Recurrent Syncope?

[SDKath]

Hmmm, if her symptoms are this severe and it is limiting her lifestyle so much, I would definitely ask for an EP consult and a consideration for a pacemaker.

Your cardiologist probably did make the right diagnosis but obviously the treatment is still not controlling her symptoms enough. She is way too young to be suffering so much. And it won't get better for a very long time if she is like most typical young ladies. Heck my blood pressure is still 95/50 and I am 38! In either case, a second opinion from an electrophysiologist wouldn't hurt.

I would also consider going to an endocrinologist. Did she get labs drawn to make sure her cortisol, renin, aldosterone and other hormones are normal? Those influence blood pressure very significantly and a deficiency may be corrected easily with medications.

Just my thoughts. But I would never be satisfied with the outcome of her treatment if she is still so severely limited in her activities.

Katherine

 

[Jennie]

About 10 years ago, I worked with a gal whose daughter had the same problem. Mom brought her to all the top specialists and best hospitals in New York City for evaluations and treatment but the problem persisted.

About three years later, the family relocated to Coral Springs, Florida and mother brought her to the Miami Heart Institute. They sent for her records from NY and were surprised that she had not been tested for epilepsy. They performed some different tests and determined that she had a rare form of epilepsy. The medication they prescribed kept the situation totally under control.

 

[pjrose]

Hmmm, if her symptoms are this severe and it is limiting her lifestyle so much, I would definitely ask for an EP consult and a consideration for a pacemaker.

I would also consider going to an endocrinologist. Did she get labs drawn to make sure her cortisol, renin, aldosterone and other hormones are normal?

Just my thoughts. But I would never be satisfied with the outcome of her treatment if she is still so severely limited in her activities.

Katherine

I do recall a blood test for cortisol, which was normal. Would the others have been done along with it?

Her dad and I are limiting her more than the cardiologist; we're just trying to keep her out of situations where she has had problems before. After the syncopal episode at the football game last week, we just didn't want to chance it again - and she didn't really have a date for the dance anyway (an on-again/off-again friend and she were going to go). We thought she was over it, but then with these recent episodes, we're being protective.

I think I'll have the family doctor ask for copies of all the stuff from the cardiologist and then we'll go over all of these suggestions.

They performed some different tests and determined that she had a rare form of epilepsy. The medication they prescribed kept the situation totally under control.

Hmmm...she did have several appointments with a neurologist and they did bunches of tests, and said they ruled out epilepsy - but this is interesting.
I'll check if there are any rare forms she might have.

However, the cardiologist does know that when her pulse goes up too high, her BP drops almost instantly - I don't know if that would be consistent with epilepsy.

I'll check with the neurologist.

 

[Patri]

It's a shame her life has to be so restricted. Can't she be around friends who stay six inches from her side? Does she feel the symptoms so she could yelp and they catch her? Is an ambulance necessary every time?
How is she doing emotionally? Tell her we are all rooting for her!

 

[SDKath]

Hmmmm, so her heart rate INCREASES as she is about to pass out? FYI that is NOT vasovagal syncope. Vasovagal syncope is when the heart inappropriately SLOWS due to a hightened vagus nerve activity (which is the problem) and therefore the HR slows and BP drops.

The endocrine tests are not run in batches. Good idea to ask for records including lab test results and see what was tested. The doctor would have to check off individual labs that they want (adrenal hormones, etc), which is why an endocrinologist is helpful. Also, some levels fluctuate at different times of the day so they should be tested at a certain time (morning usually). I would still go see an EP and an endocrinologist. Can't hurt. Get the treadmill results including the EKG tracings when you ask for the records. That seems to be the one record that holds the key to what is going on.

Katherine

 

[wa.mama]

Two important causes of syncope that are difficult to diagnose are hypoglycemia and hypokalemia. Both are transient, with rapid normalization of laboratory values, so by the time the patient reaches the ER most lab values will be normal. You mentioned seeing a cardiologist and neurologist, which are excellent places to start, but you may want to consider an endocrinologist as well. Two factors lead me to suggest this - first, your daughter is in a period of life where there are significant hormonal changes that may unmask underlying electrolyte abnormalities, and second, her symptoms occur at a time of strenuous activity where body chemistries are in rapid flux. Yes, syncope can have an unknown etiology, but in a young person who will soon be a driver I cannot stress enough that you do your best to uncover the reason.

A good family doctor can coordinate these kinds of referrals and help you interpret the specialists' findings.

 

[SDKath]

Hypokalemia low enough to cause syncope can't normalize on it's own. K

 

[pjrose]

Wow, you are all fantastic! ok, some comments below.....

Can't she be around friends who stay six inches from her side? Does she feel the symptoms so she could yelp and they catch her? Is an ambulance necessary every time?
How is she doing emotionally? Tell her we are all rooting for her!

Yes, she is around friends and others at all times - BF caught her when she fell down the stairs last week. She is never alone. She usually does NOT feel symptoms - it's like the floor opened up under her. However, we have learned the triggers - standing a long time (hence no more job as a cashier, and she sits during choir concerts), and high pulse (e.g. running). I don't know where playing her saxophone fits in, but when she was producing enough air to blow it she was getting dizzy and there were some syncopes, so no more band.

Emotionally she is frustrated and tired of the whole thing - just wants to be normal.

And no, she doesn't really need an ambulance or have to go to the ER except to ensure she didn't injure herself falling - but the school has to send her when she is unresponsive. When it's happened at home (once) and on a few occasions at school when she came around quickly, and at church (4-5 times - standing in each case), an ambulance for the ER wasn't called. Fortunately, DH and I have flexible work schedules, and have structured our work time so one of us is always available.

Hmmmm, so her heart rate INCREASES as she is about to pass out? FYI that is NOT vasovagal syncope.

The endocrine tests are not run in batches. Good idea to ask for records including lab test results and see what was tested. . . . I would still go see an EP and an endocrinologist.

My memory of the cardiologist's explanation is that her HR got so high that her system couldn't maintain it, so the BP dropped 40 pts and she collapsed. I guess I've got my syncopes mixed up - vasovagal vs neurocardio vs other.

I will ask for all the records and see the family Dr. and ask for referrals to the other Drs.

Two important causes of syncope that are difficult to diagnose are hypoglycemia and hypokalemia.

Hypokalemia low enough to cause syncope can't normalize on it's own. K

This is really interesting - In the last two ER visits, her Potassium was low - not terribly low, but the ER Dr. did make a point of telling us about it and said she should eat bananas. The cardiologist didn't seem to think it was significant.

I'll add this to my list.

Re the comment above about driving, not to worry, she will NOT be driving in the foreseeable future, and she knows it.

Thanks so much for the suggestions; I'll keep following up and reporting back, and please keep the suggestions coming!

 

[pjrose]

I found my notes on why the cardiologist didn't want to give her Beta Blockers - he said that lowers the BP, which would be counterproductive. He wants to raise it so the blood gets to the head.

She's been ok again for the last few weeks, so maybe the syncope is still under control with the current meds, and the 3 the other week were b/c of running the mile - the first one from running, and then could the other 2 have been b/c she still hadn't fully recovered from the first?

Anyway, we're still being very cautious.