changing seizures question

[swimmy]

I know the answer must be here somewhere, but I've searched and can't find exactly what I'm looking for. I apologize if this has been discussed before.

I have controlled tonic clonic seizures and uncontrolled simple partials (simple partial). Almost four weeks ago I had a video EEG done. I was there for 6 days, had two tonic clonic seizures and one aura. When I left they took me off one of my three medications and upped my main one (Lamictal). I'm also on Phenobarbital.
When I was in the hospital unmedicated I started having a racing heartbeat--it would go from 60-132 in a flash and then come down about 20 seconds later. This had never happened to me before. The neurologist said it was most likely a simple partial, just different from what I have had prior. I didn't have my "normal" simple partial while I was in the hospital.

Fast forrward to today. I was talking on the phone and suddenly I felt exactly like I did in the hospital, but still, not like my "normal" simple partial. Similar, but not the same. Afterwards I had my normal "after simple partial" headache, lightheadedness, etc. I tried to sleep, but kept waking up to a racing heartbeat. Those stopped about an hour later--the same amount of time it takes for my "normal" simple partial seizures to stop.

I know that seizures change. My question being, do they change basically overnight like this? Would this be brought on by the two tonic clonic seizures that I had? Could it be that since they raised one of my medications I'm only feeling part of the simple partial I felt prior, even thought it lasted about twice as long?

Thanks for any answers. I don't have my follow-up appointment for another two weeks and this is driving me nuts.

[Chris515]

I'm sorry you've had to go through these changes swimmy... I don't know too much about it but I think that seizures and postictal (simple partial?) effects can change suddenly. Possibly because of one or two bad tonic clonic's. I'm afraid I don't know much about the racing heartbeat though.

Overall I can relate somewhat... I have controlled tonic clonic's and uncontrolled simple partial's too. The postictal effects of my simple partial's are now completely different, and the change just came out of nowhere... for 17 years I would be tired, dizzy, etc... after, and I would forget names and letters, but I could pronounce words just fine. For example I would remember the numbers on a license plate but not the letters. Names would come back to me and make sense after a half hour or so. Now since January... my speech is affected afterwards. I can't say certain words, or even comprehend them. For example I can't say the word "park" or "creek". Something to do with the "k" maybe. This lasts for hours afterwards. The first time it happened I was terrified.

My neurologist told me yesterday that the effects can change for no reason, especially if there is a physical cause to the epilepsy, like mine - forcep damage during birth on my temporal lobe on the right side. Maybe that has something to do with why my words are affected, but not numbers.

I'm sorry if I rambled on... I hope this helped.

[Crystal11]

I am sorry you're feeling that way! I have a condition called paroxismal atrial tachycardia and premature ventricular contractions (palpitations/heart skips) and my heart goes from 65-140 and goes in a "run" where they have to give me Ativan to slow it down. I have propranolol that I use myself, but its PRN/As needed. Then If i cannot get it to go away, then it's off to the E.R. I would definatly talk to a cardiologist who can run EKG or ambulator ECG as well to monitor things for more than a day or two at home. they can see if its an electrical problem in your heart or if it's epilepsy related.
Mine doesn't have a cause so I have no idea if mine is epilepsy related or not- but right now i just consider it a cardiology issue till I see a new specialist here in Tx.
Anyways- write everything down and tell ur PCP or neurologist again too and let them know that they are still giving you trouble.
Tachycardia usualy starts up fast like what you described but stays fast like that for over 5 minutes and causes you to not breath well- it comes back slowly to normal after medication like in my case, and some people just put really cold water on their face (E.R. told me to do this as well), or it goes away on it's own. Just measure your BPMs and the time or length of the episode and they can probably tell what it's being caused from.

Please take care,
-CM

[brain]

I would not wait, I would phone the
Doctor's office and let them know what
you are experiencing and possibilities
that they most likely can bump you up
so you can be seen sooner.

It is possible but not always, that seizures
can change quickly. I had several in the
past that just happened suddenly just out
of the blue and out of nowhere - just floored
with it and its stuck with me since.

Yes - Seizures can cause tachycardia and super-
tachycardia (200+ BPM) as well as bradycardia
(50- BPM). I have experienced this and it's been
recorded on the EKG (or ECG - whichever term
you want to use). They (Medical) can now detect
when I am going to have a seizure by just using
the EKG's rather than waiting for the EEG Tech
to come down with the electrodes and all. Because
my seizures sends my cardiac zooming to the
realms unknown and then after the seizure is
over with, it slowly comes back down and tries
to get back in synchronization.


However, my concerns are to the fact you are
undergoing medication titration and changes,
I wouldn't delay in contacting the Doctor and
if it happens again ---> call 911 and get into
the Hospital and be checked out ASAP!

I am not a Medical Doctor but it can be a
serious medical problem going on if you are
experiencing sudden changes and/or things
that are unusual for you ... GO TO THE
HOSPITAL! I strongly suggest that you write
a log of what you are experiencing and had
been experiencing right now, so just in case
if you go, you can hand them the info and
they can copy it and make note of everything;
it will help them to better treat you and if
necessary get direct contact with your Doctor
immediately.

[LuvMyTwins]

to definitely get it checked. This was happening to me over the summer and it manifested itself into anxiety. There are many common symptoms between epilepsy and anxiety. Actually, when I did my video EEG in October, I didn't have any seizures, but kept having the heart racing, etc. They ruled it as anxiety. Having epilepsy, anything "different" that happens I automatically assume it's epilepsy. It was great to hear that I had a different issue.---Mere

[LuvMyTwins]

I was going through medicine titration as well.....

[swimmy]

You guys are awesome!

I now know that my seizures can suddenly changed as mine have.

I am keeping a log, and will call on Monday. I would like to monitor it a bit over the weekend just to see if there is a pattern. My simple partial seizures always happened in late afternoon, although this one happened at 2:00.

My neurologist knows me quite well as he's been seeing me for 14 years and is a great listener. He knows I'm very sensitive to medications and has always made the right calls. However, I will time them and if any last a considerable amount of time, I will bring myself to the hospital.

Thanks everyone--you rock!

[drarvindr]

Dear swimmy ,
you may want to get yourself checked up by a cardiologist to rule out the other possibilities before jumping to the conclusion that this is seizure related. it most likely is , but nonehteless i feel it's better to be safe and get yourself looked at.

[swimmy]

Thanks everyone!

The (good!) update is that the racing heart seems to have stopped. My husband has a small oximeter (measures oxygen level and pulse rate) that I started carrying around with me. Must have worked since as soon as I did, nothing happened (of course).

I don't know if this is good or bad...that it was a heart issue and it stopped, or is a seizure issue and will come back.

For now, I'm just glad to finally be feeling normal again--only took 3 weeks after the video EEG.