Sunday, November 22, 2015

FAQ

Does this interfere with work/business?
Not so far, aside from spending time in doctors offices and the hospital for all my testing/appointments. I am fully functional even when the episodes are happening (they have happened during client meetings and I don't think the clients even noticed that anything was up). I've only had two really bad days where I felt that I needed to go home and lay down, but if the pattern holds I will be able to predict those and plan around them. I actually have more energy these days since they put me on iron supplements in October. My goal right now is to focus my energy into my business so that if I do need to take time off later, I will still be ok. If my licence gets revoked I may have to move closer to the office. :(


Could this be temporary/stress induced/diet related, etc?
It's too soon to say, but I don't think so. All of the doctors I've seen so far have asked about stress, and I've told them all the same thing: being self-employed is inherently stressful but overall my life is pretty relaxed and I'm far less stressed than I was a year ago. My diet hasn't changed. The episodes are too frequent and too strong to be just random... there is definitely something up. We just have to figure out what it is.


What do the different tests do?
The CT scan and MRI are both looking for abnormal masses in the brain (lesions, tumours, etc.). The EEG is looking for abnormal electrical activity. In an ideal world I would have an episode during the EEG but that didn't happen. She said they can usually pick up a problem regardless. I may need to go back for a sleep-deprived EEG, where they force you to stay up all night and then do the test in the morning. I've also had a ton of blood tests to rule out other possibilities (hormones, thyroid, etc.). My neuro and GP both seem to be very thorough, which is great. They're checking EVERYTHING.


Do you track the episodes?
Yes, I started tracking on October 3 after seeing the first doctor. So I'm missing details from Sept 23-Oct 2, but I have the rest. I'm using an app called Seizure Tracker, which allows me to record length, times, possible triggers, etc, and also allows me to generate and print reports.


How can I help?
So many people have offered help, and I really appreciate it. :) So far there's not much to be done. I'm doing a lot of waiting. The testing happens at our local hospital and I am able to drive myself. If I have to go for a sleep-deprived EEG I may need someone to drive me and/or help me stay up all night. If at any point I need to be in the hospital for a day or longer, I will need someone to take care of Sammy (already have a short-list of people prepared to do that!). Otherwise I just need moral support, which so many people have already provided. Also it's been awesome to have friends who are familiar with the medical and health world, as they have explained things to me and helped me to do research. :)

Saturday, November 21, 2015

Hospital Selfies

6am, waiting for my CT scan. I look a little manic here but what do you expect at that time of day?! :)

Starting things off...

My brother-in-law Robb suggested that I start a blog to log my current neurological journey. On one hand, it will help me record and process things as they happen, and on the other hand it may be a help to someone experiencing similar things. So it's worth a shot! I'm secretly hoping that in a couple of months I will have nothing more to tell and this can settle into the archives. I'm also secretly hoping that the symptoms I've been experiencing magically go away on their own and the neurologist tells me that there's nothing wrong with me. But I don't think so.


So here's a recap, for those just joining:


September 23 - My first "episode". I was in the car, just sitting in traffic, and I was overcome by an intense feeling of, for lack of a better word, deja vu. Except it wasn't like the normal deja vu that we all have. It felt more like waking up from a vivid dream, where you can still see and feel the dream and you're trying to remember what it was about--but you can't grasp it, and then it's gone. There were images and feelings involved, but I couldn't pinpoint what it was about, and then seconds later couldn't even remember what I was trying to remember. That first time, I actually said out loud, "weird." And then continued about my day. A headache settled in shortly after, which lasted the rest of the day. That was mid-afternoon on Sept 23 and by the end of the night it had happened a total of four times that day.


Over the next several days the episodes continued to happen, anywhere from 1 to 5 times a day.


In the second week, the episodes changed a bit. They still started with the deja vu, but then I also would get really dizzy and nauseated. I also felt like I had butterflies in my stomach, like anxiety/anticipation, but I wasn't sure why.


October 3 - My first "bad" day. I had four episodes that day, but the intensity of them was far greater than the previous ones. The first one was in the morning while I was meditating. I was listening to a mindfulness meditation on my phone and was laying down, and I think I dozed off because suddenly I woke in a panic and was having one of my episodes, got really dizzy, and it took a couple of minutes to recover. This was the first (and only, so far) one that felt like a panic attack. Except I've never had a panic attack before.


The third episode that day was while sitting on the couch with my niece. My mom witnessed this one, and noticed something change on my face. She said that I frowned and furrowed my brow, and looked spaced out. I felt dizzy and lightheaded.


The second and fourth were simply the deja vu and dizziness, and I also felt kind of "off" and tired.


That was the day that I really started to get concerned that something was wrong with me, so I went to a walk-in clinic in the evening. I described my experience to the doctor, and told her that I had googled it. Basically, two things come up repeatedly when I google my symptoms: brain tumours and partial seizures. When I said this to the doctor, I was half expecting her to tell me that those were unlikely. Instead, she nodded her head and said, "it could be." She immediately put in an "urgent" referral to a neurologist and wrote a requisition for blood tests and an ECG. Since it was Saturday evening, the referral wouldn't go until the Monday. I asked if I should follow up and she said no, that it would take a few weeks and the neurologist would call me. So I believed that and waited.


Went in for the blood tests and ECG, which came out normal except my ferritin was extremely low. The doctors don't think it has anything to do with my episodes, but I need to be on iron supplements, and overall that is helping me to feel physically better and more energetic.


Four weeks passed and the episodes continued, but I did not hear back from the neurologist. So I followed up again with the clinic, and this time they gave me the neurologist's name and number. When I called, they said they had never received my referral (!). I confess that I cried when I heard that, because I had been waiting four weeks for it. As well, the receptionist told me that there was a 4-7 month wait list just to see the neurologist, unless he looks at the referral and decides that it's urgent. Three days later, I had an appointment for the following week, because he had looked at my referral and decided that it was urgent. While I was grateful to get in quickly, it was also scary how quickly that 7 month wait list turned into one week.


At the same time, I was meeting a new GP since I hated my old one and wanted someone who would have better empathy and support. The new GP sent me for a ton more blood tests, including hormone testing and anti-nuclear antibodies (ANA). All came out clear except the ANA, which was borderline high. I don't know yet if that is related (waiting to hear from the GP on that one).


November 12 - Met the neurologist. He is really gentle and empathetic, and I felt good after talking to him. He said that he would send me for all the testing, to rule out the worst case scenario (brain tumour), and see if he can pinpoint what's happening. It could definitely be partial seizures. He also said that it could simply be migraines. This surprised me because I haven't had abnormal headaches, but he said that not all migraines come with headaches; sometimes you can get the aura without the pain. So when I went home that day I googled migraine auras to see if it matches my experience. Unfortunately, the seizure descriptions match my experience much better than the migraine descriptions do. So while I *hope* it's migraines, I really think the seizures match better.


November 20 - Up at 5:30am in order to be at the hospital for 6:30am, for my CT scan. The scan was quick and painless, and looks for any lesions or tumours that may be present. They said it would be a week for the neuro to get the results. A couple of hours later, I got a call to come in for the EEG that day, or wait until March. So I went for the EEG the same day! Results will be in two weeks. The next scheduled test now is the MRI, which is January 19 (unless I get in earlier via the cancellation list).


Other thoughts:
  • There seems to be a hormonal connection. It's too early to say for sure, but both of my really "bad" days happened when I was ovulating. I googled this and it seems to be common. Apparently estrogen excites the temporal lobe, and estrogen is highest during ovulation. Both times it peaked on that day and then subsided dramatically for a week or two, and then built up again as ovulation approached. Within the next week I'll know if the pattern is holding for a third month. This can affect things regardless of whether I'm having migraines or seizures. Some epileptic women apparently reduce their seizures by using a progesterone cream to balance out the estrogen, so that is something I may consider. I would be happy if it does prove to be tied to my cycle because then I can predict my worst days and plan for them.
  • For a few days, the deja vu changed a bit, and instead it was as though everything I saw those days reminded me of something from my distant past. It was weird, but I was remembering things that I haven't thought about in 25+ years. It was actually kind of cool.
  • In the beginning, I was REALLY scared. It was extremely stressful, and I was pretty emotional about it. I have felt much better since meeting the neuro and getting the ball rolling on the testing.
  • My friends have been amazing, checking up on me and offering help. I have felt extremely supported by them and my immediate family. (thank you!) Best text from a friend before my neuro appointment: "I hope he tells you it's all in your head". :)
  • If it's seizures, I may lose my licence. I'm not prepared for that, especially since I drive a lot for business.
  • I'm a "p1" (priority 1). This is good because everything happens quickly. Other people have to wait months for the tests that I'm getting very quickly. It's bad because p1 means that something could be very wrong. I'm looking on the bright side.
  • Apparently the onset of my episodes is unusual. I read this online and also the doctor doing the EEG was surprised. Apparently most people will have one or two seizures (if that's what it is) and then it will go away for awhile, or they will happen sporadically, and they may cluster but a cluster is usually short-lived. Mine were sudden, frequent, and clustered... far more than seems to be the norm.
Ok... I think that's all I have for now. Will try to keep this updated as I go.