Positive Tilt Table With Tetany Afterwards...

[Chaos]

Finally had a tilt table test yesterday but the cardiologist says it seems to indicate more NCS than POTS. BP dropped into the 40's (I still didn't faint) and HR dropped to 60 (from 108). Once they put me back down though, I had horrible tetany in my arms, legs and abdomen. (The "posturing" that occured reminded me of brain injury patients.) In my arms, the spasms lasted a couple hours. I also had horrible shakes/tremors for several hours. Finally thought I was better about 4 hours after the test and tried to get up to the bathroom but the tremors came back so badly they made me stay another couple of hours. The tremors really felt like a MAJOR adrenaline rush which I've had post-delivery, post-almost-running-over-a-rattlesnake-on-my-bike, post-my-son's-car-accident, and sometimes just when I wake up in the morning for no apparent reason. I hadn't taken the beta blockers before the TTT so I took it after the bathroom trip and it helped a lot.

When I did my own poor man's tilt at home in Dec. I recorded 5 mornings in a row and had a 40-50 beat increase every time. This morning I did it again and had an increase from 60 in supine to 128 by 10 minutes after standing. ( I can rarely get my BP in standing. It usually reads as an error and when I do finally get one it'll have a really narrow pulse pressure.) Yesterday my resting HR was much higher than normal before the test so maybe they didn't see a 30 point change?

Trying to sort this out now. Can you have a hyperadrenergic form of NCS? Could I have NCS as a baseline disorder that would somehow flare into POTS after surgeries and illness (like mono)? (after I got sick last July my HR was consistently in the 140s after my showers, etc even on beta blockers). I'm so confused! Would love to have some input from some of you with more experience on this track!

Is any of this worth going to Mayo or someplace to try to sort it out? I was hoping this diagnosis might finally explain all the weird GI, migraines, fatigue, weakness, shortness of breath, rashes, hives, angioedema, etc etc I've had that none of the doctors can explain yet.

[potsgirl]

With POTS your HR would go up by at least 30 points when you go from lying to standing, but your BP should not fall very much. It looks like you certainly have the rise in HR, but that your BP drops a significant amount, too. When you were doing your readings at home, what happened to your BP when you went from lying/standing? It may be that you have orthostatic intolerance.

[Chaos]

When I try to do the blood pressure at home in standing I rarely can get a reading. It almost always reads as an error and when I get one it ususally has a very narrow pulse pressure (e.g. 86/74). I couldn't see the monitor yesterday so don't know what my BP was doing prior to it really dropping. The nurses kept saying, "wow your body compensates for A LOT! You must be in really good shape." Not sure exactly what they meant by that but I found it rather humerous since I haven't been able to exercise in 6 months now.

[juliegee]

Finally had a tilt table test yesterday but the cardiologist says it seems to indicate more NCS than POTS. BP dropped into the 40's (I still didn't faint) and HR dropped to 60 (from 108). Once they put me back down though, I had horrible tetany in my arms, legs and abdomen. (The "posturing" that occured reminded me of brain injury patients.) In my arms, the spasms lasted a couple hours. I also had horrible shakes/tremors for several hours. Finally thought I was better about 4 hours after the test and tried to get up to the bathroom but the tremors came back so badly they made me stay another couple of hours. The tremors really felt like a MAJOR adrenaline rush which I've had post-delivery, post-almost-running-over-a-rattlesnake-on-my-bike, post-my-son's-car-accident, and sometimes just when I wake up in the morning for no apparent reason. I hadn't taken the beta blockers before the TTT so I took it after the bathroom trip and it helped a lot.

When I did my own poor man's tilt at home in Dec. I recorded 5 mornings in a row and had a 40-50 beat increase every time. This morning I did it again and had an increase from 60 in supine to 128 by 10 minutes after standing. ( I can rarely get my BP in standing. It usually reads as an error and when I do finally get one it'll have a really narrow pulse pressure.) Yesterday my resting HR was much higher than normal before the test so maybe they didn't see a 30 point change?

Trying to sort this out now. Can you have a hyperadrenergic form of NCS? Could I have NCS as a baseline disorder that would somehow flare into POTS after surgeries and illness (like mono)? (after I got sick last July my HR was consistently in the 140s after my showers, etc even on beta blockers). I'm so confused! Would love to have some input from some of you with more experience on this track!

Is any of this worth going to Mayo or someplace to try to sort it out? I was hoping this diagnosis might finally explain all the weird GI, migraines, fatigue, weakness, shortness of breath, rashes, hives, angioedema, etc etc I've had that none of the doctors can explain yet.

Hi Chaos-

You should ask for a print out of your whole TTT. It will show your BP & HR every few minutes. Then YOU can tell whether or not it was positive for POTS. (Unfortunately, some docs don't have a thorough understanding of autonomic dysfunctions.)

Your Poor Man's Tests, that are considered to be even more reliable than the real thing by many experts as they more closely simulate "real life", are certainly indicative of POTS. Many have both POTS and NMH. In POTS, your HR rises by more than 28-30 BPM to compensate for a fall in BP, otherwise known as NMH.

This DX could most certainly explain your weird GI stuff, migraines, fatigue, weakness, and shortness of breath. Have you consulted with an allergist re. your other symptoms- rashes, hives, angioedema, etc?

I've had periods of uncontrollable shaking following procedures, etc. But, no tetany that I know of...THAT alone is a good reason to consult a neurologist to get an expert opinion. I've heard that some who faint with NMH, appear to have seizure-like activity while unconscious. But, you were conscious...

I hope you get more answers.

Julie

[Chaos]

Juli-

Thanks so much for the response and for the tip about getting a copy of the complete study. I've been so depressed all day thinking I'm back to just being "crazy" again and it's all in my head. The cardiologist was saying that with POTS the heart rate has to go up and stay up (indefinitely). At home, my HR goes up and stays up for the 10 minutes but by then I feel bad enough that I just want to lie back down. I couldn't possibly stand still long enough to make myself experience what I did yesterday and see if it stays up even longer. Frequently, once I start moving a little my HR goes down a bit, but still seems higher than it should be for the bit of exertion I'm performing. (I'm thinking that's the muscle pump helping out. I do have joint hypermobility and am being referred to a geneticist about EDS by this new cardio doc.)

I have seen an allergist a couple weeks ago. He seems to be really on top of things and willing to think out of the box. Several other doctors have commented that he's "brilliant" so they're all anxious to hear his assesment of the situation. He's not well versed in POTS but at least had a working knowledge of it.

I've been wondering about seeing a neuro but I don't know any good ones around here. Our state has very few of them to begin with and they're all crazy busy and probably unlikely to sit and listen to something that's odd to them. But after my experience yesterday, I'm thinking it would be a good idea. The whole tetany experience was fairly scary. My shoulders, elbows, wrists and hands were in such flexion spasms I could not open them no matter how I tried. Thank God they let my husband stay in the room so he was able to help stretch things out for me a bit. It took several hours for that to go away though.

One of the reasons I'd like to go to Mayo or somewhere like that is to hopefully have access to a variety of providers with experience with this stuff. At this point I feel like I'm getting some encouragement from several of my regular providers but they don't know enough to be much help. Somehow vaso-vagal stuff doesn't seem bad enough to warrant a big name place like Mayo but with all the other weird stuff going on would it be appropriate? Help!!

Thanks for any input you all have!

Cheri

[erik]

I really don't think it's correct that the HR needs to stay up indefinitely, just that it not be an early blip that goes away within a minute or two (which can happen in normals). Like Julie says, you can have both POTS & NMH diagnoses and from what I recall seeing in terms of sample graphs it would show a significant HR increase sustained at least past a few minutes followed by an eventual crash.

This happens to be my pattern! Things get beri beri bad after about 10 to 15 minutes of standing still. I feel "I must lay down now", I sweat, shake, yawn, tingle, anxiety grows, all increasing until lightheadedness fades toward unconsciousness. Basically a "textbook" progression of sympathetic nervous stimulation trying harder and harder to offset whatever is failing, until the point it gives out and BP crashes suddenly. I vaguely recall reading one doc that figured that crash was out there for anyone with POTS, it's just a matter of an individual's time to reach it. That would make sense if compensatory sympathetic overdrive reaches an eventual point of neuronal norepinephrine depletion.

There is room for docs to disagree, but perhaps you can ask this cardio to reconsider his requirement for some sort of super stamina in the face of autonomic dysfunction. Doesn't seem right and I certainly don't think it is a "universal" opinion on the matter. If he is arguing for OH/OI/NMH instead of POTS, maybe there is leeway there, but I think he needs to be pressed to explain the interpretation further. Maybe take the raw results of your Tilt Table Torture to another doc or two for review if it comes down to it (thereby avoiding pushing yourself past the brink again).

I happened to be reading an article lately about Magnesium deficiency and relation to some people's assorted CFS symptoms. It happened to involve a special form of tetany (less obvious than yours in this case). It also mentions that adrenergic overstimulation depletes Mg stores. I wonder if this was involved for you?

[potsgirl]

This is exactly what happens to me - I can't pick up a reading, and when I can, I usually have a narrow pulse pressure, likes yours. Usually about a 15-point spread. My doctor says that can indicate heart issues. It really does sound like you have orthostatic hypotension, and NMH. Have you looked into that?

Yes! Get thee to the Mayo Clinic in Rochester, MN, where they have a subspeciality group that deals with dysautonomias, including POTS. The doctors are part of the neurology group, but can send you to any specialist you need to see in other areas, too. Please see the current post up about Mayo, which includes a lot of good info. Also, Dr. Low and Dr. Goodman have gotten very good references.

Cheers,

Jana

[potsgirl]

Please see post on Mayo currently on forum. I really you'd get a lot of good from heading to Mayo Clinic in Rochester, MN, where they specialize in our disorder.

Pgirl

[Chaos]

I really don't think it's correct that the HR needs to stay up indefinitely, just that it not be an early blip that goes away within a minute or two (which can happen in normals). Like Julie says, you can have both POTS & NMH diagnoses and from what I recall seeing in terms of sample graphs it would show a significant HR increase sustained at least past a few minutes followed by an eventual crash.

This happens to be my pattern! Things get beri beri bad after about 10 to 15 minutes of standing still. I feel "I must lay down now", I sweat, shake, yawn, tingle, anxiety grows, all increasing until lightheadedness fades toward unconsciousness. Basically a "textbook" progression of sympathetic nervous stimulation trying harder and harder to offset whatever is failing, until the point it gives out and BP crashes suddenly. I vaguely recall reading one doc that figured that crash was out there for anyone with POTS, it's just a matter of an individual's time to reach it. That would make sense if compensatory sympathetic overdrive reaches an eventual point of neuronal norepinephrine depletion.

I happened to be reading an article lately about Magnesium deficiency and relation to some people's assorted CFS symptoms. It happened to involve a special form of tetany (less obvious than yours in this case). It also mentions that adrenergic overstimulation depletes Mg stores. I wonder if this was involved for you?

Erik- Thanks for the info! Several points got my attention. The nurses were saying that my body compensated "A LOT" during the test. Apparently there were 5 or 6 times where they expected me to crash before I actually did (at 38 minutes). So, if you reach a point of neuronal norepinephrine depletion, would that mean you have more circulating norepinephrine in the blood even tho not in the neuronal synapses? My brain is pretty foggy today so sorry if I'm asking dumb questions here. I'm just wondering because it seemed pretty clear to me that I had major dumping of adrenaline into my system that took quite awhile to clear.

They did draw a Mg level and that came back normal although my ionized calcium was "a little low". So that may be part of the tetany but I'm wondering if "a little low" explains the severity of the tetany.

Juli- The allergist's office called this morning and seemed very surprised by how high my serum histamine came back. The nurse kept saying "what were you reacting to? Where was your rash?" I said I wasn't having any symptoms except for a mild case of flushing about 2 hours before they did the draw. Would that be significant for the MCAD type thing?

Jana- THANK YOU for your encouragement. I think I may just request an appt on my own rather than waiting for all the docs here to decide what to do. I think seeing a neuro there would be great because it really does seem like my symptoms are based more in my nervous system than in the heart itself. And the cardio here, while nice enough, is just focusing on the heart symptoms but it's many of the other symptoms that are equally disturbing to me. I've been following the recent post on Mayo with a lot of attention. Looks like we're practically neighbors. Too bad Mayo at Scottsdale doesn't have their dysautonomia clinic anymore.

Thanks so much for the encouragement and ideas. Any other input is always welcome! Well make that - almost any other input is almost always welcome.

[erik]

So, if you reach a point of neuronal norepinephrine depletion, would that mean you have more circulating norepinephrine in the blood even tho not in the neuronal synapses?

Yes, exactly! That's the theory I've heard described... the norepinephrine "spillover" out of the nerves can be the source of higher blood levels (a normal process, but on overdrive in this case) and eventually the nerves might sputter out. I sometimes get near crashes that recover and even drive my BP temporarily high, before an eventual crash out. I don't know if the nerves actually run out of supply or if the ANS eventually gives up/recalibrates, but I've heard the "depletion" theory mentioned. I'm not sure if that is "officially" part of POTS or if it implies NMH instead but I do have a POTS diagnosis from an autonomic aware cardio. I can see it as OH (especially a theoretical "delayed OH" which is not a standard concept) plus NMH too, as Jana mentions... although it's not just typical OH of course (meaning not from a simple cause).

They did draw a Mg level and that came back normal although my ionized calcium was "a little low". So that may be part of the tetany but I'm wondering if "a little low" explains the severity of the tetany.

The article I was reading happened to be about "borderline low" cases and diagnostic meaning of tetany in areas that were deprived of blood circulation. I guess the combination can induce localized tetany. The article was less about full tetany and more about potentially related ongoing fatigue & weakness issues.