Cleveland Clinic
- by Mae11
- 2022-03-06 18:44:22
- General Posting
- 896 views
- 15 comments
Alright guys, I'm back again.. I was seen by my neurologist after my most recent episode at the beginning of February. He was not too happy that I had not had the tilt table test done and referred me to an EP in his network to switch my care to. I had an appointment with my current EP on the 3rd of this month, which I kept, planning to see what he had to say and let them know I would be switching to another..
He came in and his demeanor was completely different than any other appointment. He actually apologized that we have not gotten my situation under control yet. He said he believes that I am either having vasovagal syncope or some form of partial seizures and said that he wants me to have a second opinion.. he gave me choices of IU, Chicago, or Cleveland Clinic. I asked what his suggestion was and he said Cleveland. He seemed somewhat irritated that his NP had switched me to metoprolol succinate, and switched me back to tartrate and increased the dose to 37.5 twice a day.
He had me seen right after our visit for a pacer check since I did not go to my December check. My resting heart rate has been in the 90s and I have had episodes since my last transmission on February 14th where it has gone as high as 220. But, somehow my atrial pacing percentage has gone up slightly to 20% and my ventricular lead <1%. That coupled with "more PVCs than he would like to see" landed me with another 30 day event monitor.
All of this makes me somewhat nervous, but also relieved that I feel like he's finally taking it seriously. I will be seen on June 8th at Cleveland Clinic. They told me to plan on being in town atleast 2 days.
So a few questions, first, why would he be so insistent on metoprolol tartrate? The only answer he would give me is that it is stronger.
Second, could the PVCs be what is engaging my ventricular lead? All the report said was PVCs 0.4K counts since February 14th.
Finally, why would he send me for a second opinion if he thinks he knows the cause?
Thanks to anyone who reads my rant and responds! Like I said, I'm mostly relieved but also slightly nervous..
15 Comments
Tilt test
by Mae11 - 2022-03-06 20:32:15
I completely agree with what you are saying. My frustration, along with the neurologist's, was that he wasn't doing any further testing to see what was going on. My EP refused to do the tilt table from the time it was suggested. But now he says it's vasovagal, which would be diagnosed BY THE TILT TABLE. I too am feeling like there is something I am missing or that he isn't telling me about. Is there any more info I could give you to give an indication of what else could be going on??
Tilt test and other investigations
by Gemita - 2022-03-07 07:56:07
Mae, the wait for a second opinion (June) is a long one but hopefully will be worth it for an expert opinion.
Looking at your message the only significant detail for me is the finding of a high heart rate up to 220 bpm, but you would need to know “the duration and arrhythmia present” to determine the significance of this finding? Perhaps this is why they are looking at giving you another 30 day event monitor to better capture what is happening on a day to day basis and to correlate the event (syncope) with any arrhythmia? That is exactly what they did for me. I had to prove that the arrhythmia and symptoms from the arrhythmia could be the cause of my syncope before they implanted a pacemaker. My heart was clearly "pausing" as my fast AFib switched back to normal sinus rhythm.
Although our pacemakers may capture a significant event, say an arrhythmia lasting for more than 30 seconds at a high heart rate say above 180 bpm, it may not be set up to record an episode of a shorter duration/lower heart rate, whereas the Holter monitor will be set to record all rhythm disturbances and you can trigger an immediate alert when you feel faint to correlate with any arrhythmia.
If you are anything like me with autonomic problems, a sudden burst of an arrhythmia at a high heart rate can indeed lead to instability and syncope, even with my pacemaker, since the pacemaker cannot prevent blood pressure falls, only heart rate falls. I think that is the problem for us and others like us. Vasovagal syncope isn’t always prevented by a pacemaker and I can remember my doctors holding off for a long time before recommending I go down this route. However, since we both have pacemakers now, it is important our doctors work with what we have got to improve our symptoms. If like me your syncope can come from bursts of arrhythmia, then beta blockers will help, but we may need to try several different beta blockers to find the best one for us. I am helped immensely by Bisoprolol, low dose which keeps my arrhythmias under control. I am also helped by a steady 70 bpm heart rate to calm my arrhythmias, including ectopics like PVCs.
You ask, “could the PVCs be what is engaging my ventricular lead”? If I understand your question correctly, I feel it is more likely to be the 220 bpm heart rate spikes causing mode switching to try to stop the tracking of Atrial arrhythmias as the cause for any ventricular pacing. Furthermore, 400 PVCs since February 14th doesn’t sound too significant. Prior to my pacemaker I was getting PVCs/PACs round the clock and they were really affecting heart rate and blood flow and triggering episodes of atrial tachycardias, often at high heart rates causing pre-syncope/syncope.
From what I can see, the main difference between Metoprolol tartrate and Metoprolol succinate is that Metoprolol tartrate is only available as an immediate-release tablet which means it must be taken several times per day to keep an effective level of the med in the blood stream, whereas Metoprolol succinate is an extended-release tablet that can be taken once a day and releases the drug slowly over a longer period of time. It would appear that Metoprolol Tartrate is commonly used for arrhythmia control and has more uses than Metoprolol succinate so based on this, I am not surprised he switched you back Mae.
Why would he send you for a second opinion if he knows the cause? I would argue perhaps because a definitive cause/trigger cannot always be readily seen or confirmed during common investigations, particularly when dealing with complex autonomic conditions. There may be so many triggers and reasons why we faint and your doctor wants a specialist opinion and further testing to arrive at a sensible treatment plan.
Thank you, Gemita!
by Mae11 - 2022-03-07 09:47:41
Thank you, Gemita, for your reply. The wait until June surely will be a long one, but I think that I will finally get some answers. My EP told me that his partner in Minnesota that he wrote several books with specialized in ANS dysfunction, and that he would send me to him if it were closer. The doctor I will be seeing in Cleveland, Dr. Courson, is supposed to be one of the best syncope specialists around.
I frequently feel sudden, extreme increases in heart rate. Last night, for example I was just dozing off and got the horrible strong, fluttering feeling in my chest. It only lasted about 15 seconds, but was very intense.
I am somewhat nervous about him increasing the dose of metoprolol tartrate, as I was having issues with the 25mg lowering my BP. He said if that's the case call him and we will try another. It also scares me that I have already been doing what they suggest for vasovagal treatment (compression stockings and increasing salt and water intake). As you said, there are so many triggers. My episodes have all felt the same, but always different circumstances.. walking, laying in bed, the shower, driving.
Something told me to go to the appointment before switching, and I am so thankful that I did. I finally feel like my EP is taking this seriously and wants to figure it out. Maybe he did all along, but wanted to be sure that the stress of implant wasn't causing all of this.
I thank you wholehearted Gemita. It is comforting and reassuring knowing that there are others out there who have similar problems and have mostly been able to control it.
What 's going on?
by Gotrhythm - 2022-03-07 12:12:16
I looked over your previous posts and saw a couple of themes.
1. This EP has been unresponsive to you in the past. A wise person used to tell me, "Expect people to do what they always did in the past. Sometimes they will surprise you, but it will be because of something that happened to them--not you." Yes something has lit a fire under this guy, but it probably wasn't sudden interest in your case. He's still unresponsive. He wouldn't actually explain the reasons for the med change. If a doctor won't explain what he hopes a medicine will do for you, that's a red flag.
2. Your case is complex--lots of different issues interacting and influencing the symptoms you're having. I sympathise. And you wish/hope they would just sort themselves out. Or , at least you wish the doctors would find one key that will unlock all the rest. Again, I get it. But it's not likely to happen.
Valid points, Gotrhythm!
by Mae11 - 2022-03-07 12:41:19
Your points are totally valid and make me wonder a little bit..
I was looking back at discharge papers from my lead revision and it states "Other surgical procedures as the cause of abnormal reaction in patient, or of later complications, without mention of misadventure at the time of the procedure".
Is it a possibility that he was found at fault, and now he's trying to cover his tail?
I was really feeling like he was finally acknowledging there was still an issue, and wanting to figure things out. Your points make me question that a bit..
Don't waste anymore time
by Gotrhythm - 2022-03-07 13:16:22
Regardless of what causeed the doc's new attitude, you had already gotten the message that it's time to move on. His actions just confirm it.
No doctor knows everything. No doctor is the right person for everyone, or even for anyone all of the time. Be generous and assume your case is just too complex for him.
Move on, whether you go to Cleveland Clinic of the other EP.
Cleveland Clinic
by doublehorn48 - 2022-03-07 13:25:40
The people that have posted are a lot more knowledgeable than I am. But I've been a patient at the Cleveland Clinic for lead extraction. A great hospital. They have you staying for 2 days because they will run tests for 2 days. I live around Dallas and when my pm goes down in a couple of years, I intend to go back to Cleveland to get it replaced. A nurse took me to one of my numerous tests while I was there and was telling me about her father in law that had died from complications with his heart. She looked at me and said that he wouldn't come to the Cleveland Clinic because he was afraid he would be just a number. "Yes," she said, "he would have been a number, but a special number". "If he had come here he would still be with us".
Best wishes,
m. scott
Great to hear!
by Mae11 - 2022-03-07 13:41:57
I'm so glad to hear you had such a positive experience. To travel all the way from Dallas says alot! I have a friend whose husband collapsed during a triathlon. He ended up having surgery and they told him he would only have 40% function. He then went to Cleveland Clinic for a second opinion, where they found he had a condition at birth. He now has much better function, no symptoms, and continues doing marathons and triathlons. What an amazing difference!
The way I look at it, they aren't one of the top heart and vascular hospitals in the nation for no reason!
Metoprolol Succinate Vs. Metoprolol Tartrate
by Marybird - 2022-03-07 18:38:43
I don't have much to contribute to what's already been said here, except to wish you well in your journey to find the underlying causes, and with any luck the best ways to manage and do well with your health issues.
Just my two cents on the metoprolol succinate vs tartrate. As others have said, and I'm sure you are aware, the succinate form is the longer acting, extended release form of metoprolol, generally taken once a day, and the tartrate is the shorter acting, form and it's generally taken twice ( though I've seen three times in some instructions) per day. I took metoprolol succinate 1x/day ( 100 mg, then cut to 50 mg) for many years to control SVT and thought it provided good control, until it seems it didn't. The cardiologist I was referred to after an episode of a-flutter changed the metoprolol I took from succinate to tartrate, and I took it twice a day. His reason for doing so was his belief that the extended release forms of drugs are not effective for the entire day, but "peter out" as he put it, after maybe 8-12 hours. Taking the shorter acting form of the drug more often reportedly provides more coverage over the entire day.
I don't know if this is true for everyone, but I'd noticed that if I took extended release forms of a medication, it didn't last for the entire 24 hours it was supposed to, but for me the tartrate form of metoprolol is much more effective in controlling my tachyarrhythmias-afib. I now take 150 mg/day, in two divided doses of 75mg.
Agent mentioned taking metoprolol succinate ( longer acting) twice a day, and I'd think that would also provide the 24 hour coverage needed as there would be overlapping of the two dosages if the tabs are taken close to 12 hours apart. My problem was just taking one ER tablet once a day and expecting it to last 24 hours.
I also take diltiazem to kinda help the metoprolol with those tachy breakthroughs I get. During a pre-pacemaker hiatus off the metoprolol to see if the diltiazem would work better, I found that one 180 mg of the diltiazem ER alone took about 5 hours to work, and petered out about 8 hrs later, leaving me desperately counting the hours till I could take the next dose. I tried the short acting diltiazem tabs ( 60 mg 3x/day) and they were a bit better but still didn't control the tachycardia well, and I still had bradycardia ( seemed to be either-or).
But I now take a 180 mg diltiazem ER tab twice a day- an EP I saw increased the dose to help control my hard to control high blood pressure. I believe it also acts with the metoprolol to minimize the tachy-afib breakthroughs, and I'd think the overlapping of the two ER tabs provides an adequate blood level of the diltiazem over the 24 hours.
Metoprolol Succinate Vs. Tartrate
by AgentX86 - 2022-03-07 20:48:30
Metoprolol evidently has a half-life of 3-4 hours and is effective within 15 minutes of ingestion. This means that even taken twice a day isn't sufficient to cover 24 hours. The succinate version is evidently slower to enter the blood stream so is released slower but once there it's no different than tartrate. Succinate not as good for a "pill in the pocket" use because it's not as fast.
I'm taking it mostly for blood pressure (arrhythmia mitigation is a lot cause) so my cardiologist wants the coverage as even as possible.
Thank you all!
by Mae11 - 2022-03-08 11:13:20
Thank you all for your thoughts on this and well wishes. They had to special order the 37.5 so I just took my first dose this morning.
Metoprolol Tabs
by Marybird - 2022-03-08 15:51:53
Wow, Mae, I didn't know they even made those "in between" dose tabs for metoprolol, special order or not. I was prescribed 150 mg/day ( bumped up from 50, then 100 mg) to try and control the afib they're seeing on my remote pacemaker monitoring reports. The instructions are to take 1.5 tablets ( 50 mg) twice a day, and that works when it's a dose that can be achieved by evenly dividing a readily available strength tab. I don't even know if they make a 75 mg metoprolol tab. I guess you could get to 37.5 mg by taking 1.5 (25 mg) tabs of the metoprolol as well, just something to think about if it gets hard to order those 37.5 mg tablets. Anyway, hope it'll work well for you and you'll be on the way towards getting your problems under control.
Agent, does the metoprolol work well to control your blood pressure? I've read, been told that it wasn't such a great blood pressure drug. I guess that varies depending on the person, it does ok for me but I'm taking it primarily to control the afib and other tachyarrhythmia miseries and it does a great job at that for me, and hopefully it helps with the blood pressure. Though I take several other drugs for blood pressure as well, and among all of them, as well as exercise and avoiding (!!) as much as I can, stress, something works most of the time to keep it within decent ranges.
I'm sure you're right about the blood levels of metoprolol tartrate falling off so that even two doses of the tablets/day won't cover the 24 hours as expected. I guess it'd depend on the dosage, though. I know the 25 mg tabs I took twice a day, then the 50 mg twice a day didn't do it for me- I'd get a lot of breakthrough tachys around the time it was time to take the last dose, but much less on the 75 mg twice a day dosage. The diltiazem I also take most likely helps with that as well. I have more breakthrough even with the higher doses of metoprolol when I don't take the diltiazem as well.
Blood pressure an metoprolol
by AgentX86 - 2022-03-08 16:51:11
I don't know how well it works but not well enough. My BP runs high even though I'm on metoprolol (2 x25mg) and amlodipine (5mg, I think).
Metroprolol isn't the only option....
by BOBTHOM - 2022-03-13 14:30:45
I was on Metroprolol for years, both tartrate and succinate. In dosages high enough to help the side affect of being tired all of the time was to much for me. They then tried CoReg (Corvedilol) which was even worse, made me just as tired but added the runs with it. Since then switched to Bisoprolol with much better tolerance and results. Within 15 minutes of taking it my heart rate drops at least 10 bpm and stays there all day. My only issue is if I take it to late in the day my overnight heart rate drops in the mid/high 50's so I make sure I take it before 3pm. Oh, and I'm on a very minimum dose, sometimes the uptitrate that the doctors like to do is not what works best for us! But ymmv.
You know you're wired when...
Three months of free Internet comes with each device.
Member Quotes
Im healthy as a horse because of the pacemaker.
New EP?
by AgentX86 - 2022-03-06 20:08:59
If you are going to change EPs, at the suggestion of your neurologist, why are you continuing with the old? It seems that you should pick a horse and ride it. I understand your neurologist's frustration (ask him how many times he's done the same).
One answer to the metoprolol question is that the tartrate version is recommended to prevent death from heart attack. The succinate form is not recommended for heart attack. Succinate is suggested for heart failure. Succinate is longer acting (usually once per day) and tartrate more often (maybe more than twice). My EP has me taking succinate twice a day (?).
Four hundred PVCs in three weeks doesn't sound like a lot. Unless they're in long strings, they likely wouldn't be noticed. Unless there is something else going on a hundredish a week is no big deal.
Until they do the tilt-table and all the easy stuff, I don't know why they're bringing out the big guns and sending you to Cleveland. There musst be more to this story.