Really need support asap if you can

Hi all, sorry to be posting again. I am seriously thinking about admitting myself into a psch unit. I have been having trouble fore a week or so. Last weekend went to the ER only to be told it was stress. I was having sweats and chest pains. Today I woke up and checked my heart rate and it was in the 70's and shouldn't be because I am paced 100% at 85. I panicked and went to the ER. EKG was normal, while on monitor I saw my heart rate go to 70 and then 60 later. Biotronnik got there around 6 hours later downloaded my pacer and said it is working find and showed no low heart rates. They said I am counting wrong and the said the monitors are not as good as the pacer is keeping track.

I am so upset. I sit around and check my heart rate non stop now. I have been doing this for days. I am consumed with it. The tech printed me off a sheet to even prove it to me and I still do not believe him. I am scared out of my mind.

To add to all this I found out my thyroid is really low and I knew it would be because I haven't been taking my meds, so they are worried about that also, but I did go pick my meds up today.

I just got up to go outside and got pains all under my breast area. Quick and not bad but I am wanting to rush back to the ER but I don't think that is the answer.

I think I am letting this get to me and I feel like I cannot control it anymore. My mind has taken over and I feel so hopeless and helpless. I just sit and cry now and don't want to leave the house. I never thought my mind would be this weak.

My cardio doc called trying to make me feel better because I have a machine that downloads every night and he said all is good but for some reason I do not believe them. Am I going crazy? I really think I am.

I didn't tell the doctor today but I am so down I do not know how to help myself. Feeling myself slip away and afraid of what I will do. I am actually scared of that. I asked to speak to pcsyh but they didn't have one so I called mine and she said take another Xanax. ugh I just do not know.

If the tech and the doctor cannot convince me what am I to do?

Scared out of my mind.

I have lost 12 pounds. Not eating anymore. To scared to move and just count my pulse. So hopeless. Please help me if you can.

Don, I need one of you strong talks but please be kind. My mind cannot take a lot.

Thanks ahead of time you all.

Tina

11 Comments

answer to pacer rep

by TinaH - 2013-09-21 10:09:07

I am taking it manually and the doctor told me that I could be missing some beats. My rate was changed to 85 because they thought I was going into junction rhythm at night when they lowered it.

No my rhythm is almost always 85 unless I am up moving around. Just saw it on a monitor today.

Battery status :ok
Remaning batter 100
Expected Eri 12.5
Magnet response: async
Ram ID 3.0
HM PID 16

Mode AAIR
Basic rate/UTR (bpm) 85

Pulse ampluitude (v) 1.5
Pulse width (ms) 0.5
Pacing polarity BIPL
Sensing polarity BIPL

P/Rwave amplitude 4.6
Polarity BIPL
Threshold (v) 0.6
Pulse width (ms) 0.5
Polarity
Lead Impedance (Ohms) 507
Polarity BIPL

Diagnostics
Atrail burden (%)

pacing ratio (%0) 98

get help

by Tracey_E - 2013-09-21 10:09:07

I don't know if you need to be admitted anywhere but it sounds to me like you could use some help. You sound depressed. Depression is a disease. It does not go away on its own, you need help. Find someone to talk to, maybe think about medication to keep you calm short term until you get more tools to cope.

You are talking yourself in to problems. The rep is correct, the monitors are not always accurate with us. Stop counting your pulse, it will make you crazy. If you feel bad, then count, the rest of the time you have to make yourself stop.

You have to eat, you know this but I'll say it anyway. How can your body heal and cope if you are not giving it fuel? Go get something now, k? Something full of nutrition. And have a big glass of water with it. If you are not eating or get dehydrated, you will make things worse.

Take a deep breath! Remind yourself we depend on computers every time we drive a car or get on a plane or lots of other things. The pm is much more dependable than our wonky heart. Many of us here are fully dependent on them and we live full, active lives. I've been paced every beat I take since 1994, my pm has never once let me down, and yours won't either.

answer to pacer rep

by TinaH - 2013-09-21 10:09:29

No I have two wires they turned the bottom one off because it was causing me to feel to many things and I have had my pacer since Jan 7, 2013. You would think I would be used to this now but I will do ok for awhile then really bad for awhile. So do you agree that the monitors in the hospital are not always correct and if I was having low heart rates would my pacer pick that up?

Thanks for your help.

Tina

Your numbers look good

by PacerRep - 2013-09-21 10:09:45

P/R Amplitude 4.6mV. This is how well the pacemaker sees your own heart beating. Anything over 2.0mV is considered extremely good sensing, this immediately tells me that the wire is in a very good position

Lead impedance 507, this tells me that your wire is not broken or frayed. It also says that the outer coating is ok as well. A normal range is between 200-1800, your's looks great, 500 is as normal as it gets.

Pulse Amplitude 1.5V, this a low amount of energy meaning that it doesn't take much for your heart to squeeze which is a good thing! The test said it only takes .6V...so the rest is just a safety margin that they put in..perfect programming!! With such good sensing at 4.6 and a low resistance of 507 this doesn't surprise me.

Atrial burden of 0% means that your not having any arrhythmias!! congrats!

So I see your programmed AAIR, do you only have 1 wire?

Tracey is right, stop taking your pulse so much unless you feel really bad, like about to pass out. It will drive you bonkers. Pacemakers make your heart beat on time to the 1/1000th of a second. The only way it doesn't work is if the wire is broken...which yours is not...it can't see your heart...which yours does...or your output is programmed too low...which yours is not.

Take a deep breath and relax, all is ok.

Hello

by PacerRep - 2013-09-21 10:09:54

How are you taking your pulse? I don't believe we have spoke but what I try to contribute to this forum is a non-biased opinion on the technical aspect of the pacemaker. Do you have a copy of your printout from Biotronik, I would be more than happy to go over it with you line by line.

Is your pulse consistently in the 60's and 70's? or just every once in a while? That makes a difference.

How long has your pacemaker been implanted?

The big question is...are you taking your pulse manually and coming up with 60 or is it a machine/BP cuff?

Why is your rate set at 85bpm?

I agree 100%

by PacerRep - 2013-09-21 11:09:55

I promise you that one of the major pains in my ass doing this job is those darn monitors. Your not alone...at a minimum of 5 times a week I hear from patients that the pacemaker is not working properly because their monitor is dipping below their base rate. Without typing a book I'll give you the cliff notes, more detail if you really really want to know.

Monitors are set with a "bandpass filter" that filters out certain frequencies and amplitudes, they aren't calibrated perfectly for pacemakers.

High Output pulses can be ignored...your output is low though.
Sometimes the frequencies of the HRM and the pacemaker get "confused"...not by the pacemaker but by the HRM which causes mis-counts
PVC's are often mis-counted

There are several other techie things that can go on but the bottom line of all of it is...it's a problem with the HRM and not your pacemaker. The pacemaker when programmed appropriately with an intact wiring system...will make your heart beat like a drum until the battery dies.....again...to accuracy of 1/1000th of a second.

To put that in perspective....try this....Blink your eye as fast as you can....



That just took 1/150th of a second...much slower than the accuracy of a pacemaker

Scared

by LisB - 2013-09-22 01:09:18

To me you sound very scared and I am wondering if something else is getting in the way of you believing that all will be okay. I am new to having the pacemaker, just since June. A couple of times I have started to panic, especially when I was exercising (and I mean at a very slow rate) and started to get shortness of breath. I felt like something wasn't working and I started to have that thought that the PM isn't working. You mention that you take a pill sometimes for anxiety, but I'm wondering if you have a therapist to talk to, too. Not just a psychiatrist who dispenses meds, but really someone to talk with about your fears and sadness. I have found that talking to a therapist is so valuable. And talking to friends helps, too. Depression is a nasty illness and a very real one. So find someone you really can relate to and get the sadness and fear out of your mind and body and into the air so it can go somewhere besides inside of your body.
And, I think it's vital to truly trust your doctors and if something is wrong there, look for a new doc.
Just some advice from someone who cares...I wish you the best.

Thyroid issues

by SaraTB - 2013-09-22 03:09:29

Something occurred to me as I read your post again - you've not been taking your thyroid medication. As my husband has just been prescribed thyroid meds, I've been reading quite a lot recently, and I know that one of the symptoms can be depression. I hope you're started taking your meds again, because it's quite possible that your thyroid issues are playing into your anxiety about your heart.
Please ensure you take the meds!

Cardiac Rehab

by Grateful Heart - 2013-09-22 08:09:00

Tina, first of all don't apologize for posting, that's why we're here. Post all you want, anytime.

I know we talked before. Did you ever go to Cardiac Rehab? I wish you lived near me because I would go with you but I see you don't, so you have to take that first step. You have to help yourself. Talk to your Doctor about it and get a referral from him. Pay for it yourself if it is not covered. It will be less than a gym membership for 1 month and well worth it for your peace of mind.

Just start with 4 weeks, that is a short time but time enough to help you and show you....you are not alone and stronger than you think. You need to have the confidence to move and not be afraid. The Nurses will monitor your HR and BP while you are there. Please give it a try. You can check in here after each appointment and let us know how you like it and how you are doing.

All good, caring advice above from your fellow pacers. Everyone recovers at their own pace and some take longer than others....there is no right or wrong. It was good to hear from PacerRep that he agreed with your Doctor and tech after reviewing your interrogation report that your PM and leads are working the way they should.

Cardiac Rehab Tina! Now take that first step and go and help yourself. We will be waiting to hear from you.

Grateful Heart

Amazing advice

by ohiolaura - 2013-09-22 09:09:00

I agree with everything Sparrow said,all sensible advice.
It is amazing what our minds can do for us,and against us.Also,maybe getting some mental health help is in order,at this point,why not?
Its ok to ask for help,going thru something with your heart can be a lot to handle,and if you need something specific,do it for yourself.
Getting out,occupying your mind and body is something that is essential,try it,youll be amazed at what it can do for you.
I had issues at first,I was a mess,which for me isn't in my DNA,but the whole PM out of the blue experience changed me,then,but not now.
I had problems for a bit,not as strong as yours sound,but I had problems coping,alot of fear and unknown things.
I can tell you today I am back to being quite the force to be reckoned with!
It's been over a year now,and I am great,here you are getting great advice and help,if you need more,go get it,and for that you will be better.
Good luck,and don't be afraid,the Pm is a ridiculous piece of technology!
Better than my iphone right now!
Laura

Get Out!!

by Marie12 - 2013-09-22 10:09:05

You have received some really valuable advice. I'd like to add that you need to take your meds, with food!!! I love the advice about getting out. I work full time and before my ICD implant in June, I usually spent my weekends completely at home. Now I go to hockey games, movies (funny ones) and just walking. It seems the more I do the better I feel. I did have an anxiety attack 1 1/2 weeks ago and ended up in the ER over night but now know what to really watch for. At first I was not aware it was anxiety.

As everyone else has said ''STOP MONITORING". I was nearly addicted and was a major cause of my anxiety. Your body will tell you when it is necessary to measure. Also, as everyone else mentioned, get yourself to someone who can listen and help you. Sadness and depression can't be left without treatment. You can also come to this site often which will help you. We will be thinking of you.

You know you're wired when...

You can feel your fingers and toes again.

Member Quotes

It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.