Recurrent Syncope?

[pjrose]

DD (16, tall, and thin) has experienced about two dozen syncopal episodes in the last year. (Syncope is basically fainting.)

It started last Thanksgiving when she was playing her tenor sax in the Macy's Parade (!) and fainted after marching about 30 blocks; she was overdresssed and dehydrated, and the ER said lots of parade participants were brought in. Then for the next four months she fainted over 20 times - at school, in band, choir, gym, church (standing), etc. Most of the syncopes were related to either physical exertion or standing too long, but some didn't have an explanation. Most resulted in an ambulance trip to the ER (we now know many of the EMTs, ER nurses, and doctors). She missed about 2 months of school, but caught up with the aid of tutors and very understanding teachers.

After lots of tests, many appts with a cardiologist and neurologist, and meds to raise her BP (which was dropping suddenly, hence the fainting), we thought it was under control. No syncopes for six months, but then three in the last week - one in gym when they were trying to run a mile (she was jogging/walking), then one when going up stairs in school, then one at the football game (standing and not well hydrated).

The cardiologist and neurologist have ruled out all the scary stuff (heart defects, serious neurological defects), and the impression we're getting is that she needs to drink tons of fluids, take her meds, avoid standing for too long and stress, and that she'll likely outgrow it. Meanwhile, it's very difficult for her and us - every time the phone rings we think it's the school telling us the ambulance has been called - and she's "the girl who faints".

Do any TUGGERs have experience with this?

 

[Patri]

This happened once to my son in middle school. He was in band, percussion, so stood a lot, and down he went. He wore a holter monitor for a couple days. I think his heart was okay but it was that drop in blood pressure that got him. I recall he took sodium pills for awhile.
This was over 5 years ago so I can't remember more details, but they said it was not unusual and kids outgrow it. However, your daughter's case is extreme.
Are you sure she is eating enough, not anorexic or anything?

 

[pjrose]

Yes, she eats all the time, lots of veggies, not anorexic. She's slender, but not skinny.

She wore the Holter monitor for about 3 weeks, and also an ambulatory EEG for 24 hours - both caught some of the syncopes, and both showed no abnormalities but the rapid drop in BP.

Along with 2 meds to get her blood going or raise the BP, she takes salt pills and is supposed to drink 80 oz/day. The latter is difficult for her, and we are constantly reminding her to drink.

 

[swift]

Did they do a Tilt Test? http://www.londoncardiac.ca/pages/vvs.htm

 

[camachinist]

Some common contributors....

Diabetes, dehydration, anemia- these can result in hypovolemia and often orthostatic or vasovagal syncope.

I had episodes when younger while working manual labor in high heat with inadequate hydration. My mom had episodes after developing dementia when taking beta blockers for hypertension and rising too quickly. Combination of low blood pressure and changes in norandrenergic function due to the disease process and use of cholinergic agonists apparently were contributory.

Is your daughter going through a growth spurt right now?

Pat

 

[SDKath]

What meds is she on and what are the doses? Katherine

 

[pjrose]

Did they do a Tilt Test? http://www.londoncardiac.ca/pages/vvs.htm

Actually no - the cardiologist said there wasn't any point, since he already knew what would happen - she'd be in an uncomfortable upright position, and she'd faint. She did fail her stress test in his office while connected to all kinds of monitors - he and his two techs caught her as she fell on the treadmill, and he saw her BP go down so was able to confirm what happened. They did an immediate echocardiogram and didn't see any abnormalities. (Fortunately we have good medical insurance)

Some common contributors....

Diabetes, dehydration, anemia- these can result in hypovolemia and often orthostatic or vasovagal syncope.

I had episodes when younger while working manual labor in high heat with inadequate hydration. My mom had episodes after developing dementia when taking beta blockers for hypertension and rising too quickly. Combination of low blood pressure and changes in norandrenergic function due to the disease process and use of cholinergic agonists apparently were contributory.

Is your daughter going through a growth spurt right now?

Pat

She is tall, but I'm not sure if she still getting taller or if it just seems that way. The "tall thin female" theory (blood has a harder time getting to the brain, especially when the person is standing still for awhile) fits some of her syncopes, but not others. She is not anemic or diabetic.

 

[Emily]

You live on the east coast (endemic for LD) and all the heart tests are normal. My guess is heart block due to lyme disease. Has she been tested for lyme disease?

 

[pjrose]

What meds is she on and what are the doses? Katherine

Florinef .2mg daily
Midodrine 10 mg 3x/day
salt tabs 3x/day

You live on the east coast (endemic for LD) and all the heart tests are normal. My guess is heart block due to lyme disease. Has she been tested for lyme disease?

Nope, I remember asking about it, but we didn't do that. I just called the Dr's office to ask about that. Thanks.

 

[Blondie]

My son had this and just grew out of it, but it was never as bad as what you are describing. He had the sleep deprived EEG, Holter, etc. Nothing abnormal except that he had heart "blocks" which were, I think, skipped beats or something, while he was sleeping.

 

[Patri]

Did they do a Tilt Test? http://www.londoncardiac.ca/pages/vvs.htm

Oh my, that reminds me that my son had that. He passed out from it.

 

[mterra]

I have a website I can get onto at work. I can email you info from it. I was thinking seizures, and that is one of the causes. The seizure does not need to be the "usual" appearing seizure. Other testing such as EEG's would be normal. I can email to you on this site or another email. Let me know. I will continue looking to see if I can come up with anything else. If you saw a neurologist they may have already ruled this out but...
Mary

 

[mterra]

Never mind, this was much easier:

Seizures — Seizures are the probable cause in 5 to 15 percent of apparent syncopal episodes [3,13,19,34]. They can mimic syncope, especially when the seizure is atypical and not associated with tonic-clonic movements, the seizure is not observed, or a complete history cannot be obtained.

Another potentially confounding factor is that loss of cerebral blood flow due to any cause of syncope can result in a seizure-like state. As an example, the initiation of a rapid VT may be associated with impaired cerebral blood flow, followed within seconds by tonic-clonic movements. This apparent seizure activity is associated with brain wave slowing, not epileptiform spikes, on the EEG.

One distinguishing feature is that patients with seizures rarely have an abrupt and complete recovery. Instead, the postictal state is characterized by a slow and complete recovery. Another important clue, if present, is evidence of soft tissue injury at multiple sites due to tonic-clonic movements during the seizure. (See "Evaluation of the patient with syncope", section on Distinction of syncope from seizures).

This is from Up-to Date
Mary

 

[mterra]

More

SYNCOPE OF UNKNOWN ORIGIN — Patients in whom an etiology for the symptoms of syncope is not found after an initial evaluation are categorized as having syncope of unknown origin. This definition, however, is strongly dependent upon the investigators and the modalities used for diagnosis. Thus, a patient with an unknown etiology in one study may be recognized as having a clear diagnosis in another based upon different diagnostic methods and analysis. As an example, a patient in whom electrophysiologic testing is performed for the analysis of syncope may be considered to have syncope of unknown origin if the study is negative, even though an arrhythmic cause for syncope was suspected. The prognosis would be considered to be excellent in this setting if other diagnostic studies were also negative. The same patient, however, might have a significantly different diagnosis and a poorer prognosis if one or more episodes of asymptomatic nonsustained VT were noted on an ambulatory monitor.

Such differences in the degree of evaluation complicates the interpretation of different reports in the literature. Nevertheless, in both the Framingham cohort and the pooled analysis of five cohort studies syncope of unknown origin accounted for approximately one-third of cases (show table 2 and show table 3) [3,13].

 

[pjrose]

More

SYNCOPE OF UNKNOWN ORIGIN — Patients in whom an etiology for the symptoms of syncope is not found after an initial evaluation are categorized as having syncope of unknown origin. This definition, however, is strongly dependent upon the investigators and the modalities used for diagnosis. Thus, a patient with an unknown etiology in one study may be recognized as having a clear diagnosis in another based upon different diagnostic methods and analysis.

Mterra - thanks! This is the biggie - the cardiologist looks for his stuff, the neurologist for his, the ER doctors just want to be sure she didn't crack her head open - and DD, DH, and I are at our wits' end! We really need a diagnostic team, or somebody to coordinate it all.

Teenagers have enough problems without something like this - she should be known as "the cute girl who plays in the band," or something equally positive, not "the girl who faints all the time".

The seizure information you posted is also very interesting. Can you post or PM me the sources?

Thanks! PJ

 

[neash]

I'm sorry your daughter is going through this.
I have an aunt who had similar problems in her late teens. She was misdiagnosed and treated for seizures when indeed what she did have was hypoglycemia. Her blood sugar was not always irregular, but could get erratic at strange times without cause. Have you looked into that?

 

[pjrose]

I'm sorry your daughter is going through this.
I have an aunt who had similar problems in her late teens. She was misdiagnosed and treated for seizures when indeed what she did have was hypoglycemia. Her blood sugar was not always irregular, but could get erratic at strange times without cause. Have you looked into that?

She's had lots of blood tests - every ER visit (15?) plus others looking for specific things. Her blood sugar has always been good.

I think last Spring they did the blood sugar tests that are repeated over several hours, but this is another I'll double-check with the Dr.

thanks for the suggestion!

 

[CSB]

This is a real long shot. My mother fainted when she was a teenager because she had scoliosis (curviture of the spine).

Maybe something to check out.

 

[SDKath]

Florinef .2mg daily
Midodrine 10 mg 3x/day
salt tabs 3x/day
.

Sounds like she is on the right meds. Make sure the general cardiologist also does a referral to an electrophysiologist because they are the folks best trained to deal with recurrent syncope that doesn't respond to these medications.

I often see patients also on beta blockers (which prevent that syncopal response to exercise). She may not be able to tolerate it well with her low BPs, but it works well even at small doses.

Ask for an EP consult for sure -- they will do the Tilt Table Test (on meds to see if they need to adjust it).

Katherine

 

[pjrose]

This is a real long shot. My mother fainted when she was a teenager because she had scoliosis (curviture of the spine).

Maybe something to check out.

Interesting - I don't think this fits, but I'll add it to the list!

Sounds like she is on the right meds. Make sure the general cardiologist also does a referral to an electrophysiologist because they are the folks best trained to deal with recurrent syncope that doesn't respond to these medications.

I often see patients also on beta blockers (which prevent that syncopal response to exercise). She may not be able to tolerate it well with her low BPs, but it works well even at small doses.

Ask for an EP consult for sure -- they will do the Tilt Table Test (on meds to see if they need to adjust it).

Katherine

Yes, I will do that. We see the Cardiologist tomorrow. Thanks!

 

[mterra]

Keep us updated on what the cardiologist says.

Mary

 

[pjrose]

Just got back from the cardiologist - basically, keep up with the same meds, salt, and fluids. None of the tests have shown any heart irregularities, nor did any of the neurologist's tests show any irregularities. Her syncope on the treadmill during the stress test was a classic vasovagal syncope. The recent one running the mile is not surprising, nor is the one going up the stairs at school. He will refer to an EP if we want, though he didn't seem to think one would find anything, since he already knows what happens b/c he was able to reproduce her syncope in his office during the stress test.

Walking, weights, and other exercise (not running) would be good to build up strength. Come back in 4 months.

 

[mterra]

Your daughter may be in the percent of those who have syncopal episodes of unknown origin. Sometimes it's difficult when we don't have an answer.[B In the meantime you are continuing with meds and lifestyle they prescribed. I hope she does well with all of this and "outgrows" it. In the meantime, can be frustrating. How is your daughter dealing with all of this?

 

[SDKath]

Just got back from the cardiologist - basically, keep up with the same meds, salt, and fluids. None of the tests have shown any heart irregularities, nor did any of the neurologist's tests show any irregularities. Her syncope on the treadmill during the stress test was a classic vasovagal syncope. The recent one running the mile is not surprising, nor is the one going up the stairs at school. He will refer to an EP if we want, though he didn't seem to think one would find anything, since he already knows what happens b/c he was able to reproduce her syncope in his office during the stress test.

Walking, weights, and other exercise (not running) would be good to build up strength. Come back in 4 months.

So why no beta blockers? That's a typical treatment of vasovagal syncope even before the drugs she is on. I bet her BP is low since she is young but even a very small dose (that doesn't change the bloodpressure) would probably do her good.

Sorry to hear about her troubles. It is a problem for her if they continue to occur when she is taking all the meds AND doing all the right things (salt, hydration...). Rarely people will benefit from pacers if their symptoms are resistant to medications.

Katherine

 

[pjrose]

In the meantime, can be frustrating. How is your daughter dealing with all of this?

OK, I think - it was really bad last winter/spring when she had about two dozen syncopal episodes and we finally had to keep her at home. There are no kids in our neighborhood, so she was very bored. She's back in school this Fall, but we are keeping her away from potential stressors as much as we can - this is homecoming weekend, but no pep rally, no game, and no dance for her. We're doing shopping, movies, and theatre tix instead.

So why no beta blockers? That's a typical treatment of vasovagal syncope even before the drugs she is on. I bet her BP is low since she is young but even a very small dose (that doesn't change the bloodpressure) would probably do her good.

I asked about beta blockers and the Dr. nixed it - I don't remember why but I'll look for my notes.