42 and dizzy, pressure in my head, fatigue (weakness in legs and arms)

Hi All,

I seem to be going down the road (I think) of needing a PM.  Back on 6/27 I left work early due to severe (nearly passing out) dizzyness.  By 7/1 I had seen a cardiologist and then spent 4 days in the hospital.  They did a spinal tap, MRI, Eco Cario, Eco Carotid, multiple EKGs and tons of blood.  They came back with nothing except some kind of delay on one of the EKGs.  The ONLY thing anyone noticed was that as I was sleeping (with a EKG monitor), a nurse came running in one morning and saw my heart rate dropped to 39 BPM.   Once all the tests came back clear , I was at home and I still felt horrible.  I started googling symptoms and came across bradycardia.  As it turns out I had been wearing a fitbit for over a year.  I found that in the last 3 months my resting heart rate dropped 8 BPM on average.  I could also see that my heart rate was dropping as low as 37 at night.   I brought this to my cardiologist's attention and she dismissed it. 

Just a note... I started to notice very slight dizziness when walking around 1 or 2 weeks before 6/27.  But it would only last a few minutes and then seemed to go away. 

I'm exactly a month into this today, with the same symptoms.  I wake up in the morning and my legs and arms feel weak.  Once I start walking around, I start to get like a pressure building in my head.  I start to get dizziness with the pressure in my head..  This is every day.  Most days by the time I'm finishing work I have mild headache along with the pressure in my head. 

 

Today.... while sitting at my desk I started to feel really fatigued... like I could almost fall asleep at my desk (note I slept 9 hours last night and took a nap on the train ride in)  I checked my fitbit and my heart rate was 46 while sitting at my desk.   I forced myself to eat something kind of heavy, tricking my heart to go up with food, then I feel better for a couple hours (less fatigued).  After eating my heart rate is around 58. 

So... I'm 42, 6'1 and 196lbs.  I have never smoked but do drink wine with dinner.  

 

I saw an EP on 7/17 at Weill Cornell in NYC and he did a few 12 point EKGs , took vitals and discussed symptoms.   His sort of response to me was that I was very young for him to immediately accept that I needed a pacemaker and that we needed to do more tests.  He assured me I would not die in my sleep and that I was not in any danger even though my symptoms made me feel crappy.   I have a stress test scheduled for 8/6 and then will likely have a cardiac MRI right after that due to the insurance company requiring things to be done in a certain order for them to cover the procedures.  

I would gladly tell someone to put a pacemaker in my today if I knew it would resolve my symptoms.  I'm hoping for some insight from the group here.  Its very difficult to describe symptoms that are debilitating on a daily basis and have a cardiologist possibly tell you once all your tests are done that you probably dont need a pacemaker.  

 

Any advice here.  Does any of this sound familiar?   

Thanks in advance. 

b

6 Comments

Bradycardia

by AgentX86 - 2018-07-26 17:32:35

While your heart rate is quite low it doesn't seem to explain everything. Your blood pressure at these times would be more interesting. I went many years with heart rates similar to yours and rate alone didn't get anyone excited.  Eventually pauses got their attention but rate alone didn't set anyone's hair on fire. That said, before the spent all the money on the expensive tests,  I'm surprised they didn't send you home with a Holter monitor. You have the time while you're waiting, even.

BTW, FitBits aren't a very reliable pulse monitor. I've worn one for four years and sorta know when it's lying (often) but I'd never be sure enough to make medical decisions based on it. My doctors don't even want to see the data.

 

push back

by Tracey_E - 2018-07-26 20:48:50

Just because we won't die in our sleep and aren't in immediate danger doesn't mean we couldn't benefit significantly from being paced. There's a whole lot of gray area between in danger and feeling great. One of my GIANT pet peeves is when they write it off because we're young, or keep looking for other causes and run more tests and put off a pacemaker. It doesn't really matter what the cause is, if our heart rate is too low then there is only one fix. We need adequate oxygen! You may end up wanting to find another doctor, one who thinks a little differently. Some of them still have it in their heads that pacers are for old people. They aren't, they are for people with a low heart rate. My doctor was the same way. I slept through two years when I could have been feeling good because I didn't know any better and my doctor thought I was too young to be paced. After I got it and felt better, I was more than a little resentful about his attitude. 

A sleep study is an excellent idea, apnea and heart conditions seem to go hand in hand so best to know if it's an issue.  That's probably the only additional test I'd consent to, in your shoes. A holter if you haven't had one, but you've got recorded low rates and you have classic symptoms of a low rate so me? I'd be cranky about fixing it instead of wasting more time figuring out the why's. Push if you have to.  If this doctor isn't on board, find another one. 

Electrical problems are completely unrelated to diet and lifestyle. Exercising keeps the heart strong, eating well keeps the arteries clear. What we have is a short circuit. Nothing we did caused it, nothing we could have done differently would have prevented it. Sometimes these things are caused by surgery, infection, medication. Sometimes we are born with it but for most of our lives we get by ok and we don't have reason to be on an ekg when it's happening so it goes undiagnosed. But usually we don't know the cause and it happens at random in someone otherwise perfectly healthy. And to be honest, the cause is irrelevant. There is only one fix. These things don't go away, there are no medications. 

Yes, It Sounds Familiar

by NiceNiecey - 2018-07-27 00:28:34

The others have written excellent comments so I don’t need to add much.  However, you’re the first person that has described the weird feeling in your arms and legs.  That was what took me to the ER.  I got out of my car and my arms and legs felt very strange, almost like there was a build up of lactic acid.  It scared me and I knew something was very, very wrong.  I also had a strange feeling up and down the area from my heart to my neck on the left side.  Nothing painful but just odd.

And one more thing . . . I think we can die in our sleep from Sudden Cardiac Death.   I had 2 episodes where I suddenly woke up in the middle of the night gasping and could tell my heart was beating in a crazy rhythm. It settled down both times pretty quickly and I went back to sleep.  When I woke up in the morning, I thought, “Wow!  I’m so glad that’s over!”  Talk about stupid!  And I swore up and down that I was asymptomatic until the day I had the strange feeling in my arms and legs!  Talk about denial!

IMO, if you’re not “ready” for a PM yet according to the medical pros, you are on your way.  Thank goodness you take the subway because plenty of people lose consciousness when driving before getting a PM.

Do let us know what happens next.  

Niecey

additional info I forgot to mention

by Shellnyce635 - 2018-07-27 11:53:32

Hi all,

 

Thanks for your comments.  To answer a couple questions.  I did wear a 7 day "event" monitor.  I really wanted a telemetry monitor but my first cardiologist used some stupid service who claimed my insurance didnt cover it (which was completely wrong) . 

My blood pressure is around 117 / 70 (not sure on second number) .  When I first went to the urgent care on 6/27 my blood pressure was 136 / 90 I think. 

I will have to look into the sleep apnea thing.  I dont think I snore or have trouble breathing when sleeping but i know that it can go un-noticed pretty easily. 

In regards to the Fitbit.... I know its not a diagnostic tool but I will say.  My Charge 2 has been dead on accurate matching all of the vitals readings that I have had taken over the last month in regards to heart rate. 

 

Oh and yes... I am seeing a Cardiac Electrophysiologist

You know what you know.

by Gotrhythm - 2018-07-27 16:20:40

Yes your symptoms sound very familiar to me. I have Sick Sinus Symdrome. I never actually passed out and only came close on the stairs. I know well how frustrating it is to feel terrible, and be told that everything is "normal."

I don't have much to add to the other excellant comments, but I'd like to reply to your final paragraph: "I would gladly tell someone to put a pacemaker in me today if I knew it would resolve my symptoms."

Pacemakers can make your heart beat faster. It's what they do. So yes, it would likely resolve your symptoms. What bothers me in what you've said about testing, is that you haven't really been given a test that would reveal arrythmias that are intermittant. A twelve-second EKG simply isn't long enough. I had dozens of EKGs as well as stress tests and was told my heart was fine! Significant (i.e. dangerous) pauses might only be happening once or twice a week or even less.

Tracey says, "push back." I double that. You know what you know. The fitbit (and you know whether in your expereince it is accurate on you) shows that your average heart rate has dropped 8 bpm in the last 3 months. You know when your heart rate drops you feel terrible, and when it's higher, you feel better. It behooves you to insist on a 30-day Holter monitor, with telemetry. That is the gold standard for discovering arrythmias. If your EP says they can't do a 30-day, such a claim is riduculous. Those people don't know what they are doing. Go somewhere else.

In fact, you might consider going somewhere else period. If a person has a low heart rate and they feel fine, okay. But if a person has a low heart rate and they have symptoms of low heart rate, and you do, that needs to be explored, whether they are "old" enough or not.

One more thing. The sine qua non of needing a pacemaker is passing out. If I ever had, doctors would have taken my symptoms seriously sooner. Once you are on the monitor, when you are in a safe place, do everything you can to bring on your symptoms up to and including letting yourself pass out.

 

insist, insist, insist!

by Electric Elise - 2018-07-27 18:07:30

I completely empathize - i’ve been there with doctors almost laughing me out the door saying i was too young for a PM or simply wanting to at least put the procedure off indefinitely!

Gotrhythm’s last paragraph really dotted the i, by the way! I did just that while on the monitor - i didn’t pass out but i certainly went into 3rd degree block, haha! And so here i am, paced at 35 and beyond grateful for it! Changed everything for the better. Like yourself, i used to think “get me on that operating table today!!” but i admit, i DID have to keep pestering the plethora of doctors i’d seen during the 2 months of tests, feeling rotten, hospital stays and the lot.

I really hope you sort this out soon. I’ve had my PM for 3 weeks now and life is simply not a nightmare anymore. Best of luck and do keep us posted!

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