What’s a seizure feel like?

I’ve been asked this a few times, and it’s a surprisingly difficult question to answer. I don’t mind talking about it, or anything to do with this condition. I guess it’s a bit like the old story about how eagerly people want to tell you about their operation; only they ply you with way too much information. I want to avoid that.

  The thing is, each case is different, so this doesn’t apply to every instance of seizure in different peope. The location of the tumour and its type make a huge difference. Some people with brain tumours don’t get focal seizures as I do.

  I must have had nearly a hundred seizures since that first one. They’ve changed in how they feel over the twenty months in my case. You can see what happened on the first time from this description, but I’ve never experienced anything quite like that again, I’m pleased to say. I don’t want to.

  So this is just about what happens to me, in recent experiences, now that I know what to expect. How it feels from the inside.

Early warnings

There aren’t many. Maybe Tracey can detect moods changes, as I think I get quieter and more irritable (something I try my best to avoid showing, but don’t always manage!) I do occasionally get little twitches in the fleshy part of my right hand. These may happen a couple of hours before the full onset. 

  Apart from that, and maybe a few flutters in the arm or leg itself, there’s very little warning and often none at all. Within seconds of feeling as normal as I do, I usually become aware of one of two things that let me know I’m under attack. Either my right hand fingers start to twitch and flex sharply, or the whole arm feels as if its suddenly been clamped in a leaden sheath that keeps tightening, and then it spasms. I may start to feel a pulsing in the leg before other things happen, but that’s rare. It’s more likely to be my hand or arm where it starts.

  If any of these happen, then I try to get to my bed. Lying down, I cope with seizures better. I have always been fully conscious through every seizure.

While the seizure is on

At that time, something takes over the action of the hand or arm. Yes, the part of my brain that usually controls ‘normal’ motor functions loses it to this other controller. If it starts in the fingers, the spasming and clenching of the fingers are usually very powerful in strength and quite painful. The knuckles feel they might explode. The fingers may start to curl up, then straighten, and close again so tightly that I’m glad we’ve kept the nails cut, or they can tear into the palm of my hand.

  After some time, the seizure travels up the arm and it spasms. It’s not like nothing is controlling it; it’s that something out of my control is telling the muscles and tendons what to do, in a rhythmic fashion, but with all the power in them that they have.

  Typically, the seizure will either stop at one point and move on to the next, or add a new part of the body to the seizure in progress. It will go to the shoulder, then through it to the right side of the neck, then downwards through the right side of the body to the thigh and knee joints, and to the foot. All muscles, ligaments, tendons etc are involved.

  These may be more exhausting rather than painful. There is no STOP command operating and it’s not like you can lie back and just let it roll on as if it’s simply some device moving the body all from the outside. You’re doing all the work and it feels like it. There’s nothing the ‘normal’ brain can do to stop or lessen the hard work it’s doing.

  It may retrace its path from foot right back slowly to hand, if it has stopped elsewhere. It’s like it is seeking out everything it can control and testing it.

When will it stop?

This is always the big question when it’s happening. Seizures have gone from as little as half a minute on rare occasions up to eight minutes. If the latter doesn’t sound like much, get a tomahawk and find a big dead tree, and chop into it as hard and fast as you can without stopping even for a second - for eight minutes.

  Even boxers stop for one minute after three minutes! And they know the bell is going to ring. I can’t be sure. There’s no bell. Those two hours non-stop on the first day are etched deeply into my being.

  We are supposed to call an ambulance after five minutes max. But there’s no point, at least so far. It has always stopped of its own accord. An ambulance would take at least 10-15 minutes to get here and the seizure would have stopped. If necessary, we would get me into the car here somehow, drive to Casualty and be there much sooner than any ambulance.

  The average seizure would be 3-4 minutes. When it stops, I feel very tired.

Afterwards?

Pre the Avastin days, paralysis of the arm and leg was very heavy, and it would take up to half and hour to be able to move safely under my own steam. In the first months of taking Avastin, I very rarely got a seizure. It was usually short, not very violent, and I recovered use of arm and leg very quickly and fully.

  Now, two things are different. One is that seizures usually occur in the early hours of the morning after some hours asleep, and wake me from sleep. Pre-Avastin, they were invariably in the daytime. I don’t understand why this change but we think it is something to do with brainwave rhythms affected by different sleep patterns.

  The other is that in the most recent seizures, usually about four minutes in length, the paralysis has returned post-seizure. This is unfortunate because with paralysis always comes more permanent loss of strength of the arm and leg, which means less mobility, more balance issues and less hard-won manual dexterity. Much of the exercise I have been doing seems to be undermined by a seizure, which is dispiriting.

  But - there is nothing very different about the arm and the leg from what they were ten minutes before the seizure. This is all about commands travelling to and from the brain and the body, not the limbs themselves. The one positive thing about these latest seizures is that the exercise has allowed other parts of my brain to take over part of damaged motor functions, so recovery is still quicker than it was this time last year and damage per seizure seems to be less.

  All this can change in a flash, with one unexpected or sudden occurrence or ‘irregular’ seizure. We wait, and watch, and try to learn what we can from each.