Curious - dysautonomia?

Posted by yellowdoggirl @yellowdoggirl, Aug 26 10:10am

I had very thorough range of tests for dysautonomia, POTS with a neurologist specializing in it. He's the only one in my state who does. Results said they were "abnormal", but then he told me that there are no reference values for a person of my age. I wonder what the point was of doing all those tests in that case.
I'm glad I have good insurance!
The whole story: I am almost 70 y.o., have UCTD, celiac disease, pernicious anemia, osteoporosis, IBS, small airways disease, AFib, bradycardia, and PVC's. Taking midodrine to address low blood pressure. It raises it to 110's/60's, had one at 175/150.
I swim and or walk every day. It's getting harder to swim. I'm tired.
I'm thinking of accepting a pacemaker.
Pulse in mid-low 40's, occasionally 38-39. Foggy brained, sometimes dizzy. Have had falls, cracked a bone.
Posted this in heart arrhythmia group,too. I am just curious.
Thank you!
@yellowdoggirl

Interested in more discussions like this? Go to the Brain & Nervous System group.

@yellowdoggirl As I read your list of symptoms, what is jumping out at me is that your pulse is down to 40 beats a minute which is about half of what is considered a normal range, and with airway disease that will limit oxygen uptake to a degree, and together this must seriously affect your health. Dizziness, falling, and foggy brain can all be symptoms of low oxygen levels because the delivery systems of your heart and lungs are not efficient. I would think this could cause extreme fatigue. I have allergic asthma, and when my lungs shut down and my oxygen levels drop a bit, I am very tired until I can clear the phlegm. The risk of falling is something that can change your life in an instant causing further injury that could be serious such as fractures or head injuries. That all leads to disability and possible financial loss when a person is unable to care for themselves. My dad had a head injury and even though he survived after 3 months in a hospital, he was never the same. I broke my ankle 2 years ago and experienced how disabling that can be by loosing mobility. I still have weakness and some pain with my ankle. The best medicine is prevention and talking to your doctors now about what your risks are and how to best address and prevent them.

Was it a cardiologist who suggested a pacemaker? By the way, my dad had a pacemaker/defibrillator and it saved his life several times when he had heart arrhythmia. It was placed just under the skin on his chest and it was not a difficult surgery.

How long ago did your doctor suggest a pacemaker? Have you been following up with a cardiologist? I think that would be very important. When is your next appointment with a medical provider? What are your concerns that have stopped you from getting a pacemaker?

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Hi @jenniferhunter, what you are saying makes sense!
Thank you!
It was the APRN who works with the electrophysiologist who suggested a pacemaker on the occasion of a SPECT heart scan in late May. It resulted in poor images and I had a PET scan 2 weeks later. That showed no blockages and a normal heart again with slow heart rate. I see my PCP in mid September, cardiologist in December, and electrophysiologist in February. The APRN seems to be in charge now. First I would have to have a 24 hour Holter showing average rate of below 50, then I could have a pacemaker. The electrophysiologist who would put it in kind of blew me off when I said I think my brain needs more O2 and prescribed midodrine to raise my low BP.
That helped, but left me more confused about the situation and with less confidence in that doctor.
I had full dysautonomia tests which was "abnormal" but then they said they can't really tell anything because there are no reference values for people my age! (So why test?)
I think I will wait to talk with my PCP who really listens, can get something done, and whom I trust. She doesn't dismiss me like the electrophysiologist seems to.
Also, I am making a list of questions and have a long record of bp/heart rate.
(I cracked a bone in a forearm while falling so sent myself to PT for balance.)

REPLY
@yellowdoggirl

Hi @jenniferhunter, what you are saying makes sense!
Thank you!
It was the APRN who works with the electrophysiologist who suggested a pacemaker on the occasion of a SPECT heart scan in late May. It resulted in poor images and I had a PET scan 2 weeks later. That showed no blockages and a normal heart again with slow heart rate. I see my PCP in mid September, cardiologist in December, and electrophysiologist in February. The APRN seems to be in charge now. First I would have to have a 24 hour Holter showing average rate of below 50, then I could have a pacemaker. The electrophysiologist who would put it in kind of blew me off when I said I think my brain needs more O2 and prescribed midodrine to raise my low BP.
That helped, but left me more confused about the situation and with less confidence in that doctor.
I had full dysautonomia tests which was "abnormal" but then they said they can't really tell anything because there are no reference values for people my age! (So why test?)
I think I will wait to talk with my PCP who really listens, can get something done, and whom I trust. She doesn't dismiss me like the electrophysiologist seems to.
Also, I am making a list of questions and have a long record of bp/heart rate.
(I cracked a bone in a forearm while falling so sent myself to PT for balance.)

Jump to this post

@yellowdoggirl You deserve to be treated better. Perhaps another opinion with a different electrophysiologist would benefit you? You may want to print out all the symptoms that you wrote about here and take that with you to your appointment in September, and discuss with your doctor how you feel dismissed by the specialist. You already have a fracture from a fall.

Have you considered using a cane or walker for stability? I have both of those after fracturing my ankle badly and it really does help. That was 2 years ago, and that was a long difficult recovery. My ankle is still weak, but I do OK.

You always have to advocate for yourself. Remember, you are the customer and your doctors work for you. You deserve complete explanations and discussions about your health so you understand your conditions. You can hire someone else if you feel like your doctor isn't doing a good job. Talk to your PT about all this too. PT's know lots of doctors because they get referrals from them. They can be a great source of information if you are doctor shopping. PT's can also tell you if they suspect you have a serious issue that needs to be seen. They can't diagnose the problem, but they see enough to know what is going on with many patients and which doctors the patients are seeing for specific problems. It's great that you have no blockages. If you talk about fear of falling because you feel a bit tired and dizzy, that will probably get your doctor's attention. If it does not, that would be a huge red flag to me. This is always a big concern for aging patients. If they don't listen, they are not doing their job.

We have a Heart Rhythm Group with a lot of discussions that may interest you that you can find here: https://connect.mayoclinic.org/group/heart-rhythm-conditions/

I do see that you have posted there, so hopefully you will get responses.

Here is a discussion where members are talking about low heart rates.
"Bradycardia What's a Too Low Heart Rate"
https://connect.mayoclinic.org/discussion/bradycardia-whats-a-too-low-heart-rate/
Could you share your list of questions that you want to ask your doctor?

REPLY
@jenniferhunter

@yellowdoggirl You deserve to be treated better. Perhaps another opinion with a different electrophysiologist would benefit you? You may want to print out all the symptoms that you wrote about here and take that with you to your appointment in September, and discuss with your doctor how you feel dismissed by the specialist. You already have a fracture from a fall.

Have you considered using a cane or walker for stability? I have both of those after fracturing my ankle badly and it really does help. That was 2 years ago, and that was a long difficult recovery. My ankle is still weak, but I do OK.

You always have to advocate for yourself. Remember, you are the customer and your doctors work for you. You deserve complete explanations and discussions about your health so you understand your conditions. You can hire someone else if you feel like your doctor isn't doing a good job. Talk to your PT about all this too. PT's know lots of doctors because they get referrals from them. They can be a great source of information if you are doctor shopping. PT's can also tell you if they suspect you have a serious issue that needs to be seen. They can't diagnose the problem, but they see enough to know what is going on with many patients and which doctors the patients are seeing for specific problems. It's great that you have no blockages. If you talk about fear of falling because you feel a bit tired and dizzy, that will probably get your doctor's attention. If it does not, that would be a huge red flag to me. This is always a big concern for aging patients. If they don't listen, they are not doing their job.

We have a Heart Rhythm Group with a lot of discussions that may interest you that you can find here: https://connect.mayoclinic.org/group/heart-rhythm-conditions/

I do see that you have posted there, so hopefully you will get responses.

Here is a discussion where members are talking about low heart rates.
"Bradycardia What's a Too Low Heart Rate"
https://connect.mayoclinic.org/discussion/bradycardia-whats-a-too-low-heart-rate/
Could you share your list of questions that you want to ask your doctor?

Jump to this post

@jenniferhunter, sure I will share my list when it's compiled. Yes, I had encouragement from one person in the group. Thank you for your time in writing all these things!
I have a great PT who has helped me a lot over the years including by directing me to the best shoulder surgeon around for a problem which PT could not solve. I probably trust him more than any of my other medical people.
I have another electrophysiologist picked out to whom I might go. A woman! In general, I think they listen better than the often-dismissive men. Checking my appointments I see that my next appointment with the electrophysiology department is actually with the APRN, not with the MD who hasn't returned one email from me in 2 years. It seems like a really strange culture!
I get really confused about him. I don't know what to make of him except he doesn't seem very helpful.
Maybe he is a good mechanic and that got him where he is. That is important, too, I know.
My mom had a pacemaker at age 85 after a big open surgery on her heart. That was almost an After thought. She was in the cardiac ICU for 3 weeks which was unheard of. That's too long of a story. This is long, too, because I've been telling them for at least 2 years that my heart rate was in the '40s while they said "Oh no it is always in the seventies" even though they had no way of knowing.
There are so many contradictions in this whole saga that I just don't know what to think sometimes. That's the real problem. I can't even begin to relate all that stuff.
Swimming and walking make me happy so I just keep at it.
My friend broke her ankle in Italy years ago and it took a very long time to heal. She was working there and flew back with a cast on her foot concerned all the while about getting a blood clot. The treatment for it in Italy cost her nothing. Quite a difference from here!
Thank you again for your help!

REPLY
@yellowdoggirl

@jenniferhunter, sure I will share my list when it's compiled. Yes, I had encouragement from one person in the group. Thank you for your time in writing all these things!
I have a great PT who has helped me a lot over the years including by directing me to the best shoulder surgeon around for a problem which PT could not solve. I probably trust him more than any of my other medical people.
I have another electrophysiologist picked out to whom I might go. A woman! In general, I think they listen better than the often-dismissive men. Checking my appointments I see that my next appointment with the electrophysiology department is actually with the APRN, not with the MD who hasn't returned one email from me in 2 years. It seems like a really strange culture!
I get really confused about him. I don't know what to make of him except he doesn't seem very helpful.
Maybe he is a good mechanic and that got him where he is. That is important, too, I know.
My mom had a pacemaker at age 85 after a big open surgery on her heart. That was almost an After thought. She was in the cardiac ICU for 3 weeks which was unheard of. That's too long of a story. This is long, too, because I've been telling them for at least 2 years that my heart rate was in the '40s while they said "Oh no it is always in the seventies" even though they had no way of knowing.
There are so many contradictions in this whole saga that I just don't know what to think sometimes. That's the real problem. I can't even begin to relate all that stuff.
Swimming and walking make me happy so I just keep at it.
My friend broke her ankle in Italy years ago and it took a very long time to heal. She was working there and flew back with a cast on her foot concerned all the while about getting a blood clot. The treatment for it in Italy cost her nothing. Quite a difference from here!
Thank you again for your help!

Jump to this post

@jenniferhunter ,
Here's my list! I hope it is a good one!
Does bradycardia keep getting worse if I just keep waiting? Might it go away?
Is it damaging organs while I let the bradycardia continue?
Is the main problem now limited to the unpleasant way I sometimes feel and the danger of falling?
(I have cracked the radius in one arm.)
What about other, if any (Afib and any others?) arrhythmias if there are any?
What is/are the names/names of the ones I have?
Should there be an EP evaluation before deciding on a pacemaker? (said that in a book)
Will it be MRI – safe?
How many leads would the pacemaker have?
Would it address Afib, or would more medications alone be used for that? Just Metoprolol?
Would it be safe for me to plug in and disconnect my semi-electric car?
How far away from our portable generator would I have to stay, if it is running?
Any other electrical complications?
I read about cell phones 6” away, airport security scans and store security scanning devices. What sort of “misbehaviors” by the pacemaker would they possibly cause?
Who would install it?
I have read that up to 10% of people who get pacemakers feel worse from having an inappropriate kind or from incorrect programming. How likely is this?
Can I drink some alcohol?
What exactly did you mean by, “A pacemaker is a big commitment”?
I await a reply from the APRN. I am confident that she will answer.

REPLY
@yellowdoggirl

@jenniferhunter ,
Here's my list! I hope it is a good one!
Does bradycardia keep getting worse if I just keep waiting? Might it go away?
Is it damaging organs while I let the bradycardia continue?
Is the main problem now limited to the unpleasant way I sometimes feel and the danger of falling?
(I have cracked the radius in one arm.)
What about other, if any (Afib and any others?) arrhythmias if there are any?
What is/are the names/names of the ones I have?
Should there be an EP evaluation before deciding on a pacemaker? (said that in a book)
Will it be MRI – safe?
How many leads would the pacemaker have?
Would it address Afib, or would more medications alone be used for that? Just Metoprolol?
Would it be safe for me to plug in and disconnect my semi-electric car?
How far away from our portable generator would I have to stay, if it is running?
Any other electrical complications?
I read about cell phones 6” away, airport security scans and store security scanning devices. What sort of “misbehaviors” by the pacemaker would they possibly cause?
Who would install it?
I have read that up to 10% of people who get pacemakers feel worse from having an inappropriate kind or from incorrect programming. How likely is this?
Can I drink some alcohol?
What exactly did you mean by, “A pacemaker is a big commitment”?
I await a reply from the APRN. I am confident that she will answer.

Jump to this post

@yellowdoggirl Those are excellent questions!

In your question about what is the "main problem" being limited…. I actually see problems as being interconnected, not limited to a single answer. For example, if you felt dizzy because of a heart malfunction and you fall and break your arm, those 2 problems are related because one significantly contributed to the other. There could have been other factors causing dizziness like a hearing or vision problem or a reaction to a medication or an abnormality in the vascular system. Your doctor should be thinking like this to find all the causes of a symptom, and not just assume there is only one.

You can always ask what else could cause the problem? Sometimes it is more difficult in making a diagnosis, and it can be made by excluding other issues in what they call a differential diagnosis. I am a spine surgery patient, and they had to exclude other problems that can also cause nerve pain elsewhere in the body in order to conclude that the pain was being caused by a problem in the spine itself. This is important because you don't want to do spine surgery that doesn't fix the pain because you didn't find the correct cause of the pain. That is just an example for discussion, and my spine surgery was very successful.

Questions I might add about a pacemaker would be:

How often does a pacemaker need to be replaced due to battery life?

Can it be adjusted and reprogrammed remotely or at an office call?

Will there be a monitoring station that sends data to the doctor daily through wireless communication while I sleep?

How large is the pacemaker and will it be visible to everyone like a lump?

REPLY
@jenniferhunter

@yellowdoggirl Those are excellent questions!

In your question about what is the "main problem" being limited…. I actually see problems as being interconnected, not limited to a single answer. For example, if you felt dizzy because of a heart malfunction and you fall and break your arm, those 2 problems are related because one significantly contributed to the other. There could have been other factors causing dizziness like a hearing or vision problem or a reaction to a medication or an abnormality in the vascular system. Your doctor should be thinking like this to find all the causes of a symptom, and not just assume there is only one.

You can always ask what else could cause the problem? Sometimes it is more difficult in making a diagnosis, and it can be made by excluding other issues in what they call a differential diagnosis. I am a spine surgery patient, and they had to exclude other problems that can also cause nerve pain elsewhere in the body in order to conclude that the pain was being caused by a problem in the spine itself. This is important because you don't want to do spine surgery that doesn't fix the pain because you didn't find the correct cause of the pain. That is just an example for discussion, and my spine surgery was very successful.

Questions I might add about a pacemaker would be:

How often does a pacemaker need to be replaced due to battery life?

Can it be adjusted and reprogrammed remotely or at an office call?

Will there be a monitoring station that sends data to the doctor daily through wireless communication while I sleep?

How large is the pacemaker and will it be visible to everyone like a lump?

Jump to this post

Thank you so much @jenniferhunter!
Those are great additional questions and I will add them to the list.
I think some have been partly addressed already, but I will ask again just to make sure.
The problem with having all these specialists is that each one only looks at one little piece of the body, kind of like the people describing an elephant from being like a rope ( the one holding the tail) to being like a tree from the ones touching the legs and so on. That is why I wanted to talk with my pcp before going forth with this. She's a good "ringmaster" for what sometimes seems like a circus, speaking irreverently.

REPLY
@yellowdoggirl

Thank you so much @jenniferhunter!
Those are great additional questions and I will add them to the list.
I think some have been partly addressed already, but I will ask again just to make sure.
The problem with having all these specialists is that each one only looks at one little piece of the body, kind of like the people describing an elephant from being like a rope ( the one holding the tail) to being like a tree from the ones touching the legs and so on. That is why I wanted to talk with my pcp before going forth with this. She's a good "ringmaster" for what sometimes seems like a circus, speaking irreverently.

Jump to this post

@yellowdoggirl Oh you made me giggle… it just so happens that I rode an elephant last week at a circus, and I did touch its head while I was on its back and that just felt like a dry rock with some coarse grass (hairs). You are so right, your doctors need to see the bigger picture even if they just focus on a smaller piece of it…. and I did talk to the ringmaster too, and he was a very nice guy.

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My heart rate was that slow and I did get a pacemaker. It’s really a non evasive surgery. With a pulse that low your body cannot get the oxygen it needs to feel normal. Normal heart beat is 80 bpm. Yours being 40 is half normal
Rate. This increases the chance of developing blood clots, stroke and death from heart arrhythmias. Please get the pacemaker and you will be so happy you did. By the way I’m 65.

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@frattmaa

My heart rate was that slow and I did get a pacemaker. It’s really a non evasive surgery. With a pulse that low your body cannot get the oxygen it needs to feel normal. Normal heart beat is 80 bpm. Yours being 40 is half normal
Rate. This increases the chance of developing blood clots, stroke and death from heart arrhythmias. Please get the pacemaker and you will be so happy you did. By the way I’m 65.

Jump to this post

@frattmaa , thank you so much!
That's very helpful to hear!

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