An update on my broken brain and an unexpected diagnosis

When I posted my blog in January, I had experienced four amnesia episodes. I had three more after that, the last one being on February 9. And then as quick as they started, they were gone. When they first started, because of my medical history, it was assumed they were seizures. When I saw the epilepsy specialist initially, I had only experienced two episodes. After a few more, he agreed with what I suspected all along – they weren’t seizures. I think the biggest flag for him was how long they lasted and also that I always had a headache after my memory came back. He read some case studies and said that he believed they were a rare (OF COURSE) migraine called “confusional migraine” – which is also what the family doctor I saw after the initial episode suggested. My epilepsy doc said based on the information he read the confusion can last a few hours to days (yikes!) and usually a headache is involved. So, that definitely provided some relief – and for reasons I don’t really know – my migraines had quickly subsided during all of this, which makes sense that if it’s a migraine, why they also stopped. It’s like my brain was so scrambled from all the ocular migraines I was having it didn’t know what to do but go one step further/worse and make me lose my mind. After this realization it did make me wonder/question if the transient global amnesia I had back in 2008 was amnesia after all – definitely could have been a confusional migraine based on this info. So, as of now the confusional migraines have stopped and I’m praying they stay away.

As I mentioned in the previous blog, I was also seeing a neuro eye doctor to help figure out why I was having vision issues – specifically blurry and double vision. I went to a follow up appointment in April, thinking it was going to be a waste of time. He asked how I had been doing and did a physical exam. He then, almost as an afterthought said, “Your bloodwork did indicate you have something called myasthenia gravis.” In true Jodie fashion, when I get bad news I like to crack a little jokey joke to try and lighten the mood so I responded with “Um, can you spell that for me – I definitely didn’t learn that one in my semester of medical terminology.” And yes, I did actually take that class. Anyway – he spelled it and said we didn’t need to treat it unless I have muscle weakness or trouble swallowing. As I got into my car I started to panic a bit, I should have asked more questions. As I drove home from Owosso, my mind spiraled. And honestly, it didn’t help once I got home and started to google the condition. Myasthenia Gravis is (wait for it and prepare not to be shocked) in true Jodie fashion, again - a RARE condition that affects the voluntary muscles. If it gets really bad, patients have trouble swallowing, breathing and talking. This is called a crisis and patients are admitted to the hospital for treatment which can include being put on a ventilator to help your body rest and recover. Also of note, sometimes when you take a drink it may come out your nose. EXCUSE ME – ABSOLUTELY NOT was my first reaction. And you may have facial drooping where your smile looks like a snarl (Meh, I probably snarl more than I smile anyway). But also, NO THANK YOU.

Now – four months after diagnosis and following a visit to Dr. Twydell – a neuro muscular doctor in Grand Rapids who has experience with MG - I can make some jokes about it, but it took me a while to get here. I kept the information mostly to myself while I waited for my appt with Dr. Twydell. He was amazing – he knew about the disease and could provide me information about what progression might look like and also treatment options, but he also gave me reassuring stats like, if a patient doesn’t go into crisis 1-3 years after diagnosis, they probably won’t. He also let me know about medicines I should avoid because they can exasperate MG symptoms. He made a very terrifying diagnosis feel manageable and I’m so thankful for that. As of now he is considering it Ocular Myasthenia Gravis – which means it is only impacting the eyes. But I am having some other symptoms that might be indicative of General Myasthenia Gravis – like limb weakness, difficulty swallowing and fatigue. The confusing part is those symptoms can also be as a result of Sjogren’s – which I also have, so for now we don’t really know which disease is causing my symptoms. He said the fact that I’ve been on an immunosuppressant medicine for years (I was originally diagnosed with Undifferentiated Connective Tissue disease 15ish years ago) may have helped slow the progression of MG, which is also an autoimmune disease. What I do know is I am in very good hands with Dr. Twydell if and when the disease does progress. Also, as we were ending the appointment he said, "looking at your medical history and seeing the seizures, Sjogren's, Myasthenia Gravis, I really didn't know what to expect walking in here today, but you are a very neurologically healthy individual." Y'all, this poor man thought he was walking in to a patient in some sort of vegetative state or something. Apparently I present better in real life than my medical history would suggest, so I guess I got that going for me. 😂

For now, life goes on, and I remind myself of what I said after Francesca was diagnosed with galactosemia. There is no point in worrying about what will happen in the future. If it doesn’t happen, I’ll have wasted so much time needlessly worrying. If it does happen, the time I spent worrying will not change the outcome or improve my life in the meantime. So, I give it to God in hopes that my symptoms remain mild and that I can find the good in this diagnosis and use it for His glory. AAAAND also I keep hoping my drinks don’t start shooting out my nose.

I'm guessing that even if I tell you not to – you’re probably going to google myasthenia gravis. A lot of the information is terrifying. But I keep reminding myself they call it the snowflake disease for a reason – because everyone’s experience/symptoms/severity is different. If you want to learn more, check out these sources I have found helpful since being diagnosed.

https://myastheniagravisnews.com/myasthenia-gravis-symptoms/

https://myasthenia.org/

https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

P.S. If you saw my Facebook post about the Granger garbage truck with my favorite bible verse on it (Be still and know that I am God - Psalm 46:10) – Dr. Twydell was the specialist appointment I was referring to.

Your “right to bear arms” will NEVER be more important than my kids’ right to breathe. NEVER!

 

Unpopular opinion. The right to bear arms is no longer a right. It’s a privilege. Opponents of gun control say over and over “but my right to bear arms, it’s in the constitution.” The truth is – the constitution wasn’t about the general carrying of arms for all people. In almost all historical context it is referring to a military purpose. People are dying every day because of this misinterpreted and antiquated “right.”

Your perceived right to bear arms is not more important than my child’s right to live. Far from it.

The phrase “let freedom ring” has turned into the right for people to defend their ability to have guns and shoot wherever, whenever they want. What the phrase should symbolize is the freedom to let the school bells ring, a sign of safety for our kids. To allow our kids to go to school and feel safe and not be afraid that they are going to die.

A lot has changed in our constitution since 1788. When we know better, we do better. Like making slavery illegal and allowing women to vote. Or at least we should. And yet, that isn’t happening with gun laws. And it is having deadly consequences. And lately those consequences are hitting way to close to home for me.

This world is too broken for it to remain a right. It meant something different back then, a time when semi-automatic rifles weren’t created, a time when people weren’t using them against their neighbor or groups of innocent strangers. Gun violence is out of control. Gun reform is needed.

I know, I know “but my right to bear arms!” Here’s the thing, no one is trying to take guns away from a responsible gun owner. But there must be checks and balances to make sure that only responsible citizens are the ones getting guns. Right now, that isn’t the case. And too many innocent people are dying.

There are so many things in life that require age restrictions, background checks, tests to be passed – before we are allowed to do them or have them. Most people are eligible for a driver’s license – but they must do things to make sure they know how to drive safely before they are allowed out on the road. If they abuse the privilege, it can be taken away. If there is a justifiable reason why they shouldn’t be allowed to have a driver’s license, then they can be denied. Because it’s not just about the individual’s wants and needs and perceived rights. It’s about the protection and safety of others.

The idea of “let freedom ring” is making our country an unsafe place to be. It’s not freedom at all. It’s making our schools a prison.

I wrote the above on July 4 after news of the parade shooting in Illinois. But I thought of it this morning as I tried to process last night's events on Michigan State University’s campus. 

We don’t have kids on campus, but I have many friends who do. And I have many friends who work there. And my husband is there several days a week covering a game or doing interviews for his job as a sportswriter for the Detroit Free Press covering MSU men’s basketball and football. In fact, he was on campus last night, but thankfully he left around 6 p.m. The shooting happened a little after 8.

I felt similarly a little over a year ago when the school shooting happened at Oxford high school, just a few hours down the road. I always knew it could be us, but that made it feel much more likely that someday – if things don’t change - it will be us. We live across the street from a high school, and I work remotely. What am I going to do when a group of students comes running to my door asking to be let in because someone is shooting in their school? What if the shooter is among them? How will I know? What will I do? AND WHY DO I HAVE TO WORRY ABOUT THESE THINGS. But I do.

And then last night happened. A short 10 miles down the road; a place where so many people I know and love frequent. A place my husband goes multiple times a week. The campus where we said our vows and took our wedding pictures. I am sick to my stomach. I am numb. I am angry. I want to cry and yet I can’t. I just know something needs to change.

I’m not here to argue with you or your reasoning. Your love of guns and need to be able to do with them as you please will NEVER be more important than my family’s right to feel safe and be alive. Your “right to bear arms” will NEVER be more important than my kids’ right to breathe. NEVER.

My Broken Brain

When I’m stressed, I write. When I’m sad, I write. When I’m struggling, I write. And since I’m all those things and more, I’m going to write. Maybe it will be beneficial to the doctors, maybe it will help me figure something out I haven’t yet put together or maybe it will just help relieve some of the mounting anxiety I can’t seem to shake.

I had my fourth “amnesia episode” on Thursday and I’m heartbroken. I had convinced myself (based on nothing but speculation and hope) that the migraine medicine I had been taking on an onset of a migraine, was causing it. There is a warning to not take it more than 3 days in a row, and while I didn’t – my migraines have been non-stop since September, and I had pretty much been taking it 2-3 days in a row with a one-day break. So, I thought maybe that could be the cause. But I haven’t taken my medicine in three weeks, and I still had an episode. Back to the drawing board.

So, to start at the beginning – well sort of – I used to have complex partial seizures. I would be in an altered state of consciousness and would repeat things and fidget. I would know when I was going to have one and would come out of it after 1-2 minutes, not remembering anything I said or did but would quickly regain my composure and go on with life.

When I was first diagnosed with epilepsy, we tried several different medications, but they either didn’t work or I had negative side effects. After doing an extended stay in the epilepsy monitoring unit they determined the seizures were coming from scar tissue in the hippocampus of my temporal lobe. They determined I was a candidate for surgery, which I had after my college graduation in 2004. I slowly tapered off my medications and was great until 2008, when I had a bout of Transient Global Amnesia. I had a band of light block my vision during a work meeting and immediately called my eye doctor. They had me come in to rule out a detached retina. They said it was an ocular migraine and sent me home. Somewhere during my drive home, I became confused and called my sister. I told her I didn’t know where I was, and she asked if I was home. I said yes because I was in front of a red door (my apartment at the time). She realized something wasn’t right and sent my brother-in-law to come check on me – who in turn called an ambulance. It would be years before I would remember a lot of these details, but I now remember hearing the sirens and saying, “they are coming for me aren’t they?” And then, “Andy, what’s wrong with me?” I was obsessed with the fact that one of the EMTs looked like a friend of Andy’s (which he did not). While at the hospital I continued to be confused and asked the same questions repeatedly for 6 hours. My mom, who had been on her way back home to Saginaw, came back to the hospital. Thankfully the ER doctor recognized and diagnosed the Transient Global Amnesia right away. They increased my seizure meds (although they didn’t say it was a seizure) and they did an MRI. During the MRI they found a “cyst” of fluid had formed in the surgery site, where the scar tissue had been removed. The thought of having a cyst in my brain grossed me out so I called it a “bubble.”

For about 6 hours I asked the same questions repeatedly, and my sister wrote down all the answers on
an envelope. After I would ask them all I would say “Have you seen 50 First Dates? I’m 10 second Tom. OMG I probably already said that, I must be so annoying!!” My mom said she knew I was coming out of it because I quieted and just studied the envelope. Once my memory returned, they sent me home. A few months later I had a seizure at work. It was different than anything I experienced before, I had a filmstrip of old dreams going through my head and I was very confused. But eventually I remembered the “bubble” and it was reassuring because I assumed that’s what was causing it. In 2008, they decided to operate again. If I remember right, it was only the second time they had seen this happen in their 20-some year career and the first time they decided to operate again. They went in and popped the bubble (or removed the cyst if you want to be technical). It was a much easier recover than the first surgery and I did great. I was even able to go off all my seizure medications. Seizures were a thing of the past. Until October of 2022.

My friend and retired co-worker Deb came over for dinner on Oct. 13. It started out fine and completely normal. She went to pick up her dinner and during that time, I got confused. I was sitting on the couch, and I couldn’t remember what was going on. I didn’t know if Chris was home. I was unsure where Deb went, and I still can’t tell you where the kids were (probably right there or in the playroom). I called for Chris, and he came upstairs, and I asked him if I’d had amnesia before. I told him I feel like it was happening again. I then repeated “I don’t have time for another brain surgery.” Which is 100% true…but I also don’t have time to keep losing my damn mind. Anyway…he explained that yes, I had, and Deb went to pick up dinner – which made me panic because I didn’t remember ordering dinner. Thankfully, I had. I slowly started to come around as we waited for a call back from the on-call doctor at my office. My blood pressure was very high, but otherwise I was acting more like myself, but still not remembering everything that had just happened over the last hour or two.

The next week I had a follow up with another doctor at my office. She wondered about my seizures but also said it could be related to my complex migraines. I told her I had experienced some heart palpitations lately, so she did an EKG and said it wasn’t great – but there also wasn’t anything noticeably wrong. It was just very high.

At another follow up, with my actual doctor this time, she decided to put me on a medication that she was hoping would calm my heart rate down which may inadvertently help with my blood pressure and anxiety.

A couple weeks later I had an MRI which came back as normal (for me) with consistent post-surgery changes. Nothing out of the ordinary. I was somewhat surprised by this because the episode that happened was so much like the episode that happened when I had the bubble. But no bubble. Don’t get me wrong – I wasn’t hoping for one, or another surgery – but I was hoping for something obvious and fixable…so I would be back to living in the constant fear of life with epilepsy. But here I am. At my follow-up with my migraine doctor, they jumped right to seizures – due to my history, which is understandable. But I still wasn’t convinced. They also prescribed Keppra, one of the medicines I had been on before my surgery. If I’m being honest…I didn’t take it right away. I know the epilepsy specialist appt was coming up and I wanted to get their opinion to see if it was really necessary. 

But, before I could get to that appointment, I had another episode. I was running errands and waiting for my Target pick up order…and I lost my mind, again. I called my mom and said “something is wrong” – she called my sister who came to my rescue. When talking to my mom I was very confused and panicked that I left the girls at home alone. I eventually realized, on my own, that they were at home and safe with Harper. I kept telling Dawn I needed to go in for my Target order, even though they had already brought it to my car (don’t remember that at all so very sorry if I was a weirdo to the poor Target worker.) I slowly started to piece together that something was going on with my seizures again. At this point, we decided I should go to the hospital – just to make sure we weren’t dealing with anything like a stroke or brushing off a serious situation. I went by ambulance (which staring at the $500 bill on my desk now seems a little excessive, but here we are.) The hospital was packed. I sat in the hallway for a while and then an intake room. When I finally saw the doctor that poor, sweet man said I had a “very complex medical history.” Bless his heart. I told him I usually just say I’m a medical mishap. He confirmed they were ruling out a stroke and running some other tests to see if we could figure out what was going on. Eventually I was moved to a very uncomfortable reclining chair in a giant room of chairs separated by banners. Cozy it was not. They kept saying they were going to admit me and put me in a room, but it never happened. They started me on the Keppra; they gave me a very high dose and coupled with not eating for hours in the ER I got pretty lightheaded but ended up being okay. I was sent home on the Keppra with instructions to follow up with the Neurologist.

Chris and I headed to Grand Rapids on Dec. 13. I wanted to go back to Spectrum because that is where my neurosurgeon was, and while I didn’t anticipate needing surgery – if they needed a consult on anything, I wanted him to be the one. Unfortunately, I found out that Elisevich has retired – but I liked the doctors we met with so I’m still glad about the decision. I had done a lot of plotting out symptoms and dates and thoughts all over my office, so I complied them into a document and took them to my appointment. I don’t know if he was lying or not, but the nurse said it was very helpful. We met with a fellow first and talked about my history, and what was happening recently and my thoughts on the migraines vs. seizures vs. amnesia. He asked a lot of questions and listened.

I also got a pretty bad migraine in the middle of the appointment (my migraines involve lots of bright lights that can make me dizzy and disorientated if I don’t shut my eyes and lay down until it passes). Ultimately, he didn’t think we needed to bring me into the epilepsy monitoring unit at this point (I agreed), but he did want to get an EEG set up and agreed I should stay on the Keppra. As with a lot of medical things, it was just going to be a “wait and see” – see if the medicine keeps it from happening again, see if they get worse, listen to how people explain what happens and how I feel, etc. It’s a very uncomfortable place to be when you want answers and have zero. But I’ve been there before.

That night I was exhausted and went to bed after having an argument with my husband. (For our wedding someone gave me the wedding advice – don’t stay up all night trying to fix something. Get some sleep and come back together in the morning after a good night sleep and I love that advice so much…so I did.) But as I was trying to fall asleep, I started to get confused. I felt like I had those old dreams going through my head again – but as fast as they were there, they were gone, and I couldn’t recall what I had just been thinking about. I went downstairs and said “Did we go to Grand Rapids today? Am I having seizures again? Why are we fighting?” HA – my poor husband. And once again – slowly it all came back to me. I was sad because this was the first episode since starting the Keppra so if they are seizures, didn’t seem like the medicine was helping. I also think of the four episodes – this was the shortest, less confusing. But I have no idea how long I was laying in my bed before I went downstairs.

I sent a message to my doctor and went back to waiting for the EEG appt. Several people had mentioned the memory loss sounding like a drug reaction, so I stopped taking my migraine medicine. I was still taking my nighttime meds but not the meds for the breakthrough migraines. After a couple weeks of not having any episodes, my migraines not being quite as frequent and less double vision I was starting to hope maybe it did have something to do with the medicine. And then Thursday night happened. I haven’t been driving very far since all this started, especially with the kids. So, I pretty much just take them and pick them up from school one mile away (and pray for God’s protection over those two 30-minute time periods). The thing is, I don’t lose consciousness or control so I don’t expect anything terrible would happen. Based on what I’ve been doing I think I’d pull over and call someone who could tell me what the heck is going on. I still don’t want to chance it.

This was the first episode since stopping my migraine medicine, so I can’t blame that anymore – and it was the second since I’ve been on the Keppra. And I think this was probably the longest/most confused I have been. Thankfully Kari had picked Francesca and I up for gymnastics and a babysitter was with the twins. I had been looking through my phone for something (this I remember) and then I told Kari I was having crazy de ja vu. She thought I meant from looking at the photos and then I started getting more and more confused and she realized I was having an episode. She called Chris who was writing across the street, and he came over. I don’t remember much except asking her if she’d experienced this with me before and she told me she had heard about it but hadn’t been with me when it happened.

Every time I come out of these it’s like remembering bad news all over. I seriously am Drew Barrymore from 50 First Dates (minus the car accident with the cow thing) but it’s like every time I remember that I’m having suspected seizures again and every time it is so confusing and devastating. And this time as I was coming out of it, I remembered something was happening with my mom – that she was sick, and then that she had cancer. It’s like every time I come out of these with no memory and then they all flood back at once. It’s so unnerving. But I always know who I am, who people are, etc. I was once again super worried about where the twins were and asked Kari – who reassured me they were with the babysitter. When Chris got there, he asked me questions to test what I remember, some things I knew but most I didn’t. And I kept repeating “I’m so confused”. Thankfully I started to come out of it around the time gymnastics was over, I was able to talk briefly with the coach (and hopefully not be a total weirdo) and then head home. This one lasted longer and was more intense – Chris has a theory that the ones at home are quicker because I’m surrounded by kids, pictures, etc. and that helps bring me back quicker. The two longer ones were when I was at Target and at Gymnastics.

I feel so helpless right now. I keep telling myself hopefully this is just something annoying that won’t actually kill me or anything, so it could be worse. But it feels pretty bad. How am I supposed to take care of three kids (with their own medical needs) with a traveling husband, a full-time job and a mountain of other responsibilities? They need to figure this out and fix it. Unknown medical symptoms are never easy or fun but let me tell you – they are a whole hell of a lot scarier when you have a family of your own waiting in the wings. And I think that impact is shown by the fact that every time I come out of these episodes my first worry is where my kids are. I guess I should take solace in that and start worrying when I come out of it and say, “what kids?!”

The other thing that has happened every time, but I think I said out loud last time is, “It feels like there is a block.” Meaning – I know there are all kinds of things I should know, and just did minutes before but it’s like there is a black wall in my brain and I cannot remember anything I’m supposed to. The memory loss is one of the things that keeps me going back to the amnesia. I never had memory loss with my seizures. But I have a terrible short-term memory – due to the scar tissue being removed from the hippocampus, which is where our memory is – so that’s not new. Every time (including the episode I had way back in 2008 when I had the bubble, after the TGA) started with a reel of memories from old dreams I had. And then seconds later I can’t remember the dream or memory I was just thinking of, but I know there is something I’m supposed to remember and can’t – and then it all spirals into confusion and me being repetitive about something. Within about 30-45 minutes I start to come out of it and remember things that just minutes before I didn’t – like where the twins are, or that I ordered dinner. But there are still some things I don’t fully remember. I still don’t remember calling my mom from the Target episode.

Even though these episodes are very similar to the episode I had when I had the bubble – there is no bubble. So what is causing it? The whole thing is mind-blowing (pun intended) – and if it wasn’t happening to me, I think it would be a great book or movie – “The Adventures of the Lost Mind”. You make the episodes last longer – and have me do amazing things during the time, meet cool people and create fun memories – before my brain comes back together and regular life continues. I’ll need my movie and writer friends to get on that idea right away.

Anyway. I’ve spent a lot of time comparing the current episodes with that I’ve experienced in the past to try and figure out what’s going on. I don’t know what any of it means. I just know we need to figure it out and fix my broken brain. This is not the life I want for my family or myself. I’ve lived this paralyzed by fear life before and it’s no way to live. And while I’m trying my best to work through and overcome the constant anxiety – it’s hard. I just want to cry all the time. And I do, a lot.

Seizures

•  Complex Partial – diagnosed in 2000 but had since a baby
•  Zone out
• Knew they were coming
•  Smack lips
• 1-2 minutes
• Wouldn’t remember what I said, others didn’t know.
• Caused by scar tissue in brain

Migraines

• Complex – visual disturbances 25-30 minutes
• Hemipelagic – stroke symptoms – slurred speech, forget names, weakness/tingling on left side
  (30 minutes)
• Spike in migraines during third trimester pregnancy with Francesca (2014) and after pregnancy with twins (2018)
• Increase in complex migraines since September

Transient Global Amnesia

• Happened in Jan 2008 – lasted for 6 hours
• Started with visual disturbance/ocular migraine
•  Lost time (didn’t know how long I was sitting in front of my apartment)
• Repeated things
• Memory loss (remembered some years later)
• Had fluid in brain where scar tissue was removed– found on MRI

Episode/Seizure with Bubble

• Started with movie reel in head
•  Confused until I eventually remembered the bubble and then I figured it was due to that and felt better
• After this episode decided to have the second surgery

Current Episodes

• Start with déjà vu/familiar dreams and then a few seconds later the memories are gone and I cannot remember the memory I just recognized
• All started with losing time (don’t know how long I was sitting there before realizing I was confused)
• Repeat phrases/ideas
• Memory loss (still don’t remember everything)
• No warning
•  MRI normal (no fluid/bubble)
• 45 min – 1 hour

A few different doctors have mentioned they might be a very severe form of migraine. I do usually have a migraine or double vision within a day or two of having an episode. While all this is happening, I also saw a neuro eye doctor to try and figure out why I have an extended aura of lights in the upper left quadrant of my vision – all the time. I’ve had it since Francesca was little and It’s annoying. I was also concerned about double vision episodes I was having and blurry vision. He explained that the constant aura I’m seeing is probably my brain trying to fill in a spot that is commonly missing in the visual field after a craniotomy. Good to have one thing figured out I suppose.

So now, we wait. Chris is taking me to Grand Rapids on Thursday for a 3-hour EEG. I’m not feeling super hopeful about this because EEGs haven’t been helpful for my epilepsy situation in the past. I have no idea what the next steps will be, I hope whatever they are we can get it figured it out before I lose my mind again.