Dysautonomia

Hi Guys,

I notice a discussion on the MAV facebook group about people believing they have MAV for many years but then learning that actually they have been suffering from autonomic dysfunction.
This diagnosis entails illnesses such as POTS…

How do we distinguish between these nervous system conditions and MAV? maybe a question for a specialist

As someone who actually suffers from a dysautonomic disorder (vasovagal syncope–also known as neurocardiogenic syncope diagnosed at age 18 with a VERY positive tilt test) I can tell you that the “dizzy” you feel from orthostatic disfunction (poor blood pressure control) is NOT the same kind of dizzy you feel from MAV. The “dizzy” from blood pressure issues is that kind of “I stood up too fast” dizzy or I blew up too many balloons or hyper ventilated dizzy–and when your blood pressure is really bottoming out–you wind up with this stomach dropping world darkening “shhhhhh oooooomp” kind of shut out like they sort of show on TV–they do a pretty good job actually of illustrating a black out on TV. I guess enough people have done it to be able to describe it to directors/producers and cameramen :o

Anyway–when I started getting the MAV issues–I told my doctor it was different. And, living on the east coast, having never experienced an earthquake until last August when that freakish thing happened over here–I had no frame of reference to describe what I felt. But once we had the earthquake I did. It was like I was rocking or the earth was rocking, but no one else seemed to feel it. I pulled to the left, like my “steering was off” and once in awhile I felt like I was inside a snow-globe and someone turned my whole world upside down and back again while I just sat there. It was like a “phase shift” or some super weird movement that wasn’t there. I called it dizzy, but I didn’t really feel “dizzy”–what else would you call it though?

And–I sort of felt tipsy–like I had had three beer and was sober enough to pretend to be sober and get away with it–but the effort took (takes) so much energy that it exhausts me.

That isn’t the kind of “dizzy” you feel with POTS or Neurocardiogenic Syndrome. Those are sudden heart pounding BP drops that make you feel like you are going to pass out. Or they kind of make you feel like your periphery is going dark ish and you need to sit down–often you have this urge to put your head down–an instinct meant to get blood to your brain.

The problem is–when you go to use your WORDS to describe these things–if you haven’t experience both–the WORDS you use to describe them can be misleading for doctors who can only listen to what you are describing and not experience what you are actually feeling.

One of the questions you are supposed to ask the expert is whether or not there is a known link between dysautonomic disorders and MAV–this is my question. As you can see–I’ve dealt with “weirdness” beyond MAV for my whole life–thankfully they’ve been mild enough to allow for a “normal” life in between weirdness. But still–assuming that migraine and dysautonomia (both having autonomic connections) are related–it would be nice if someone would study that connection for those of us sufferers. :roll:

I’m struggling with the same question. My very first symptom was syncope (I fainted) out of the blue, and I felt crappy (weak, fatigued) for days after. When I went in, they found my resting heart rate was in the 90s, and would go up to the 130s on standing up. I went through a bunch of cardio tests including the tilt-table, but here’s where it gets especially frustrating: my symptoms vary, and the day of the tilt-table test was reasonably good. So I was diagnosed with “borderline POTS” but not actually POTS. I definitely did have tachycardia though (from the first fainting episode on, but not before that), even if not always postural, and still do.

It was a few weeks after the initial fainting episode that the 24/7 vertigo set in. The neuro who subsequently saw me after the tilt-table test diagnosed me with MAV, and prescribed the beta blocker which the cardio happily agreed to. The neuro said that once the MAV was treated successfully, all the POTS-like symptoms and other symptoms would recede too. The former doesn’t seem to have happened so far :(.

I went to a new neuro a year later, who says that this is not at all MAV, but dysautonomia/POTS. So now, I’m going to meet someone who specialized in autonomic dysfunction, but that might be a long time away. I have no idea if for me, it is MAV causing POTS or POTS causing MAV, or just MAV, or just POTS.

The connection between VM (MAV) and dysautonomia/POTS is still unclear, not just for me, but for patients and doctors alike, seemingly. Here are links to posts here at mvertigo dealing with this issue: see http://mvertigo.cloudapp.net/t/dysautonomia-i-e-pots/4125, http://mvertigo.cloudapp.net/t/anybody-here-have-dysautonomia-fainting-or-pots/6328, and http://mvertigo.cloudapp.net/t/wheres-heather/690.

I’ve always felt the fact when I stand I feel a little dizzy to be linked to my MAV problems. But any physician I’ve seen has checked my blood pressure (normal) and asked if I’ve felt faint (never) so has dismissed it as a redherring.

If I was to make a guess I’d say that my dizziness is indeed caused by migraines - but blood pressure surges, or lack of them, may act as a trigger if the other conditions are right. (I base this on personal experience from playing sport btw, not anything scientific I’ve read.)

I too have been diagnosed with cardiosyncopy, several years ago, and failed the tilt table test miserably. I probably passed out within 3 minutes! I too need 2 or 3 days to from the pasing out episode. I play sports and get dehydrated easily. I have a sensitivity to extended exposure to the sunlight and heat, so I have be careful when out in those situations. I am hypoglycemic as well, so i need to eat and drink constantly to avoid a syncope episode. I was diagnosed with MAV back in mid-May 2013. I have also questioned the connection between cardiosyncopy and MAV. With my MAV condition, I do not have the headaches, just the dizzyness and off-balanced conditions. I am on nortriptyline (currently 80 mg, to be increased to 90 tonight), and have a sensitivity to sounds - a trigger - and movement. Yesterday I had a Physical Therapist come to the house and gave me a treatment which included a neck manipulation that lasted almost 2 hours. I felt ok after she completed her treatment. About 1 hour later I got very woozy and off balanced, this lasted about 4 hours before getting better.

I am so glad to hear that others also suffer from cardiosyncope and MAV. I have another another month before my next neuro appointment.

Good luck to everyone and Happy July 4th for those of you in the states. :smiley:

I do think that autonomic dysfunction can absolutely be contributing to symptoms. I know that MANY Lyme patients have autonomic dysfunction - I do! If you have symptoms beyond dizziness and head pain I cannot urge you enough to read the Lyme posts on the “Other illnesses and Conditions” page. Lyme is a worldwide epidemic, but it is rampant in upstate New York, Jeff. I hope that you can read my posts on Lyme. Do not want others to suffer as I have as I didn’t discover my root issue until after 6 years of misery. Best of luck!

Thanks, everybody. sparks: my blood pressure seems to remain constant regardless of posture. But my HR does go up on standing on most days, and quite a bit on some days (30+), mainly in the mornings.

I’ve had a little bit of vision blurriness, and definitely have had a “funny feeling” when I move my head about even a bit. I can’t tell any more if it’s MAV or the medications (amitriptyline), or POTS or what. Sigh. :x

I’m so glad to read this discussion. And dolfnlvr, I think you described the differences in the two conditions well. I’ve had episodes of vasovagal syncope since my teen years. The dizziness/vertigo/off-balance/MAV symptoms started 12 1/2 years ago, and it’s definitely not the same. However, on one of my trips to the ER, the doctor said I had autonomic nervous system insufficiency and Postural Tachycardia. My cardiologist later ordered a tilt table test but the insurance company wouldn’t approve it, so it never happened.

I, too, live on the east coast and experienced the earthquake last year. It was horrible. I immediately moved to the sofa where I could balance myself in the middle without feeling I was going to tumble out of my chair. I felt the earthquake coming before my husband did, and even after he said it was over, I assured him it was not because I could still feel it. Only after he noticed the storm door was still shaking did he believe me. And you’re right, it’s not exactly dizzy but almost an internal vibration that is terribly disorienting.

If anyone gets a specialist’s opinion on the connection between dysautonomia and MAV, please share it. I’m very interested in how the two might be related.

Thought I’d share http://www.medlink.com/medlinkcontent.asp.

“Postural orthostatic tachycardia syndrome” Contributors: Douglas J Lanska MD MS MSPH, contributing editor. Originally released February 20, 2008

Not reproducing that text here because of possible copyright issues, etc. But search for the word migraine in it.

I’ve also been diagnosed with both POTS and vestibular migraine. I got the POTS diagnosis first but got much worse with the treatments prescribed for that disorder. After 18 months of doctors not being able to tell me why I was getting worse (most were not familiar with the condition at all), I ended up at Mayo Clinic’s week long POTS clinic. I went through all the testing for POTS and my diagnosis was 1) chronic migraine, including vestibular migraine, 2) POTS secondary to the migraine issues, and 3) chronic subjective dizziness as a result of the first two disorders.

My doctors there confirmed that they are related conditions. In my case, things I was doing to try to control POTS (eating lots of salt, stopping decongestants) made the migraines worse. I was also taking nortriptyline for the headaches, which made my POTS symptoms worse. It was a downward spiral from there. I’m told that as I start to see improvement in one condition, it should reverse the trend and help the other get better as well. I’m still working to find an effective treatment plan, but feel much better knowing that I have doctors to consult about treatments that are ok for all 3 conditions. At least I’m no longer doing things to make myself worse.

Makeitgoaway - I was told the same as you, that the POTS symptoms (in my case, feeling like I’m going to pass out), should go away once the migraines are under control. This makes sense because for me, now that I’m off nortriptyline I only get those symptoms right before or right after a migraine. Anyway, this is all specific to my symptoms. I know there are lots of POTS patients who have migraines, but POTS is the primary disorder.

Please continue to share what treatments you find to be helpful for both conditions!

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Thanks for posting, sarahl, that’s interesting. I’m glad to know I’m not alone in being caught between the POTS–MAV continuum.

sarahl, what were your treatments for the POTS diagnosis that made you worse? Was it just the increased salt and avoiding decongestants? I had increased my salt intake on initial suspicion of POTS, and I’ve continued that practice for a year now, but I haven’t found that it either increased or decreased my symptoms. Also, I feel exactly like you - feeling like I’m going to pass out a majority of the time (and I did pass out twice at the beginning because I was clueless about the symptoms).

I’m taking amitriptyline and propranolol. Have you head anything about whether amitriptyline might make POTS symptoms worse?

As I said before I don’t have POTS, I’ve got the vasovagal but I can tell you that nortryptiline nearly put me to the floor. I was only able to trial it for three days before I thought I’d pass out just by standing up.

Sarah - just wondering if you know why Nortriptyline would make POTS symptoms worse. I heard that somewhere before as well but wasn’t sure why

NERD ALERT!!!
Nortryptiline is an anticholinergic drug, which means that it works by blocking the neurotransmitter acetylcholine in the central and peripheral nervous system. Acetylcholine is the chemical that induces many of the parasympathetic nerve impulses such as the fight or flight and other Blood pressure shifting reflexes. Those of us with dysautonomic disfunction already have issues with our parasympathetic pathways and BP control—so messing with the neurotransmitters that send the messages to control BP isn’t the best choice. But—in defense of our Neurologists etc—when they are trying to deal with our migraines and disequilibrium or with depression issues—the drugs of choice include nory as a first liner. Since it doesn’t always affect all of us the same—they often try it out to see if we can tolerate it before ruling it out. Usually—worst case scenario, we pass out and they decide it’s a no go LOL :lol:

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BTW–as a migraine med or anti-depressive agent, blocking acetylcholine can be helpful. It can help regulate the stress mediated BP shifts that can be migraine triggers for people with mild dysautonomic disfunction that causes frequent and intense BP changes that lead to headaches–and the migraine cascade (theoretically, this is how Nory works)…and for depression, it is thought that too much acetylcholine and other neurotransmitters flood the brain/CNS causing chemical imbalances that shift the emotional equilibrium for the person experiencing the problem.

Sorry–had to finish the nerdiloquoy

— Begin quote from "dolfnlvr"

Sorry–had to finish the [size=150]nerdiloquoy[/size]

— End quote

This needs to be sent to Oxford English Dictionary as a “new word.” LOL.

Love that, Dolf! :lol:

That’s interesting, thanks for that, dolfnlvr. Just looked up http://en.wikipedia.org/wiki/Anticholinergic on Wikipedia.

dolfnlvr - thanks for the “nerdiloquoy” ! SO much better than my explanation of why nortriptyline is bad for POTS. All I know is that I got some relief from headaches and dizziness, even ability to read on the computer, at a low dose. When I tried to push higher (above 25mg) to get even more symtptom relief I couldn’t stand up without feeling like I was going to faint. I ended up staying at 20mg for about 6 months and it did help with the headaches, but I didn’t realize how much it was impacting my heart rate. On that low dose of nortriptyline my resting HR was around 90-100 and now that I’m off it’s back around 75. I don’t know if amitriptyline would be quite as bad, but the doctors are keeping me off all tricyclics.

— Begin quote from "makeitgoaway"

Thanks for posting, sarahl, that’s interesting. I’m glad to know I’m not alone in being caught between the POTS–MAV continuum.

sarahl, what were your treatments for the POTS diagnosis that made you worse? Was it just the increased salt and avoiding decongestants? I had increased my salt intake on initial suspicion of POTS, and I’ve continued that practice for a year now, but I haven’t found that it either increased or decreased my symptoms. Also, I feel exactly like you - feeling like I’m going to pass out a majority of the time (and I did pass out twice at the beginning because I was clueless about the symptoms).

I’m taking amitriptyline and propranolol. Have you head anything about whether amitriptyline might make POTS symptoms worse?

— End quote

When I was first diagnosed with POTS, I went on a beta blocker and midodrine, stopped decongestants, stopped caffeine, added lots of salt, and started drinking multiple glasses of gatorade a day. I only lasted about a week on the medication because it dropped my BP so low. I had also stopped birth control pills about a month earlier, which I think is a major factor in my symptoms. I’m not sure which of those treatments made me worse. Knowing what I know now about migraine brains, doing all that at the same time was a terrible idea.

Beta blockers are out for me because of low BP. I’ve added caffeine back into my diet and have a half cup in the morning (ok’ed by headache specialist). It doesn’t seem to impact my headaches or dizziness, and I think it helps. I’ve stopped the gatorade because it didn’t help and it has lots of additives/chemicals. I was advised at Mayo to try adding salt in again unless it makes the headaches worse, walk as many times a week as possible, do strength training on my legs, and try to slowly habituate myself to working on the computer and being out in places like restaurants and stores. I’m managing this ok, but am still trying to find a medication that works. My first try was Remeron, which made the migraines worse. Next on the list is Effexor but I’m trying to address some hormonal issues before I start the trial of Effexor.

One thing I’ve noticed from my log is that my dizziness/disequilibrium gets significantly worse after many or most meals. I don’t see folks here complaining about that, so I assume that’s more on the POTS side of things. I do share other symptoms with folks here - the 24/7 disequilibrium (which I don’t find too many POTS folks complaining about), the rocking sensation, etc. And finally, having been on propranolol (between 60mg and 120mg/day) for a year has helped reduce my HR, but hasn’t helped with the disequilibrium, the syncope, or the weakness and fatigue.

I still have no clue if the root cause is MAV or POTS. Have some more testing coming up in a few months. Will keep this thread updated.

Thanks to everyone who posted under this topic. I wasdiagnosed with primary hypertension 5 years ago when I was 27 years old. One thing that always bothered me about this was the fact I had NO risk factors for this, unless you count heredity which even I question. Mother developed high BP at age 60(but so do many people?), and my grandmother was 19 when diagnosed but in hindsight, I sometimes wonder if she had Dysautonomia instead.
As I did not need to modify diet, exercise, etc, I have only needed bp meds off and on since being diagnosed. Even my p-doc said this is unusual for hypertension (the off and on thing). Only recently have i realized my bp is high only while standing or mobile. My tachy has always been mild and also episodic, and not necessarily postural. It was also 5 yrs ago when other mysterious symptoms of “physical anxiety” cropped up, so i think there is something to this. 4 years ago, vertigo started, gradually got worse until 2 years ago and has been “stable” ever since. The vertigo may or may not be related to Dysautonomia for me, but i see no harm in investigating the POTS route regardless.
I am not registered on Dinet forum because i THINK you have to be diagnosed to register there, yes? So I was wondering if anyone knows a website listing POTS specialists or neurocardiologists? I live in NC, so my first guess would be Duke. In response to others on this thread, I have also noticed Potsies on various forums testing positive for Lyme…