Neurocardiogenic syncope? for dh

[Acadie]

Oy, anyone have experience with this? To me it's a non-diagnosis, as in, yes, you pass out, and we think your nervous system and heart are involved.

 

Dh can't really work out anymore, despite being a fit 40 yo--his heart rate drops, instead of rising, in response to exertion.

 

He's being seen by cardiologists in the one of the top-rated cardiology units in the country, and when they look at their little piece of the puzzle they say he's a-ok. Pulmonologists say the same. So why is he passing out and feeling like cr*p? I feel like we need a holistic cardiologist, someone to look at the big picture.

 

He's being evaluated for POTS and upping salt and potassium helps, but not enough. We have friends who have been diagnosed with POTS and despite cardiac rehab and drugs they're not better...I'm a little skeptical about the whole thing, and feel like there's something unnamed going on.

 

He's Lebanese--I wonder if we should look into the atypical anemias that are more common in people of Middle Eastern descent.

 

Any other ideas or experiences?

 

Thanks,

 

Amy

[Mommyof4ks]

I have no ideas on what the problem is, but have you seen an internal medicine doc? They look at the whole person, and can put the pieces of the puzzle together.

[Tap]

It sounds like the doctors know the problem, but not what is causing it???

 

7 years ago, I started getting black-out-dizzy at random times .....only for 5-15 seconds at a time. It is just like the feeling you get if you stand up too fast and get a head rush/dizzy. But it was Drop to my knees, can't stand up, black out-bad....and then I was fine again, like it never happened. :confused:

 

It would happen when I was walking in a store, talking to a neighbor, at work, driving down the road....completely random times.

 

I saw medical doctors who had no idea what was wrong.

I saw a cardiologist had an Ecg and wore a heart monitor for a month-nothing wrong.

I saw a neurologist and had an EEG and MRI-nothing wrong.

I saw a medical ear doctor who specializes in dizziness disorders-nothing wrong.

I saw a osteo doctor to rule out bones in my neck pressing on blood vessels-no skeletal issues.

 

 

The next step was my neurologist suggesting that I be admitted to a hospital, be hooked up to an EEG and be tested for a week for a rare seizure disorder. The problem didn't happen every day, only randomly so I would have to stay until I had a 'spell'.

 

 

After about 2 years and 1000s of dollars later, I figured out that it was an allergy to hazelnuts. It was total coincidence that I figured it out, and every time I eat a hazelnut, I have a spell about 10-20 minutes later and then I am fine again. :lol: What we think happens, is that my allergic reaction is one that puts fluid behind my Eustachian tube and then the fluid drains on its own. When the fluid builds up, and creates just the right amount of pressure, I get the sensation, but then the fluid drains and I am fine again. Bazaar!

[lailasmum]

I know a bit about this. There is a support charity called stars http://www.stars.org.uk/patient-info/conditions or http://www.stars-us.org

 

Here is the wikipedia page about the vasovagal response and a good page from Dysautonomia network.

 

It's the same this as vasovagal syncope, reflex anoxic seizures and is also called by a ton of other names in different parts of the world. it seems from what I have read that a lot of these conditions get listed seperately but are now acknowledged to be the same thing. Doctors don't totally seem to know the complete picture.

 

Dehydration and not eating regularly makes the symptoms worse.

 

The world specialist in this condition is a guy named Dr Blair Grubb at the University of Toledo Medical centre. He works with Stars the support charity and if you phone/email stars they will be able to help you I am sure.

 

The kind of doctor you may need to see is and electrocardiologist or Cardiac Electrophysiologist. There is a find a specialist page on the STARS website here.

 

It seems to be one of the things you have to learn to live with. Some people get pace makers. I know many who have tried medication but never really hear great things about the medication, it seems to not control the problem and cause side effects.

Edited September 27, 2012 by lailasmum

[Acadie]

I love this board. :)

 

Maybe it's time to go back to his primary care or see another internal med person. That's where he started, and his primary is actually very good, but we're lost in specialist la-la land.

 

Thanks, Tap, for mentioning allergies--he does have allergies, asthma and food intolerance, so I've wondered if it could be something environmental that we haven't identified yet.

 

Lailasmum, thanks so much for that great link and I will definitely check out the doc in Toledo, which actually isn't that far for us.

 

Amy

[LNC]

Oy, anyone have experience with this? To me it's a non-diagnosis, as in, yes, you pass out, and we think your nervous system and heart are involved.

 

Dh can't really work out anymore, despite being a fit 40 yo--his heart rate drops, instead of rising, in response to exertion.

 

He's being seen by cardiologists in the one of the top-rated cardiology units in the country, and when they look at their little piece of the puzzle they say he's a-ok. Pulmonologists say the same. So why is he passing out and feeling like cr*p? I feel like we need a holistic cardiologist, someone to look at the big picture.

 

He's being evaluated for POTS and upping salt and potassium helps, but not enough. We have friends who have been diagnosed with POTS and despite cardiac rehab and drugs they're not better...I'm a little skeptical about the whole thing, and feel like there's something unnamed going on.

 

He's Lebanese--I wonder if we should look into the atypical anemias that are more common in people of Middle Eastern descent.

 

Any other ideas or experiences?

 

Thanks,

 

Amy

 

Has he seen an cardiac electrophysiologist? Had a tilt table exam workup? What happened? Is he on meds for this besides upping salt and potassium? Florinef? Toprol?

 

Definately not diagnoses to be skeptical of! I hope you get more help soon.