the lower limbs, D H Streeten, J Clin Invest., Vol. 86(5), pp. 1582-1588; 1990
https://www.jci.org/articles/view/114878/pdf 
 

[MikeO]

4 hours ago, Rexie said:

Keep on walking! I’m often reminded of the tune by AC/DC – Thunderstruck: “Yeah, it's alright, we're doin' fine, fine, fine“.  

@Rexiethis is one of my favorite songs. I get what you are suggesting and O2 levels from what i have seen makes a diff (ido do better with an O2 level at 98 vs 94)  especially with the lightheadedness and cerebral hypoperfusion despite what my bp is. this has gotten many times. 

What i have noticed as we changed up my beta-blocker from metoprolol to carvedilol my bp's have risen and have had more breakthru tachycardia. Not sure about how the Amlodipine is working yet cause i need to give it time.

Friday i go in for a stress test on full meds. UWM will ferret out if the beta-blocker is working if it is i will never hit my target HR if not i will exceed it and if my BP is too high they will not run the test and we are back to the drawing board.

I will give an update.   

 

[Pistol]

31 minutes ago, MikeO said:

What i have noticed as we changed up my beta-blocker from metoprolol to carvedilol my bp's have risen and have had more breakthru tachycardia. Not sure about how the Amlodipine is working yet cause i need to give it time.

Could be the Amlodipine causing this, although if I remember correctly you also had increase in BP just on the Carvelidol ( but could be the low dosage ). Tachycardia could be expected with Amlodipine. 

[MikeO]

15 minutes ago, Pistol said:

Could be the Amlodipine causing this, although if I remember correctly you also had increase in BP just on the Carvelidol ( but could be the low dosage ). Tachycardia could be expected with Amlodipine. 

Dosage of Carvedilol is equivalent to the dosage i was taking to metoprolol only diff it is short acting vs extended that the metoprolol was. I went tacky right after going on Carvedilol (ruff transition) and yes bp's rose with it as well and have not recovered well.. I have read Amlodipine can cause palpitations just don't know a lot about that but it is a potent (CCB) compared to other drugs.

I can not take other drugs like lisinopril or losartan that would be bad to try again. I have faith in my team at UWM. Like said the up coming stress test will ferret out issues. 

There is a bonus my stomach is rumbling again.  

[Pistol]

9 hours ago, MikeO said:

I have faith in my team at UWM.

I am glad to hear that, it is sooo important! I too trust my autonomic specialist despite the fact that he had to try many, many meds before finding the right combo. But since with dysautonomia it is all hit-and-miss we do have to kiss a lot of frogs before finding our prince! Stick with their recommendations and I hope the stresstest will give answers. Best of luck!

[MikeO]

Good news yesterday my BP's were low enough that Cardio Rehab allowed me to exercise. At start i was 156/93/ mid way 145/83 and at the end of the session 126/73. The RN's did ask what i changed up to improve the vitals.

I suspect that i am slow to metabolize the Amlodipine so taking it at bed time i still did not have enough effective dosage in my system to show improvement first thing in the morning. I since started taking Amlodipine along with my second dose of Carvedilol at dinner time seems to be the winning combination.