Think my Mum has pacemaker syndrome and need help!

Hello everyone

my Mum had a pacemaker fitted in November 2016 and ever since her health has been terrible. She is 77. I am convinced that she has pacemaker syndrome and don't know what to do about it as none of the medics seems to have an answer. The pacemaker itself is functioning fine so her cardiologist doesn't think there is much more to discuss. Her symptoms include: crippling lethargy, nausea, memory difficulties, mini seizures where she is momentarily 'absent' and becomes confused. She has had a CT scan which was clear. She has also been investigated for stroke and TIAs and nothing came up. All her bloods are fine. she saw a neurologist who said she was stressed. All of her symptoms started pretty much overnight after the pacemaker was fitted. We live in London. Does anyone know of any specialists in London who might deal with this? Has anyone had similar experiences or symptoms like this? Please help! She is living a half-life and it is terrible to watch. Really hope to hear from some of you. 

3 Comments

Tough one...

by JoJo B - 2017-05-02 19:11:07

So very sorry to hear of your mum's troubles, and your painful concerns for her.  Seems such a tough nut to crack, but somewhere there will be an answer at least better clues...

I wouldn't know how to help, but I do encourage you to keep searching and perhaps reconsider some of your many efforts... Such as the cardiologist response about the pacemaker seeming so mechanically done with it all - perhaps another outside expert opinion on troubleshooting cardiac issues and pacemaker problems could help, at least provide more suggestions, other referrals? The neurologist said she is stressed - what was the recommended treatment for that stress? Type and cause of stress? Meds/dosages may be having negative interactions with each other - allergic reactions also... 

You obviously don't want to give up on your mum, so ask physicians within the best of your abilities and resources, if they too will not give up, help you to find answers, potential treatments... Could be so many things yet to be determined, but only you and the physicians can decide. Deep breath, buck up, hope for the best each new day of trying and praying... And God bless you for all that trying!  Hoping someone else will have better ideas for you... Best wishes

finger pulse oximeter

by marylandpm - 2017-05-02 20:28:58

One easy test you could do is pick up a fingertip pulse oximeter and record any drop in O2.

Drug stores here have them for about $30.00 . Also the pacemaker report should show any AFib.  

PACEMAKER SYNDROME

by BOBJ - 2017-05-03 09:31:23

From what I can gather there are no specific test for this. Doctors often shy away from things they cannot prove straight on.

From the other information I can gather you need to start with the device tech. There may be evidence of this from data stored in the device.

 

 

You know you're wired when...

You have a $50,000 chest.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.