non-convulsive seizures?
 

I met a nurse through my TBI support group. At one point in the group I described a sensation I would get earlier in my recovery. I would just be laying on the bed or couch and my heart would start racing and I would feel my heart beating in my neck and head. The doctors said it was just anxiety and gave me lorazepam for it.

After the group, the nurse pulled me aside and said that I was probably having non-convulsive seizures. She said they should have done an EEG.

Is this possible? I still feel like I get that sensation from time to time. So does this mean I am having seizures and I don't even know it? Should I be getting and EEG test? Is this something I need to look into?

Thank you.

I've had those. They have always gone away. The more I ignored them, the faster they went away. They can be a bit disturbing but I would take my blood pressure to see if there was a problem. It was sometimes just a bit elevated. Maybe just a reaction to the sensation.

An EEG would be useless unless you had one of these episodes during the EEG.

There are a variety of different chemistries in the body that can cycle and cause odd things like this. Unless this became chronic and interrupted your life, I would just learn to relax through them.

I would not take the Lorazepam routinely. I have clonazepam ( another benzo) in the cabinet that I have used when they do not settle down on their own. Propranolol has also worked if it cause a spike in BP. So, I just know that if it is a problem, I have access to a med, just in case.

Otherwise, I go on with life.

I agree with Mark and the nurse, that an EEG should be done. Decades ago I started having seizures called partial complex where I would suddenly feel like I lost a blip of time....if someone was with me, they'd say I got a vacant look and stopped doing whatever I was doing.....a neurologist recreated the seizure activity during an EEG by flashing a strobe light in my face...not pleasant. I don't know if they do this anymore as this was 15 yrs ago.

There are many different kinds of seizures and I would start with your primary care doc with a referral to a good neurologist...Best of luck, D.

Thanks for your replies. A neurologist has been managing my care since the second month after my accident, and I always told her about this sensation. She never seemed interested about looking into it - assumed it's just anxiety. But I feel I have controlled a lot of my anxiety, and I still have these episodes, probably once daily.

So Mark - what you are saying is that as long as your BP doesn't spike when you have the seizure episodes, it is no big deal? Are these episodes not detrimental to the brain?

I manage to get through them like you say, but I am wondering if there is more to it than that - like it is indicative of something more serious. Or is it just part of having PCS?

Diandra - what did you end up doing for your seizures? Do you still have them?

If your BP is staying in a safe range, I don't see how it can be a problem. If your BP does spike but you can control it, that's OK, too. You are not having convulsive seizures nor absence seizure where you lose awareness of your surroundings.

In my opinion, they are an anxiety like event even though you may not recognize a trigger. These can be self-perpetuating. In the quiet, you hear and feel the pulse, your brain zones in on it and becomes focused to the point of almost being obsessed. This increases adrenaline and even magnifies the sensation. This may or may not be your case.

Even people without PCS experience these 'out of the blue' anxiety events.

If they become chronic and are identifiable on an EEG, the neuro would prescribe anti-seizure meds. That is to be avoided if possible.

My best to you.

Thanks Mark. That makes sense and helps me be more ok with it :)

RidingRollerCoaster, I think I have had the same thing. Lying down to go to bed, I feel these strong jolts of pulse all over my body, sometimes in my head but often in my chests and even the peripherals. I noticed that when I woke up it wasn't there but when I would go to the bathroom, come back and lie die it was back, my heart was thumping hard, not a nice feeling.

I think in my case it was partially to do with loss of physical condition, like just the act of getting out of bed was enough to cause my heart to race. Otherwise I have zero idea what caused it for me. It has improved recently, which also corresponds with improvement in my anxiety, perhaps these were linked.

This has also gone now too of course, but when I would wear ear plugs, I would feel my heart pulsing in my ears. Made it rather hard to get to sleep :)