Weird Syncope Episode

[sandymbme]

So I have been having syncope episodes, or near-syncope episode just about every time I stand up lately. My blood pressure has been running really low (80/60 at the doc's office yesterday seated, and we opted not to do standing so I wouldn't risk falling on their hard linoleum floors!) At about 5:30am this morning, I got up to grab some coffee, to try give my BP a bump up, and when I got up from a seated/reclining position in bed, everything started going black, lost control of my extremities, saw shooting stars, all my normal stuff. But in a strange new twist, I hovered on the edge of conscious and unconscious, my body convulsing, for a few seconds. (no more than 10-15 seconds, this didn't last very long) I could feel my arms flopping around, but had no control, and was desperate trying to move because I was next to my bed, facing one of the posts on the bed frame, and was terrified I was going to get nailed in the face with the post. (I managed to avoid giving myself a black eye, so yay for that!)

So, does this (the convulsions) happen to anyone else? It was not quite a full syncope episode, I didn't quite pass out completely, but came about as close as you can. Should I be concerned that it may have been a seizure? I have had seizure activity pop up on an eeg before, but that was written off as being the result of being on narcotics, as the test was given while I was inpatient at the hospital for severe migraines. To my knowledge, I have never had a seizure. But this kind of freaked me out!

Sandy

[lieze]

I would report it to your doctor and try not to worry.

I'm sorry that happened, glad you're okay.

[juliegee]

Sorry, too- Sandy. Scary. I had an episode of syncope once & when I awoke I was convulsing. I've read about it in the literature. Definitely tell your doc.

Hugs-

Julie

[pat57]

I have convulsive syncope. I have partial memories just like you describe. When there are people around

that is when I find out they are partial. In other words I think I was conscious but I was out and

obviously don't remember that part!

I also have to tell you, you probably just think it was 10 or 15 seconds.

I am not clear on if you collapsed to the floor.

did you?

[Noreen]

This article might be of interest to you

Differentiation of convulsive syncope from epilepsy with an implantable loop recorder

In the meantime, I am sure your doc is recommending you take your Midodrine with plenty of water prior to getting out of bed.

Hope you stay well,

noreen

[sandymbme]

Thanks for all the replies. I was just exhausted today, slept most of the day. I did not actually hit the floor, or at least I don't think I did. I clearly remember panicking because my face was in line with the post of my bed and I was about to fall into it face-first. But I didn't actually hit it, and I don't remember getting off the floor. I have been having way more syncope episodes than ever before, and my BP has just been lousy. Even immediately after doing IV fluids this morning after I posted, it was still only 90/60. And I do always take the midodrine with plenty of water. I have been skipping the atenelol to try to bump up my BP, but that doesn't seem to be helping either. I will definitely call the doc tomorrow. I slept through office hours today so I missed that one! And I actually have an implanted heart monitor, the article looks interesting, will down load and see if anything funny turned up....

Sandy

[pat57]

I hovered on the edge of conscious and unconscious, my body convulsing, for a few seconds. (no more than 10-15 seconds, this didn't last very long)

I take back what I said then and I suppose it is just as your reported it. A quick drop in HR/BP can cause convulsing without going out.

As I understand it this is a big and fast drop, but dropping to a point were consciousness can be maintained.

NOT A DR.!

[mwise]

Hi Sandy,

My syncope episodes are similar to what your experiencing. I needed some medications adjusted & luckily haven't had any lately only slight palpitations. You taking IV hydration, Midodrine and BP still low means something appears to be not working. How long have you been on 10mg of Midodrine 3xday? Maybe a bump up would help or adding Mestinon or Florinef? How often do you take IV hydration & how much 1,000 cc? Just some thoughts. Hope you feel better soon.

[potsgirl]

Hola Sandy,

My syncope episodes are very similar to yours. I am definitely a fainter, but have also had epileptic like experiences when I first get up where I don't actually pass out. My doctor told me that it's my BP dropping so low, obviously. Sometimes when I stand up, my BP will fall to mid to low 70s with a diastolic of about a 10-point difference (75/65), and of course my HR skyrockets. Sometimes I also have "drops", when my legs just give out suddenly and I fall to the floor but don't pass out. Do you have these as well?

Are you eating a lot of salt/drinking a lot of water? Is the head of your bed raised? Are you taking the time to sloooowly get out of bed or stand up? I think I'd talk to my doctor about trying to work with your meds to bring your BP up.

Good luck, and you are welcome to PM me if you'd like...

Cheers,

Jana

[sandymbme]

I spoke with Dr. Grubb's office this afternoon. Of course, the person who normally reads the reports from the implanted loop recorder is on vacation! But the nurse told me they were having the printout faxed over by Medtronic, and that Dr. Grubb would look very carefully at it. They want to add another SSRI, which I am a bit leery of, just because I had liver complications with cymbalta. The nurse also wants me to come in and be seen, and wonder of wonders, they actually managed to find an appointment time in April!

To respond to some of the questions, I have been on the 10mg dose 3x daily of midodrine for about a year, give or take. I have been on florinef in the past, and would take it is there were no other option, but it triggers fierce migraines for me, it's not a med I tolerate well. I get 1 liter of regular saline via my port/cath 3x a week, although lately we have been doing it daily. Not only did I have the weird, convulsive syncope, but I am having FAR more syncopes than I ever used to. I have at the very least, near-syncopal episodes just about every time I stand, regardless of how carefully or slowly I try to move. Whereas just 6 months ago, I had a syncopal episode maybe twice a month. So it's a very big change. I don't know if my newly diagnosed celiac disease is making things worse, I have read that celiac can interfere with the absorption of fluids and bile salts. I will definitely have a lot of questions for the good doctor when I see him!

Thank you all so much for the concern and the comments!

Sandy

[mwise]

Hi Sandy,

Glad you will have follow-up with Dr. Grubb. Taking in almost a liter of IV fluid a day, your bp should be going up. I think you may be right about the absorption of fluid problems now that you have been diagnosed with Celiac disease. Was it a GI doctor that made the diagnosis? Did they recommend or refer you to a dietician? I would suggest to follow-up with a GI doctor and a dietician. It made the difference for me with follow-up by both to finding me the right dietary/caloric intake to help elleviate my syncope and control my Gastroparesis symptoms.

Good luck and keep us updated on the outcome.