uncetain about Dx...NCS or something else?

[Jenn0030]

I hope someone might be able to turn me in the right direction as I feel lost at the moment.

My brief history: (I am a 33 F)

Diagnosed my complex partial epilepsy at 16 after "passing out" sitting down (I can remember a couple previous episodes of passing out, one was while playing a video game and one was during a medical procedure.) Prior to passing out I had a buzzing sound in my ears, same sound that I hear to this day when I pass out. My husband saw 2 of my episodes recently one started when I was in a shower, but I was able to get out in time to pass out.  I guess I have a convulsive type of syncope (or whatever we are calling it today) it involves muscle tensing.  I have gone thru almost all (I think 9 different) anti-convulsant medications per neuro decision that my control was "suboptimal".  

I had a MI at 28 (blood clotting disorder and early MI runs in the family).  I am height / weight appropriate

I am with a relatively new neuro, less than 6 months.  Dumped my last one because she always let her nurse pract. see me.   My new MD doesn't believe that I have epilepsy.  He had me see my cardiologist who reluctantly ordered the TTT and asked me not to get my hopes up.  Even my cardio figured that I had epilepsy and that I woudn't go 16 years with epilepsy diagnosis that may be wrong.

I know my tilt was positive my BP was 120/90 prior to drug that was administered (nitro) I passed out in less than 1 min.  last rec BP was 50/30 with brady.  Prior to drug admin.  I had other symptoms prior to drug admin.

The EP who was present during my test stressed that I can have both epilepsy and NCS, but when I speak with the neuros nurse it sounds as if this may not be true in my case. I was told to increase my salt, but not given any guidlines.  I had to cut back on all my salt when I had my heart attack and I have noticed that in the last month the increased salt has increased my BP considerably.  

I have been watching my BP reclined  and standing.  My BP rises slightly when I stand but my HR jumps up 15 to 30 BPM.  My heart rate is usually good for being on Toprol, I am usually in the 60 when reclined and 95 - 110 standing, or I think that is good?

I can't get any answers from my neuro - my next appt is not until I get taken all me epilepsy med and I am not sure if I want that.  Can someone help with any suggestions??

Thanks, Jenn

[Jenn0030]

I have been in the epilepsy monitoring(with video monitoring) unit several times, last time was two years ago (nothing abnormal).  I am scheduled again in a couple months.

[Heiferly]

Sorry if I was unclear, I was not suggesting that you try to grab a video camera when you are fainting.  A "video EEG" is a type of test/observation that is done inpatient in the hospital, over the course of several days, sometimes longer.  During that time you are on a special floor of the hospital called an epilepsy monitoring unit where the rooms are set up specifically for this testing.  You are hooked up 24 hours a day to the EEG leads, and a video camera and microphone are mounted above the hospital bed so they can have video and audio of any episodes to coordinate with the EEG.

I don't know about the lesions on your brain; perhaps the neurology forums would be a good place to ask about that.  There is a neurology expert forum here on Medhelp that is answered by doctors.  

I'm sorry to hear that you had an episode while driving a car--how scary!  I wish I could think of more suggestions for you, but I think a lot will depend on what is found when the anti-epileptic drugs are discontinued.  Hopefully they are planning to do this on an epilepsy monitoring unit under video EEG?  

[Jenn0030]

I have only had maybe 12 episodes of syncope...ever.  Of course I have had them at the worst time ever, like driving a car.  Which caused me to have a suspended lisc.  unfortunately and fortunatly I do have a warning but it is about a minute and I think the last thing on my mind would be to grab a video camera.  Generally it is to make sure that I am not going to hurt someone else or myself when I pass out.  I have only done it twice last year, two weeks apart and prior to that it had been several years.  I do have daily (multiple times) of a feeling "jittery", I have started to take my BP when I feel this way and my BP and HR fluctuating duing this time.

In my cardios eyes I am the picture of health with him, it was okay with him for me to increase my salt.  My Bp has been fine since the MI, was high several years prior.

[Jenn0030]

In regards to the seizures- when I was 16 I got several opinions, I was hoping that this was somthing that I wouldn't have to revisit again.  I never looked at the EEG, never doubted the finding until recently.  I got copies of the testing -  complex eeg, mildly suggestive of complex partial and the other summary was very similar.  I guess these were only slightly normal and not the "slam dunk" that epilepsy doc like to put patients on medication.  I really have not had an abnormal EEG since I had the first 2 abnormal onces very early on, 10+ have been normal since (ages 20 - 33).  I think this is the reason the neuro is believing that it is not epilepsy related.  I had another neuro during these 10+ EEGs (ages 20 - 32) who never questioned these "normal" tests, I never saw these so I guess I never had a reason to wonder.

The "seizures" have never changed during the years, when I actually pass out I hear a buzzing sensation lasting about a minute prior to passing out.  Sometimes (very rarely) the buzzing will start and I won't pass out, most recently that was about a month ago, I tried to lay flat on the floor, hoping that would help.  Don't know if that didn't the trick but I didn't pass out.
I am usually dizzy and very clumsy when I stand, sometimes looking as if I am drunk.

I do have several lesions on my brain that my neuro keeps telling me are normal for someone of my age - does that really sound reasonable?

[Heiferly]

I really think you ought to discuss with your cardiologist other avenues of treatment for the autonomic issues besides increased salt intake, considering your cardiac history and the problems it is causing you with high blood pressure.  There are many different medications used to treat autonomic disorders, and there are other dietary/lifestyle changes that can be suggested besides increased salt intake.  I know that I have been specifically warned by endocrinologists, cardiologists, and pharmacists to keep an eye out for high blood pressure as a reaction to the salt loading and report it immediately to my cardiologist; it is not something to take lightly.  

Regarding your neurologist, that's a really tricky situation.  You say that the last 3 EEGs were clear.  Is that to say that you have had epileptic activity on former EEGs?  Or was the diagnosis based on case history?  You can certainly have convulsive syncope.  (Dr Blair Grubb discusses this briefly in his book The Fainting Phenomenon.)  I myself am currently trying to sort out with a brand new neurologist whether I have epileptic seizures or solely convulsions from syncope.  Catching an episode on video EEG is a good way to tease this out; is video EEG monitoring part of what they're going to do while they have you in the hospital?  Have they ever recorded one of your faints/seizures on EEG before?  Ultimately, you need to be comfortable with the treatment decision and like Halbashes said, that may mean seeking a second opinion.  

[halbashes]

Have there been any differences between your recent fainting episodes, and the fainting episodes you experienced in the past?  I can understand how stopping your medication, and changing your diagnosis would seem drastic.  It's good that your Neurologist is being somewhat cautious, and admitting you to the hospital for this process.  Though, if you disagree with this Neurologist, you may want to get a second opinion before proceeding.

Additionally, if you have another diagnosis requiring a low salt diet, I would definitely recommend an additional opinion before raising your salt intake.  There are other treatments available for Autonomic Dysfunction.  Have you experienced any change in symptoms since starting the Toprol?  Have you tried any other medication?

[Jenn0030]

I guess I didn't explain my next appt very well...he sched me (my neuro) for 3 EEG, to see my cardio for the TTT and then for the hospital admission all at the 1st appt I had with him because he was so confident that I didn't have epilepsy.  Now the EEG were 1 month apart, took 3 months to complete these, during which I got the TTT done and then it took several months for an opening to get a date for the hospital admission. So it has been a long road.  I will not be done with these appts until after June.

[Jenn0030]

This am 96/60 (HR 66)when I wake in the am, I try to take it again 3 mins after standing 120/108 (HR 107).  Pulse was a little higher than usual...BP usually spikes mid afternoon.  Was up to 160/120 two weeks ago, backed off the salt for the last two weeks, and it has dropped back down.  It hasn't gone above 130/120(yes I know still too high, called my cardio on monday and left messgae for him to call back)

My neuro wants to stop the epilepsy meds.  My last 3 EEG were normal so I will be admited to the hospital in a couple months to have my meds d/c.  He will taper me off them under supervision, he doesn't feel that I need them.

[Heiferly]

Jenn,

You are correct that your TTT is indicative of neurocardiogenic syncope, which is marked by a decline in BP as well as heart rate.  However, you report that now you are experiencing a slight rise in BP and an increase of 30+ (60s to 110 would be 40+) in HR upon standing, which is more indicative of postural orthostatic tachycardia syndrome.  You say you are taking Toprol; is that the only medication you are taking currently?   I would definitely talk to your doctor about the jump in heart rate upon standing you are seeing at home.

When you say your BP has increased considerably, did you go from low to normal, or are you having hypertension now?  If you are having high blood pressure that's definitely an issue to raise with your doctor.

I'm sorry, I'm not clear on what you're saying about the epilepsy medication.  Is your neurologist suggesting that you discontinue the medicine but you aren't comfortable with that decision?  And the timing of your appointment is somehow contingent upon what you do with the medication?