pacemaker

Hi, I have a young sister who has had her pacemaker since she was 15 years old. Now she is in her mid 30's. It is so hard for my mother and me to know how she is feeling or what hurts for she is Intellectual disability. My mother and I have to guess depending on her body language and facial gestures of what is going on with her. Recently we noticed that she is not able to sleep. She tries to lay down but as soon her head hits the pillow she get up and tries to sleep in a sitting position. It is devastating to see her like this. One of her doctor had adjusted her heart rhythm to a lower setting at night so she can rest easily. No we are guess if maybe she needs to re adjust it again. Does someone have any knowledge or perhaps has a pacemaker and can tell if they feel anything at night. Maybe its something else not related to the pacemaker, but we don't know.
thanks for the help
mari

4 Comments

sleep

by Tracey_E - 2014-12-05 06:12:51

The only thing that could possibly keep her up at night related to the pacer is if it's set to do nightly self checks, but it would only be for a few minutes and always at the same time. It's not painful, but if someone is a light sleeper it could wake them up. There is a limit to how low they can set it at night without it affecting how she feels during the day so if turning it down a bit didn't help, my guess is turning it down more is not the answer. I hope you get answers!

Change

by Many Blessings - 2014-12-05 09:12:01

Hi Mari,

I'm so sorry your sister is going through this. I'm sure it is heartbreaking to watch and not know what to do.

Does she sleep okay in another room? Or, does it happen any time she lies down? I would look at every possibility out there. Absolutely look at any PM issue, especially anything they may have changed recently. Also, try to think if there is anything that has changed in her bedroom or with her diet, meds, supplements, etc., that could be causing this. If you find anything that changed whatsoever, even if you don't think it should affect her, stop whatever it is or move it from her room depending on if it's something in her room or something she's doing or taking. Did she change detergent, sheets, bedding, lights, nighttime routine, etc.? Is there anything new she's doing, taking, watching, drinking, eating, or doing before bedtime?

I would also schedule her for another PM check and go with her. Ask the PM tech if they made ANY other changes right before she started having trouble sleeping. Even if they made a small change to her settings that shouldn't affect her, it could if she's a sensitive person or if her lead(s) are stimulating something that it wasn't before.

Try watching her when she sleeps to see if you can see anything out of the ordinary as far as movement on her body. Many of us have had a lead setting set too high "for us" that caused diaphragmatic pacing (stimulating the diaphragm) which although it doesn't hurt, is annoying. When mine did it, you could see it from the outside. Even when they turned it down some, you could still see it a little, but I could feel it more than see it. They were able to turn it down to where I can't feel it most of the time, but in certain positions, it will start doing it again. I wonder if it could be something like that? Can she point to where she "doesn't feel well" or "feels different"?

I've also had problems when they turned up my voltage. I don't feel well because of the higher stimulation and where some of my leads are sitting inside (I have a dual chamber, 3 lead CRT-P). When they turned the voltage back down, the icky feeling went away. Others feel better when their voltage is turned up. It really just depends on the person, what their situation is, and a lot of other things.

I'm trying to think of anything that I've had happen that you could ask about when you go back in to her doctor or PM tech. Hopefully, everyone else will be able to come up with more ideas that they have had happen or have heard of happening in others. If it just started happening after her PM check and/or setting change, I'd really push in trying to see what they did and have them change things back just to see if it helps.

Good luck in finding what's causing this. Keep searching to see if it is the PM (settings, etc.) or something totally different.

I wish you the best! Let us know what you come up with.



orthopnea

by cabbie - 2014-12-07 02:12:21

Hi. By any chance does your sister have heart failure? Orthopnea is difficulty lying down causing shortness of breath. Hence the need to sit up and try sleeping upright.

It could help to prop her up with two pillows and/or raise the head of the bed. You will have to take her to the doctor to check if there is fluid in her lungs. Also check if she has swollen ankles/legs. Good luck!

pacemaker II

by amarir1013 - 2014-12-15 11:12:26

Hi
I wanted to thank you all for your comments. I really appreciate them. I wanted to give an update on my baby sister. I hope maybe I can help someone in a similar situation. My mom and i took my baby sister to her Doctor. Pacemaker has life for 6 months to 1 year. The doctor wants to rule out fluid in her lungs so we have an appointment for an echo test. We have the appointment this Friday.
Once again thank you for the comments.
take care
mari

You know you're wired when...

You can finally prove that you have a heart.

Member Quotes

I have earned my Black Belt. I now teach class!