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.

Things Aren't Always What They Seem: Hemiplegic Migraines

Yesterday, while I was reviewing a document at work things got weird. I couldn’t comprehend the words, and nothing was making sense. And then I could only see certain letters. Even though I have had too many hemiplegic migraines to count, it had been a while and I panicked – sure I was having a stroke. I quickly emailed my boss and left – I didn’t trust myself to find her and have a conversation because I knew the words wouldn’t form like they should. I just wanted to be alone – to avoid questions, concern or embarrassment.

On the way home – probably driving a little faster than I should – I realized if I got pulled over I would be in a bad situation. I would not be able to explain to the police officer what was happening and it would definitely be assumed I was drunk or on drugs. By this point the confusion was worse and I started to experience what I refer to as “kaleidoscope vision” where my sight is interrupted by circulating bright lights. I couldn’t remember common words and names I knew well seemed foreign to me. I know it is all part of the migraine and that it would end at some point but when you’re in the middle of it it’s horrifying and heartbreaking and hard to remember your brain will return to normal.

I think what threw me the most was this one went out of order. Usually they are by the book – first the kaleidoscope vision, then the numbness, tingling and heaviness from my face down my left arm and through my fingers. Then, in the worst case ones – like yesterday – the confusion and slurred speech starts. Usually all the symptoms – from the vision to the confusion – are done within an hour. Then I am sometimes left with a headache (other times I just have the symptoms but no actual head pain) and the post-migraine fog which often lasts 24 hours or more. But yesterday it took almost two hours to get through the symptoms – which tells me the recovery is going to much longer than 24 hours. Sometimes my brain isn’t back up to speed for a couple days. It is a terrible, hopeless feeling.

These migraines first started about 12 years ago – but I would only have them once a year. I’ve seen ebbs and flows since then including a huge increase during my pregnancy with Francesca and then after the birth of Amelia and Annabelle. Thankfully we have found a medication that seems to break the cycle when they are unrelenting. I discontinued the medication at the end of July and have been doing great…until yesterday. And yesterday was the reason I hate them more than anything now. In the days BK (before kids) I would go home and sleep for hours – usually most of the day and then overnight. These days, that isn’t an option. And when it happened yesterday I had the additional challenge of Chris covering a basketball game. Thankfully, my village came through – per usual. Our nanny, Jessica, stayed late with the twins and Grandpa and Grandma took Francesca overnight and dropped her off at school this morning.

But the guilt that comes with not being able to take care of my kids is awful. I don’t care how bad I feel, I don’t want to be away from them in my room sleeping it off, I don’t want someone else to have to take care of them. I am their mom - I should be able to handle it. And most things I can, but not hemiplegic migraines. They are my kryptonite. And if I’m being painfully honest - I fear that they are the one thing that could break me. Everything else I can figure out and overcome, but not these. With that said, that’s me in the middle of the migraine war - once I’m a couple days on the mend,  I’ll be back to kicking ass and believing I can overcome everything.

I’m not sure the point of sharing this, other than – things are not always what they seem. Anyone who would have seen me at work yesterday, or a police officer pulling me over on the way home, would have for sure thought I was drunk, high or having a stroke. Thankfully it was “just” a migraine (she says with a laugh). I’m feeling better today but it will likely be a few days before I feel 100%, until then I will be tired (again, mother of 8-month-old twins, laughs), I will take longer to find the right words and I’ll be near tears often, because these stupid migraines leave me terrified and on edge about when the next one will come. I’m also sharing because I’m working hard on reaching out when I need help and not defaulting to my mom (this is where she’ll object, and say its fine – but it’s not). So – all of you who have continuously offered to help be warned – I might be coming for you. XO

Update: before I could even publish this or share it, I had another migraine. Thankfully, Chris is in town and can take on the parenting duties tonight. I’m at home, laying down and waiting for a return call from my migraine doctor.