I have been having these weird "espisodes" (the best word I can think of to describe them) for the last few years that I never really thought much of. There was always something I could brush them off as. But recently I mentioned them to a Lymie friend and she said it sounded like neuorcardiogenic syncope (also known as Nerually Mediated Hypotension). I see my LLMD on Monday and want to talk to her about it but I just wanted to get some more info and input on it before then so I can be informed.

My "episodes" usually occur after I've been standing for a long time (usually standing without walking around, when I'm moving a lot I'm okay), during or after a hot shower, in hot weather, or sometimes it seems like it happens when I haven't eaten or drunk enough when I should have. I basically get dizzy, lightheaded, a little nauseous, and have to sit (or squat if I can't sit) down to help relieve it enough so I can get to where I can sit or lie down until it passes completely. Does this sound like it could be NMH?

I've heard a little about the tilt table test that is used to diagnose it but I'm not totally clear on how it works. I've never actually passed out during my episodes, I guess if I didn't sit down asap I might get to that point but never have so far (knock on wood). I just want to find out if this could be it what's causing these symptoms and, if so, if it could be from Lyme.

Any info, advice, input would be appreciated.

Thanks,
Annie

I have neurocardiogenic syncope and it is exactly, I mean exactly, as you described it.

I was originally diagnosed with it by a cardiologist who performed a tilt table test before I even had a clue I might have lyme.

You seem to have a clearer picture of what is happening than I did at the time. I just had never noticed the connection between standing still and fainting or near fainting.

When I was first told about the tilt table I actually laughed about it with my hubby.

I would never have thought that I couldn't stand still for 45 minutes but apparently I had learned ways of avoiding passing out.

Without realizing it I would move around alot even when standing in lines. Like shifting from one foot to the other.

I didn't last but a couple of minutes on the tilt table. My doctor was amused!!! He is really nice and funny!

Okay, so, I was diagnosed with that but I still had lots of other symptoms and it was a long road to find out that, yes, that can be a symptom of lyme.

Here is a paragraph from Dr. B's guidelines...

"Tilt table testing is another powerful tool which, just as in CFIDS, may demonstrate neurally mediated hypotension (NMH). NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge."

I too have many of these dizzy spells- especially when getting up too fast from a sitting position.

I always have to hold on to something or bend back over for a few seconds till the world stops spinning.

Sounds like a "Lyme thing" to me.

Melanie

You check into the hospital and they hook you up to an I.V. which is just saline and they just do it as a precaution.

Then they hook you up to an ekg, blood pressure cuff and a pulse meter just to track your vitals.

You lay down on a hospital bed and they put three big velcro straps across your body.

Then they tilt the bed up to a 70 degree angle usually. So, basically, you are just standing but at a little angle.

The angle is just to make it more comfortable because standing for 45 minutes without moving could be uncomfortable on joints otherwise.

The straps are just in case you pass out.

At my hospital they have two nurses in attendence and your cardiologist. All of whom just chat with you while you stand there.

There can be some variance on timing but this is approximate:

If you can stand there for a half hour to 45 minutes without a problem they spray a drug under your tongue that speeds the process up. For the life of me I can't remember the name of the drug right now.

If you are still asymptomatic at that point you don't have neurocardiogenic syncope.

I have done the test a couple of times and the first time I only made it a few minutes. The second time after taking Toprol XL for a month, I made it through the spraying of the drug at 30 minutes and then lost blood pressure.

It is an easy test but it does get uncomfortable if you have syncope because you may feel sick to your stomach, weak and sweaty. I can tell you I was asking over and over to be put down but that part of it only lasts a minute or so. Just like you described but it is not all that bad.

In fact, as far as medical tests go it is pretty simple.

What I would ask of the cardiologist who performs it is how long they require you to stay upright if you have symptoms.

For instance, my cardiologist lays you flat when he has gotten all the info he needs and you have lost blood pressure but before you actually pass out. This isn't early on in the symptoms but it is better than passing out.

My episodes have gotten much better since treatment. They first showed up when I was herxing on babs meds.

I still have trouble with tachycardia and low blood pressure.

It isn't too surprising to have hypotension at this point. Whether or not one has Lyme, this is one of the end stages of the stress reaction.

Under the stress of disease or medication, or even emotional stress (and don't we all live there?) the adrenal glands react to give you the hormones necessary to deal with stress.

One of the reactions is to manufacture aldosterone, a hormone that holds salt in your body. Salt is necessary during stress to push nuitrients into your cells, where they can be used. In effect, your adrenals are trying to give you super-nutrition

However, as the stress continues unremitting, the adrenal glands become exhausted and abandon this and other functions. Now it is necessary to increase your salt intake to accomplish the same thing. If fluids have been inadequate, they too must be increased. Without this simple measure, the good food you put in your mouth will not get to its destination.

In fact, it would be very sensible to use your own blood pressure as a guideline for when to add salt, when to reduce it. That bogeyman of "High Blood Pressure" has us thinking we should never use extra salt. It also gives the illusion that our blood pressure is much more constant than it really is.

But our need for salt, like our need for many other nutrients, is basically a day to day affair. If we can tune it to that, there is no need for medical and pharmaceutical intervention. In my most humble opinion, this is true whether or not the condition has a fancy name.

Love,
Ellen

I was scheduled to have tilt table testing done at Johns Hopkins today, but had to postpone because I was told I needed to have a ride home, and could not get anyone today...I'm going next week.

It's good to have an idea what I'm in for.

What would I do without Lymenet?....

Annie,
I'm a Tracey Chapman fan myself.
In my unprofessional opinion, you sound like a classic case of NMH. Are you going to go forward with tilt table testing?

I've got a great article on NMH given to me by Dr. Burrascano; email me if you interested in a copy.

The sucker was in my armpit sucking for 2 days, and I pulled him out and that night my resting heart rate was 135. It was scary. Every time I got up i got a massive head rush and could feel ly heart pounding, and hear it too. My muscle twitching started that night too, my blood sugars crashed, everything went haywore! None of these symptoms have gone away since. That tick had Lyme and Babesia. I already had 100 bites before that one, years earlier, but that bite set me off on the NMH and severe neurological symptoms. I was given Doxycycline for 10 days and pronounced cured. Then I was given the pathetic whimpy Z-pack Zithromax for 7 days and then had nothing for 4 months and all hell broke lose in my body.

Anyway, once I got in to a LLMD in early December of that year, I had a Tilt Table Test (TTT) with Isuprel challenge done. This is an invasive test done by a Cardiologist. You are strapped onto a table, you arms spread out like Jesus and the rest of you tied up in velcro like Hanibal Lecter in "Silence of the Lambs." Your tilted upright, strapped in and your heart and blood pressure are monitored closely. After that, you are given Isuprel (via IV) and your heart beats at its maximum while you are lying still, kind of like Ripley in "Aliens" when the baby alien rips its way out of her chest. When your heart rate reached 180 they tilt you up vertical and I passed out in a second. My heart rate dropped from 180 to 65 in one beat, and my BP dropped from 140/70 to 55/0 and I fainted and was out cold until they stopped the test and administered the anecdote to the Isuprel. It was an exhausting experience, basically human torture. However, this hell turned out to be one of the most significant tests and discoveries of my health journey.

I had a combined neurocardiogenic and vasopressor response, a double fail. This means that the Lyme infection has inflamed my vagus nerve which is the major communicator between my heart and my brain. The inflammation caused the nerves to misfire sending the wrong messages to the brain, to stop the heart. The treatment for the symptoms is beta blockers, florinef, Zoloft, high salt diet, extra hydration and to avoid heat and stress. During this time my blood pressure during this time was typically 80/50, very low and I fainted a few times. One time I fainted in the shower and passed out and smashed my head into the stone sink, and sliced my scalp open. I crawled to the phone and called 911 and the ambulance came gain, and said my Blood pressure has fallen to 70/35, and my blood volume was dangerously low. I got 3 big bags of IV's, talked to some more clueless doctors and went on the steroids after that. Steroids are nasty, they make you huge and wreck your immune system.

Its been 3 years on Atenolol 50 mg bid, florinef .1 mg qod and Zoloft 100 mg qd for the NMH. It is controlled on these meds, and the Atenolol especially is AWESOME. If I miss a dose or take it a few hours late, my NMH flares, I cant stand up because my heart is beating so fast, and I get wicked dizzy and near fainting, then I am wiped out for 3-4 days after pushing myself too hard. The exhaustion and intolerance to standing, heat and exercise is the worst of it. I loathe the summer and hate hot weather unless I am submerged in cool water, all I do is hide in my A/C room until night time and then I am awake til 5 am and watch the sunrise, then sleep through the swelling NMH inducing heat.
Meds help, but if taken off them, I am sure I would be right back at square one! I hate Lyme Disease!!!
Get the TTT with Isuprel challenge, stay hydrated and take cool showers! Dairy products make NMH worse, as does benedryl.
Read my links on the bottom of this page of my Lyme Site, they explain the specifics of NMH.

Sorry you have these clinical symptoms, please get checked out, once on meds your quality of live should improve alot.

Good Luck!

------------------
Lyme Disease Help & Support
www.wildcondor.com

does anyone know if--in cases where POTS or NMH is directly related to a bacterial infection like lyme--when the infection is significantly reduced or erradicated, does the POTS resolve?

and has anyone here (or elsewhere) recovered from POTS after lyme treatment? if so, what treatment?

Zoey, thanks for all the great information about your experience with it and the test. I do notice that I shift my weight from leg to leg quite a bit (every few minutes or so) when I'm standing in line someplace. It's just normal for me, I guess, so I didn't connect it. And I've learned to squat down when I start feeling funny so I don't get to a fainting point.

I also have been keeping an eye on my salt intake since thinking it might be NMH and reading a little about it. I've noticed that I really don't eat much salt. I avoid fried foods like chips or fries, I don't eat much popcorn or pretzels or those kinds of things and I just don't like a lot of salt on my food. I've been trying to add more when I can and haven't had any bad episodes lately but I have been trying to avoid the situations that cause them.

Thanks again everyone. I'll let you know if I find out anything.

--Annie

Thanks,
Annie

It is the cardiologist's specialty and they should be the one to make the call.

If they feel you don't need one have them explain to you how they know what is causing it and how they know you won't pass out in a dangerous situation.

I know alot about this subject because when I first started having problems (long before anyone figured out it was lyme) I thought I was just getting a heart problem.

So, I researched the heck out of the issue.

Usually, NMH itself can't hurt you but it can be dangerous for two reasons:

1) You could pass out in a dangerous situation (driving, crossing a street or swimming) all of which could be deadly. 2) Sometimes (but not most) it can be caused by a life threatening arrythmia which would need to be corrected.

So, don't take a chance. Just get a second opinion.

Also, remember, for some people, myself included increased salt and fluid intake is not sufficient.

A particularly comprehensive overview is found in this article by the pediatrician at Johns Hopkins who treats a lot of kids with NMH/OI: http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

Also, there is a forum about NMH and other forms of OI run by the National Dysautonomia Research Foundation. NDRF's website is http://www.ndrf.org

Rebecca
(Yet another Lyme patient who also has hypotension and postural tachycardia)

But as for corticosteroid, I'm not sure if it's a Lyme thing or a me thing but I took an inhaled corticosteroid for misdiagnosed asthma about a year ago...it made me VERY very sick.

All my symptoms flared up big time and I could barely function, I was shaking, sweating, dizzy...the entire week of "testing it out".

Not sure if this would apply to the situation, but that's my experience.