Let me Add to my last Post

95% well is good

by Gemita - 2020-12-16 04:41:33

Alejandro,

You are a complex, but wonderful challenge.  These are not new symptoms though from following your posts, so that tells me that my earlier thoughts about the possibility of an “autonomic” involvement might be worth following up.  This is a complex area, as complex as you clearly are.  

I know you have had some autonomic testing in the way of a Tilt Table challenge and this proved negative but “autonomic” testing (and disease) covers a much wider area than covered by Tilt table testing.  Not that I would wish autonomic disease on you but in view of your out of the blue symptoms, I would consider asking for another referral to a consultant neurologist to get more complete autonomic testing done which will hopefully coincide with your symptoms to arrive at a firm diagnosis.  This is the only way I can see to rule out autonomic disease.  I am assuming panic attacks/hyperventilation is not the root cause for your breathlessness, although clearly both these conditions are capable of doing this.  

It is strange you never had these symptoms prior to your pacemaker which seems to point to a pacemaker cause for these sudden, intermittent symptoms (or just a coincidence)?  I wonder if you might be allergic to any of the components in your device, triggering an intermittent allergic reaction or autoimmune/autonomic response?  That is one thought.  All I can continue to suggest here is that you keep testing (monitoring) your symptoms and correlating your symptoms with any ECG reports.  Eventually with timely monitoring a picture will start to emerge and a diagnosis for your breathing difficulties, in particular, might be found.  

You say 95% of the time you are relatively well.  That is a very high percentage of being well Alejandro, so I think there has been some improvement in your symptoms and condition, wouldn’t you say? 

Burning prickly sensation in the body can be caused by so many conditions from diabetes (autoimmune disease) to specific nerve injury, infection, autonomic neuropathy.  I would ask your doctor for an opinion Alejandro, specifically ask about the possibility of Parasthesia?  I wonder whether any complications have occurred during pacemaker implant?  In view of your ongoing pacing problems too, I would maybe ask your doctors to examine more closely the position and integrity of your leads.

That is my contribution for today !  Food for thought at least hopefully.  Can I wish you a happy first year anniversary ahead of time?  It hasn’t all been bad, has it?  At least you have met all of us.  Oh by the way, did your recent Zio Patch show anything?

Zio Patch

by arent80 - 2020-12-16 11:12:06

Hi Gemita!

Thank you for your response! You asked so I'll respond. BioTel LOST my first Patch. It was delivered to their distribution center 11/9 but no one could find it. So now I have another patch on. GOOD TIMES! I take this one off on Friday. 

As for an autonomic disorder I am starting to believe I may have one. What else could this be? One EP mentioned that my "other" symptoms may just be coincidental. I just find it odd that I was completely fine prior to knowing about my heart and ever since my life has changed. I've mentioned PARESTHESIA to the doctors and they all look at me as if I'm speaking some foreign language. Earlier this year it happened two or three times. Now it seems that as soon as I get "HOT" from any activity I feel the prickling. It also doesn't happen every single time. I'd say it happens 7 out of 10 times. I also notice that when I truly exert myself by getting my heart rate over 150 I am left With this ache in my chest and I feel winded. My CT Angiogram said I had ZERO calcium, no plaque, no stenosis, however a Nuclear Stress Test showed calcification of the major arteries. No one can explain why there is a conflict between the two. I have almost lost hope in our healthcare system. It's really sad. All I can do is keep fighting for an answer which I hope I will get in 2021. Anyhow thank you for wishing me a happy anniversary! I have learned a tremendous amount over the past year and it hasn't been all bad.

Happy holidays everyone!

Stress can get to all of us.

by crustyg - 2020-12-16 16:26:51

This is by way of empathy, Alejandro.  Normally I sit at my LRL, 50BPM, and have to move around to drive it up.  But at the moment I'm working remotely for a giant cellphone company (don't ask why), and the job is proving extremely stressful.  I'm having bad dreams, and sitting in bed at the end of the day my HR is all over the place - I even put my pulseox on last night (I'm too lazy to sit there and count) and spent 5min trying to get my HR down.  Given enough fight-or-flight hormones and Sympathetic nervous system drive, my heart can still find something to drive my ventricles, even if my SA-node is completely kaput.  Thank heavens it doesn't cause narrowing of the airways (although I've had that once after a really stressful competition 2k run - classic histamine-cough, very unpleasant, very tight chest), as it can.  A Boat Race rower some years ago with no history of asthma had a full-blown attack about a mile from the finish and had to stop rowing.

When I was in training there was a debate about whether gentle sedatives were appropriate for asthma sufferers.  I've seen an asthmatic patient of mine have an attack as I explained to her, in front of her family, that her family's smoking was worsening her asthma - their near-physical-violence response triggered an attack: equally I was at school with a lad who would nearly die about every 4-6weeks from a severe attack - enough to make anyone a nervous wreck.  Which was cause, which effect?

I have no doubt that your symptoms are real and reflect physiological changes.  But the root cause?  I suspect that sometimes it's between your ears.  Me too.

Zio Patch

by Gemita - 2020-12-16 18:05:53

Hi Alejandro,

That is awful to lose someone’s medical history and to think that there may have been something really significant on the recordings.  I hope your present Zio patch has recorded some important information, so essential to getting a diagnosis.

Yes it does seem to me that there may well be an element of autonomic dysfunction going on with you and it is incredibly difficult to catch sometimes like so many diseases.  Just build up a picture yourself, keep diary notes, BP/heart rate readings and keep gently pushing for more specific testing is all you can do.  My autonomic problems weren’t easy to spot either and only through another condition (Ehlers Danlos - an inherited condition) was I finally able to see the right specialist for autonomic testing at our National Hospital for Neurology in London.

I would try to confirm the level of calcification present in your major arteries.  CT Angiogram is not gold standard for assessment - cardiac catheterization is gold standard to rule out blockages and confirm degree of calcification but of course it is more invasive.

Keep pushing for investigations for the burning, prickling sensations.  You should at least be able to get an answer about this.  

Don’t say you will keep fighting for an answer, say I will keep gently searching for the truth.  It will be kinder to your body.  So 2021 has to be a better year dear Alejandro for all of us and I hope you will be nearer to finding your peace.   I think you will because you have a special wedding planned if I recall correctly?

Thank you both!

by arent80 - 2020-12-17 11:41:59

Crustyg- thank you! All docs seem to think it's some kind of somatic experience. I hope it is myself. I don't wish any further issues or complications on my body or mind. I just can't believe that anxiety, stress, adrenaline, hormones, etc could be doing this to me. But again I appreciate your input.

Gemita- yes my dear there is a special day for us in 2021. March 20th is the day. I'm so excited! Thank you as well for taking the time to respond. I appreciate all of you!

95% of the time

by Jam - 2020-12-18 17:38:20

Arentas80

i had a PM implant in Oct 2020.  I have experienced the,same thing you,are,describing! I feel good for a,few,days,then if I get to active I,get a feeling of shortness of breath and funny feeling in my chest.  If I rest for a few minutes it will go,away. Can't figure out exactly what causes it but,hope as time goes on it will disappear .   Doctors don't seem to know why so I just quit bringing it up!  I hope as time goes by it will go away. Thank you for your post! Makes me feel normal!

I’m going to guess it’s the Av Hysteresis

by PacedNRunning - 2020-12-20 18:54:28

I'm going to guess its the AV hysteresis.  So basically it paces intermittently and my bet is you feel like this when it's pacing vs when its not pacing.  I'm sure the HR monitor you have on will show this. Of course, when they interpret this they will say normal function of the PM but if you mark it when your feeling it they may be able to tell you if your being paced or not. I use to pace intermittently and could feel it start and stop.  Just standing up for me would cause my PM to pace me.  So if you do it slower, the heart rate won't increase as fast and therefore you may not pace and feel better. just my guess because after a year of pacing, I started intermittently pacing quite a bit and it was super annoying and bothersome. So bothersome I wanted to turn the thing off!!!  It's all fixed now, my heart is block 100% of the time so I pace all the time and never notice a change. Not saying pacing you 100% is the answer but perhaps another mode like Av Search or MVP mode. Something that will be less noticeable 

PacednRunning

by arent80 - 2020-12-21 00:04:30

Thank you! I was thinking same. When I first got the PM I had basic settings only. The ones out of the box so to speak. 50 on the low end, 120 on the high end. From there they've activated CLS, turned it off, activated accelerometer, turned it off and added AV Delay Hysteresis. I only have the AV Delay on which leads me to believe that this feature may be still causing me issues. I'll definitely mention the settings you named. I appreciate your comment very much. Thank you! Trying to narrow this down has been a real pain. Just right now I tried to go for a walk in my neighborhood. It's a slight incline. I could do it before but tonight I was out of breath almost 8 mins in. My heart rate was only 103BPM which to me is low. Anyhow let's see what the new patch says. Hoping I get somewhere this time. Thanks again! 

You’re welcome!

by PacedNRunning - 2020-12-21 04:31:53

The cool thing about Biotronik is I believe you can pick the AV DELAy based on heart rate range. 103 bpm for walking is normal. 90-100bpm walking is normal. The question is...is it pacing on time? Or is it too soon? I had a lot of adjustments to my PM. I was found to be very sensitive to AV synchrony. So if the pacemaker kicked in too late, I felt it. I would become short of breath if it kicked in too late. But as my rate Increased and my Av delay became shorter, I felt less symptoms. Basically as our rate increases our AV delays should shorten to accommodate for the faster heart rate and quicker timing cycles for the heart. I don't think my doctor realized how sensitive I was to the timing or AV synchrony. my doctors answer was to pace me less. He thought since I was sensitive pace me less. Have the pacemaker wait longer. When that didn't work and made things worse, we paced sooner and wallah. felt like a new person. So you just have to make adjustments and see what feels better or what feels worse. Hopefully the ZIO will help you know if it's pacing or not. Hopefully they will measure your PR interval and see what is going on. Not sure why you have a PM but I've experienced just about every setting on this thing. lol 😂. We have AV search kind of like hysteresis. It is awful for exercise! At least for me. Others it may work perfect. Keep us updated. I'm curious and hoping they can figure it out.