Any suggestions or ideas?

Hello everyone! 

Lately I've had some good days and some bad days. What remains the common denominator is my legs AND when I lie down quickly on my back. Let me explain. Imagine taking an antibacterial wipe, putting it on the floor, and using your feet to scrub the kitchen floor with it. Every time I do the exact same thing I feel horrible after for over an hour. My chest feels like its not getting enough oxygen. I can't explain it. I breathe fine but its just not enough. Today I did the same in the shower, I used my feet to scrub it and during the shower I became weak, felt my heart pounding mixed with some tachy etc. It was awful. I recently had a lower extremity unltrasound from the groin to my ankle and it was normal. 

The other problem is when I lay into my bed. If I go knee first on to the bed, then twist my body and lay down on my back I feel this shift in my chest/heart. It becomes hard to breathe for a few seconds and then it goes away. The only way I can explain it is if you think of one of those hour glass sand timers and you turn it over. That's the only way I can explain what I feel. The last issue is at night when I'm asleep. When I lay on my right side and occassionally on my back, my chest feels clogged and sort of like I'm drowning internally. Then when I change to my back or sit up, it goes away.

With that said I've had a recent echo, good EF (55-60), no fluid in lungs or any other issues. My recent stress test was normal, my zio patch was normal, done lots of blood work and NOTHING shows up. They say I'm fine but I know I am not. Has anyone seen anything like this? It's always when I use my legs or when I lay on my back quickly. Even sometimes when I try to chase my dog or do something rapidly it feels like the output isn't there. However I do not have Chronotropic incompetence. This has become so frustrating I can't even explain how I feel about all of this. Anyhow if anyone has suggestions or ideas, I'm all ears! Thank you very much! 

Alejandro


9 Comments

Frustrating

by Persephone - 2021-07-25 00:15:11

Dear Alejandro - I do not have any technical advice or information to contribute here, but wanted to let you know that I feel concern for your situation and I hope that you'll find some resolution.

My thoughts

by Gemita - 2021-07-25 07:38:29

Alejandro,

I know we have been in communication many times and we know each other well.  I would just like to confirm what action I would want to take in your shoes.  

I accept you have had monitoring in the form of Bio patches, but long term monitoring in the form of the Reveal Linq would certainly be the Queen of all monitors to give a picture of changes in heart rate and rhythm, even for sudden brief periods, and give your doctors lots of detailed, additional information over a long long period of time which is now, in my opinion, necessary for you.  I know it doesn't come cheap, but I would ask again about this anyway. 

Secondly, I know from reading a comment from you that you switched from Lexapro to Wellbutrin recently for anxiety/depression.  They found you were low in iron and you have been diagnosed with Periodic leg movement syndrome (from a sleep study), so this will be affecting your quality of sleep.  I would strongly recommend that you try a course of CBT (cognitive behavioural therapy) to try to overcome your anxiety and if successful, you might be able to consider stopping your medication.  I wonder if the medication for anxiety is causing many unwanted symptoms?

The only other thing I would say to hopefully help is that despite all your difficult symptoms, you are still here to tell the story.  Any serious problem would by now, I imagine, have caused an acute illness.  This seems to be a chronic condition, possibly anxiety related, which is why I feel CBT would be a helpful step to take in conjunction with the implantation of a Reveal Linq monitor.  (Question:  Were you experiencing any similar symptoms PRIOR to your pacemaker and how long have you been suffering from anxiety?)

I hope you are enjoying married life and that otherwise you are both happy.

You won't like this

by crustyg - 2021-07-25 11:09:48

It sounds to me as though your symptoms relate to restricted venous return from your lower body.  At a guess (so I may well be wrong), everything that's been checked has been in your chest.  They *probably* did an IVC sniff test in your recent echo, but I wonder how far down the IVC the u/s exam went.  I did see you report normal ankle-to-groin u/s.

The challenge is twofold: a) is my hypothesis even credible, b) how to investigate it if it is worth considering?  *IF* it's worth considering then I think you're into 'hunt-the-tumour', because that's the most likely cause.

On a more positive note, the tachycardia of POTS *seems* to be partly caused by lack of venous return itself caused by pooling in the gut (which won't show up on u/s), and dietary modification improves this.  Diet, gut health and wider body health is a lot more complex than we were taught back in the day.

CrustyG

by arentas80 - 2021-07-25 12:16:28

Thank you for your input. I was hoping you would mention the "gut" part. What I did not mention is over the past 10 days or I've been having episodes of reactive hypoglycemia but only after I eat. I get clammy, lightheaded, weak legs and feel like fainting. In the past I experienced it when hungry but now its happening after I eat. The doctors referred me to an endocrinologist for a work up but she also mentioned a low carb diet. She wanted to me to go low carbs for 30 days, then do intermittent fasting. 

I will mention your theory to the docs but like you said how to test for it. I also don't think I understood the hunt the tumor part. Tumor like cancer? Tumor where? Appreciate your input as always! Thank you! 

Gemita :-)

by arentas80 - 2021-07-25 12:28:09

Thank you for your wonderful comments as always! This is all post pacemaker and is getting worse. There is a component of anxiety sure, but I feel it's from NOT knowing more than anything else. Being a Hispanic male we can be very expressive and emotional at times but it's our culture, not our anxiety. I think the doctors read into it a little more than they should as well. I try to explain the symptoms but because I waive my hands or speak very emotionally they may be thinking anxiety. It's really not. I know my body. I've lived in it for 41 years now and something is not right. This may be beyond the scope of this website but I took a shot. I wanted to get opinions from others who may have experienced similar Or know someone who has. I appreciate your words I really do. Married life is wonderful! At least that's a positive I can count on daily :-)

Alejandro

by Gemita - 2021-07-25 13:51:26

I certainly wouldn’t put all of your symptoms down to anxiety, which is why I asked “how long have you been anxious”?  I can see all, if not most of your symptoms, seem to have started at the time of your pacemaker implant which is why we have so far only been looking for answers here, but is it the best starting place I wonder? 

I just feel being on anxiety medication may cause some unwanted symptoms and that you might be better to look for more holistic, natural, effective treatment options (like CBT) for your anxiety which will help you to cope better until you get answers.  It could be a long haul yet, and you clearly need help to manage your symptoms and feelings, rather than suppress them with meds like Wellbutrin.

Hypoglycaemia can be awful.  I can suffer from it when I eat on a relatively empty stomach.  Then when I eat I feel like passing out, as though I haven't got any fuel in my body on which to run, so for me eating little and often is the key Alejandro to prevent some of the symptoms you describe.  A healthy gut is so important for immune health in particular and for our health in general.  Keep asking those questions and keep being "you".

I get weak in the knees

by TLee - 2021-07-25 14:08:34

Your experience does sound like it could be more serious than anything that I have had recently, but I do get an odd feeling on occasion that remains somewhat of a mystery. I will sometimes feel like my legs are too weak to carry me. Most recenty I went to the grocery store--felt fine before & had no trouble getting there, got out of the car to walk in & felt very weak in the legs & a little off balance. As I said, it was not severe & it went away as I continued on. I have felt a similar thing occasionally during other activities. I tend to have low blood pressure & I sometimes don't stay as hydrated as I should. I hope your symptoms are related to something fairly simple & you feel better soon. 

wicked ways of anxiety

by athena123 - 2021-07-25 22:22:35

Hi, i think Gemita hit it right on the head with anxiety. I have anxiety as most know and it does give me these unwanted symptoms.  I at times feed into it and things seem to become worse. I too, have been going to therapy to find the root of my issue, because medication is a bandaid to mask the problem. I think by me being on lexapro has been making my condition worse, nevousness, palpitations,  ect. If it is is medical please persue the cause and make sure it isnt.. Some days for me are ok, but then there are those times were ill be at the gym and be in a state of complete funk, brain fog, and it completely overtakes me. , Stay strong my friend because we here will stay strong for you.as well.  

Alejandro

by TAC - 2021-07-26 12:21:14

Certain amount of anxiety is NORMAL when you experience sudden  unexplained physical symptoms. About the symptoms you describe, it's difficult to guess what is causing them because of insuficient information. Yes, you describe your symptoms pretty well. However, You don't say your age, whether you carry a pacemaker or not, the condition you're are being treated by your doctor, your medicines and other medical conditions you suffer from.

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