Tonic Clonic Seizures: I Really Need Your Help!!

So today was kind of a weird day. It started off normal, as these types of days usually do. I woke up to a gentle seizure, and although I was disappointed, I got on with my day and had breakfast and took my medications along with my iron pill. I drove around a bit with my for a bit, and at one point, she stopped for gas and asked me if I wanted to come with her to get some groceries. I figured ‘May as well just sit in the car. I’ve already had a couple seizures today.’ My mom told me that she’d get the groceries as quickly as possible so I wouldn’t be waiting in the car for too long. My seizures generally last for about a minute, so neither of us were too concerned.

I’d left the radio on, just to keep me company, and because I like the music on it. I was feeling “off” though. Some of the songs made me feel like I could go into that “seizure head space”. Basically everywhere I looked was triggering, so the music was just extra triggering. When one of my favourite songs, “Some Nights” by Fun, came on, I fell into a seizure. It wasn’t my normal seizure though. Both legs were pulsing non stop, and both hands were shaking, My face was funny, and I would have grabbed my emergency seizure medication if a) I had thought to have grabbed it and b) if I could have got my hands under control. I had motor control to turn the radio off, to see if that would stop the seizure, but both legs kept pulsing and shaking like crazy, and my hands were barely under control, so I turned it back on. I had my seat belt on, and I wondered if being constricted was making it worse so I managed to undo my seat belt but it did nothing. I reclined my seat but I just continued to shake and shake and shake. If I had been in a standing position I would have been toast.  It must have lasted at least twenty minutes. My seizures never last that long, so when my mom finally came back, I was barely able to explain to her what happened, because my tongue was all swollen. We went immediately to the hospital where I was treated.

Anyways, my point of this story is: Does this sound like a Tonic Clonic/Grand Mal Seizure? I have had about three of them in my life so I am not very familiar with them. I’m going to tell my neurologist about this, but I was just wondering if you have any thoughts? Oh, another important point, gross but crucial i didn’t wet myself as it says on the list of symptoms on clonic tonic Seizures. If you have any questions, feel free to ask. Love you all!  xox


7 thoughts on “Tonic Clonic Seizures: I Really Need Your Help!!

  1. I am sorry to hear about your seizure, it is always a very frustrating experience…even if it only makes your will stronger! Things can only get better 🙂
    In all of this you didn’t really lose your consciousness completely…you were aware of what was happening, even if you had no control over it. I don’t know if this is a classic case of tonic-clonic because there one is completely unconscious. I have a feeling (from personal experience) that you could do with a second opinion (on drug use..which meds and what dosage etc).

  2. oh no! that must have been very disressing! so sorry to hear that. I can only say from my personal experience that tonic clonic is completely unconcious. I have partial seizures as well which cause serious myclonic jerking and feel like a slow rumblling earth quake when then come in cluster seizures. Clusters happen when I get a bad aura, have partials and then keep twitching for a long time (in the past this has been up to 2 weeks and needed hospitalisation). I would suggest that if this hasn’t happened before you look at what has changed eg, diet, anything different, sleep problems, could it be your iron tablets? etc and check that you havent’ forgotten meds (you know all this so I don’t need to say). hope you get to speak with your neurologist soon and also that you are feeling better. if music is effecting you look at reflex seizures. lots of love get well soon x

  3. First, I’m so sorry this happened to you. I agree with the others, however, that since you didn’t lose consciousness it probably wasn’t a grand mal (tonic clonic) seizure. Do get checked by a neurologist soon. Is this the first time this sort of seizure has happened? I have grand mals, but once had a complex-partial. I think they can change character, and you want to track this. Do you keep a seizure journal? What might have been different that day? What you ate? How much sleep you had? Amount of stress you were under? The music? Consider everything. And let us know how you’re doing and what your neurologist said.

  4. Thank you everyone for your support! As people who are living with epilepsy, your support, suggestions, and words of wisdom are invaluable to me! I think you are right. I don’t think it was a Tonic Clonic seizure. Like you said, epilepsyneurologyandme, it was probably just a cluster of simple partial seizures (as I’d had two earlier) and this one had carried on for way too long to count. I definitely do keep a seizure journal, and I’ll be sure to flag it and note anything that might have triggered it. I have an appointment with my neurologist next friday, so thankfully I’ll be seeing him soon! Thanks for all of your support and I’ll keep you updated! xox

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