Idiopathic Epilepsy and Fibromyalgia – Illnesses, Gotta Catch ‘Em All!

Idiopathic Epilepsy and Fibromyalgia - Illnesses, gotta catch 'em all!Many of you are aware of my reduced social media and blogging activity, since I posted about being spread too thinly. While a portion of that was attributable to higher Fibromyalgia symptoms, a major reason for needing to slow down even further was having a seizure at the start of the year, my second in about ten months. Well, it looks like FJ is playing Sickness Go, like I “gotta catch ’em all”. It’s been confirmed that I have Idiopathic Epilepsy. I will try to be as brief as possible – something I’m not good at.

My Recent EEG (a type of Brain Scan)

About three weeks ago, I went to the hospital for an EEG, the nice acronym for Electroencephalogram. Try saying that with a mouthful of marshmallows. An EEG is a way for medical experts to record brain activity. This is what they did to me.

They Drew on my Head

No, I’m not joking. They have to mark on your scalp where electrodes need to go. For most people this is fine. But I have Fibromyalgia – meaning my pressure points are exceedingly sensitive and I have an “overtuned” sense of pain. So from the start, that put me in more pain, before they could do anything else.

Placed Electrodes

I emphasis placing. What it actually felt like was someone sticking needles through my head. They nearly had to pause this preparatory stage while I stopped crying. Anyway, according to the NHS website:

During the test, small sensors are attached to the scalp to pick up the electrical signals produced when brain cells send messages to each other. (Ref)

I was in genuine distress just at this point.

Performed Strobe Test

You know those movies, or news reports, where they warn you of flash photography? There’s a reason for that. According to my nurse father-in-law, people are sensitive to different frequencies of flashing lights. With my eyes shut they flashed a light at various intervals. I lost a couple of seconds on the last test – because I had a “weird moment” and never recalled seeing the light.

They Really Cared

Despite COVID, one-way systems, extra santizers and single-use masks, the two ladies overseeing my test were genuinely caring. I’ve come across many dispassionate medical folk over the years – and to a degree they need that to protect themselves. But I cried twice and they had to cut the overall test short. But I thanked them afterwards. The NHS has been under incredible strain for the last year, but that hasn’t dampened how much these two caring, understanding women were.

The Results

I was supposed to get the results within two weeks. In the end it was just over that. The result is:

  1. I have Idiopthic Epilepsy. I’ll explain that in a bit.
  2. My seizures can be triggered by flashing lights, but that’s not the main, or only, cause.
  3. I am at risk of having more seizures.

What is Idiopathic Epilepsy?

From what I’ve been told, idiopathic means there is no singular focus, or part of the brain that causes my seizures. It could come from anywhere at any time. This would explain why the activity/location I had the two seizures have almost nothing in common.

Which Flashing Lights?

Although the highest-speed flashlight test had the greatest effect, I am not affected by computer screens. These do flash but at a level not detectable by the human eye. However, some epileptics can be triggered by screens. But anything that’s “fairly” quick does do things to me. For example, en route to my EEG, we passed some trees that the sun was shining through. Each time a tree trunk passed in front of the sunlight created a “flash” for me. So I had a “weird moment” even going to my test. Hope that helps a bit.

What Does This Mean for FJ?

As things stand, I could have a seizure at any time for any reason – or no reason. Clearly that needs to change.

Neurology

I am being referred to a Neurologist for further advice. This is where it gets interesting, because I’ve never seen a Neurologist for my Fibromyalgia. This is despite the nervous system being kinda broken when you have Fibro and a Neurologist deals with…the nervous system. So although I will be seeing them in relation to my seizures, there will almost certainly be overlap with my chronic pain symptoms here. So getting advice for the idiopathic epilepsy will inadvertently be applicable to Fibro. Win-win – hopefully.

More Meds

I have never asked for more meds, or stronger meds, despite what the media may tell you about people on opioids[1]This is not the place to discuss opioids. To anyone wondering, I have tried many non-opioid meds for my pain and they had no effect, only my current combination of meds takes the edge of the pain. It’s not for everyone, but it is for me.. In fact, any time my base pain level switches up a gear, I explicitly ask to try something different not something stronger. That said, this is a new health condition for me. And if a brain expert says I am at risk and should go on meds, then me, being a mere blogger, writer and gamer, will bow to their knowledge. We need to discuss whihch meds, of course, but taking specific meds is non-optional.

Maybe Less Pain?

A quick (UK) search online shows that some epilepsy/anti-seizure medication is also effective at treating nerve pain[2]e.g. https://www.nhs.uk/medicines/carbamazepine/. So, although reducing my seizure risk is the aim, there’s a chance I could have lower pain levels, depending on the meds I’m prescribed.

The thing with idiopathic epilepsy is that it could happen anywhere, so it’s harder to target, I guess. But even general epilepsy medication may help here.

What About Lifestyle?

Yes, exactly. There are non-medical ways I can try to minimise my seizure risk, while in tandem with medical treatment. I have yet to discuss this with a Neurologist, but as my father-in-law is a trained/qualified nurse, he was able to provide some basic pointers.

Get Sleep

Which I do. But sleep/rest with Fibromyalgia is generally rubbish. And if I get “too much” (for me that’s over 6½ hours), I end up in more pain, and more pain means more stress, which means more pain. So long as I get my usual level of sleep, I should be fine on this score.

Keep Stress Down

Which, for me, means also “do what I can to keep pain down”. So I need to not be pressured, or to pressure myself. If something makes me stressed, I need to either reduce/eliminate it, or try another route to reduce the stress it causes. Stress could also include putting my body under too much duress – doing too much housework or DIY in a day, for example. So I need to do some movement/exercise, but not too much. Whatever that means.

Measure/Balance Blood Sugars

I know I’ve been getting more “energy crashes” recently. This isn’t just “getting tired”, but a sudden tank in wakefulness and alertness. Historically I just ate more – but that has led me to put weight on, when I am working towards weighing less. So I’ve been using glucose tablets and trying to have all my meals in a day. I’m doing what I can. We’ll be getting a “glucometer” to make sure I keep my blood sugar in a normal range.

Managing my Idiopathic Epilepsy Risk

I know I used to be on Twitter all the time, trying to play all the games and attempting to write a blog a week. For now, I just can’t – and probably, medically, shouldn’t. So I won’t. This also means I need to keep my sporadic Twitter usage in place. This is all I’m doing at the moment:

  • Rest, including how I play games and the drawings I do.
  • Family, housework and DIY (this now being moderated).
  • Writing my fantasy book and doing drawings for it.
  • Blogging about LOTRO Festivals and Events and writing LOTRO FanFiction.
  • Tweeting when I feel up to it.

And that’s kinda it. If I try to do more, the pressure could trigger a seizure. Nothing is worth that outcome.

A Huge Thank You

Time to sign off. But I want to thank the many of you who give me moral support via Twitter. And to those that go a step further and support on Ko-Fi or Patreon , I am massively grateful. My health journey is really difficult, but as Buscarron in FFXIV says:

Those things we cannot do alone, we must do together.

So, thank you.

Footnotes

Footnotes
1This is not the place to discuss opioids. To anyone wondering, I have tried many non-opioid meds for my pain and they had no effect, only my current combination of meds takes the edge of the pain. It’s not for everyone, but it is for me.
2e.g. https://www.nhs.uk/medicines/carbamazepine/

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Fibro Jedi

A 30-something Shadow Jedi, married and have a small daughter. By that I mean "young", not just "short". I have a chronic pain condition called Fibromyalgia andI play LOTRO, SWTOR and FFXIV and blog about two of them. Social Media has connected me with so many people and some of those have become amazing friends too! As a hobby I am relearning drawing, which you can see on my DeviantArt profile.