DD's syncopes

[pjrose]

Years ago when DD first started having syncopal episodes (fainting) I posted here, and got lots of helpful responses.

Now her syncopes have been going on for four years, and she just had number 49 today. During that time she has gone without for 9 months, 8 months, and 6 months, so those 49 have been crammed into about two years. And no, we really can't figure out how those syncope-free periods differed other than that they tended to include summer-breaks when she was sitting at home doing nothing.

Her cardiologist really can't figure out what's wrong. He has documented her BP dropping 40 points almost instantly when she had a syncopal episode on a stress test in his office. She's worn a portable EKG and a portable EEG to school; both documented syncopes and neither showed anything wrong. She's had a complete neurological work-up too.

She knows the triggers to avoid - crowds, overheating, dehydration, over-exertion, standing to long - and she takes her meds (midodrine and florinef). She says she's staying hydrated (60-80 oz/day....but that's hard and she's no longer living at home so I'm not there to bug her).

Nonetheless, a few days ago she had one while bike riding (new bike that she thought would help her get a bit of exercise and be able to get to a potential job close-by) - ended up on her back in the middle of the street. Today she went outside to get the mail, and ditto, on her back in the street. Before that there were a few during EMT classes (too much exertion?) so she had to quit that. It's happened while shopping, during Homecoming, a few times actually slipping off her chair during classes or lunch. There is rarely any warning.

I've read of some studies done where the participants had had 6 or 8 episodes.....this is 49 episodes, so she may be an extreme case (?). I want her to find a new cardiologist near her BF's house and get another complete work-up....maybe s/he can find something, or tweak the meds, or ???

It's frustrating as heck to her. She can't drive b/c of the possibility of passing out at the wheel, she may not be able to work (certainly not as a cashier - she tried that and went boom b/c of too much standing).

We're thinking she may need to apply for disability, but darn it, she wants to work, and she'd be bored as heck at home all the time.

Would appreciate any words of wisdom or experience, and, of course, TUG HUGS!

 

[Dori]

The only thing I can offer is hugs. I hope that someone can find out what is going on and can recommend a cure, or at least a successful treatment. Your poor daughter must be so frustrated by it all. She sounds like a very strong young woman.

Dori

 

[heathpack]

What kind of syncope has she been diagnosed with? Vasovagal?

She should seek a 2nd opinion, I think. Maybe she just is a tough case, but her symptoms are disabling enough that it makes sense to be sure she has not been inaccurately diagnosed or treated.

I would try to fine someone with a particular interest or expertise in her condition, even if this doctor is far away. That type of individual will likely be very enthusiastic about trying to dx/tx her, whereas if she sees someone without an interest in this disease, he/she may think, "oh d*mn, another vasovagal syncope case, shoot me now."

Good luck.

H

Years ago when DD first started having syncopal episodes (fainting) I posted here, and got lots of helpful responses.

Now her syncopes have been going on for four years, and she just had number 49 today. During that time she has gone without for 9 months, 8 months, and 6 months, so those 49 have been crammed into about two years. And no, we really can't figure out how those syncope-free periods differed other than that they tended to include summer-breaks when she was sitting at home doing nothing.

Her cardiologist really can't figure out what's wrong. He has documented her BP dropping 40 points almost instantly when she had a syncopal episode on a stress test in his office. She's worn a portable EKG and a portable EEG to school; both documented syncopes and neither showed anything wrong. She's had a complete neurological work-up too.

She knows the triggers to avoid - crowds, overheating, dehydration, over-exertion, standing to long - and she takes her meds (midodrine and florinef). She says she's staying hydrated (60-80 oz/day....but that's hard and she's no longer living at home so I'm not there to bug her).

Nonetheless, a few days ago she had one while bike riding (new bike that she thought would help her get a bit of exercise and be able to get to a potential job close-by) - ended up on her back in the middle of the street. Today she went outside to get the mail, and ditto, on her back in the street. Before that there were a few during EMT classes (too much exertion?) so she had to quit that. It's happened while shopping, during Homecoming, a few times actually slipping off her chair during classes or lunch. There is rarely any warning.

I've read of some studies done where the participants had had 6 or 8 episodes.....this is 49 episodes, so she may be an extreme case (?). I want her to find a new cardiologist near her BF's house and get another complete work-up....maybe s/he can find something, or tweak the meds, or ???

It's frustrating as heck to her. She can't drive b/c of the possibility of passing out at the wheel, she may not be able to work (certainly not as a cashier - she tried that and went boom b/c of too much standing).

We're thinking she may need to apply for disability, but darn it, she wants to work, and she'd be bored as heck at home all the time.

Would appreciate any words of wisdom or experience, and, of course, TUG HUGS!

 

[pjrose]

What kind of syncope has she been diagnosed with? Vasovagal?

She should seek a 2nd opinion, I think. Maybe she just is a tough case, but her symptoms are disabling enough that it makes sense to be sure she has not been inaccurately diagnosed or treated.

I would try to fine someone with a particular interest or expertise in her condition, even if this doctor is far away. That type of individual will likely be very enthusiastic about trying to dx/tx her, whereas if she sees someone without an interest in this disease, he/she may think, "oh d*mn, another vasovagal syncope case, shoot me now."

Good luck.

H

It's been variously diagnosed as vasovagal, neurocardiogenic, and orthostatic hypotension. Her cardiologist says it doesn't much matter, as the treatment is the same either way. They found nothing wrong with any of the tests they did - and I don't really know what they were, but definitely included an echocardiogram and multiple EKGs, and ???. Ditto the neurologist, who found nothing neurologically wrong. About the only thing that has been definitely documented is a sharp drop in BP before falling as well as when moving from sitting to standing. We took her to a diagnostic center at a Peds hospital, but didn't get too far there either - he tweaked the meds and suggested support hose (which lasted about 20 minutes before she ripped them off).

Researchers in Tennessee and Ohio and one in either Ct or NY have been suggested; I should call them, though DD is now so enchanted with her BF that getting her to leave him for a few days or a week will be hard. He has more sense than she, so might be able to talk her into it. I think if the research projects I've read have looked at those with histories of 4 or 6, that a history of 49 would be fascinating to the specialists.

Plus she ALWAYS falls backwards, ALWAYS in the same position in terms of head/neck/arms, and has had several concussions and probably too many CT scans of the head and neck. The scariest part is that she has been found lying in the street at least four times.

 

[dougp26364]

I know this may seem odd but, has anyone been looking at her blood sugar or tracking her eating habits? Sometimes low blood sugar can trigger a sycopal episode. It would be a long shot but, maybe something to rule out.

This used to happen to me when I was younger. Two things were found to cause the issue. One was orthostatic hypotension, which they appear to be treating. The other was low blood sugar or hypoglycemia.

I haven't had issues with orthostatic hypotension but, since I've been watching calorie consumption, exercising and losing weight, I'm begining to feel the issues associtiated with orthostatic hypotension. I tend to eat low calorie snacks like string cheese at frequent intervals to keep my blood sugars reasonably steady.

 

[pjrose]

I'm sure they must have checked hypoglycemia.....I do know she is often/always hungry, and at times is dizzy if she doesn't eat. She keeps snacks with her at all times for that. But I'll double check and be SURE they checked it. After all, the cardio will check the heart, the neuro the brain, and neither may look at the other stuff.

 

[heathpack]

I don't know that much about these diseases, but I believe vasovagal and neuocardiogenic are synonyms. Orthostatic hypotension is pathophysiologically different as I understand it. Treatment may be the same, but distinguishing these disorders might provide important insight as to understanding cause.

When you say all thoses tests have been done and shown nothing, that is not quite how a doctor would look at it. Her tests have ruled out epilepsy, cardiac arrhythmias, hypoglycemia, etc as the cause of her syncope. That means the cause of her syncope is an inability to regulate her blood pressure in certain situations. Normally blood pressure is very tightly controlled by the autonomic nervous system. Thus, her basic problem lies with the function of her autonomic nervous system.

It may be possible for a specialist with an interest in her condition to provide a formal review of her case without seeing her- he/she can't treat without a valid doctor-patient relationship but can maybe render an opinion as to diagnosis, give general treatment recommendations, or let you know if it is worth a long trip for an appointment. Years ago, I did something like this for a relative with cancer. He was being treated at NYU Medical Center, I carried all his data- MRI, histopath slides of biopsy, med records- to Mass General, who for a fee reviewed all of his data and rendered an opinion as to diagnosis and gave treatment recommendations.

My vote is for a second, very expert, opinion.

H

 

[pjrose]

My understanding is that though vasovagal and neurocardiogenic are often used as synonyms, one has to do more specifically with the vascular system, and the other with a dis-synchronicity between the neurological and cardiovascular systems (?) Orthostatic deals more specifically with the blood pooling at the feet during standing, so it's not getting to the head and the person faints. She seems to fit both vasovagal and orthostatic (?)

You're right, they've ruled out a lot, but there's more to look at. Also my understanding is that the mechanism of some of these issues isn't fully understood (?). My rough understanding of what I was told is that her BP is relatively low (hence meds that I think increase it?), if her HR goes up (physical or other stress), the BP is supposed to go up along with it, and hers does to a point, then the vascular system can't handle it and collapses, the blood doesn't make it to the head, so the body goes horizontal to get blood to the head. With warning, which she has had maybe 2-3 times, she can sit or lie down immediately, wherever she is, and prevent a syncope. But usually there's no warning. Increasing the blood volume with plenty of fluids (this may be her weak point) is crucial, and salt tabs to hold in the blood (she was using them for awhile but discontinued), and the 2 meds that do something to either up the BP or help with vaso-constriction (I may be messing up the latter).

Some of the doctors have been testing pacemakers and claiming great success, others saying it's somewhat successful but not as promising as thought.

I like the suggestion of sending her info to a specialist for a long-distance consult, then seeing what s/he suggests for a follow up.

PJ

 

[SDKath]

Wow, that's aweful! Her cardiologist is wrong, the treatment is not the same! OY. Make sure she's had a Tilt Table Test. If she has, next step is to put in an implantable mini-recorder (called a Reveal Monitor). It stays in up to 2 years and can document the episodes the most accurately. Is she on low dose beta blockers (if they believe it's neurocardiogenic)? There are also some meds to help increase BP (proamatine for example) that is often used in recurrent, hard to diagnose syncope.

She needs a 2nd opinion. Have her go see and Electrophysiologist for this, instead of a general cardiologist. PM me if you need more info...

Katherine

 

[pjrose]

She did not have a tilt-table test. I still remember the cardiologist saying that he wasn't "a fan of that, it's uncomfortable and we already know what'll happen - she'll faint." So he saw no point in doing it. That made sense to me.....

I have never heard of the reveal monitor or low-dose beta blockers or proamatine.
What's an electrophysiologist?

I'll email as my PMs are full.....

PJ

 

[natasha5687]

The cause could be Endocrine related and it's certainly worth a look. Someone mentioned low blood sugar (hypoglycemia) which is an endocrine disorder. Because of the frequency of your DD episodes and lack of any other substantial findings I would have her see the Endocrinologist. You should easily be able to find one in the area.

 

[Jestjoan]

Doctor recs -different membership levels at this site

http://www.castleconnolly.com/

I have never used this service.

 

[Zac495]

I had the tilt table test and failed. I have a pacemaker and I'm so much better. I sure hope they figure it out.

 

[pjrose]

Ellen,
How common were your syncopes? What else did they try before the pacemaker?

 

[MULTIZ321]

PJ,

I haven't seen this mentioned yet, and since a definitive diagnosis hasn't been made, I think your daughter should consider having a vestibular work up
to include VNG (electronystagmography),Rotary chair testing , Vestibular evoked myogenic potential study, and computerized dynamic platform posturography.

This testing involves sophisticated equipment and usually can be done in a ENT Department in a University Hospital setting.


Richard

 

[SDKath]

PJ,

I haven't seen this mentioned yet, and since a definitive diagnosis hasn't been made, I think your daughter should consider having a vestibular work up
to include VNG (electronystagmography),Rotary chair testing , Vestibular evoked myogenic potential study, and computerized dynamic platform posturography.

This testing involves sophisticated equipment and usually can be done in a ENT Department in a University Hospital setting.


Richard

Although these usually cause vertigo and room spinning, not drop attacks.

 

[pjrose]

PJ,

I haven't seen this mentioned yet, and since a definitive diagnosis hasn't been made, I think your daughter should consider having a vestibular work up. . . .

Although these usually cause vertigo and room spinning, not drop attacks.

Hmmm....interesting suggestion. She'll be seeing a new cardiologist soon I hope - she's waiting for her new GP to make the appointment and I don't know how long that'll take. She does get kind of dizzy, but not to the extent mentioned by SDKath.

Her new GP told her that she has POTS and prescribed some meds that she had a bad reaction to.....I'm not happy with that at all. Her experiences do not fit POTS as well as they fit vaso vagal syncope, and I think the cardiologist should be making the diagnosis and prescribing, not the GP she's seen once or twice for mono.
(Her syncopes have included many instances that were not sitting --> standing, and she does not have tachycardia.)