Will A 24 Hour Holter Monitor + Echocardiogram Tell Me Anything? Very Fast Heartrate? Subtypes?

[trappedat20]

My neurologist ordered me to get both tests done when I went yesterday for my first appointment with him. He did it for 2 reasons: he wanted to make sure I didn't have an arrhythmia (I don't but docs like to rule out obvious stuff), and I told him how my seizures happen because my heart speeds up wayyyyy too much from normal activity. Now it's at the point where I roll over in bed and my heart starts to race, but now the stairs are causing me to have seizures because my heart feels like it's going 200+bpm out of nowhere. I'm starting to get very worried that I'm going to have a seizure at the gym too because I'm getting close to the point where I have a seizure as far as feeling sick an my heartrate goes. He said that when your heart beats that fast it's not really pumping blood or oxygen or something like that. I sound stupid so if someone remembers how this goes please explain it to me. I had horrible brain fog when I went and so my husband was the one explaining what he said to me.I always turn blue when I have seizures and I stop breathing and he said that could be related to my heart beating so fast. He was also talking about wanting to put me on a beta blocker but we are waiting until my next appointment (May 2nd) and for me to get both tests done. Do you think these tests will actually tell me anything or that they are just useless tests to rule out it being a heart problem? Will it show my heartrate acting abnormally to normal situations like going up/down the stairs?

So, I thought I would mention this. My blood pressure/heart rate use to act crazy with sitting to standing and stuff. Ever since the chiropractor my blood pressure and heart rate seem pretty normal when I'm sitting or going from standing to sitting. There's not a big change like before. This is weird to me because the chiropractor didn't help my dysautonomia but why did it make my blood pressure/heart rate normal? Granted when I do certain activities my body still responds very abnormally. Even though the simple act of standing doesn't make my blood pressure/ hr act crazy have me go up/down the stairs or to exercise or even roll over or stretch my heart rate likes to go crazy. I haven't really taken my blood pressure lately so I don't know if it still goes crazy during these activities but I would assume it does. Can anyone explain this? How did the chiropractor not help me like they said they would but it somehow made my standing/sitting blood pressure normalize? Do I even have a dysautonomia subtype? How many people don't. Feels like POTS and Dysautonomia is used interchangeably I feel like I never fit a subtype. Before my body use to act similarly to POTS but my blood pressure/hr didn't act consistently when I would stand. Sometimes it would make my blood pressure skyrocket, sometimes it would make it plummet. Now my blood pressure/hr is normal. I know for Inappropriate Sinus Tachycardia your resting heart rate has to be over 100 but my resting heart rate is fine but my heartrate acts very abnormal to normal situations. It likes to skyrocket at the tinest things. Does anyone have any insight into this?

Sorry I post so many questions on here. I feel like I take doctors opinions with a grain of salt nowerdays and you guys are the smartest people I know when it comes to this stuff.

[Katybug]

When the heart beats really fast, the contractions of the muscles tend to become inefficient so even though it is contracting quickly, it's not squeezing the blood through effectively. That, in addition to any blood pooling in the lower extremities, means that oxygenated blood is not getting to your brain in sufficient amounts to keep you conscious, ans unfortunately in your case, your oxygen is getting low enough to actually cause a seizure.

As for the chiropractic/corrected sitting bp, etc., early on in my treatment, my POTS neuro explained that there are studies that show that there is not a direct correlation in people with POTS between their bp/hr and their symptoms. For example, when I was on a beta blocker, I had close to normal vitals but was still completely symptomatic. Doc said it is not unusual to see this.

[trappedat20]

@Katybug You are always so helpful whenever I ask a question on this forum. Thankyou. That makes me feel a lot better because I felt like my standing/sitting bp became fine but I still felt just as crappy and I didn't know why. I'm glad to know that there isn't a direct correlation and it's not unusual for that to happen. Do you think that could also be the cause of my passing out? I always assumed my passing out was related to the blood pressure because my blood pressure use to give off crazy readings but I don't get those crazy readings anymore. I'm not sure if my blood pressure still does crazy stuff during things like going down the stairs and stuff but a lot of the times when I feel like I'm going to pass out my heart does beat faster.

[Katybug]

I don't know the answer to that. In my own head, totally not backed up by science but just my observations of people's stories here and my eds forum, I think that the reason we don't feel better even when our vitals are behaving "normally" is that we haven't addressed the underlying cause of our dysautonomia. I realize now that my eds and mcas and screwed up neck cause me to feel way worse than pots, and are really probably causing my pots. Another thing that I have learned from my pots neuro.....there can be wild fluctuations in HR and BP and most equipment isn't made to take these readings fast enough to catch it. He made me take a second ttt because he has specialized equipment that takes a constant reading of your vitals. He was capturing a true play by play with me that wasn't apparent on my first ttt where they were taking periodic readings. My bp plummeted 2x but just for 2-3 seconds while my HR had a steady incline for the first 10 minutes and then stayed a consistent 2x my resting rate for the remainder of the test. Because home monitoring equipment can't take readings that fast, I'm not sure you would have a clear picture of everything that is happening.

[trappedat20]

@ Katybug that makes sense. I bet I won't feel better until my primary condition is identified. I don't even know about the primary cause of my dysautonomia anymore. I feel like I'm grasping at straws. My doctor thought it was Mytonic Muscular Dystrophy at one point, my husband thinks it's mitochondiral disease because I felt a little better taking creatine and now I'm constantly craving creatine powder, and we really thought it was a chiari malformation because I had all of the symptoms and it even explained my neck being all screwed up and feeling like my brainstem was compressed and stuff but the catscan and MRI of my brain only said no. So now I don't really know. The list of possibilities is so extensive and I'm not even sure where to start.

[Katybug]

Have you had an upright mri? I know the docs told you regular mri or ct would show chiari but experts in the field insist on an upright mri these days.

[IceLizard]

Sometimes I do not fit the strict definition of POTS: my heart rate and bp will be OK going from sitting to standing. But, I will also have times when it goes crazy- 200 bpm from climbing stairs or hills or from exercise and I have to stop before I have convulsions. I have had the effect of the heart speeding up when I turn over, too, but that has gone away now for some reason.

When I was hospitalized, the tiniest things would set it off and I was constantly monitored via a Holter monitor or similar device. It showed that my heart rate went tachycardic sometimes in response to sitting or shifting in bed, and at that time especially to trying to stand up. This monitoring gave the doctors a picture of what my heart rate was doing during various "activities," and made sure that my heart rhythm was normal besides being too fast.

With a wearable Holter monitor you are supposed to keep a diary of activities you are engaged in and how you feel so they can correlate this information to your heart rate. At least that is what I had to do when I wore one. It is supposed to give doctors a better picture of what is going on with your daily heart rhythms.

What really helped stabilize me was lots and lots of sleep. I am talking 20 hours a day when I got back from the hospital. I would wake up, eat something, practice moving around a little, then go back to bed.

[trappedat20]

@Katybug I haven't. I know it's the usual but they were telling me if I had one the catscan would have shown it and all that. Do I really still have a chance of having it since I haven't had an upright MRI?

@iceLizard wow that sounds just like me! How do you realistically sleep 20 hours a day though?Did you do that for just a little while or do you have to keep up with it? How much does it help? That's really interesting that it helped. I wonder the science behind it.

[Katybug]

All I know is I am seeing a world renowned neurosurgeon whose speciality is chiari and cspine instability and he doesn't even look at regular mri's and he uses ct for gaining additional information on cspine instability. But he solely uses the upright for diagnosing chiari. Truly it makes sense to me if you think about the laws of gravity. While laying down in a regular mri your brain can roll to the back of your skull allowing the tonsils to look normal at the base of the skull. But when you sit up gravity is now pulling down on all of the structures of the brain and would position the brain and tonsils differently at the base of the skull. I don't have any idea if you have chiari, I'm just saying if I thought there was a possibility I had it, I would insist on having it ruled out using the gold standard in diagnostics. The technology exists so why on earth the doctors don't use it is beyond me....it's not more expensive than regular mri. I honestly think the docs are scared of it because they are unfamiliar with it.....just like pots and chiari. My primary didn't even know it existed until I gave him the report.

[IceLizard]

I was in the hospital for about 6 days. I had episodes of blood pressure drops and spikes, and episodes of very high heart rate and convulsions several times a day. I was so bad that I had the heart rate spikes and convulsions even while laying down and sometimes waking me from sleep. I responded a little to IV fluids and I responded very badly to Inderal. I could not stand up at all except maybe twice while I was there. Sitting up was a challenge.

After coming home from the hospital, my son was in daycare and my husband at work. The first 2 days I still could not stand up straight without a really fast heart rate and collapse, so I moved around bent over. I did not set out to sleep so much, I was just so exhausted. By the third day I was sleeping more like 14 hours instead of 20 and I was able to walk upright a little. I usually sleep from 10 to 12 hours. Requiring more sleep is not uncommon with dysautonomia. Dr Thompson himself (The Florida doc with POTS) says he sleeps 14 hours during flare ups. I am not sure why.

I am more "normal" now. There are times when I have I do not have the POTS heart rate increase with standing and there are times when I do. But, it is nowhere near as bad as during the flare. I still cannot do stairs or upright exercise, though. I have a recumbent trike to help me with exercise.

[trappedat20]

@Katybug thanks for the info. I will look into it further than to make sure. I have an appointment with my regular doctor who is a lot more open to this stuff May 1st and I will bring it up to him. The rest of my doctors are such know it all's when they don't even know much about dysautonomia. My regular GP is very open to my suggestions and investigates anything I think could be wrong.

@IceLizard that's interesting because I try not to sleep more than 8hours because of all of those stupid things that tell you that you need 6-8hours of sleep and not more or less, but I always feel like I need more. Maybe I will try to go to sleep a little earlier so I can wake up a little later and allow myself to sleep 10-12 hours if I need to. Normally I figure it really doesn't matter because I'm exhausted no matter how much I sleep but maybe if I actually sleep more I'll feel better. It's worth a try. Thanks.