Sleepless & Palpatations

Good Morning my friends,

Haven't posted since August, but finally have the rhythm, bp and problems with meds under control.

Having problems with hard heartbeats and sleeplessness. As you can see it is 5:01 am and I've been up since 4 am..awake since 3.

My heart beats so hard and almost seems to have a rhythm. 2 hard beats..2 soft and 7 hard. It does it occasionally during the day no specific time. Have put the cuff on and bp & pulse both ok. At nite it does it more lying on either side but also on my back.

I've been going to bed at 10 pm and waking around 2am. Cannot go back to sleep so I get up and either read or use the computer. Sometimes I will go back to bed in 2 to 3 hrs and wake around 7 am.

During the day no matter what I am doing..usually around 2 I am so tired I almost fall asleep walking to lie down. Hubby wakes me in an hour. Again after dinner...usually around 7 again the same thing, sleep for an hour but go to bed at 10. It does take me quite awhile to fall asleep. I have tried staying up later but still have same problems.

Dr suggested my sleep pattern is screwed up, He wrote it down. :-)

I have a phone PM check the end of this month. Have not had one yet and not sure how it works. I do have a St. Jude PM with the Merlin Transmitter.

Just thought I'd write y'all (I can say that now as I now live in the South) to see if you have any suggestions.

12 Comments

cont.

by ms.shalimar - 2013-10-12 03:10:18

When they sent me to the cardio it was right away but my next scheduled appt was in Oct. which I have had. Will have a phone PM check the end of this month.

re:Paperwork Review

by ms.shalimar - 2013-10-12 03:10:59

Hi Don,

Thanks for your reply. Have updated my likes & profile. :-)

These are my meds I'm taking now.

Had uncontrollable diahrea from the Moltaq. Finally changed me to Propafenone.150 mg 3 times a day. 95% better... Pills I am taking now Furosemide, Digoxin, Xarelto, Metoprolol, and Propafenone. Cannot take the Arthrotec for arthritis anymore with new meds...so I take Tylenol twice a day. doesn't help much.

I never had problems with sleeping before the PM. and really none after. They just started a couple weeks ago. If I can force myself to stay up later...say 11 or 12 I might sleep till 6 or 7.

I do worry about this foreign object that is implanted in my body but the fear is of the unknown. Noone has really told me what I should expect from it or what does it expect from me?? I read all of the posts and read words I have never heard of or understand.

The day I went to the PM Clinic because I was so exhausted I told them something is wrong..the lady in charge loudly said "there is NOTHING wrong with the PM...it's YOU!"

Guess what??? What's wrong with me?? I said something is wrong. That's when they sent me to my Cardio who's next appt wasn't until October!

Oh well, thanks for replying.

Connie

There is NOTHING...

by donr - 2013-10-12 08:10:11

...wrong w/ you that a good cardio couild not fix. Hang in there for a couple hours & let me muck around w/ a concrete floor that needs grinding down - I'll write you something that just might help.

No one deserves to be treated like that.

Don

Paper work review

by donr - 2013-10-12 08:10:27

Connie: Good Morning to you. Just went through ALL your posts & comments.

I'm going to throw another couple clinkers into the mix.

1) Please go back to the profile & stick in a decent sketch of WHY you got the PM & some history. IT is tough trying to figure out what to say w/o some basic info, like that.

2) Please use meds names ALL the time in posts/comments. They are all different & affect us all differently. Recall Inga's discussion of drugs & their common uses in treating arrhythmias. That is so critical to giving reasonable & helpful answers to you.

3) Has anyone EVER mentioned a sleep study to determine if you have sleep apnea? There is about a 60% or HIGHER correlation between needing a PM & having apnea. Last Tues Wife & I were visiting our cardio & somehow Apnea came up - it is managed w/ a device called a "CPAP" or a variation on the device. It creates a constant (or variable) pressure through a mask to ensure that you breathe correctly while asleep. Our cardio asked how many of us had CPAP's. 4 hands went up out of 4 people (Cardio, me, Wife & the nurse). Sleep disturbances can drive your heart nutso - especially if you already have arrhythmias.

4) I will bet a buck to a bagel that you have a stress problem!!!!! That does not help w/ arrhythmias, either..

At this point in your history, based on what has transpired since getting the PM, you are certainly authorized to have stress problems.

My basic reason for diagnosing stress is your difficulty falling asleep. How long have you had that problem? Now, throw in the waking up & not going right back to sleep, adds fuel to the fire of a stress problem. Of course you fall asleep during the day - you are pooped!

A screwed up sleep pattern is one of the first signs of stress related problems & you are obviously worried about your condition.

Stress is a strange, self-fulfilling prophesy! You can become stressed over your heart problems - & you can develop arrhythmias over stress. Called a regenerative situation. Also described as a "Which came first, the chicken or the egg," because they can cause one another - or make one another worse if there is some physical reason for the arrhythmia starting.

5) The rhythm pattern you describe - verrrrry interesting (to steal a quote from Arte Johnson from "Laugh In").

Has anyone ever mentioned an arrhyythmia called a PVC? That's a Premature Ventricular Contraction & can feel EXACTLY like you describe. It is NOT uncommon for PM hosts to get them. No reason known. It is also a common arrhythmia for people who do not Host PM's, but have normal sinus rhythm!

Simplified, a PVC is exactly that - a ventricular contraction that comes early; hence it feels wimpy to you because the ventricles were not fully charged w/ blood. The next beat feels hard because the ventricles had a chance to fill fully, or perhaps even overfill.

These ugly little spuds come in all sorts of patterns - singles, spread out very infrequently occurring, in pairs. triplets, in whole bunches in sequence. They can also falling into a pattern of every other beat; every third beat, every 4th beat, etc. All of these patterns are different from normal, so you sense them.

I have them all the time - measured in the thousands per day sometimes. Before you get horrified, when you figure out how many times a day your heart beats, that is NOT really a lot, & I no longer even notice them. I only notice longer runs of them & only to make a mental note - "Oh, I'm having a PVC run."

MOF, I awoke w/ a pattern similar to yours last weekend, except mine was Three normal, one PVC; four normal, one PVC; 15 normal; then the pattern repeated.

IF this is what you have, they are benign unless you have BIG loooooong runs of them. To quote every staff member I've met in my cardio's office "PVC's will not kill you." After hearing that a whole bunch of times, I finally believed & stopped worrying about them.

Last Tues I was in for a PM check & while they were running the download computer, I finally saw an ECG presentation of a PVC. I did NOT sense it. Saw two or three more singles & did not sense them, either.

BP cuffs are notorious about NOT sensing PVC's & giving you strange BP's, usually higher. The automated machines they use in hospitals do NOT ever read my BP correctly - usually high, like the 187/110 you reported. Also, you cannot rely on a BP cuff to give you correct HR's if you have PVC's. Frequently it misses the wimpy beats from the premature contraction.

6) BTW: Inga was so absolutely correct in a comment to you about side effects & how they can interact & multiple meds need to be started singly to help isolate what does what to you. EVERY heart med has a messy side effect & they do NOT affect everyone the same or even at all. Her discussion w/ you about A-Fib was also an excellent presentation on that. Some PM's define A-Fib as anything over 150 BPM out of the Atria & you seem to have a lot of HR's in that range. That can really make you feel like crap.

The best to you this morning - now go have a bowl of Kellogg's Corn Flakes & sing their song.

Don

WOW !!

by donb - 2013-10-12 09:10:03

Hi Don, Excellent post



Hi Don, Excellent post. I sure wish someone wold have given me the above message 22 years ago, could have saved me a lot of anguish. Good Job !!!
DonB (the other Don)














1

Shalimar...

by donr - 2013-10-12 10:10:39

...at least you are not Sleepless in Seattle!

Good job on the history in profile. But you did not tell us the diagnosis leading to the PM. My guess is that it is Bradycardia - slow heart rate. W/ a HR of 28, that's pretty safe - at least for half of it! Sounds like you have some A-Fib or A-TAch from the description of the high HR for 21 days.

Those are for the Crdio to fix. Let me address the mental aspects of your problems. I'll leave the meds to someone else - my bag is what is located between your ears - & I do not mean your nose! In there on a straight line between the ears is the BRAIN. It gives domicile to your minds (conscious & sub-conscious) - your personality - all that good stuff that no one REALLY understands, but makes you what & who you are.

Beddy-bye time: If you have to stay awake longer to go to sleep, you have a stress related problem, You should be able to fall asleep in about 10 minutes. I know all about sleep & stress. Look at my profile - I've suffered PTSD for over 35 yrs, off & on. Fortunately more off than on. But on nights when I'm not stressed, I conk out in 5 min or less. ON nights with stress, I can roll around in bed for an hour or so; followed by very restless sleep & waking up & unable to go back to sleep, so off to the computer & the PMC!

Personally, I do not like sleeping pills - they give you artificial sleep w/o all the necessary parts, like REM sleep & dreaming, etc.

About the PM buried in your upper chest. Your reaction to it is not at all unusual. What this tells me is that your cardio never took time to treat your head. That is a major part of hosting a PM - you need to know all about it it is your best friend...if you let it be such.

Understanding the PM 101:

1) It's an itty-bitty yellow polkadot bi...Whoops, wrong subject! It's an itty-bitty digital computer powered by an integral battery that should last anywhere between 6 & 10 yrs, depending on how much it has to work. IT has a tremendous memory & wicked computing power. Remember the desk top computers of the mid-late 80's? Your PM is more powerful than that & has more memory than that! It is capable of storing the results of every beat of your heart for at least 6 months. It probably has two leads - one into the Atria (The two upper chambers) & another into the right ventricle (one of the lower chambers.) Those leads monitor the electrical activity of your heart, just like a ECG machine. It has data stored on what it EXPECTS your heart to do & when it should do it. Even more extensive than the NSA! IT has a program which follows Algorithms (No relation to the past VP). An algorithm is a sequence of instructions following a set of rules - that simple. It senses when your Atria contract (& even if they don't contract). It senses when your Ventricles contract (& even if they don't contract. If those contractions do not occur when the PM thinks they should, it generates a signal & sends it down the same leads that do the sensing & makes the muscles contract. When properly adjusted, you will NEVER feel any of this happen!

There are two numbers that you should be interested in - Lower Rate & Upper Sensor Rate. The Lower rate is the lowest the PM will let your heart beat at. It monitors your heart's every beat & if it will not be there when it is supposed to be, it takes care of it. I mean EVERY beat. It will not let you miss a single beat.

Now how reliable is this little wonder? More reliable than your native heart over the short haul - defined as about ten yrs. It can diagnose itself. It can adapt to many changes in what your heart does. It can adjust itself. It can correct some failures of programming & hardware. IT is the same technology & reliability that took the latest rover to Mars & will run the machine for yrs. They can download it & get a wealth of history as to what your heart has done.

The Upper Sensor Rate is a bit more complicated & unless it gives you trouble, that will be covered in PM 102.

That PM is built out of Titanium - stronger than an equivalent qty of steel. Totally immune to the extremely hostile, corrosive environment of your body. Tougher than an Army Drill Sergeant. You are hard-pressed to ever hurt the device.

Now - it needs leadership. You need to take command f it & make ure it knows you are tre boss. It goes where you go, does what you do & likes it.

What does it expect from you? Other than leadership, all it needs is a soft, warm place to stay - & it has that. Yes, you will feel it, it is a lump like half a brick - as one member put it. But you will get used to it.

The thing to do about the words you do not understand is to make note of them & come in here & ask for an explanation. Hey - it's a whole new world out there for you. If the Star Trek gang grabbed you & dumped you on Vulcan, don't you think you'd need to learn a new language? Learn about new things? Face a new reality of sorts? NONE of us knew those words when we were new PM Hosts. We had to learn them. Just keep reading & asking. We expect that from Newbies!

It's NOT "Oh, well" w/us. Our clinic is open 24/7/365. And we will not yell at you. Someone in here has an answer to any question you ask (within reason).

You are correct - something IS wrong & you deserve an answer.

Y'all come back now, Y'hear? (Ahm in the south, also - Etlanner, Jawja - honeychile. & I can talk southern w/ the best of them. Even though I'm from Joisey!)

Don

Wow!

by ms.shalimar - 2013-10-12 11:10:35

Don...I am impressed! I have printed out your response and highlighted all that I want to look up on my 80's type desktop computer! :-)

The diagnosis leading to the PM....only the Dr's and the hospital know. All of the different words, diagnosis, etc. I never heard.

I went into the PCP's office because I was feeling a funny flutter in my chest and a little dizzy. As soon as she did the EKG she said you need a pacemaker! She wanted to call an ambulance but I refused. She called the hospital..and I went in right from my pcp's office..got ready for surgery and had it within 3 hrs
.
When I got out of the hospital the first visit was to the Pacemaker Clinic She explained a little about how it would be recording and transmitted by phone. She checked my implant which still had tape. Told me I could take the tape off.

I had an appt with my Cardio. It was then I did find I had been Afib for 21 days. It was only after I couldn't do anything and went into the PM clinic without an appt. He really didn't explain much except to figure out the meds for me to take, and what Afib was.

I had several more appts. at the Cardio office to have a Rhythm Strip. Only the nurse was ever there no Dr.

The PM clinic had me back several times and told me I had been in rhythm since the first part of July...but the Dr's office kept saying the Rhythm Strip was still Afib. Finally they agreed.

I finally had my Oct. appt with the Dr himself. I did get to ask alot of questions...one of which How long will I have to take all of these pills? His answer was 28 years. He did explain what all the pills were for. Only thing he really said was my case was difficult, as they couldn't get my pulse rate down. End of appt...see you in 6 months.

The most important person to tell me anything is the Head Nurse at the hospital...who is on this forum. She invited me to the forum. Altho she told me I would be a new woman and she hasn't shown up yet!! :-) The thing is..I was pretty happy with the person I was until this happened.

The cardio I have was on call. I saw him when I checked in. He stood at the end of the bed and said hello and introduced himself. Never saw him till the day I went home to tell me I was ready to leave.

The hospital followup papers had an appointment with him for October....that was on June 8th.

The most important thing I remember is don't raise your arm above your shoulder. My PM is nice and hidden, can hardly see my scar.

I will look all of this stuff up so I understand what everyone is talking about. I do believe my bottom number is 60, but don't know what the top one is. I did ask the Dr but he didn't know..thought it might be 120.

Appreciate you taking the time to break it down for me. I will check in more often and see what's going on. If I have more questions which I am sure I will, I will ring your bell.

Thanks again....Connie

AHA!!!!! Found it...

by donr - 2013-10-13 01:10:00

...my comment on how to relax & go to sleep easier.
It was written to a woman suffering big bunches of PVC's & she was worried pretty badly.

If you are able to pull this off, it will help you go the sleep faster.

Begin paste:
"Oh, BTW: If you go to bed EXPECTING to have them, you will. Now there's a tough one to break. Here's a suggestion on how to beat that: Turn out the light, lie on your back w/ a small pillow under the knees (Helps relax the leg muscles; Arms by your side, fingers relaxed w/ knuckles out. See if you can find a small pillow to put under your neck so your head hangs back, allowing the airway to be less constricted. Close your eyes. Breath in through your nose slowly to about the count of 6 or 8 till your lungs are completely full. Hold the breath for about 4 seconds; exhale slowly through your nose; do not inhale for about 4 seconds. Repeat this for abut 20 min. Concentrate on your breathing to the exclusion of all else. ALL else. Drive every other thought out of your mind except the breathing. Relax every muscle in the body. Breath. breath. Breath. Think of nothing else. You cannot possibly make 20 min of this. You will go to sleep in about 5 min. After a few sessions, you should NOT sense PVC's.

This may also improve your sleep!"
End paste.

Don

Connie...

by donr - 2013-10-13 01:10:53

...and I will answer,

Don

PS: When you see the Cardio next time or go into the PM clinic, ask for a copy of the print out strip report. If they do not willingly comply, DEMAND it - it is your right to have a copy under law in just about every state. That report is the key to understanding your PM. There is just so much info in it you will be amazed.

Someone can explain every piece of info in it. This site is a classic case of the whole of our knowledge is much larger than the sum of all the individual parts.

You need to learn how to relax to sleep. Somewhere in my unwieldly pile of posts & comments is a note explaining it. I'll root through it & see if I can find it for you.

KathyB

by ms.shalimar - 2013-10-13 10:10:10

Oh Hi Kathy, So glad to hear from you again Thanks so much for the information as to why I was in the hospital and what for! Noone has ever actually told me.

I have the same problem when scrunched on my side...it doesn't like it on either side. Hard for me to sleep on my back.

Glad to hear you are doing well. Sorry, but I really don't want to come back to see you. :-(

Sleeping...

by ms.shalimar - 2013-10-13 10:10:29

Kathy, as for taking naps....I cannot stay awake! No matter what I am doing I have to go lay down. Not sure how long I would sleep as I always tell John to wake me in and hour.

Hi Connie

by KathyB - 2013-10-13 10:10:37

It's Kathy, so sorry you are still having some issues. As for why you had the pacemaker, it was for what they call tachy/brady syndrome or sick sinus syndrome. You would go real slow then speed up and be in atrial fibrillation (just like me). As for your sleeping, sounds like you are taking a couple of nap breaks during the day and that is interrupting night time sleep. I know it is an old wive's tail but do try some warm milk before you go to sleep. It has helped me in the past. Glad your blood pressure etc is all under control. Don't worry about your little friend in your chest. It is the best friend you can have. I don't even know I have mine anymore except when I am lying in bed and in too scrunch a position and feel it. Hope all gets better for you

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I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.