Friday was an unfortunate day as it ended in me having to go to the ER, once again, for a grand-mal seizure. Tonic–clonic seizures (formerly known as grand mal seizures or gran mal seizures) are a type of generalized seizure that affects the entire brain (see Wikipedia for more information). At first it was thought, from my first one, to be medication induced, resulting from lack of Ativan in my system. But this seizure was much different in that I had just taken all my medication prior to my seizure, and while running low on Ativan, I was not out of Ativan. The only change in medication was when I went to the ER earlier that day (yes, I ended up back in the same ER following my seizure within 24 hours of my initial visit this week).

I find it difficult to understand how an RN can “forget” that Imitrex (Sumatriptan) is only found in INJECTION form, not IV form for one very important reason: it can stop the heart. I have survived 3-4 IV injected Imitrex situations out of pure luck but this one was not to be without problems. It could have very well lowered my seizure threshhold, which apparently isn’t very high to begin with due to my chronic problems as well as the vast amount of maintenance medications I am on, to the point where my other medications (oxycodone or whatever) were able to trigger the seizure when normally, they don’t.

This one was different, also, in the fact that I was alone in the room (kitchen) preparing my TPN bag after taking my nighttime medications, when it happened. I was standing instead of sitting in my chair, like I was the first time, which caused way more issues. From the pain and swelling, I figure during the seizure I hit my chin on the way down and ricocheted off the refrigerator a few times with my head and then finally landed on the floor. Of course the noise was loud enough to call my husband from clear across, on the other side of the house. Because we told him how well he did handling my last seizure, not 3 months ago, he considers himself an expert (I would never wish anyone an expert on handling seizures!) and did not feel it necessary to alert the paramedics with a call to 911, like he did last time. Too bad too; I wouldn’t mind saying hi to my neighborhood paramedics. They are great guys!

He simply held me up so as not to hit my head on the hard floor again, turned me on my side to allow fluid to come out of my mouth, and then waited for me to finish shaking. Afterwards we headed to my favorite ER and had a CT scan (I’m not allowed MRIs because of my neurostimulator and portacath).

I was not given a blood test; in fact, they didn’t give me anything by IV while there. I should have received a blood test. As if I could not make it easier on them, I have an accessed portacath from which blood flows freely when needed (I’m a hard stick now that my veins have shrunk; I make it a point to have them ALWAYS draw blood and give fluid through it). I only worry about my blood tests because I have started to develop petechiae under my eyes. I’ve also been running low blood counts for the past month. If it was just under one eye, I could attribute it to the fall from my seizure, but I have them under both eyes and it is starting to spread from out under my eye to my ears and other areas on my face. Hopefully it will start to heal and stop spreading as that might indicate a bigger underlying disease. I’m not entirely ready for that quite yet (as if you can ever be ready…).

So that is what I got to do this weekend. I wanted to make it a better weekend than laying around trying to recover the energy lost during the seizure, so we headed out to the tulip festival. I’ll wrap up this update with my favorite pictures from the day. I hope you are all enjoying your weekend and are having lots of happy tummy days~

These people were only a few of the ones that asked to take pictures with Ellie and I. I found the question odd, as I would never go up to anyone else and ask for a picture with their dog, but to each their own!

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  • 7 Responses

  • Milly M. says...

    hugs kirby, so sorry things keep happening and changing! love the photos with the flowers!

  • Kirby says...

    Thanks Milly! I love the photos too. They turned out wonderfully! Totally worth everything to get up and out there at a decent time. Hope all is well with you, too! Adding your blogspot to my list of patients, if you don’t mind 🙂

  • Maureen says...

    Hi, I hope to finds you feeling good. My 22 year old son has gastroparesis and had his first grand mal seizure on April 20th (three in three hours.) When he was discharged the was given anti seizure meds and did well until Saturday when he had 2 more seizures. Are your seizures caused by meds or is it the GP? If you have any information we would greatly appreciate it. Thank you, Maureen

  • Kirby says...

    They have not been able to figure it out. It could very well be my medications that is lowering that threshhold to a point where medications, when previously acted fine, are causing the seizures. It could also be malnutrition from GP or other lack of nutrients from CIP. I will know more on Thursday when I go back to the neurologist. I was supposed to be seen today – the reason they let me go home Friday night…I worry about waiting all the way until Thursday when my last seizure seems to be completely unrelated to medication. I’ll update after those appointments and see what happens. I have a cardiologist appointment at my hospital and maybe she’ll admit me until I can be seen by my new neurologist.

  • Maureen says...

    Thank you Kirby for the response. I would really appreciate hearing what the neurologist has to say. They think my sons seizures are caused by one of his medications, but he is no longer taking that medication and is still having seizures. He doesn’t see the neurologist until May 22nd. I’m very sorry you are going through all this my heart goes out to you and your family.

  • Kirby says...

    My neurologist/headache specialist was amazing. She made it clear to me for the first time that being that I am nearly NPO and on TPN because my system doesn’t work correctly, medications should be given in the same manner because they are no different and actually may be more complicated to digest. She is very comfortable giving prescriptions for IV medication and we started on IV Benedryl that day. She also started me on Oxygen therapy where I do 2 liters of Oxygen over 2 hours or 10 liters for 15 minutes. It is documented that this type of therapy helps cluster headaches. It has made a huge difference in my pain as a whole and am extremely happy to see, for the first time, progress. I do have issues getting IV medications due to the high infection risk but it is a risk I am more than willing to take, and have every right to take, if it will help my quality of life. So I struggle with that but did get enough to get me through the next few days while I work with my doctors to get me what I need in order to keep me comfortable and out of the hospital. My doctor is also looking to add more Magnesium to my TPN solution, add additional fluids (bolus) and Magnesium (bolus) for break-through migraine pain. That will all be looked at this coming week when I get new supplies. I look forward to working with my new neurologist/headache specialist. Finally someone who is taking this all seriously and listening to ME! I’ll keep you updated on further treatments. Hopefully you will find someone who listens too.

  • Stephanie says...

    Hi Kirby
    Thank you for your dedication to this blog. I am a mom to an amazing 23 year old named Jillian who was diagnosed with GP in January of 2012. She went from being an all – American athlete in college on a softball scholarship to having to quit school due to her medical issues. She is currently being fed through a J-Tube and only being able to consume very few items by mouth. In February she had a neuro stimulator surgically implanted and has seen some moderate improvement. Two days ago she had a Grand Mal seizure which was the most horrific, terrifying thing I have ever witnessed. I went on line looking to see if there was a correlation to seizures and GP and found your site which showed that you also have experienced seizures. Have your development of seizures been diagnosed as a side effect of GP or the meds that you are on. I am panic stricken and she doesn’t go to the neurologist until tomorrow. I am inspired by you and tenacity and wish you all the best

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