Marc and Anyone Else

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Marc and Anyone Else

Post  Anna's Mom on Sun 27 Jan 2013, 8:46 pm

Anna has been dealing with some new crappy stuff. On December 6, she collapsed to the bathroom floor after taking a shower. She laid unconscious for about three minutes. She had three more episodes of being unconscious in two hours (all happened while she was laying flat). I called her G.P., and he said she had to go to our ER where she had a CT scan of her brain (no issues).

The ER doc said she had to be transferred by ambulance to the big neuro hospital in the city (said it would be AMA if we took her home). It was a direct admit to the neuroscience floor. In the morning, Anna had another episode just like the previous ones the day before. It was witnessed by a nurse.

Telemetry was initiated. An EEG just about drove her crazy, for all the pain it caused. She has pretty bad allodynia on her head, and those leads were constantly pulling her hair. Her head pain was already terrible from the fall, but the EEG made it even worse. She was given IV pain meds round the clock.

She had telemetry and the EEG for three days. No more events. She was discharged.

I felt it was the fall in the bathroom (not her norm) and then some brain "hiccups." I did not expect it to happen again. But it continues to this day.

I have personally seen over twenty of these events. They always look the same. The only difference is if she falls or not and the length of time she is unconscious. If she is standing/walking, she will crash to the floor. This has happened about five times since December 6. It is terrible to watch her fall.

But most of these events have happened when she is laying flat. She will "black out," and then she stares into space without blinking. She is not responsive at all. When she comes to, she is very scared and disorientated for about a minute. She has absolutely no warning she is about to black out. Like I said, it always looks the same...the staring part and the confusion afterward. She is "out" for one to three minutes.

Her G.P. knows about all the events I have seen. He thinks it is vasovagal syncopy. He didn't say much of anything or do anything.

Two weeks ago we saw three specialists. Her neurosurgeon who did a new brain MRI (it had been scheduled for some time). He said the same thing--vasovagal syncopy. Said to "keep an eye on it." No other suggestions.

Saw her neurologist. He completely disagreed. Said it is partial complex seizures. Prescribed Depakote. Lots of discussion as to why he thinks it is seizures.

Saw a new pain doc. He couldn't figure out (and I totally agree) why no doc has done a Holter or referred her to a cardiologist. Just to hear him say this was validation to me because it was what I was thinking for weeks! He said he cannot help her (he's considering doing Ketamine infusions), until we sort this out. Says she HAS to see a cardiologist. So that was what was needed for Anna's G.P. to make a referral to a cardiologist who tests and treats syncopy and POTS. There aren't many cardiologists in our state who specialize in this. Long wait for the appointment--February 27.

The pain doc said a bad fall could be fatal. I agree. She hasn't fallen in ten days (thank heavens), but she continues to have these episodes. Most of them when she is laying flat.

What do you think? Does the vasovagal syncopy diagnosis make sense to you? Considering this keeps happening over and over while she is laying flat?

Cheryl

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Re: Marc and Anyone Else

Post  Porsche Fan on Sun 27 Jan 2013, 11:23 pm

hi cheryl,

sorry for the bad stuff. here's my thoughts.

combined with high vagal tone and dysautonmia it can be vaso-vagal or actually cardio-vagal syncope. there are a few terms for this. fastest way to check is for her to have a holter monitor and check for a couple things: rate drop and asystole. rate drop is where your heart rate goes from say 65 beats (within 1 beat) to say 40. rate drop can happen often (and happens very often to me when lying flat). asystole is a pause between beats. anything going over 3 seconds is enough cause for a pacemaker.

make sure the cardiologist is an EP. this actually could be rather clear cut. rate drop can be tough to measure without the right device, but being hooked up to telemetry of a ECG and given a period of time it should be caught quickly if the doctor suspects it.

asystole as well can be caught. some docs might go to 3.6 before they get too fired up about pauses. some have even higher thresholds based on the patient's health. given anna's difficult case i would find it hard for them to accept anything more than 3 seconds. then again, that's just my opinion. i wouldn't base everything on a neurologist's advice. cardiovagal syncope is something a neuro can pick up on if they really know the body's fight/flight system and how their particular patient responds.

given anna's dysautonmia and overall neurologic dysfunction it can really be affecting the vagal nerve. if that get irritated it can drop heart rate an bp making you drop. neurologist could suspect micro-mesial seizures as well and prescribe something like dilantin, but whoaa that's a med conflict. EEG while having an event could prove or disprove.

as her if she feels any graying out, loss of hearing. how long does it take her to speak after one of these events? if she's not getting flow to broca's for example she'll have difficulty talking. she might be able to write for example, or even give simple hand gestures until her brain refreshes.

while she's awake. make a code system...this is what i did with my dad.

1 squeaze of the hand is i'm in trouble call the ambulance
2 squeazes means i can hear you and i'm slowly coming around.

send me an email, not pm if you can with questions. don't put up with anyone's lip. best of luck as always!
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Re: Marc and Anyone Else

Post  Anna's Mom on Mon 28 Jan 2013, 9:55 am

Thank you so much, Marc. I do think this doctor is an EP. I'll send you a private message with his profile.

Depakote seems to agree with her. She started sleeping a bit better after the first dose. She hasn't ramped up to full speed on it yet, but I do sense it is a help overall. She was already on 300 mg. Topamax a day. The neuro said Topamax should be preventing these events (if they are seizures), but then he said not everyone gets a response to every seizure med.

Thanks for educating me. I know very little about cardiac stuff. You have been really helpful.

Anna can talk immediately after "coming to." She starts crying right away, and she can talk and move. She said it always feels the same to her--when she "comes to," she feels like she is going to die. It is brief, but it scares the crap out of her and that is why she cries. Her crying/confusion only lasts about a minute. No warning whatsoever before the event, that it is going to happen. If she is talking right before an event, she will stop in mid-sentence, and I will find her staring.

Diamond did a tilt table test in 2010. Nothing happened other than profuse sweating and increased head pain.

But this is a whole new ball game now.

Cheryl

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Re: Marc and Anyone Else

Post  Porsche Fan on Mon 28 Jan 2013, 10:32 am

After reading that Cheryl, it sounds like she's having a long asystole. Happens again ER time. You'll get an immediate cardiac review. Don't spend much time with tilt tables--there's a lot of controversy with them.

I think I had 8 or so, and they all made me tired and beat up, but did not make me pass out despite having a rhythm problem. I'm surprised the neuro didn't have her admitted for the cardios to review her--just to cover his own behind.

Challenging no doubt and scary.
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Re: Marc and Anyone Else

Post  sconesail on Mon 28 Jan 2013, 9:55 pm

Hi Cheryl,

I agree with Marc- definitely get it checked out by a cardiologist. I am also surprised that no one has considered a holter monitor. There is one holter monitor that can be worn for thirty days. It would certainly show if there any major cardiac stuff.

From the description, it certainly could be POTS o r neurocardiogenic syncope. (What we think I have.) The fact that she is alert quickly sounsa lot like syncope. It is scary for everyone.

I wish I had more ideas for you. Definitely go with Marcs suggestions. I hope everything goes well and that Anna stops having these episodes.

Pain free days,
sconesail

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Re: Marc and Anyone Else

Post  Cluelesskitty on Fri 01 Feb 2013, 5:13 am

I am a total ignorant in these matters Cheryl, but I wanted to let you know I read your post and my heart goes out to you and Anna.

I can't help but wonder how many years have passed since it all started - actually, I lost the track... quite a few, I guess.
I also can't help but wonder about the incredible strength both of you have - Anna's and you, Cheryl, through this ordeal.

May God and angels keep you brave girls in their continual care - always, and as always.

Love and hugs

Risa

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Re: Marc and Anyone Else

Post  Anna's Mom on Sun 03 Feb 2013, 6:59 pm

Thanks, Risa. I don't have it in me to talk about it much. Thirteen years now. Almost half her life.

The episodes seem to have stopped. She hasn't fallen in three weeks. Maybe it is the Depakote helping, and maybe they were seizures after all. Who knows.

But Depakote makes her a zombie much of the time. In combination with the high dose of Topamax she takes, I think it is too much. I'm going to cut it back a bit for her.

Cheryl

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