newbie with questions...and migraines

Hi, all- total newbie here.  I am mid-diagnosis and have questions.

Most of August I was having dizziness on standing.  I had just gotten to the point of acknowledging I needed to see a doctor about that but got mowed over by a big migraine early September (in bed 5 days).   

My migraines are regular and come with a long tails leading up to them and as they fade. The impact to my life has been severe.  I do see a headache specialist neurologist, tried many drugs, none really work.

Since that migraine in September, I’ve felt like total crap.  I have had many checked out migraine days, fatigue days and now general tiredness.  It often feels like someone is pushing on my chest as if to say, whoa nelly!  Now you just sit your self right down in that chair right there! I’ve been logging my migraine pain…I now often wake up or go to bed in pain (that’s new for me).  It’s never awful but it’s nearly every day.  These symptoms are only slowly dissipating since September.  I still get dizzy every day.

My daytime heart rate averages low 40’s but can be in the 30’s. My nightime heart rate averages 32-34.   These numbers are crazy to me.  I’ve always had a pulse right around 55-60, now if I can get myself to spike at 50 it seems like a miracle.  I’m only 52. In good shape.  Eat right, exercise, normal weight, etc.

My ECG’s do not show a heart block. I had a normal Echo and 24 hr Holter. I have a stress test coming up on Friday which is probably not going to go well. I do not have any tachycardia that I know of. I do not have sleep apnea, my thyroid and all other labs are normal. 

My questions are as follows. (I’m driving myself a little crazy here, so I need a sanity check.)

Is it enough to be a candidate for a pacemaker with just bradycardia and no other arrhythmias, heart blocks etc?

Is the next step an Electrophysiologist?  What specific tests will he do that my cardiologist has not?  How will they determine exactly what part of my electrical system is not working right?

How much should I care about WHY my heart has had this sudden change?? 

It feels like someone dialed down my life from 10 to 4 (it was all the way down to 2, so I’m improving).  Right now, all of the things I cared about three months ago are gone…in the sense that I simply do not care about them anymore.  I tick all the boxes for depression.  However, I know I didn’t feel this way before this last migraine.  I think that my brain is now not getting enough oxygen because of my low pulse and it’s driving these feelings. Is this a reasonable line of thought? 

If there are other migraineurs on this site, did your migraines improve after you got a PM? 

I have an appointment with my neurologist coming up to ask these questions to as well. It will be interesting to see what he says.  There is a definite link between hypoxia and migraine.  When I’m feeling somewhat together and slightly optimistic, my brain says a pacemaker might solve some of my migraine problems.  Then the rest of my brain says: are you serious?  You’d have invasive surgery to get something permanently implanted inside your body on the unproven chance that it will help your migraines?  Are you crazy??

I dunno. Am I crazy?

Aside from the migraines, did you get your life back when you got a PM?  I feel like mine is gone.

If you read this far, thank you muchly.  I'd appreciate any thoughts/insight you kind people are willing to share. 


7 Comments

Migraines and arrhythmias

by Julros - 2021-11-02 17:58:06

Ugh, your experience sounds miserable. I do not personally have experience with migraines, but in talking to friends with them, there are many treatments and they must be individualized. It is promising that you are working with a neurologist. 

Your stress test should give valuable information, such are perhaps revealing any chronotropic incompetance, which would be an indication for a pacemaker. 

I did a quick internet search, and it does appear that there may be a relationship between arrythmias and migraines. Please keep us up to date with your course of treatment. 

Another thought is that sometimes people with patent foramen ovale  that is closed have relief from migraines. Do you know if they did a bubble test during your echo? 

Migraines

by Lovesthesun41 - 2021-11-02 18:59:27

I suffered for years with migraines (3 or more per week) and went through many neurologists. I was put on a blood pressure med to help prevent them but it never made a difference. I did find relief with Imitrex but had to take it too often for too long. A year ago I ended up in the hospital with heart problems. They switched my blood pressure med to a beta blocker and I haven't had a migraine since!  In April I had a three lead pacemaker put in. I was careful with the recovery but am now back to exercising like I was before this all happened. Everyone is different and what works for one doesn't work for everyone. Just keep trying and know that life can get better. Don't give up. Good luck. 

Pacemaker for Bradycardia

by AgentX86 - 2021-11-02 19:27:45

Yes, Bradycardia is what pacemakers are for.  That's just about all they can do, in fact.  The most common causes of Bradycardia are Sinus node dysfunction and heard block (AV node dysfunction). Since you don't have heart block, aparently, the other answer is SI dysfuntion.  My guess (and it's a complete guess) is that your SI node isn't working at all and your heart is beating due to a "junctional rhythm" (from the AV node).  Any of this should have shown in an EKG.  If a heart block didn't show, it should have found something. 

And, yes, you shpuld have been seeing an EP long before this.  Cardiologists are good (you need to see him too) but they haven't studied the electrical system.  The old saying goes that "cardiologists are plumbers, electrophysiologists are electricians - you need both to maintain a house".  Until you make sure there aren't any structural problems (your stress test is a good start) see both.

Don't go down the "why" bunny hole.  There's nothing down there to see.

Lack of oxygen can do pretty much anything.  If I were you, I'd get a cheap pulse-oximeter.  You can probaby find one for $10-$15 on Amazon.  This will tell you your blood's oxygen saturation.  If it's in the 90s, you should be alright.  If it's 95 or above, you're good.  Most will show 98 or 99 but it takes a lot to matter.

Hole in the heart (septum) is known to cause optical migranes but there is no known reason, at least last I checked.  Optical migranes often occur after surgeries like ablations where they have to punch through the septum to get to the left atrium.  If it can cause optical migranes, it seems it could cause any sort of migrane.  Julros might be on to something.

BTW, I've found neurologists as being pill pushers.  In their case, it's probably warranted. There really isn't a lot more that they can do.  Eventually they hit on the right meds, sometimes after some really bad guesses.  There is good reason for the warnings about severe mood changes and suicidal thoughts when taking some of these drugs.  They aren't kidding! DAMHIK

thank you all...and more thoughts

by ZigZagGoldenrod - 2021-11-02 21:19:04

@Julros  I don't know if they specifically tested for a PFO.  Irregardless, closing a PFO typically works for migraine sufferers who have auras, which I don't get.  Still, it is a question I need to ask my cardiologist.

@LovetheSun Ah, yes, Imitrex...the gateway triptan.  That and many other triptans didn't work for me (nor do other drugs tried).  Or, more specifically, triptans would take away *some* of the pain, but none of my other symptoms (speech issues, inability to think, memory issues etc.).  They'd never put me on beta blockers as they tend to slow the heart.  They prescribe that for people w specific heart issues and for many folks they are the holy grail.  I'm glad you found what works for you...I'm still on the hunt! 

@AgentX86 My cardiologist mentioned that a heart block could be hidden in my ECG somewhere (or masked, as he put it)...so I assume next steps is going to be to an EP for tests.  

I actually bought a pulse oximeter for wearing overnight and tracking my rate. I wanted to rule out sleep apnea (I don't have that).  My pulse ox is 96-99. 

I speculate that my heart rate has been trending down over time. While my blood is fully oxygenated, there's just not enough of it getting to my brain becaue of my low rate.  The low oxygen has been triggering migraines. It's why I get long ramp up and ramp down of symptoms...and it's why triptans (which are blood vessel constrictors) take away the pain but not my other symptoms. It's a theory...which is better than no theory.

There are two issues here really:  1) I just feel awful now.  All the time.  I'm not recovering any more since September's heart event/migraine.  Now with my rate in the 30's-low 40's I really can't work. I spend many (most?) days on the couch and I always want to sleep and my head hurts most days (plus a host of other symptoms). Why the sudden drop, I have no idea, but this rate is too low for me. I am assuming that a cardiologist would consider a pacemaker for these symptoms alone, but maybe not.  As you said, it seems there are no other treatment options. 

2) I speculate about the relationship between my migraines and heart rate.  I doubt my neuro would be on board with a PM as a primary migraine treatment but I could be wrong.  However, the idea that I could reduce my migraines with a PM is so tantalizing...it's hard to not fantasize about it...a girl can dream!

 

migraines

by new to pace.... - 2021-11-02 23:17:41

Sorry for your problem.  You might try  to stay away from Gluten which is in Wheat,Rye, Malt. and see how you feel.

new to pace

Go to an EP

by Gotrhythm - 2021-11-03 15:44:21

Yes you should see an electrophysiologist.

I'm not surprised you feel rotten. With a heartrate that barely goes above 50 with exertion and a nightime rate of 32-34, unless you're an athlete in fabulous condition, those numbers are too low to feel good. In fact, with numbers like that, I'm a little surprised anyone called the Holter monitor test "normal." It's possible to need a pacemaker for what's called Sick Sinus Syndrome even when EKG, ECHO etc are all normal.

It's possible to need a pacemaker when there is no detectable heart disease at all. Cardiologists are trained to look for heart disease. SSS is a heart condition, but not a disease.

Does slow heart rate go with depression? You betcha. There's a real difference between a heart rate sufficient to keep you alive, and one that's fast enough (and responsive enough) to let you feel really good. Some people are more sensitive than others, but a too slow heart rate can make you feel too tired to do anything, generally dulled out, easily overwhelmed and many symptoms in common with depression.

MIgraines. I don't know what migraines have to do with heart rythm issues. I've only ever had very mild migraines, but over ten years of having a pacemaker, I've learned that a symptom that my condition has changed a litttle and my pacemaker needs a new adjustment is a sudden stabbing pain in one temple. Usually goes away in 5-10 minutes. I have no idea what the connection between my heart and migraines is or if there is any connection at all.

I kind of have AgentX's opinion of neurologists. I'd say, wait until you've seen an EP. If you do need a pacemaker, an EP is who you want to do the surgery.

 

Just Some Additional Thoughts

by Marybird - 2021-11-03 18:27:13

Hi ZigZag,

I'd think it's entirely within the realm of possibility that your ongoing bradycardia might contribute to headaches- with the idea that perhaps the blood supply to the cranium ( and brain, etc etc) could be compromised enough from the bradycardia to not only make you light-headed and tired, or fuzzy, but contribute to the headaches as well. I also have sick sinus syndrome, ( SSS) and before the pacemaker, I recall getting headaches at times, along with the other symptoms, when my heart rate was low. 

I also have tachycardia ( afib, now) and they diagnosed my SSS from monitor readings I had ( ZIO patch at the time), which showed "sinus bradycardia", ie, normal heart rhythm but slow, when my heart rate was in the low 40's, and the average heart rate over that two week period was  something like 52 or so. It also showed the tachycardia when it occurred. 

Thing is, if you are having bradycardia while they do an EKG, this will show there. If it's slow but with a normal sinus rhythm, they will call it sinus bradycardia, which is said to be the most common type of SSS. If your heart is also showing pauses between beats, ( significant, if I recall, if those pauses are greater than 3 seconds long, that would also contribute to the bradycardia, and it might indicate heart block.

If your bradycardia is intermittent ( which mine was at the beginning), and your heart rate is mostly normal, if you have an EKG when it's normal those are the results that show. It's also the reason for cardiac monitoring when arrhythmias ( including bradycardia) are suspected. The rationale is that a monitor applied for some time ( two weeks, 4 weeks, or longer, sometimes) will most likely pick up the arrhythmias that occur infrequently.

Generally, if bradycardia such as you describe isn't causing symptoms, they may figure a pacemaker is not indicated, but I'd think you'd be followed up pretty closely ( those are some pretty low heart rates you describe) over time, as it's likely to get worse. The criteria for implanting a pacemaker for SSS is that the bradycardia is causing symptoms such as lightheadedness, tiredness, dizziness, confusion, or  even passing out ( during pauses). Documenting this correlation between bradycardia and the symptoms is generally done during a cardiac monitoring period, when the patient feels the symptoms, pushes a button or otherwise documents the symptoms, which will occur during the bradycardia ( or other arrhthymia) if this is causing the symptoms- in your case this would be "symptomatic bradycardia". 

Sounds like you be experiencing those symptoms, and your bradycardia is documented. I'd think being able to show your bradycardia is causing those symptoms, at some point would be worthwhile. As others have said, you'd want to see an EP for all that. 

Best of luck to you.

Edited to add:

Looking at your heart rates, you say 30's to low 40's during the day???? Good reasons, I'd say, to feel miserable. As I recall, having heart rates below 40 during the day while you are awake meets another criteria to "consider" a pacemaker even if symptoms have not specifically correlated with those heart rates. You would find it worthwhile, I think, to seek out an EP to help you out here. 

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