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So This Happened The Other Day — Neurological Lyme Disease Seizures

April 9, 2016

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Along this not so lovely, mysterious, and what seems to be never ending Lyme disease journey, I’ve had my share of scary and frightening “episodes”. That is what MM (the hubs) and I refer to the sudden and unpredictable attacks that take over my body.  Throughout the years, too many episodes to count have landing me in the emergency room.  Based upon these past experiences, I have basically given up on going to the ER unless absolutely necessary. I now choose to ride out even the scariest of storms in the comfort of my home.

Before you judge me for boycotting our local hospital, or think I’m completely wacko (even though I kind of am, but that is a different issue), until guidelines for treating chronic Lyme disease change I’m probably better off trying to fight through my misery at home. Unless of course I’ve severed a limb. Some day – I pray in my lifetime – this will change. (Not the severed limb part, but the guidelines. In case I need to clarify that thought.)

Since I’m a 15+ year veteran at coping with all of my various episodes, I have an arsenal of meds to handle just about all of what might hit me. Extreme nausea, check. Panic attacks, check. Fevers, check. Migraines, check. Severe pain, check. Vertigo and feeling faint, check. The chest pain and pressure I now know is Lyme induced chest wall inflammation, or Costochondritis. The air hunger and difficulty breathing, compliments of my Babesia. That duo of chest pain and difficulty breathing used to cause quite a panic – am I having a heart attack? After extensive cardiac workup, thankfully (written with relief, also sarcasm and disdain) these symptoms are simply part of the “giving” diseases in control of my body. Oh the joys!

The above prelude brings us to this little thing that happened the other day. Definitely a topper thus far on the ever-growing, precariously scary, and freakishly frightening Lyme and friends episode list.

I had a full blown neurological Lyme disease seizure. Body involuntarily curled up into a tight fetal position. I couldn’t move. I couldn’t talk. Frozen stiff, yet every muscle twitching. Nerve pulses and tremors throughout my body.   Hands and fingers locked in a disjointed position. Jaw clinched shut. Tears streaming down my face while I was trying just to breathe. Overcome by enormous fear, panic, and frustration, I was able to will myself to squeak out a few whimpers. Trying to somehow communicate with MM, “umm, something’s not quite right over here on my side of the bed – I might – quite possibly – I don’t know – maybe – could use a second opinion”!?!

The hubs wanted to call 911 immediately, and we (most likely) should have (duh!), but I’m stubborn and still quite hesitant. I am truly thankful MM was by my side to help me through the long few hours start to finish of these strange new happenings. Had he not been home – well – I’m not sure how this might have played itself out. A scenario we now need to add to the “what if this happens while MM is out of town” list. Had I been home alone, I would have dialed 911, obvi. Oh wait, I couldn’t move or talk. Yeah, guess we still need to think this one through a bit more.

Some time has passed, and I’ve been able to rethink everything prior to this seizure. There is possibly an accumulative combination of factors that might have precipitated this bizarre and troubling turn of events. The icing on top of this Lymie’s episode cake, as it were.

We’ve been hitting my body even harder with meds the past several weeks, trying to attack Lyme and friends from all sides. Subsequently, I’ve had a long string of miserable days without any reprieve. I’ve also been upping my detox routine in hopes of ridding my body of all the excess germ die-off. My routine was a bit off kilter the day of this particular episode. I didn’t take my meds appropriately, and I wasn’t hungry so I hadn’t eaten. Another huge no-no was I allowed myself to get dehydrated, which rarely happens to this gallon of water a day drinking chick. Since I was feeling so incredibly lousy on this day, I amped up my detoxing even more. Quite possibly, I pushed my body into an excess detox mode. Combined with dehydration – we might very well have ourselves a cake topper – in keeping with the cake-y analogy.

Though I am not personally a neurological Lyme specialist, I do sorta play one in real life (wink, wink). Thankfully I have regular consultations with my Lyme disease specialist. Should the need arise, further neuro testing will take place. It has been a few years since my last full neurological assessment. Sounds counterintuitive perhaps, but when you are sick all of the time the last place you want to be spending time is in a medical facility. Most sickly folk completely understand that feeling.

For now, I am leaning strongly toward my intuition that lessons have been learned. Realizing the importance of staying on top of my medication, diet, and hydration regimen, as well as keeping the detox methods reasonably maintained. All of this combined with monitoring my daily episodes and lightheadedness, in hopes further seizures will be kept at bay. That is of course, if the spirochetes in my brain cooperate. Those blasted buggers are still busy baking a cake, and I really hate icing!

So the purpose behind this blathering/reflection was to provide another peek into a day and the life of this Lymie, and to offer additional support to others fighting the good fight with Lyme disease. Stating what may seem to be the obvious to most, there are definitely going to be days that are by far more challenging than others. Not as if this is something that is beholden only to the Lyme community or anyone facing health issues. Challenges in life affect anyone who is breathing! It’s just part of life. Without getting all Deepak Chopra on you, it’s how we choose to deal with, cope with, and accept these “little mishaps” and difficulties that help to make us who we are as humans.

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Despite the sometimes scary and frightening, miserable, or isolating moments of this Lyme life I have been entrusted with, I do my best to stay strong, to learn from and look beyond my struggles, to pause and give praise for each new day.  What a blessing this life truly is – may we not take it for granted.

I hope you are able to look past your daily challenges, embrace each new day with thankfulness, gratitude, and an uplifted attitude. It’s good for the soul!

Until my next Reflection…

Thank you for letting me share.

—Terry xx

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Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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