I have Lyme. I’d like to not have it anymore. I also just want cake.
Rewind a few months back for a yearly routine exam I had with a yearly routine exam type doctor:
Her: “What is the PICC line for?”
Me: “I am being treated for Lyme Disease.”
Her: “Oh, I’m sorry to hear. Is it working?”
Me: “Yes it is.”
Her: “I see on your information sheet here that you list quite a bit of… medications.” *concerned look in my direction over the top of her glasses*
Me: “My Lyme is late stage and has infected my brain and nervous system causing panic attacks and seizures and other neurological problems. I require those medications temporarily until my treatment is complete.”
Her: *unconvinced look in my direction over her glasses* “Grand Mal or….?”
Me: “No, focal seizures.”
(Then some blah blah conversation ensued about how going forward at my next yearly appointment she wanted to address my hormonal imbalances carefully due to the anti-seizure medication I was on, blah blah.)
Me: “My hormonal imbalances have become nearly normal through my Lyme treatment and I don’t anticipate being on my seizure medications for very much longer as the seizures are improving and will go away once my treatment is complete. So that will be a non-issue once by that time. I can provide you with my prescribing doctor’s information if you have concerns about any of this…”
Her: *blatantly ignores me*
Guys (and uniformed doctors), neurological Lyme (Neuroborreliosis) CAN and DOES cause seizures. I feel like talking about it today. And so I will. I also plan to bring maybe a little levity to the topic. Because I can. And so I will.
In general, a seizure is defined as abnormal electrical activity in the brain. Most people hear “seizure” and immediately picture the scary grand mal dangerous seizure types. However, sometimes there can actually be little to no noticeable symptoms at all. There are many different types of seizures and many different causes. Lyme Disease most frequently causes focal or partial seizures (same thing, different label), which are far less severe and usually do not require immediate medical attention (hence, I can inject a bit of levity today without coming off callous). Other causes of seizures aside from Lyme are different brain infections like meningitis, encephalitis/brain swelling, head trauma, drug interactions or substance abuse, high fevers, heavy toxicity, heat stroke, abnormalities in glucose or sodium levels and other like things. Sometimes they just happen for no darn reason at all. Stinkin brains. Fortunately, for the general population it is rare. It’s the Lyme-focal seizure connection that I am gonna focus on today, cause, really, its been my life this past year and sometimes people just don’t get it (through no fault of their own). Besides, I just wanna be like a Lyme teacher sometimes. M’kay?
It is speculated Lyme causes these really fun things through many different avenues similar to other dangerous brain/nervous system infections. They can interrupt normal brain functioning by causing brain swelling/inflammation or brain disorders/encephalopathies. Also, Lyme and Lyme treatment can and will cause toxin build-up which happy make, brain not. It is believed that Lyme Disease also interferes with nerve conduction impacting the way the brain can send electrical messages throughout itself and the rest of the body. Lyme can also impact proper neurotransmitter functioning as well as cause damage to the brain and nervous system (think demyelination and brain lesions typically seen in Multiple Sclerosis patients) which will also make wacky things happen. My seizures followed a slow, downward spiral of progression beginning almost immediately when my health bottomed out overnight – though I had no idea I was experiencing them at the time. Prior to my diagnosis, I would experience 1-2 second blackouts (a blunted message transmission, if you will). It simply felt like life fast-forwarded suddenly to a few seconds in the future. Hated it. They slowly progressed and then once treatment for my Lyme began, my seizures progressed rapidly to episodes like those I will go on to describe below. But basically, it was a mess.
Toxin build-up obviously contributed greatly based on how the timeline of my seizure progression coincided with my treatment progression. At this point, many will (and have!) chime and say “You are doing too much!”, “You shouldn’t go so aggressively!”, “Those antibiotics are harming your body!”, or my favorite, “You are poisoning your body!”.
To them I say shush, I ain’t asked you for any advice.
I have reached the apex in my aggressive IV therapy and am just now starting to come back down the other side of the mountain. Throughout my IV treatment I have been carefully monitored, and guess what, everything is going fine. My liver hasn’t caught fire. My kidneys haven’t exploded. My brain hasn’t become cauliflower. I’m a lot better now. I am NOT one to be afraid of a little suffering if it means getting my life back. And to jump off topic and inject my own personal opinion here, sometimes I think a lot of neurological Lyme suffers (barring other health complications that would make such an option non-viable) hold back on aggressive treatment when they need it, just because they fear things like this. I get you. I was scared too. But, we’ve got bacteria in our brain. Uh, get it out. The other side is worth it. Okay, back to seizures.
I am usually able to tell when I am going to have a seizure. Doctors sometimes call this an “aura”. It can be things like spots in your vision, abdominal pain, nausea, fear, anxiety, or feeling dizzy, people may do bizarre things like undress or walk out in to traffic, repeat words or phrases, scream, laugh, cry, the list can go on. Everyone is different. Thank the heavens I resist the urge to undress and run through the neighborhood, that would have been irreparable social damage. Instead, I just get weird. I become, not myself. Internally, a wash of some type of anxiety-type feeling comes over me and I become very restless. I turn completely inward and everything external disappears or becomes muted or “far away”. I feel like something terrible is going to happen. If I am alone I will get up and go quietly sit or stand by someone, but I do so weirdly… unresponsive almost. Zombie-like almost.
I realize this is creepy. I’m oblivious to it at the time, but looking back, I’m assuming it was bizarre behavior based on the expressions I would notice in the faces of my husband and parents during the buildup to the worst of my seizure episodes. So…
As the feeling of distress builds internally and I realize sitting by someone isn’t helping, I will get up again and usually either start to walk from room to room in the house, sit on the floor suddenly, or go somewhere away from others. I will not be able to verbally express what is wrong when I am asked. Instead, I usually begin to uncontrollably cry or sob. I couldn’t explain to you why if I tried. By this point, abnormal electrical activity in the brain has already started and the seizure is well under way. It is truly a terrifying and disturbing sensation if you are not used to it. I am so glad the worst of these seizures seem to be resolving for me.
So, let’s talk briefly about the different types of seizures one can enjoy, starting with generalized seizures (seizures where the abnormal brain activity usually spreads to both sides of the brain).
Plain and simple, these are characterized by repeating and sporadic full body jerking and twitching. Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don’t last more than a second or two. There can be just one, but sometimes many will occur within a short time. This form of seizure can accompany other types of seizures. This was a common one for me and can be painful if arms jerk strong enough to hyper-extend or something. The best way to describe it is if any of you have ever experienced that jerk that will abruptly wake you just as you are about to fall asleep, that’s it. Now do it 20-50 times over the course of 5-15 minutes while fully awake and you understand myoclonic seizures a bit better. Sometimes there can be no rhyme or reason to this kind… I’ve had several hour spans of time pass where I will jerk 1-30 times a minute.
I’ve only had this one a few times and it is my least favorite by far. It is terrifying. Atonic seizures cause a sudden loss in muscle tone, yet the person remains conscious. If you are standing, you will fall to the ground in a heap. If you are sitting, you will slump and fall over. If you are laying, you will, well, continue laying I guess. I had my first atonic seizure before I even knew what it was. It felt like someone just hit my head with a stupid stick and I slumped over during a trip in the car and across my husband’s lap. I felt like I was going to black out any second and die. It was truly one of the worst experiences, mostly because I had no idea what was happening to me at the time. When it was time to get out of the car I literally just fell out on to the concrete. It took me hours to be able to stand and a few days before I could really walk upright and normally. Tara does not like these seizures. Thankfully, since being put on an anti-seizure I have not had the pleasure of enduring this form since.
Opposite of atonic seizures. These consist of extreme and unrelenting muscle rigidity or stiffness. Also conscious.
“Clonus” means rapidly alternating contraction and relaxation of a muscle — in other words, repeated jerking. The movements cannot be stopped by restraining or repositioning the arms or legs. You are having a clonic seizure when both sides of the body are enduring repetitive and rhythmic jerks at the same time. I’ve not had this in a rapidly moving fashion – which does not sound fun. Do any of these though, really? Let’s be real. However, I have had sort of slow-motion clonic seizures where my muscles would alternate between strong contraction and sudden relaxation. These muscle spasms would include my diaphragm and would prevent me from breathing during the contraction part and last anywhere from 5-15 seconds. My fingernails would also dig into my palms unless my care-takers pried them open and kept them open.
Absence Seizures/Petite Mal Seizures:
These are seizures where the main characteristic is a brief loss of consciousness, or “spacing out”. (Maybe cats just have absence seizures all day long when we think they are just ignoring us. Food for thought). Most often there is no responsiveness or awareness on the part of the patient when this occurs, even though eyes often remain open. It becomes an “atypical absence seizure” if the loss of consciousness is accompanied by more gentle forms of uncontrolled muscle activity like blinking, hand movements, or the muscles switch back and forth between contracted and relaxed. I am lucky that my seizures never took me to total loss of consciousness. Or maybe it was a curse. I’m still debating.
Here is your grand mal seizure. Light-hearted image not necessary. Loss of consciousness precedes the jerking and the person is a danger to themselves at this point. I am not going to go further in to this as it is not terribly common in Lyme Disease. And we’re talking about Lyme Disease here. And seizures. Both. But not grand mals. Okay, moving on.
These are characterized by the abnormal electrical activity remaining in just a specific portion of the brain. Focal/partial seizures always allow the victim to remain fully aware during the entire event. With focal seizures, you only (only… hah!) can experience simple motor, sensory, or psychological changes. Your arm may being to tremor or your leg may begin to twitch. Your head may begin to bob or you may hear, smell, or taste things that aren’t really there. You may feel like you are being touched when you are not. You may be bombarded with certain memories or experience brief mental instabilities. I like to call it basically anything weird that you can’t control that blows in and out like a little storm.
There are a few more specific forms of this type of seizure. Keep on reading you guys! Unless you’re so over this. In that case, don’t. My stats still show you came… mua hah hah.
Gelastic and dacrystic seizures:
Ah, my most common seizure. Laughing or crying for no reason. Literally no reason at all. I am blessed with the crying presentation. It is believed to originate in the hypothalamus part of the brain. The hypothalamus is very connected to your limbic system, which can contribute to expression of emotion. When I told my doctor my “episodes” were always accompanied by uncontrollable crying – like the ugly cry kind of sobbing… He asked “Any laughing?”. I was like “…wut”. That sounds more fun. As if I was getting a jip in my seizure experiences. He assured me that his patients who experience the laughing kind in no way enjoy them at all. I guess a seizure is a seizure, eh? My gelastic/dacrystic seizures almost always accompany another type of seizure. It took everyone a while to figure out my crying wasn’t because I was sad or in pain, it just was.
Complex partial seizures:
Typically just involuntary movements like lip smacking, fidgeting, chewing, snapping, etc. Sometimes people don’t even know they are having a seizure. I’m not sure if I fit in this category, but I have had a few seizures where I could not stop clawing at my throat. My husband and parents would have to hold my hands down to prevent me from literally tearing through my flesh.
There are more, but frankly, I’m tired of this, and the rest never applied to me (selfish, I know). Check out my source link at the end for information on all of the different and wonderful ways the brain can start sizzling like a circuit board that has had water thrown on it.
Seizure Triggers: (because ain’t nobody got time for that)
Common triggers that Lyme Disease patients report include bright lights, flashing lights, loud noises, becoming startled, hunger, lack of sleep, stress, strong herxheimer reactions, over-stimulation (ex: hello movie theaters, restaurants, being around a lot of people or children, being woken up from sleep far too quickly, etc.) or hyperventilation (keep in mind that many epileptics and other non-Lyme sufferers with seizure disorders also report similar triggers). For example, just the other day I accidentally knocked over the salt shaker on the table and it made a loud noise. Suddenly my brain felt weird and I could tell I was going to begin sobbing. I covered my face and felt like I needed to pace the house for no reason as I sobbed. It was over and done within a minute or two. Another recent episode happened during a day of heavy detox which mobilized a lot of toxins in my head and I became weird for a bit. I am usually a reasonable person, but this particularly good dacrystic seizure had me staring wide-eyed around the room crying and telling my Dad I was dying and going outside of myself now. Man, props to my parents and husband for getting me through these.
There was a few months during an intensification period of my IV treatment that I experienced an increase of my seizure activity despite enjoying a brief respite from the darn things after being put on a few anti-seizure/epileptics. They would range from just feeling a sudden and dramatic drop in levels of awareness or consciousness (think awake but drooling and staring at a wall) to my worst which were weird Tara being weird until I ended up in bed or on the couch sobbing with uncontrollable twitching, involuntary movements, full-body jerking, and my favorite, those full body muscle spasms that would rhythmically contract and relax and keep me from breathing. These never lasted more than about 15 minutes and would leave me completely exhausted and nauseous afterwards. Thankfully, these episodes have dramatically decreased as of late… woo hoo to getting healthy again!
To sum this whole thing up… Neurological Lyme causes mayhem in the brain, our major control center, and makes life chaotic and unpredictable until it is properly treated. Detoxing is of the utmost importance in preventing some brain toxicity as bacteria are killed and their cells bust open to release all of their nasty bacteria poisons. Much of this can be controlled to a large degree through proper medications while you go through the treatment process. Don’t hesitate to ask your doctor about this possibility if you feel yourself going over the edge and into the world of Lyme-induced seizures.
Also, guys, I’m no doctor. Obviously. Talk to a real one before you go off diagnosing yourself or trying to self-treat. Respect the seizure.