Confused and overwhelmed

Feeling overwhelmed

by Gemita - 2021-07-12 07:36:07

Dear Mae11,

I am really sorry to hear you are still suffering and that your doctors are not being particularly understanding.

I know we have corresponded in the recent past and that we both have the condition Reflex Sympathetic Dystrophy which may complicate your picture as it does mine.  More questions arise from your post than answers, particularly from the intervention you have had so far and I am a little uncertain how to respond.  I will try to go through your post step by step.  

Following your lead revision on June 30th, you were first given Metoprolol 25 mg, twice daily while you were in hospital and then it was taken away from you at discharge, presumably because of concern for your falling blood pressure which of course cannot be controlled by a pacemaker as can a falling heart rate.  It appears you were having high heart rates following your lead revision which can be perfectly normal after such a procedure and the 25mg Metoprolol, twice a day, would hopefully have calmed everything down.  Maybe this is what your doctor tried to do, although I understand completely your concern about your blood pressure.  I have the same problem and it is a balancing act sometimes.

Next, your comment:  “When I went in for my interrogation she said that my pacer has not kicked in at all since the revision. In fact, she said my BPM have been persistently high”.   A pacemaker alone cannot kick in to stop a high heart rate, only a pacemaker with a defibrillator (latter for a dangerous arrhythmia or heart condition) would have the capability to do this.  For SSS (sick sinus syndrome) your pacemaker was implanted to prevent your heart rate from falling.  It cannot stop an arrhythmia, or a high heart rate.  Medication, like Metoprolol may help to do this and then the pacemaker would step in to support a falling heart rate (as a result of the Metoprolol reducing it) so that you can maintain a decent heart rate at the base rate (minimum rate) set up for you.  It would appear that your natural heart rate never fell below the set base rate, never needed the support of your pacemaker.  Your own heart did all the work.  That is what I believe they meant by the pacemaker never kicked in?

They usually test Activated partial thromboplastin time (APTT) and Prothrombin time (PT) before a surgical procedure to make sure that blood clotting is adequate to prevent a bleed and to check for any bleeding disorders.  A major bleed during surgery would be serious.  I do not know how abnormal your results were, but they obviously went ahead with your procedure so I assume that they were not overly concerned with your test results, or they took the necessary steps to keep you safe during surgery.  In view of your concerns, I would discuss your results with your doctors though as soon as possible.  It is hard for us to know what is going on, but I would hope that before discharge, you would have received all the necessary checks?

When did they find the T2 hyperintensity on your Thalamus?  They usually need to interpret the results with other symptoms you might be getting.  Have they actually said or confirmed that you have had a stroke?  You need clarity here.  Did they give you any medication to take?  

Your dizziness and lightheadedness could be caused by so many things, from arrhythmia (fast heart rate), to dehydration, medication effects, blood pressure/heart rate changes, blood glucose abnormalities, anaemia and many other conditions so it is difficult to say what could be causing this.   I would speak to your general doctor and contact your pacemaker clinic also for advice, especially if your general doctor is at all concerned.  Tingling extremities and tingling in general and a strange, mottled type look to the skin and other skin changes, could be a flare up of the RSD (Reflex Sympathetic Dystrophy) and stressing about your situation could be fuelling this too.  I would get any skin changes checked and tell your doctors about the tingling as soon as possible in view of your history.

I know we all say this, but it is true, it has only been a couple of weeks since your lead revision and some if not most of your symptoms could be due to the trauma of the procedure and the sheer amount of stress you are currently under without a clear understanding of your diagnosis, what the pacemaker can and cannot do for you, what SSS is really all about, what other illnesses you may have. 

I believe you will get better.  Just give yourself a little more time and get help if you continue to have distressing symptoms.  

Thanks Gemita

by Mae11 - 2021-07-12 14:43:28

Thanks for the reply, Gemita. 

From what I have been told and seen, the high heart rates were prior to the lead revision. They were somewhat steady and between 60 and 70 while in the hospital(before the one dose of metoprolol). I was told by the rep before discharge I was pacing at 15% by the atrial lead.

Is SSS that intermittent that I would go from 15 second pauses and heart rate in the 30s, to a constantly higher heart rate? I understand that the PM will not do anything for a rapid or irregular heart rate. My BP is also widely varied.

My aptt was 21.5, only slightly lower than the normal range which I believe starts at about 23 for my lab. My pt was 9.5, and I believe their normal range is 10-14. My INR was 0.9.

As for the spot on my thalamus, it has not been clearly explained. I was referred to a cardiologist and neurologist when all of this began. I was told my symptoms were similar to that of MS, and had an MRI done. The most information I have gotten about it is that it is a 3.6 mm ovoid hyperintensity in my right thalamic hemisphere. The MRI report listed it as a possible small lacunar infarct. The doctor simply said that it was not MS, and ordered a tilt table test and EMG of my arms and legs for the tingling. He is aware of the previously diagnosed RSD and is aware of all of the symptoms I'm having. He saw the mottling on my arms and hands while in the office.His report says that he feels that I may have more than one condition that may have led to needing the pacemaker. He also suggested superimposed autonomic dysfunction(unsure of what he meant by this). When I first saw him, he was convinced that I had POTS.

I work at my children's school in the special education room. At this point in time, I feel like I am unable to go back to work. That is absolutely heartbreaking to me as I LOVE my job!

You will heal

by Gemita - 2021-07-12 16:37:48

Even if you had high heart rates before lead revision, the extra trauma to your heart from the lead revision can trigger worsening arrhythmias which should settle as you heal.  Yes, that is the nature of SSS and in fact all electrical disturbances from blocks to arrhythmias like bradycardias, tachycardias - they can all suddenly change.  That is why they are called electrical disturbances.  Doctors cannot predict how each heart is going to behave once we start having problems.  Some of us progress quickly to needing 100% support atrium (or ventricle with a block) whereas others take longer or even stabilize for a period.  There is no way of knowing, but you have the pacemaker to keep you stable now with the pausing/bradycardia which is what is important.

You are clearly not dependent on your pacemaker, at least not at the rate you are set at. I am almost 100 % paced atrial lead at 70 bpm but if I dropped my base rate to 60 bpm I expect my atrial pacing would also change.  Do you know what your base rate is set at?  I note you are only 15% paced in the atrium.

Yes both my blood pressure/heart rate can change rapidly too and I am on medication for this (beta blocker Bisoprolol and an anticoagulant).  I wouldn’t be too concerned about your APTT or PT levels, nor the INR of 0.9.  Did they say you would need anticoagulation for your arrhythmias?  All these levels are just below the normal range depending on the testing centre.  I would ask your doctors whether these levels need treating or at least need watching because you are very concerned about the potential for a blood clot.

My feeling overall is that there is nothing specific to worry about apart from recovering from your lead revision and to get used to pacing and to try to tame your arrhythmias.  Once you have done this you should start to feel better.  I honestly feel that you will be able to get back to what you love.  You just need to be patient for a little while longer.

 "Superimposed autonomic dysfunction” is a new term for me too.  I would suggest it means “overlapping features with other conditions”, but that is just a wild guess?  You certainly have other conditions which have the potential to affect your electrical disturbances, but you now have the pacemaker to protect you and I am confident that you will soon be telling us you are feeling better