Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Lyme and Seizures, an Unhappy Marriage.

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.

I used to be normal

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.

sassy

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.

seizure builds

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).

Gen Seizures

 Myoclonic seizures:

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.

 

Atonic seizures:

atonic seizure

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.

 

Tonic seizures:

tonic seizure

Opposite of atonic seizures. These consist of extreme and unrelenting muscle rigidity or stiffness. Also conscious.

 

Clonic seizures:

clonic seizure

“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:

absence 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.

 

Tonic-clonic seizures:

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.

Focal Sei

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:

laughing seizure      crying seizure

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.

Source: *Source*

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28 comments on “Lyme and Seizures, an Unhappy Marriage.

  1. Erik Kemnitzer
    July 10, 2017

    Tara,

    Excellent info. Just out of curiosity, did you ever experience any other symptoms of Lyme’s disease? Or have you heard of anyone whose ONLY symptom of Lyme’s disease was seizures?

    Thanks,
    Erik

    Like

    • tarathackeray
      July 10, 2017

      Erik, I haven’t, but I wouldn’t think it’s out of the realm of possibility. I have heard of some who’s only symptoms were psychological issues, so anything is possible.

      Like

  2. Colleen
    May 25, 2017

    Hi Christina,
    I also have late stage Lyme seizures that sound very much like your daughters. I start off dizzy or with a migraine and start feeling myself “spacing out” and a few minutes later come some of the symptoms listed above (miserable). This happens almost daily and lasts for hours. If I were you I would get her a Lyme disease blood test but if it comes back negative don’t be give up on Lyme. I have been everywhere trying to get diagnosed (for 2 years) and the doctors have treated me the same way they have treated you and your little girl. They would dismiss me because my symptoms don’t fit their definition of a seizure and also I was so healthy (and I look healthy) before this whole nightmare began. I will say, Dr. Smith from Lymestop.com helped me a great deal and confirmed what none of the blood tests could– that I was riddled with late stage Lyme disease.
    I am slowly getting better. His technique does not involve antibiotics but it does work :).
    I’ve done hours of research and lived through my own horrible experience the last several years and I would be suprised if your daughter didn’t have Lyme disease. It is unbelievably common now and your daughter fits the profile perfectly (unfortunately). The sooner that you can figure out that it’s Lyme disease the better her chances of fully recovering.
    Good luck and I’ve included my email in case you would like to ask me about my journey!

    Like

  3. Christina
    February 19, 2017

    Thank you so much for sharing your experience. My daughter has an undiagnosed seizure disorder that is being considered for conversion disorder. My maternal instinct tells me it has a physical cause. We lived years in the country, and have visited my brother in Virginia where I observed dozens of tiny ticks jump onto my bother’s hairy legs as we hiked to the river. I didn’t know about Lyme disease; this was 17 years ago. I’m wondering if my daughter’s seizures could be a result of later stage, untreated Lyme disease. The couple years previous to the seizures were rife with headaches, dizziness- she’d even fainted a few times. The doctors can’t be bothered to put their detective caps on and explore this with us, in fact 3 neurologists have turned up their noses when they found they were non-epileptic seizures. Sigh. This article gives me hope because your symptoms/seizures sound identical to hers….maybe there’s treatment that will actually make these seizures and symptoms stop! Thanks again, and may your treatment prove successful 🙂

    Like

  4. Pingback: “Lyme Seizures” are so bizarre. | Lyfe

  5. Laurie
    November 5, 2016

    This is fabulous. Thanks a million.

    Like

  6. Dani
    September 13, 2016

    Hi,
    Just wondering if you managed to come off your anti-convulsive medication following treatment of your Lyme?
    I have had multiple seizures this year which have now ceased with Keppra. This still affects my energy levels and it is not something I want to be on long term. Im currently a year into oral ABs and am hopeful that in time I will beat the Lyme and be able to come off the Keppra. Guess I’m just looking for some reassurance that this is possible!

    Like

    • tarathackeray
      September 13, 2016

      I’m slowly titrating down but don’t fully expect to come off it until maybe next year. In time you will beat it and your body will tell you when you don’t need the medications anymore. At least that’s been my experience so far!

      Like

    • Trish
      October 12, 2016

      As I am reading all of this, it makes me believe my daughter may have lymes too. She hasn’t been tested but she just started taking anti-seizure medication. What test did you take to determine whether or not you had lymes?

      Like

      • tarathackeray
        October 12, 2016

        I saw a Lyme literate medical doctor (you can get a referral for one through ilads.org or on my find a doctor tab. There are various tests, but blood testing is notoriously unreliable. That’s why seeing one of these Lyme specialists is so important… they diagnose clinically by and large.

        Like

  7. marian
    June 30, 2016

    Oh my Tara does this get better? I’ve started new treatment with my new llmd ( same Dr as yours) and my seizures and convulsions have increased dramatically. I can’t take care of my son and basically cry the whole day.

    Like

    • tarathackeray
      July 3, 2016

      It does I promise! They just got worse for me over the first year and then dramatically began to improve. I’m no longer plagued by them. Hang in there ❤️

      Like

  8. Connie Moschell
    June 1, 2016

    This is an amazing article describing the different types of seizures Lyme patients suffer. Thank you for sharing!

    Liked by 1 person

  9. Bec
    February 7, 2016

    Super informative… must’ve been a lot of work on your part. Thanks, T.

    Like

  10. Pingback: Saturday in the Park | Lyme and a Coconut

  11. LymieLovesJesus
    August 8, 2015

    Tara, wow, you saved me today. I had my first “seizure.” I realized after reading this post that I’ve been having seizures of some kind since starting treatment. After watching Under Our Skin earlier this year (before I was diagnosed with chronic lyme but after I suspected I had it) I was terrified of getting the types of seizures she had in the film. I have spent all this time fearing – greatly fearing – that potential reality. Today, I had my first seizure and BECAUSE I READ THIS PAGE I actually knew that what I was experiencing was a focal or partial seizure. It had a name. it wasn’t “just me” or “all in my head.” I knew it was real and I knew I’d be ok. So a huge thank you for sharing your experiences and thoughts. It surely benefited me today!!

    Liked by 1 person

    • tarathackeray
      August 9, 2015

      This makes me happy – NOT for your seizure (I’m so sorry!) but that you had clarity as it happened. It really does help take away some of the fear. Stay strong and push through sista! 💚

      Liked by 1 person

  12. Michele
    July 16, 2015

    Very useful, thank you!! After a normal MRI and EEG both my regular doctor and neurologist said my seizures and subsequent mobility problems/spasticity were just psychiatric, which was both frustrating and confusing (I have Lyme too).

    Wondering if you have any thoughts on this – a few times I’ve gotten something I call a ‘standing paralysis’… it’s like I’m walking and over the course of 5 seconds, it’s as if my legs ‘run out of steam’ or I’m a wind up doll who unwinds. I’m able to continue standing but it’s like my feet are frozen in place and I can’t move. I’m usually frozen for about a couple minutes, then I can start to walk again but very slowly and labored. Anyway I never thought that might be a form of seizure until this article. Isn’t Lyme fun? Lol. 🙂

    Liked by 1 person

    • tarathackeray
      July 16, 2015

      Michele, never had an EEG done personally but my MRI was normal too. I’m sure your “windup doll” phenomenon is seizure-related. There is no end it seems to what they can do, and so few people know that!

      And oh yes, very fun 😉

      Like

    • Did you specifically have a Lyme Literate Neurologist read the MRI? I had a ‘regular’ doc read mine and he had no mention of Lyme, but saw at least one lesion. His determination was “no MS”. Not especially helpful. If you did not have a Lyme literate neurologist read it, maybe you could get your actual scan to one and get more help.

      Like

      • tarathackeray
        October 14, 2015

        Great point. I did not. However, I’ve been seizure free since the beginning of this year. I believe I’ve recovered for the most part from that issue. Yay to getting better! I hope you are doing well, wherever you may be in your journey to healing. Thanks for the helpful comment – hopefully others see it.

        Like

      • Very interesting! Yes I wonder what would happen if a more savvy doctor read my test results rather than my GP – when I was having more seizures, they did the neuro exam in the ER and I couldn’t walk heel to toe AT ALL without falling over, but they still said I was normal and fine(?). After a couple months without seizures I can walk heel to toe fine, so clearly something was damaged that healed. That’s one of many examples where I had my doubts about if my tests were actually fine. It can be frustrating because even if you have abnormalities, they only take it seriously if you’re like dying on the floor with your eyeballs falling out (they probably wouldn’t even take that seriously if you have Lyme). Anyway thanks for the advice.

        Liked by 1 person

  13. Pingback: Focal Seizures? Atonic Seizures? | The Lyme Bean Chronicles

  14. bloggerlenny
    March 24, 2015

    I am so glad to have stumbled on your blog. Great writing! This page in particular caught my attention because of the way you describe things my daughters (age 18 and 15 who have LD) tell me, and do…. I have copied bits and pieces to a blog page of my own, just to try and help me make sense of what’s going on with them. If that’s not ok please let me know and I’ll remove it. Thank you!

    Like

    • tarathackeray
      March 24, 2015

      Thank you, so glad I could help someone. I am ok with copying as long as you also state and link to the source… This is my writing 🙂 Thank you!!! 😊

      Like

  15. Gail
    February 2, 2015

    Thanks for teaching this nurse about seizures. Very helpful.

    Like

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