This week I got an epilepsy diagnosis that pretty much changed everything… and not in a totally bad way, either. After landing up in hospital this month with tonic-clonic seizures that lost me a day or two, it took me a while to process everything. Quite by chance, a friend came to visit earlier this week and she mentioned something about nocturnal seizures and the link between seizures and antihistamines and other over the counter medication. Something about what she said lit me up like a light bulb and I began to think back to a number of incidents I had as a kid.
When I was a baby, I had at least two febrile convulsions that arose from two serious infections with fevers. I also had a few fainting episodes and my sleep issues began early in life as well. Seizures and related issues do not always look the same. I would often wake up with a racing heart, confused thoughts, trembling muscles, and a pounding head, thinking it was a nightmare or sinuses or anxiety. These went on and off all of my life. It was only later on, in the last year or two, that I began having daytime episodes as well, which I now think were likely focal or partial seizures. In those, I would feel as though I had forgotten to breathe. I would feel my body and mind stiffen up and often, I would get the same dream-like thoughts. Sometimes, I would look at my arm and feel detached. They would ease up after a few seconds and I would be relieved.
After writing out a three page medical history stating all of these episodes, I went to my doctor. I brought along my hospital papers, too, including the EEG results. The whole time I was reading out the history, he was nodding along. When he looked at the results, he told me that it was unlikely to be anything but an epilepsy diagnosis. Of course, I burst into tears.
Finding an Epilepsy Diagnosis
The thing about this epilepsy diagnosis is that it is not an end to life as I know it but rather the start of something better. Although I can no longer take any antihistamines or other over the counter medication that may interact with my medication or trigger any seizures, I have found answers to some things that have been bothering me for years:
- Frequent bouts of bad sleep that nothing ever seemed to resolve. Sometimes, I would wake up five or six times a night. Often, there would be a few bad nights in a row. Just before I had these seizures, I had for all accounts stopped sleeping, which was likely a big trigger.
- Annoying daytime incidents that made me feel anxious and frustrated. I could never prepare for them and they could happen at any time, anywhere. Sometimes, they would happen while I was out. It would only be a minute or two, but they made me feel tired and I hated having no control.
- Childhood sleep issues that make a lot more sense now. Nightmares, heavy sleeping that was so bad, my mom had to walk me around the house to get me out of the nightmares, fever seizures, and easily ‘checking out’ or even fainting if I cried too hard or bumped my head in any way.
- Strange muscle aches in the morning. Even if I was not aware of bad sleep, I would often wake up with bruises or just with aches the next morning. I’d often feel irritable, too.
- A constantly sore tongue. I only put this one together after someone asked me if I had often woken up with a sore tongue. I have almost always had ridges along the sides that I thought was something else.
- A sensitivity to certain chemicals. I knew that caffeine was bad for me after having a few panic attacks well over a decade ago, but now I know that cortisone, antihistamines, and ingredients like pseudoephedrine likely triggered my big seizures recently.
- Classic seizure warning signs aka Auras. These are the weirdest part of all… the weekend before I landed up in hospital, I felt very strange. From the Friday morning, I had been lightheaded, dizzy, anxious, headachey, nauseous, trembly, confused, and uncomfortable. Nothing helped, short of putting my head between my legs and breathing carefully. I even asked my mom to get me rescue remedy tablets in case it may be anxiety. It didn’t feel like anxiety, though. It felt strange and wrong. I was going to go to the doctor that Monday and instead woke up nearly two days later in hospital.
There is no doubt that the chronic sinus infection I was fighting, combined with the lack of sleep and those med interactions, all played a role in these seizures. I did not listen to my body and I did not make the connection until someone helped me make it in the first place. An epilepsy diagnosis is the last thing I would ever have guessed. Getting that diagnosis has been emotional at times. A little scary, too, of course.
It has also given me answers at long last. There is a very good chance that my current Epilim dosage will be fine from the start. I may well never have another major seizure or even any partial seizures again from here on out. Even if I do get symptoms, my lovely GP will be there to adjust the dosage and medication. I can avoid triggers, make healthy lifestyle changes and, most important of all, reclaim my sleep.
If you ever get an epilepsy diagnosis or any other scary news, don’t stress. Getting a diagnosis is the first step needed for healing. Now that I have my epilepsy diagnosis, I can let go of all those questions and begin focusing on the good stuff, like living and enjoying life once again, healthier and stronger! I can also take care of myself, armed with all the knowledge I need from the epilepsy diagnosis.
