it is under his collar bone. I rang ward sister and she said it wasn’t right. Waiting for the doctors to come round and she thinks they might have to do the operation again
it is under his collar bone. I rang ward sister and she said it wasn’t right. Waiting for the doctors to come round and she thinks they might have to do the operation again
I just started having problems with mine when I lay on my side. My doctor said they may have to put a few stitches in because whatever side I lay on I get a bubble of sorts. It’s my pacemaker. If I lay back on my back, it goes to where it belongs. I I am a side sleeper or a stomach sleeper. Not about to change at my age. I even slept on my stomach the whole time I was pregnant. I have a funny feeling that someone other than my doctor closed some thing for him because it is a teaching hospital. This only started a few weeks ago FYI I think my doctor thought I was crazy telling him about it. He tried to get me to lay on my side to cause it to do it. I just realized I had a bra on which would’ve kept it in place. He told me to take a picture lol I notice it in the middle of the night if I wake up, have you ever tried to grab your camera and take a picture in the dark or if I put the light on it has already slipped back where it belongs. At least this is being noticed in the hospital. It might be the same type of thing and they can fix it right away.
doctors been round and third lead near the top of the diaphragm so when PM kicks in it sends the diaphragm into spasms
They tried re-programming this morning, but it didn’t work so gone off to find consultant as might have to do another operation. If left with just 2 leads not function properly
I hope they fix it. I have three leads, but only one is being used right now 100%. The second lead can be switched over if anything happens to the first the third one is not connected right now but it’s there if they ever need it. Ask your doctor about HIS pace bundling it’s the way that they wire. It’s still relatively new. It is what I have. I am also monitored 24 seven and have an app on my phone which is how they monitor. I also have the device clinic that I can call 24 seven as well as have a doctor on the phone usually within 10 minutes. the problem with what I have is it doesn’t really exist except for me until my doctor teaches others. That means someplace like the ER can only keep me comfortable.
I thought I was going to get a biventricular but with the three things I have including heart failure, and I forget what else, that would not have been able to help me. If you end up, needing changes again, mention this to your doctor to see if he is familiar with the Azura pacemaker for Medtronics. And as I said, the HIS.
thank you so much. I know the doctors said 2 out of 3 leads working was ok but I am worried for trevor. I have to take my BP every morning and evening as going into Harefield on 29th September, so I’ve been taking trevor’s as well snd although the heart rate count seems ok it is still uneven
thank you. I found this on Google’s and wondered if could be it. He’s back in hospital again..
Yes still here and waiting for the medical team.
Could it be this???? Found on Google
74-year-old woman with a permanent pacemaker was scheduled to undergo mastectomy. The pacing mode was switched from DDD to VOO intraoperatively to avoid electromagnetic interference. Immediately after returning the pacing mode to DDD after surgery, diaphragmatic contractions occurred, mimicking bucking type of movements. After switching the pacing to A-sense V-pace, the twitching ceased. Because no structural problems were noted, and the twitching disappeared after terminating atrial pacing, diaphragmatic contractions might be caused by stimulation of the right phrenic nerve located near the right appendage where the electrode was installed.
interesting because I was getting a strange feeling after having my pacemaker finish. When my technician checked it out, she discovered that my back up switch was on. It sounds similar to what you just mentioned and when it was off I was fine I did not have the bucking or anything that you described but I definitely felt it and it wasn’t typical flutter. I have a typical and will still feel it, so it no longer affects my heart because of the pacemaker.
yes I did and was told it can’t be that! It was just poopoohed . I still get hiccups now4 months on but nowhere near as bad. I would still speak to someone though as when I read up about it the article said it could be that one of the leads is too near the diaphragm. I also get like sobs, a double inhale but not been able to speak to anyone about it. Hope you have better luck than I.
I am trying but at the moment none of the doctors in an and e have a clue. Hopefully there will be a cardiologist amongst the medical team WHEN they arrive
would you tell me about your hiccups? Since December when I had a cardioversion that failed, I have had hiccups. Usually I get them around dinner time. They don’t continue too long but it’s strange. It’s every night and I seem to get them whenever I have to go see my EP lol at night it is if I am on a timer for them. Recently, I got them while I was sleeping, which is really annoying.
Before this started, I could not tell you the last time I remember having hiccups. In fact, when I get them, I think of as a child when my mother would give me a spoonful of sugar.
hi Dawn, my hiccups are a nuisance, I can’t remember when I last had hiccups- years ago yet my device nurse says it isn’t that! I also get twitches in my abdomen on my left side which developed after the hiccups. Twice the nurse has poohpoohed it .
I am still totally fatigued since my crt-p was turned on in February. They have me running at 50 BPM which even when I was fit was 60. ( I had AV node ablation in Feb)
I’ve had such excellent care up to now but feel I’m being ignored . I’m going to try and ring my cardiologist s secretary tomorrow to see if I can get to talk to/ see someone. I can’t walk far and keep going purple so I think my heart is sending all the blood to my organs. I just don’t know what to do. Hope you have better luck.
Mine is a 3 lead pacemaker and I think only 2 lead s are turned on . I didn’t get told about specifics and don’t really know what to ask. Also I am retaining fluid which I didn’t do before and that doesn’t help my breathing.
I am so sorry about that. I think I told you I have two connected, but one stays off unless the other one has a problem and then it will switch over. The third is not connected. It is in the atria, but I can be connected. Do you also have heart failure? I do I didn’t always have it. It was after the long period of time with the 150+ HR. My doctor says it came from that. Your heart just gets exhausted.
Regarding my hiccups, that was the one time I did not like my cardiologist because he laughed. At the time there was a lot going on, so I did not tell him that I had read that there is definitely a link between hiccups and heart failure. I’m not sure if it means constant hiccups or what they are talking about but it is linked together. they seem to have slowed down. A few weeks ago I felt I had turned a corner to a better place with my pacemaker at Cetera. Maybe that’s why the hiccups are slowing down also. I do get them during the day occasionally but for the most part, it’s always early evening, when I am just sitting.
I don’t care how good the doctor is, just because he doesn’t know some thing doesn’t mean it’s not real. My EP is like a walking. MEDICAL book he probably would not have laughed. but given an explanation. I will tell you right now the majority of doctors cannot give answers about my pacemaker, etc. because it is unique. It’s not the device. It is the way that it was wired with a thing called HIS pace bundling. Because of the way I am done I have been called, unique, one-of-a-kind, etc. even the tech assigned to me from the device company will often contact an engineer. I can’t imagine one person having all the answers it is so intricate. My doctor takes care of the electrical panel inside me lol he does have a degree having to do with IT because they really need that these days.
do not give up and don’t let anyone talk down to you, question them. I love the nurses I have had but sometimes One might have ego issues and just don’t want to tell you they don’t know. I am a pain in the butt I ask questions. I have been blessed with a Doctor Who has been teaching me from before the surgery and I listen to him because the pacemaker is forever. I used to think they were teasing me by Calling me special and unique lol I have a sense of humor so I would say I am not weird lol it really took my last visit for me to realize just how different I am wired. I had concern with my battery, thinking it lost more than half its life overnight. Long story short engineers got involved and because I am 100% dependent on because of the special wiring, life for this battery is 5 to 8 years, not the 10 that most people get. it had 120 day. I guess you guys would call it blanking period. It was being tested so to speak, and only the engineers could see the facts. What I was seeing was not what it really was. It had just flipped over a few days before I happened to see the shorter life.
This is why it is best to talk to your doctor and if you have a tech talk to them. There is nothing absolute when it comes to devices anymore because every day something different is coming out or changed. We can share how we feel but if you have a pacemaker, especially a newer one, talk to your doctor. My doctor had no problem, reaching out to engineers, even though he is the one who devised. How it works inside me. That’s what I love about him. No ego problems. Within hours of my call he had me in his office I am put first with him. There is no doubt why I adore him. He told me that he told me before I’m not going anywhere away from him. I had asked him a question about dying when I was on the table.
PS absolutely there is the possibility about your circulation because that was mine. I could not walk I could barely shuffle holding on the wall to get to the bathroom. I had no appetite. I could barely hold a sandwich. Yes that’s what the heart does. It will provide circulation to the most important. That is why other parts finally gone, but the brain, etc. still have some life.
I don’t know where you are in terms of treatment. My doctor does not believe in repeating failed procedures so when the cardioversion did not work, he worked on my pacemaker and ablation fitting. I had a fib and atypical flutter for about 2 1/2 years. And continued on a downward spiral until my pacemaker or I should say my doctor. Hopefully they will make a decision to give you the best quality of life as soon as she could get it. I found my new Cardiologis the end of October 1 November, I met my new EP who did my cardioversion Christmas week I either thought or wanted to die because the cardioversion had failed. Valentines eve I got a new beginning and miracle in my eyes and by the end of the month I had quality of life I never thought I would see again. As I sit here now I am still amazed how good I feel. There are new things every day keep smiling, and especially thing positive. Do not think like I did. I have a new, saying, I tell people now, and if they look up the song or remember it, they will probably smile. Frank Sinatra had a song called High Hopes, and for whatever reason that plays in my brain.
yes I now have heart failure which I didn't but last April went into permanent AF, it never stopped at all. I am also completely dependent on my pacemaker as my ventricles were beating allover the place so they ablated my av node.
that's what gave me the heart failure I think.
the hiccups are not as bad but still enough to be a nuisance and this twitching is a really bizarre feeling. I only feel it when I am lying down.
I only had one cardio version but my cardiologist wouldn't do another one as he said from readings it wouldn't work , hence the crt-p pacemaker.
I am a positive person generally but this is really getting me down. I also have avrcose veins in my upper left arm which ive never had and didn't even know you got them in your arms. I don't have them in my legs.
oh my goodness you and I sound very much like in fact, that’s when I started getting worse, last April. I was permanent, a fib, as well as a typical flutter pretty much from the beginning. Long story short after I moved to Texas I went to a Doctor Who is supposed to be all that. he did a very aggressive procedure on me. In fact, he did that one and a few others at the same time to the best of my knowledge. The procedure is one that he was the pioneer of. I went downhill after that not only did it not work, but that is when I started with 150+ heart rate constant. I think I told you I was unable to walk only shuffle painfully to the bathroom, etc. I had question chest pain and shortness of breath and more. I truly believe that because he knew his procedure VOM Vein of Marshall had failed that he no longer wanted to acknowledge me. I had a falling out with his medical secretary, who could not do her job right. After that, I could not get a callback from anyone or an email at Cetera. I was so overwhelmed and sick I could not do anything for myself, including finding a doctor. It was very hard because I had moved from Florida to here. If not for our mail, lady, who knows what I would be like now. We were talking a little story short. She told me about a doctor at our local hospital that her parents used. I had gone to a big one that may still be a number one not only in the country but I believe I was told in the world. I have nothing against the hospital. They were amazing to me.
Anyway, I met with him, and he set me up for a cardioversion the end of that week. I woke up, smiling. It had work, and as soon as I opened my eyes, I knew I was much better. My heart rate was down to 82 and I felt incredible. I had arrived needing a wheelchair but was able to walk out. Sadly, it only lasted 3 1/2 weeks but it was 3 1/2 of the best weeks ever. He then had me meet my EP I was scheduled for another cardioversion as well as staying in the hospital several days while they tested a new medication on me. Unfortunately, the cardioversion did not work so everything was canceled because I needed to be NSR that is when I pretty much gave up. My doctor and your doctor are awesome. My doctor also would not do another. He does not believe in repeating failures, and also would not do another ablation because of all the scarring I had from the surgery in April. When I woke up and he told me it failed, I had cried. He took my hand and told me we’ve got this you’re not going anywhere without me. I think I had said something about dying. I do remember him taking my hand and that’s when he told me I wasn’t going anywhere. It took about a month. Meanwhile, he tested digoxin on me which started to work, but only for two weeks he then doubled it. , but it stopped working again.
it sounds like your heart failure came like minded, and my doctor said it was because I had any left in tachycardia for so long that my heart was just exhausted. My ventricles were also like it was all over the place and dangerous to me. I don’t know what you got for a pacemaker. Actually it’s not the pacemaker I just found out it’s the fitting of it. I am the only one that has what I have. When there are any questions, they have the engineers from the company get involved. I have my main lead, a second lead if there is a problem, and a third attached partially to the atria and usable, if necessary, but not hooked up currently. I also have an app on my phone. Today they actually took a transmission while I was home. I had very strange feelings going on, but they found nothing unusual. I will see him the first week of August unless I continue not feeling right. His nurse told me to either go to the ER or if I want to go to see him. I told her it doesn’t hurt. It just doesn’t feel right so I will leave it for the appointment unless something changes.
I have the Medtronics Azure with HIS pace bundling. The HIS is what makes it unique.
I wonder if this is what you have as well or similar. My doctor is the one that made this for me, and actually was invited to Dallas after presenting my case at something he was attending. They want him to teach other EPS there. To help save other people like me. It’s amazing what they can do. Before he did this it was nothing that could help me as far as a pacemaker.
Best of luck. Keep in touch if you’d like and let me know how you are doing. I just had this done in February.
I meant to tell you that with a pacemaker it is possible to stop heart failure from getting worse and even turn it back a little bit. I will see my doctor the first week of August, and will find out the results of several tests I had. I was supposed to see him this month but I had some kind of stomach bug so I did not go. I could go up and see him but I will wait for him to be near my home instead of the drive.
it was probably timing with you being told you have heart failure. As I said, my doctor told me my heart had had enough which is why he would not do just any procedure. When they are overuse, they get exhausted just like any other part of your body. think positive and ask Questions, including about your heart failure. What I did not know was that many of the things that come with heart failure are the same as you get with a fib, such as shortness of breath and fatigue. My doctor told me they also have new meds to treat heart failure, when I learn more about it when I see him, I will let you know about it. If you would like.
yes please thank you. I did hear from one doctor thst there is a pill which they researched for diabetes and found the side effect of that was it helped the heart. I can’t remember its whole name but something beginning “dab….” Or dap….. the only problem with it is that it usually gives urinary tract infections.
Tight off to bed it’s been a long 2 weeks of sitting on hard chairs all day snd st least 4-5 nights
I do not have any of the new ones yet I did not make it to my appointment. I was sick, so I see him August 2. I do not know the names of what he mentioned because I was brand new with my pacemaker he tends to stick with what is going on not what might be until it’s needed. He always has a plan, but doesn’t like to overwhelm me. There are many things that can change our pH level and make us more prone to a UTI. If you haven’t read up on them and make sure you do what they suggest it’s not that it causes the UTI that’s not possible but I can throw your body off, so you get one easily. Birth control, and other things do it as well.
I have noticed when it comes to a fib quite often they go off label for us. I have had pericarditis after every procedure, except for my pacemaker. The medicine that they give me is actually for gout. When I lived in Florida, I had a great pharmacist. When I told him why I was taking the med, he questioned it and told me what it was for. He then looked it up while on the phone with me and said yes, it is off label now for Pericarditis. The good thing is.Heart failure is not the end. Now that I have my pacemaker, there is a chance it will either stop or even regress a little bit. That is one of the reasons I am seeing him after having a stress, test, echo, etc. to see you my standings regarding heart failure. I do already know that my EKG echo etc. made him happy as far as my a fib. He says any doctor would be excited to have a patient with what I have for test results. For me the pacemaker is giving my heart a chance to rest after over a year of tachycardia in the 150s constant. From what I understand heart failure is because the heart has been exhausted which is why if you catch it soon enough.It may improve a little bit.
Sorry it took so long to answer you. I have been under the weather I think because of the weather here where we are averaging over 100° for the past six or seven weeks at least in the feels like temperature tends to be around 114 the minute, I take my poor dog out he wants to run back in. I’ve never seen him do what he needs to do so fast. The minute I step out I can barely breathe. For the past several days I am waking up and keeping a very low heart rate. I am set for 60 but it actually goes lower when I am up and moving about and as you probably, know, it should go up with activity.
oh dear trevor was rushed back into hospital yesterday. He’s gone back to square one as despite the pacemaker which seems not to be doing its job his heart rate went to 29-30
So worrying
Cardiologist going to see him this morning snd difficukt for me to get to see him as lorry caught fire on one road and burst water main so all roads closed round the hospital. Yesterday it took the ambulance 1 1/2 hours to do at the most 20 minutes
I’m sorry to hear your husbands pacemaker doesn’t seem to be keeping his heart rate up to a normal level and hopefully cardiology will be able to sort that out asap. And it must be very distressing for you to be prevented from reaching the hospital to be with him. Hope the roads have cleared now and things go well today. Best wishes.
thank you. Yes it is stressful for both of us but I’m finding it hard to understand that they don’t sort it out instead of keep sending him home and then we have to blue light back
He is upset and normally Trevor is very upbeat, but yesterday he said he didn’t think he was going to get through this. Breaks my heart
That’s ok Pat, I wish I could do something more constructive! I know it is very worrying when your own heart isn’t working right and then the pacemaker follows suit. I had to have mine replaced with a CRT- P device after a couple of years because my ventricles were beating out of synch with each other but four years on I am so much better and able to do far more than I could then. So there is always hope things will get sorted and improve for your husband. Let us know how he gets on today x Helen
Prayers going to both of you. They are not going to let him die. I was somewhat like him in December and thought I was going to, and I almost wanted to at that point. Try to keep your spirits up, as well as yours he needs you. You don’t have to say much. In fact, all you really need to do is be there and hold his hand. My cousin would constantly asked me if I felt better I mean like once an hour things like that can drive you crazy even though he meant well. They are so advanced. With pacemakers and other devices, they will find out what’s going on. I was the other end of the spectrum they could not get my heart rate down for over a year until I had a new doctor. Within four days I had a cardioversion only lasted a couple of weeks. I was scheduled again in December but it failed. That’s when I hit bottom, my doctor told me he wasn’t going to let me go anywhere. He actually devised a way to put in a pacemaker. There was none for me at the time. There is a new wiring called HIS. PACE bundling. That is just one of many things most people don’t know about. I pray that you have a great doctor that won’t give up and thinks outside the box. In February I got my pacemaker in for the past month finally, I have quality of life. I am shocked at that. I never thought I would have again or even still be here. HIS is not for everyone but that’s one of the things that is existing now. Please take care of yourself as well as your husband.❤️
When I had mine fitted I kept getting a lot of twitching near my belly, if that’s what you mean. They had to adjust the device by taking me back to the device clinic and do adjustments. Sometimes when I bend over it twitches. A bi as 3 leads one of the leads can hit a nerve in that area and cause the twitching I was told but they can adjust it. If I’m making sense.
ask lots of questions and make demands if you have to. You should not have to, but do not just take one person’s answer. What I loved about my doctor was I made a list of questions about getting a pacemaker, and when we sat down to talk about it, he gave me my answers before I got to ask him my questions. I thought he was teasing me telling me I was special, he considers us all special does not put us in an age box and does not believe in repeating failed procedures. He saved my life no doubt about it. I had some serious questions a few weeks ago he had me in the same day with the engineers of the pacemaker on the phone and the tech assigned to me. I am not anyone he does this for everyone and he’s so passionate about his work. He has pride but not a big ego. This is not arguing about a bad charge on a credit card. This is life and you and your husband deserve anything and everything.
thank you. Wow what a doctor Not many like that are there
Just got trevor home. All a bit unsatisfactory but he feels better.
Trevor was taken back into hospital again 3rd time by ambulance on Monday
Well now this evening they’ve discharged trevor. It took me over 2 hours to get from ears de/waxed at Ashford to St Peter’s. The traffic was horrendous snd most of the time didn’t move so I missed seeing the cardiologist.
The reason they discharged him….?!?….no sign of infection. We didn’t even go in for that reason. It was the low heart rate and the pacemaker not kicking in. They did X-ray, blood tests, put him on that monitor thing testing the pacemaker and guess what said the pacemaker was working fine. How can it when only 2 out of 3 leads switched on!!! Anyway at the moment his heart rate is ok. He is to have a 72 hour heart monitor, an MRI scan on 7th august and another review on 10th august.
They said to keep an eye on him and if any problems suspected to take him back. If they’ve discharged him it would flipping be another A&E job to begin with
He says he feels ok at the moment just tired and I expect a bit vulnerable
Oh and the monitor that is supposed to go beside the bed to check his pacemaker when asleep they knew nothing about so I have to call another ward tomorrow to tell them that a part is missing.
All a bit inconclusive don’t you think, but we will see how things go.
At the moment he’s in his favourite spot on the settee fast asleep “watching” the tennis! A bit wan but a little better
I have a CRT-D. I believe it is the same as a Bi Ventricular pacemaker. One of my leads was positioned in a spot that also triggered Diaphragm spasms. A few weeks later they repositioned the right ventricle lead. All is well now.
I'm a cabinetmaker not a doctor. Only know what happened to me.
thank you. It does sound the same and also WHEN the doctors come round (only been waiting since 10pm yesterday) it will be better to describe spasms rather than looking like an alien trying to get out or a bsby on the stomach with hiccups
I have had a biventricular pacemaker for a few years and earlier this year I had a problem with strong diaphragm spasms whenever I turned over onto my right side in bed. I could feel the movement and it was painful, used to make me jump and move quickly to stop it happening. Maybe this is something similar? The pacer clinic staff were able to change some settings and it gradually stopped over a period of a few days. It’s bad enough having a pacemaker fitted as an emergency (mine was too), without it “zapping” you as well!! I hope your husbands problem is diagnosed and sorted out soon, take care of yourself too.
thank you yes the spasms were fairly calm for about an hour yesterday, then as no sleep for ages he did drop off yesterday afternoon and turned from his back to his right side and boom they were off again
Most nurses snd doctors are lovely in this hospital, but one woman doctor was completely unsympathetic snd wanted him discharged yesterday, but I said I would like him yo stay at least snother night to see what happened. She said there is nothing wrong with his pacemaker or leads, But made no checks. Anyway another doctor did do an echo and X-ray, but no further communication but he did stay last night. It’s been hard as he does have very mild dementia, I’m supposed to go to Harefield for another ablation this coming week, but obviously I can’t yet so all a bit messy.
I’m going up the hospital shortly to see if I can meet the doctors when they do their rounds as I don’t understand although the pm has been set for 60 the monitor behind him where he’s all wired up keeps going from 24 to 221 or 225 bsck snd forth up and down snd I thought the idea was to stay a steady 60 ??????
I am also set for 60 but that is a resting heart rate. I was told it’s pretty much when I’m laying in bed. The minute I start to move around it will go up sometimes over 100. My doctor said my heart is like everyone else and when you are active, it will reflect that. It’s true because if I sit down and sit still, it will drop down usually high 60s low 70s. I started on 80 because I had been living over a year with HR in the 150s because of a previous doctor. The following month was dropped to 70 and then 60. When it was changed it would not be fun for a couple of days 😞 when it was lowered to 60 I started having flutter on the way home and continued with it for almost a week. I was about to call and ask to have it changed back to 70 when all of a sudden it was gone and I felt better than I had since getting my pacemaker, the end of February.
I am told I will still get my flutter. I have a typical. The difference when you have a pacemaker is that it will not affect your heart because your pacemaker has taken over. That is if you have had your AV node ablated, which I have. I am also 100% dependent. My changes can be done via my phone app no matter where I am so nice not to have to go running to the doctor.
As great as my doctor is, there were a few things, including feeling my flutter that he had not told me about it. I had thought it would be gone forever. I had ice cream tonight, and I remembered what it felt like again lol not only do I get an ice cream headache but wow do I feel it in the center of my chest but no flutter or a fib so that’s a good thing. PS the ice cream was worth it. Lol.
it is hard to deal with when you have your own health issues too and to try to get the help your husband needs. You have my sympathy! The pacer clinic staff are the ones who have helped me a great deal with various things, as they are the experts in getting the technical settings right for each individual, rather than the doctors. I am able to ring the clinic with any query (admittedly only office hours Monday to Friday) and I wondered if you can do the same? They have always been very helpful and supportive when I have had a problem. I had no tests to diagnose the spasm, they simply knew what was causing it when I described it to them. I’m sorry I have no experience of such very high heart rates but the pacemaker being set to 60 just stops the heart rate dropping below that figure, it won’t stop it going higher than that. Mine is set to 50 and my heart rate is occasionally lower for a few seconds then the pacemaker restores it to over 50 again. It does vary if I’ve been walking around up to the 80’s but soon drops back down again, all within a normal range. I hope you get to speak to the doctors today and they have worked out what is going on! Best wishes.
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