I swear sometimes the rocking in my head is in tune with the beating of my heart. And it also seems when I walk, or do general activity it makes it worse. Then when I lie down for a bit it calms down. Does this sound familiar to anyone? I’ve had an EKG and a Berkley Heart Lab so I’m not too concerned about my heart. Well, maybe I am? It just seems a bit odd. Sometimes I wonder if that’s why the valium helps me.
Yes, it feels that way to me, in tune with my heartbeat. However, I notice it less when I’m walking around, but much more so when I’m just standing still, sitting or lying down. I’ve also had heart tests, and no problems detected there.
Valium helps me a lot too.
I dont have this, but I am going to refer to Dr. SS Surinthiran’s theory to speculate here…
The human body is rarely still, therefore the brain learns to tune out small movement as “white noise”. In a MAV patient, the brain cannot tune out normal movement. I believe that the impulse of blood vain can contribute to this “white noise” in the brain.
Thank you, that explanation makes really good sense 
I just saw the doc yesterday and he asked me if I feel better when walking. I said YES. He explained because
when you walk it uses all your brain mechanism and your to busy walking to notice anything else and your body is in motion so it masks
everything. He also said walking was the best thing I can do for my dizziness. Try and do an hour a day, as this is the best way to “reprogram”
your brain per se.
I also have an appt with the Cardiologist today as my heart is okay, but the neuro noticed that when I go from sitting to standing it jumps up to high.
Which is a hallmark symptom of POTS Syndrome. Which is crazy, because the MAV symptoms and POTS are almost identical except for the heart thing,
and of course I never noticed it. He just happened to have a heart rate thing on my finger while testing…
You may want to lay down test your heart rate stand up test it and wait 5-10 min’s standing, and test again, if its 96 or more, usually has to be 100 for pots but 96 is “borderline” then you may have POTS.
Cant wait for my appt today, to rule something out, or maybe get a 100% diganosis. Sorry this is so long.
OH and one more thing… if it is POTS they tell you to INCREASE Sodium. Only thing that is the opposite of MAV.
K
Forgive me for my ignorance but what is POST syndrome? I’m going to google it.
Sorry, Its Postural orthostatic tachycardia syndrome. Dinet.org and wikipedia even Mayo Clinic regognizes it. Just like MAV it hasn’t been recognized for very long and not everyone knows about it. I got lucky that the neuro noticed my heart and even luckier that the Cardiologist told me about Pots. Although I looked it up and found it first, I didn’t bring it up, he did. I will know here in a few hours. Not sure what one Im wishing for POTS or MAV… If its not POTS at least then, I will except the MAV. Because Im one of those ones that haven’t excepted it. Im a black or white girl, no gray areas, and that could be my biggest fault.
Please let me know how it goes Kristina. When Dr. Gray calls me today I’m going to mention this. I have had a problem with tachycardia for years and after looking it up it sounds possible?
I understand the whole black/white thing believe me. POTS sounds very confusing.
Have you added magnesium to your daily supplements? I have low blood pressure, which lowers upon standing and also frequent PVCs which were confirmed with a holter monitor. Is that what your tachycardia is, like skipped beats? That’s what my PVCs are and they were very frequent, even moreso while pregnant and very concerning. Anxiety made them much worse of course.
I’ve found that with my daily 400 mg of magnesium that I take for migraines, the PVCs and blood pressure issues have evened out a little bit but it still does run low. If I skip a few days of magnesium, I can feel the PVCs creep back in so I try not to run out. It really has helped with the skipped beats.
— Begin quote from “ichbindarren”
I dont have this, but I am going to refer to Dr. SS Surinthiran’s theory to speculate here…
The human body is rarely still, therefore the brain learns to tune out small movement as “white noise”. In a MAV patient, the brain cannot tune out normal movement. I believe that the impulse of blood vain can contribute to this “white noise” in the brain.
— End quote
This is a good explanation, thank you. It’s amazing how sensitive I am to the tiniest movements, smells, etc, that no one else experiences. Like at the gym, I feel like the floor is always moving because people are on the treadmills. Or like how over the holidays at my parent’s house, I smelled smoke from somewhere, and no one else could smell it at all until they opened the door and stepped outside. I wish I wasn’t so darn sensitive to everything…it makes it so hard (or often impossible) to just be still and relax.
Hi Elisha,
Well they said I may have a mild form of it, but its not what’s causing my dizziness. Usually POTS pt’s heart rates go up a little higher then mine did.
I mentioned MAV and she said that most POTS patients that come in, where misdiagnosed with MAV first. Doesn’t seem like my case. Doc’s are conflicted with me, one thinks MAV one thinks Cerviogenic dizziness. Sigh…
If you had problems with tachycardia then this could be you. One thing they say, is you need to see someone that knows about POTS. Most doc’s dont.
And they will dismiss your tachcardia. Just like MAV, if doc’s dont know about it, then you dont have it, type thing. Good luck.
Hey Kristina,
How frustrating for you. Did they tell you to do anything for it? So basically you have MAV and POTS?
I’ve done some research and you are certainly right about finding a Dr. that knows about it. I’ve emailed my Duke Neuro for her input, just in case.
Thank you for in the information!
Just a quick question, by any chance did your start after pregnancy? I see your pic of you and your little one.
Reason I ask, is because pregnancy can cause pots. Or if you have it already and dont know it, it will show itself after pregnancy.
But they said I may have a mild case, but not whats causing my dizziness. So… I was given xanax by the Oto yesterday. 1/2 pill 3x a day.
He believes this will do the trick… we will see.
Kristina, this did all start after the birth of my second child. I did have high BP and was induced due to tachycardia.
I’m going to PM you what my neuro wrote me back regarding this and you tell me what you think.
Do you think you’ve always had POTS. It’s hard to grasp that you have both.
Hi - I’ve been away from posting for awhile but I’m still here and dealing with this. To answer your question about rocking feeling like it was in tune or synched with your heart - yes. That was the symptom that I initially presented with and stumped 15 docs before I found one that listened. I’ve been through countless heart tests, MRIs, you name it just like we all have. I have been tested for POTS too, but most POTS patients blood pressure drops and they feel faint or lightheaded, not like they are rocking or spinning. I never had that so POTS was ruled out. Valium helps me too as had diet. Staying away from sugar has helped quite a bit and I’m also on 15mg. of ami. Now I feel like the rocking is synched with my heart only when things are really bad and that is usually around a certain time of the month, when I am seriously stressed or when I’ve strayed too far from my schedule or diet.
I’m not sure that I understand all of this yet, but rest assured, there are others out there that are feeling what you are feeling. Movement has always been my saving grace, but it’s different for everyone.
Hope that helps at least a little!
Let me know if you have other questions - this is going on year 3 for me.
Cheers ~
Thank you opera girl. I appreciate your input. When you say you are on ami I assume you mean amtriptaline?
Yes - I started about 1 year ago and it took me a few months to see some results and figure out the correct doseage.