Anyone have an experience with Pacemaker Syndrome

[Likethecolorblue]

I had a pacemaker implanted 5 weeks ago and have had orthostatic hypotension every since. I am now charting my Bp while standing, sitting, and supine. Each reading differs by about 20. Example: when supine it reads 162/103 HR 90, Sitting 126/82 HR 72, Standing 88/66 HR 87. I can only walk about 50 feet before I am too dizzy and exhausted and have to sit. I will contact my doctor after the weekend. Has anyone had to have your pacemaker adjusted. If so, what was your experience and how is this done?

[Swalecliffe88]

Hello yes had CRTD (pacemaker & defib) combined fitted 7 weeks ago. Following CA While in hospital had beta blocker dosage increased three fold and suffered on discharge similar to you. But very low bp even while sitting never took readings while standing or laying. I have tried contacting doc and referred consultant none of which have replied in over 2 weeks so adjusted my meds back to original dosage and have not had problems since. Not saying that could be your cause but it has worked for me. Only problem is no medical person interested in helping me to know if I have acted wrongly. NHS in our region completely broken.

[Likethecolorblue in reply to Swalecliffe88]

Thank you! I am charting my blood pres. and heart rate readings over the weekend and will fax to my cardiologist Monday. Hopefully, an adjustment to PM is what I need.

[Swalecliffe88 in reply to Likethecolorblue]

goodness where do you live ? Nhs in our part of country definitely broken by the sound of it. Had CRTD implant 7 weeks ago now. Phoned cardiology dept after 3 weeks as not had any contact from any consultant. Tel appointment 2 weeks ago arranged they never called. Contacted her secretary who promised to get her to contact me and still nothing. Can’t get anyones email address let alone anyone to answer one even if I do send one

[Likethecolorblue in reply to Swalecliffe88]

I live in southern US. I am able to contact our hospital Cardiology group and usually talk with someone to determine if I should go to ER and to get advice. I have contacted them and am charting my blood pressure and HR and will fax it to them Monday. Then wait for them to tell me what to do. Thanks!

[Swalecliffe88 in reply to Likethecolorblue]

That accounts for it. I am in England in the County of Kent and you can’t get to even speak to cardiologist let alone have the relationship and access to one like you have. Just what you get when you have to pay for it. I am having to consider paying for a private consultation because I need help with my medication and can’t seem to get a nhs consultant appointment.

[Hidden]

I have a pacemaker fitted and it has changed my life!

The reasons for mine seem to different to you but I did need an adjustment after a couple of weeks. I sat in a chair and was ‘wired up’ like a standard ecg. The technician filled with a few readings on his large laptop like machine. What looked like a table tennis paddle was passed across my front and that was it. I sat waiting for something to happen and was told it was all done.

I was there there for a full check of the pacemaker so not sure whether the ‘bat’ was related to turning the pacemaker up or not.

Bottom line the adjustments for me were non evasive, quick, painless and disappointingly boring!

Good luck I hope you are feeling better soon.

[Likethecolorblue in reply to Hidden]

Thank you! You have given me some hope. Maybe mine will be that easy. Have a wonderful day!

[Hidden]

Hi, By the sounds of it, you probably need the PM adjusted. Mine is nine years old, and I've had call for it be tinkered with every now and again. Very straightforward to adjust and takes no time at all, as indicated by AJ16. I'm in the UK, and I tend to contact the pacing clinic direct if I'm in between reviews, however, given you've only had it a short time it's probably best to discuss with doctor first in case it's something else causing the issue.

Best wishes

[Hidden]

Dear Likethecolorblue

I too have been fitted with one of these amazing pieces of machinery.

I had to wait around 9/10 weeks for things to "settle down" before my first appointment after the fitting, for the pacemaker to be adjusted.

I was told that I may or may not feel something when they played around with the settings, I must admit that I didn't.

The appointment was over after 10mins and the adjustments had been made.

Sorry to say I didn't seem to feel any improvement to my day to day living but was assured by my Dr that they had managed to up the performance of the unit, so maybe my heart is happier.

Love and best wishes from this side of the pond,

always wondered what happened to the U in colour................

[Likethecolorblue in reply to Hidden]

Thank you! I appreciate the positive feedbacks I receive. I live in the US and I can't remember every spelling with a "u" in color. Thanks!

[ParrotLover22]

Hi. I have had my Pacemaker two years now and at the last Pacemaker Follow-Up, they adjusted it slightly. Try phoning the Pacemaker Department and tell them. Maybe, they will offer you some assurance and see you!

[Doublef]

I had CRTD fitted 4 months a go with regular follow ups, I have found all my medications drop my blood pressure to low and make me dizzy all the time. I now have a steady BP of around120/70 sitting after some adjustments by dropping one medication at a time for effect.

[Likethecolorblue in reply to Doublef]

Thank you for replying! I currently do not take any heart meds and did not take prior to get PM. I am documenting my blood pres. and heart rate readings about every 3 hours to get the picture of what is happening.