Sorry I didn't post on Friday - I was getting a cold last week and after the long day on Wednesday getting to/from Houston for my appointment, I was not only beat but feeling pretty crummy from the cold, so I chose rest over writing.
Last Wednesday Jeff and I made the trek to Houston's medical center area for an appointment with an epileptologist, which is a neurologist who specializes in seizures and epilepsy. In the time since my seizure on November 24th, I've been diagnosed by a neurologist at the hospital where I was brought via ambulance, then I saw a neurologist in town, then I had a second opinion phone appointment with a seizure specialist neurologist out of Yale University, then I met with my neurosurgeon for an update on my back surgery but also discussed what had happened, seizure-wise, and now I was meeting with a more local (if you could call driving two hours local...which you kind of do in Texas) specialist. Yes that's a lot of doctors but having a seizure out of the blue was a lot, too. I needed help.
When I was trying to find another neurologist to get some better clarification for what was happening with my brain, the Baylor College of Medicine's epilepsy center was referred to me by the three neurologists who I'd had direct contact with (I didn't ask the one from my ER visit), so I felt like I was going to the right place. Turns out, I was. Holy cow, I feel so much better about my situation. And while it definitely IS a situation, at least I have a good understanding about what is happening and what needs to be done to release me back into the wild. Or at least back to my normal life.
After being assessed by the nurse tech - and getting her to understand when I responded "never" when asked if I drank that I really meant never, not even a glass of wine every so often, and no I also didn't vape, smoke cigarettes, or smoke pot, which was cracking me up in a way because that's not me but I can see how using any of those products could factor into messing up an already messed up brain, I met with the doctor. He came to the room familiar with my case and wanted to hear from both Jeff and I what had happened - he was interested in what Jeff had witnessed which was good because I have no memory from the time I was standing there to when I became aware of paramedics around me.
His take on what happened was that based on my blood work from the night of the seizure, I had been very dehydrated (my potassium was incredibly low) and that triggered the seizure. It's similar to what the Yale specialist said, that I was a little under the weather that weekend and that's when things went haywire. There's no explanation as to why this happened at this point in my life considering I've been dehydrated and under the weather many times in my 56 years, but in the time since it happened I've been reading up on seizures and pretty much expected to hear the "we don't really know why this started happening NOW" explanation, so I guess it's common. I'd brought a CD with my MRI and CT scans on it and the doctor popped it in the computer to show me how symmetrical and normal my brain looked; he had read the radiologist's report beforehand and wasn't expecting to see anything odd. He did mention that if I began to have breakthrough seizures or started to feel odd, he would want another MRI done at the six month mark, just to make sure there wasn't anything tiny that didn't show up on the original MRI but had since grown. Fingers crossed I won't be needing that!
My EEG, on the other hand, is the smoking gun. He said because it was abnormal I am at risk of having another seizure. That is what everyone is trying to prevent from happening. But instead of simply stating that and telling me that I'd need to be on anti-seizure meds for the rest of my life, as my local neurologist did, he went into more specifics which made a big difference in how I looked at this. His diagnosis, based on the EEG, is focal epilepsy. To give you an idea about my local neurologist, she said she never uses the word epilepsy in a diagnosis because of the stigma that comes with it, which seemed odd. Like, aren't you perpetuating this so-called stigma? Epilepsy, seizure disorder - whatever you call it, I just want to be well.
While he agreed that switching from Keppra to Lamictal was a good thing based on my medical history, he explained that the ER doctor put me on Keppra because it ramps up to the full dose in 10 days, whereas I've been on Lamictal for nearly eight weeks and am apparently nowhere near full dose. Which is another interesting thing. I was frustrated with my local neurologist because she was vague about how much Lamictal I should take - she kept saying it would be somewhere between 100mg and 200mg per day, which was a big difference to me considering I'd only been increasing the dose by 25mg every two weeks. She'd rewritten my prescription a couple of weeks ago with 100mg tablets and told me to go from 100mg to 200mg over the course of two weeks, which seemed like quite a jump. Well, he agreed with that, regarding the big jump; but he said that he wanted me to be on 400 - 500mg of Lamictal a day - what the what?? That's a huge difference! Of course I questioned this and he said that he equates taking anti-seizure medicine to putting on a bullet-proof vest - you want to put on the heaviest vest you can tolerate when going into battle. The more often I have a seizure, the more my chances are of getting hurt, or worse; he prefers a high maintenance dose to reduce risk.
Until I get up to the maintenance dose, I will be taking the Lamictal twice a day. I asked if I could take it all at once, like in the evening, and he said absolutely not - it's a 12 hour medicine and it would not cover me for 24 hours. Which is another frustration I have with my local neurologist; the only thing she said to me was to never miss a dose or I could have a seizure - no mention that I was taking a 12 hour medicine! Sheesh. Once I'm on the maintenance dose I should be able to transition to the extended release version but for now with titrating up weekly (I'm moving up to 50mg increases after next week), I will need to cut pills in half and that doesn't work for extended release. He did warn me that once I'm on the higher maintenance dose, if I miss a dose my chances of having a seizure are sharply increased, and I don't know if it's the way he was communicating with me or what, but I heard what he said better than I did from the local doctor.
Oh - he did a cognitive exam (my first, ahem local neurologist) and I passed with flying colors; I learned that I can recite the months of the year backward from December as long as I close my eyes to do it. Also, cat guitar Spain. I had to remember and repeat those three words throughout the exam and I did. I told him that I probably wouldn't have done as well with this had it been closer to the seizure because my concussion really borked my brain; it was nice to see how much I've improved since then.
I guess you can surmise that I was happy with this doctor and am switching my care to him. Yes it will mean driving to Houston for my appointments, but the nice thing is that he's very amenable to communicating via email and phone calls; when I mentioned this to Amanda (my PT/boss) she was impressed and said that showed confidence in that he was willing to put in writing what he said. And unlike here, where I've been going to monthly appointments with my now-former neurologist, he won't need to see me until late May, and then yearly unless something comes up. I'm glad I put in the effort to finding a specialist. I feel much more confident moving forward with the medications I'll be taking to keep myself seizure-free.
Oh, one last thing: I won't be taking a bath ever again in my life. I wonder if there are a lot of seizure-related bathtub drownings that occur because EVERY SINGLE DOCTOR has stressed this to me. Along with that, no swimming alone. I guess I'm lucky to have survived this long with bathing and swimming - yes I'm joking, but it's crazy how dangerous some seemingly normal things can be if you are prone to seizures. Who knew that having a seizure would mean the end of baths for me? Luckily I prefer showers, anyway.
Showing posts with label seizure. Show all posts
Showing posts with label seizure. Show all posts
Monday, February 17, 2020
Wednesday, January 15, 2020
Herniated Disc Update #8 PLUS Seizure Update
Herniated disc update: It's been 3.5 months since I had surgery - a laminectomy and discectomy of the L3 - for my herniated disc. I had a third follow up appointment with my neurosurgeon last week; we discussed getting another MRI to check things out since my leg is still not 100% better - it's hugely improved, but I still have incidents where if I move wrong or get in the car awkwardly, I'll get that old familiar shooting leg pain. But, since the recommended course of action would be to continue to wait for more healing to happen, we decided to hold off on the MRI. I'll hold off until August, if need be - our insurance runs on a fiscal year so I've hit my deductible already and any big tests won't cost me much at this point; why not get one if there's any doubt?
With all of the craziness of the seizure and then traveling, I have completely gotten off of my physical therapy routine, which is too bad because I can tell that I'm not as flexible as I was; in fact, every time I get up from sitting, I have to steady myself and I walk stiffly for a minute or so until things get moving again. My doctor is very pro physical therapy so I'll begin another round with Amanda this week and hopefully with that plus more time to heal, I can put this herniated disc saga behind me soon. I'm ready to be done with it, believe me.
Seizure update: A lot has been happening with this while nothing much has changed. Right before Christmas I had a second opinion via telephone from a seizure disorder neurologist located in New Haven, Connecticut. This was via 2nd.MD, which is a service provided as part of our health insurance, and while I went into it thinking it could be a whole lot of nothing, it ended up being incredibly helpful. Prior to the telephone call I'd given permission for my ER records, with the CT scan, MRI, EEG, etc, to be sent to the specialist, so when we spoke she'd gone over everything and gave me her take on what might be going on, along with what she recommended.
She agreed with my original neurologist that with the EEG showing abnormal activity, I do need to be on anti-seizure medicine, although she recommended switching to one that should be easier on me than the Keppra has been, side effect-wise. She also recommended getting another EEG, even while taking the medicine; she said that if it came back showing less abnormal activity, that would be an indicator that the medicine is working, which would give me some peace of mind (more on that in a bit). Another thing she recommended was that I see an epileptologist in Houston for a workup, which I'm on board with doing.
While this neurologist does think I have some sort of seizure disorder, she was encouraging in getting me back to living a normal life. Because I had no indication that a seizure was imminent, and because I had been dealing with a little stomach bug/not feeling great the weekend that it happened, she recommended that I pay attention to times when I am not feeling great, and during those times to not drive or swim or do anything that might result in getting seriously injured if I were to have another seizure. Also I'm supposed to be sure and get plenty of good sleep, which hasn't been happening for me for years now so I'm not sure how I'm supposed to accomplish that, but I have been trying to go to bed earlier. I still wake up in the middle of the night but I'm more rested when that happens, LOL.
Last week I not only had an appointment with my neurosurgeon, but also with my neurologist - it was Neurology Week, woohoo! I told my neurologist about the second opinion I'd gotten and she agreed to switch my anti-seizure medication to Lamictal; it's a very slow titration, 25 mg/week for two weeks before increasing another 25 mg, and we're heading to somewhere around 150 mg, so I'll be continuing to take the Keppra while this is happening. I'm glad she was agreeable to the change. She is putting in a referral for me for an epileptologist in Houston while my neurosurgeon is looking for one to refer me to as well - I am hopeful that between the two of them I'll end up with someone who can help me navigate through all of this and figure out what I really am dealing with.
What I want to end up with all of this is some peace of mind. I'm having a hard time reconciling what happened. One minute I was standing in my kitchen and then next thing I knew, I was on the ground, not knowing how I got there. To go down like that with no warning, and to not be aware or have any memory of what was happening during the seizure has been really unsettling to me. It doesn't make a lot of sense as to why it bothers me as much as it does, but when we were at a family gathering recently I happened to overhear someone say that he'd had a seizure, and when I asked him what had happened, he had a very similar story regarding how mysterious the entire event felt to him. While I was sorry that he'd had a seizure, I was really glad that I got to compare and share our experiences.
I try not to worry, at least consciously, that this could happen again. After all, I'm on anti-seizure medication, so that should be taking care of things, right? But I will admit that the fear of another seizure is still deep inside of me because I'll notice that if I'm not feeling great I'll suddenly become irritable, and I think that's the worry - warranted or not - coming out. I am still on my state-mandated three months of no driving which is fine with me. It's annoying and inconvenient to not just hop in the car and go somewhere whenever I want to, but it's one less thing to worry about.
As for now, I'm doing what I'm supposed to be doing - taking my meds, resting my still-concussed brain, and trying to get back to my regularly-scheduled life, whatever that is at this point.
With all of the craziness of the seizure and then traveling, I have completely gotten off of my physical therapy routine, which is too bad because I can tell that I'm not as flexible as I was; in fact, every time I get up from sitting, I have to steady myself and I walk stiffly for a minute or so until things get moving again. My doctor is very pro physical therapy so I'll begin another round with Amanda this week and hopefully with that plus more time to heal, I can put this herniated disc saga behind me soon. I'm ready to be done with it, believe me.
Seizure update: A lot has been happening with this while nothing much has changed. Right before Christmas I had a second opinion via telephone from a seizure disorder neurologist located in New Haven, Connecticut. This was via 2nd.MD, which is a service provided as part of our health insurance, and while I went into it thinking it could be a whole lot of nothing, it ended up being incredibly helpful. Prior to the telephone call I'd given permission for my ER records, with the CT scan, MRI, EEG, etc, to be sent to the specialist, so when we spoke she'd gone over everything and gave me her take on what might be going on, along with what she recommended.
She agreed with my original neurologist that with the EEG showing abnormal activity, I do need to be on anti-seizure medicine, although she recommended switching to one that should be easier on me than the Keppra has been, side effect-wise. She also recommended getting another EEG, even while taking the medicine; she said that if it came back showing less abnormal activity, that would be an indicator that the medicine is working, which would give me some peace of mind (more on that in a bit). Another thing she recommended was that I see an epileptologist in Houston for a workup, which I'm on board with doing.
While this neurologist does think I have some sort of seizure disorder, she was encouraging in getting me back to living a normal life. Because I had no indication that a seizure was imminent, and because I had been dealing with a little stomach bug/not feeling great the weekend that it happened, she recommended that I pay attention to times when I am not feeling great, and during those times to not drive or swim or do anything that might result in getting seriously injured if I were to have another seizure. Also I'm supposed to be sure and get plenty of good sleep, which hasn't been happening for me for years now so I'm not sure how I'm supposed to accomplish that, but I have been trying to go to bed earlier. I still wake up in the middle of the night but I'm more rested when that happens, LOL.
Last week I not only had an appointment with my neurosurgeon, but also with my neurologist - it was Neurology Week, woohoo! I told my neurologist about the second opinion I'd gotten and she agreed to switch my anti-seizure medication to Lamictal; it's a very slow titration, 25 mg/week for two weeks before increasing another 25 mg, and we're heading to somewhere around 150 mg, so I'll be continuing to take the Keppra while this is happening. I'm glad she was agreeable to the change. She is putting in a referral for me for an epileptologist in Houston while my neurosurgeon is looking for one to refer me to as well - I am hopeful that between the two of them I'll end up with someone who can help me navigate through all of this and figure out what I really am dealing with.
What I want to end up with all of this is some peace of mind. I'm having a hard time reconciling what happened. One minute I was standing in my kitchen and then next thing I knew, I was on the ground, not knowing how I got there. To go down like that with no warning, and to not be aware or have any memory of what was happening during the seizure has been really unsettling to me. It doesn't make a lot of sense as to why it bothers me as much as it does, but when we were at a family gathering recently I happened to overhear someone say that he'd had a seizure, and when I asked him what had happened, he had a very similar story regarding how mysterious the entire event felt to him. While I was sorry that he'd had a seizure, I was really glad that I got to compare and share our experiences.
I try not to worry, at least consciously, that this could happen again. After all, I'm on anti-seizure medication, so that should be taking care of things, right? But I will admit that the fear of another seizure is still deep inside of me because I'll notice that if I'm not feeling great I'll suddenly become irritable, and I think that's the worry - warranted or not - coming out. I am still on my state-mandated three months of no driving which is fine with me. It's annoying and inconvenient to not just hop in the car and go somewhere whenever I want to, but it's one less thing to worry about.
As for now, I'm doing what I'm supposed to be doing - taking my meds, resting my still-concussed brain, and trying to get back to my regularly-scheduled life, whatever that is at this point.
Friday, December 13, 2019
S-E-I-Z-U-R-E
Welp, things are still up in the air regarding my seizure. My visit with the neurologist was interesting - she was nice enough but matter-of-fact when she said that my EEG showed abnormal brain activity and therefore I have seizure disorder, period, end of story. She didn't seem to think that the medications I'd been taking had any bearing on the diagnosis, and said that I would need to be on anti-seizure medicine for the rest of my life.
Now, I'm not saying she's wrong - obviously if the test showed that my brain wiring was firing funny, then it was. But she didn't think another EEG was in order, or that the other factors might be a consideration in thinking this was a one-off issue rather than a permanent diagnosis, which...I don't know. I'm not opposed to taking the medicine if that's what I need to do in order to prevent another seizure from happening, but it feels like there might be some more testing to be done, considering all that's been going on with my body this year.
Unfortunately, we live in Hooterville and there aren't a lot of neurologists around. And yes we can go to a bigger city like Houston or Austin or Dallas but I don't just want to make an appointment with a random doctor; a recommendation would be nice, you know? Luckily I happen to have an "in" in the medical community via Amanda, my PT/boss/friend. She's asking for recommendations from some neurosurgeons that she works with; so far, nothing has panned out but there may be a new neurologist in town early next year so we'll see if that might be an option.
Meanwhile, I'm still dealing with a double whammy of post concussion syndrome, which can last at least six weeks, according to both of my doctors, plus the whole wonky brain wiring/seizure thing - oh, and getting used to the anti-seizure medicine, which can take at least four weeks. So I guess that would be a triple whammy. All I can tell you is that I can go from fine to all systems shutting down in a matter of minutes; lights and noises are overwhelming; and no one is getting a Christmas card this year.
Also I need a nap.
Also seizure is a hard word for my fingers to type.
Also this post took me more than a day to write.
So yeah, I'm a mess and while I'm working on blog posts because I like to write and want to post fun stuff like pictures from our trip to Universal Studios, I'm having to take many breaks along the way and who knows when my next post will be up. I'm not going anywhere, but I'm not exactly all here, either.
Now, I'm not saying she's wrong - obviously if the test showed that my brain wiring was firing funny, then it was. But she didn't think another EEG was in order, or that the other factors might be a consideration in thinking this was a one-off issue rather than a permanent diagnosis, which...I don't know. I'm not opposed to taking the medicine if that's what I need to do in order to prevent another seizure from happening, but it feels like there might be some more testing to be done, considering all that's been going on with my body this year.
Unfortunately, we live in Hooterville and there aren't a lot of neurologists around. And yes we can go to a bigger city like Houston or Austin or Dallas but I don't just want to make an appointment with a random doctor; a recommendation would be nice, you know? Luckily I happen to have an "in" in the medical community via Amanda, my PT/boss/friend. She's asking for recommendations from some neurosurgeons that she works with; so far, nothing has panned out but there may be a new neurologist in town early next year so we'll see if that might be an option.
Meanwhile, I'm still dealing with a double whammy of post concussion syndrome, which can last at least six weeks, according to both of my doctors, plus the whole wonky brain wiring/seizure thing - oh, and getting used to the anti-seizure medicine, which can take at least four weeks. So I guess that would be a triple whammy. All I can tell you is that I can go from fine to all systems shutting down in a matter of minutes; lights and noises are overwhelming; and no one is getting a Christmas card this year.
Also I need a nap.
Also seizure is a hard word for my fingers to type.
Also this post took me more than a day to write.
So yeah, I'm a mess and while I'm working on blog posts because I like to write and want to post fun stuff like pictures from our trip to Universal Studios, I'm having to take many breaks along the way and who knows when my next post will be up. I'm not going anywhere, but I'm not exactly all here, either.
Monday, December 9, 2019
In Which Paco Earns His Keep
If there was ever a dog who has earned the (wo)man's best friend status, the Lassie rescuing Timmy from a well, the loyal friend who won't leave your side, that would be Paco. I've long known that this was his personality, but discovered just how far he took his loyalty oath on the Sunday before Thanksgiving.
Apparently I had a seizure Sunday evening, while standing in the kitchen. Of course Paco was right by my side, as always, and while I lay collapsed on the ground he barked his head off - but didn't leave me - until Jeff, who had been in his office with headphones on while playing a computer game, heard him. I think it's an understatement to say that when Jeff rounded the corner into the kitchen and saw me laying there, eyes wide open but seeing nothing, body rigid, a bit of blood coming out of my mouth - well, he panicked. He called 911 and after some dead air and more panic, finally connected, and within a few minutes help had arrived.
I'm having a hard time reconciling what happened. I'm still very confused. I hadn't felt well for about 24 hours prior to the seizure - we'd spent the morning with the Renegades at Blue Baker and I was fine, but later that afternoon my stomach was upset and I ended up throwing up one time that evening, and just felt not great all day on Sunday. Diane had texted me to see if I wanted to go to a movie with her on Monday, and my last reply to her was at 7:43; I can see by Jeff's phone records that he made his first 911 call at 7:45, so very little time went by before I was found and help was summoned.
I became aware of the commotion - Paco was barking like crazy, there were a lot of men in blue clothing in the kitchen, and one was in my face asking me really hard questions like what was my name and what day was it and what year was it. I'd say I felt stupid that I couldn't answer these questions but I was too confused...nothing was making sense to me. Where did all of these people come from and how did they get into my house? I remember hearing someone say that I had a large bump on the back of my head and then they put me on a stretcher and brought me out to an ambulance. They kept asking me questions and I just didn't have any answers for them...later on Jeff told me that it was the scariest thing to see me so blank. Well, scariest after seeing me on the floor, that is.
They took me to the hospital and when they brought me out of the ambulance, Jeff was standing there - apparently he'd been in no shape to drive so they had him ride along in front. There were more questions asked but mostly I was in confused shock...I'd just been texting with Diane and then my house was filled with people, what the what??
They sent me for a CT scan right away, which didn't show any brain bleeding, just the soft tissue swelling where I'd hit my head when I fell. Blood work showed an unusually low potassium count so once I was admitted, I got to enjoy four bags of potassium via IV overnight - and that's when I also learned that potassium hurts like hell to go through your veins. Not fun. Around 6:00 am I was taken for an MRI where everything was OK except for the bump. A few hours later I had an EEG, where they put electrodes all over my head and then did a series of tests with bright lights, eye movement, and rapid breathing.
I must have failed the EEG because it showed "seizure activity" - which, really? After going over my history and medications, the ER doctor's thoughts were that this might have been caused by a couple of medications that I'd been taking. One was Wellbutrin, an antidepressant that lists seizures as a side effect. You guys are aware that this year has been a crap one for me since April, when I herniated my disc at L3 and lost running and working out and lived with horrible pain for months...hence the depression and medication.
Along with the Wellbutrin, I was also taking Gabapentin for nerve pain. Turns out it was originally an anti-epileptic medication although that's not why I was taking it; but it may have been unknowingly keeping me from having a Wellbutrin-induced seizure all this time. My neurosurgeon said I could stop taking it after back surgery, and I did a very slow taper off of it, finishing just over a week before I had the seizure. Maybe when I got that medicine out of my system, it allowed the other one free reign to wreak havoc on my system. That's the current train of thought, anyway.
I was released nearly 24 hours after I'd been brought to the ER, with a prescription for an anti-seizure medicine, instructions to stop taking the Wellbutrin, a referral to neurology, and also instructions to avoid intense light stimuli, which probably wouldn't have been such a big deal had we not been days away from our long-planned trip to Universal Studios Orlando, home of intense light stimuli. I already knew that I'd have to be careful with choosing rides that didn't slam me around so I wouldn't hurt my back, but now there's an issue with lights? Geez.
Getting back to Paco, poor dog - when Jeff finally arrived home sometime after midnight, he said Paco ran all over the house looking for me. Then he slept on Jeff for the rest of the night. But the funny thing is that when I finally came home the next evening, he greeted me but then wouldn't stay near me. I know he was traumatized. It took him a full night before he decided he could stand to sleep next to me. We were all exhausted.
I recovered as much as possible over Tuesday and Wednesday, and then we flew out to North Carolina very early on Thursday (Thanksgiving) morning. At Jeff's request I wore my Road ID band, just in case something happened while I was away from him. I'm really glad we still went on our vacation because have I mentioned how much of a crap year this has been? That said, parts of the trip were rough for a few reasons. When I fell and hit my head during the seizure, I got a pretty bad concussion, which brought about a host of issues - I'd be doing OK and then suddenly lose all of my energy and feel so tired that I could barely walk - it felt like I was trudging through quicksand. In the months leading up to this trip, pre-seizure, Jeff and the kadults had mentioned renting a wheelchair so I wouldn't have to expend too much energy walking around the park - heck, just from where you go through security to the park entrance is nearly half a mile, and then it's nearly another half a mile to Diagon Alley. But I refused - I'd felt like such an invalid all year that I didn't want to give in to being wheeled around Universal Studios. Turns out that when the fatigue hit me, I'd have gladly taken a wheelchair ride.
I had been so shocked at having had a seizure that I didn't focus enough on what a concussion does to your body. After a nap I'd be good to go for another few hours, but once again, fatigue would hit and I'd be done. I was, and still am, weirdly overemotional which apparently is another part of having a concussion. Oh, and my eyes randomly dilated nearly a week after the seizure, which was super painful. I'd brought along my darkest sunglasses but even wearing them wasn't enough to keep my eyes from hurting when I was outside. That lasted for about five days. I had posted about the incident on Facebook, along with some pictures at the park, and heard from a former childhood neighbor who'd also recently had a concussion; she gave me some good advice and helped me to stop feeling so bad about feeling so bad.
This week will be interesting - I have a post-ER follow up visit with my regular doctor this morning, and then tomorrow I have an appointment with a neurologist. At the moment I am not allowed to drive; I'm not sure how long that restriction will be in place but considering how the seizure happened with no warning, I'm OK with not driving just in case. Honestly, I'm beyond horrified that this happened the day after I held baby Aiden for hours at Blue Baker - the idea that I might have gone down while holding him makes me cry just thinking about it. I'm hoping to go back to work, brain-willing; luckily Jeff's schedule is loose enough that he can drive me there and take his lunch when I'm ready to go home. All I can say is, can we just skip ahead to 2020 already? I'm done with 2019.
Apparently I had a seizure Sunday evening, while standing in the kitchen. Of course Paco was right by my side, as always, and while I lay collapsed on the ground he barked his head off - but didn't leave me - until Jeff, who had been in his office with headphones on while playing a computer game, heard him. I think it's an understatement to say that when Jeff rounded the corner into the kitchen and saw me laying there, eyes wide open but seeing nothing, body rigid, a bit of blood coming out of my mouth - well, he panicked. He called 911 and after some dead air and more panic, finally connected, and within a few minutes help had arrived.
I'm having a hard time reconciling what happened. I'm still very confused. I hadn't felt well for about 24 hours prior to the seizure - we'd spent the morning with the Renegades at Blue Baker and I was fine, but later that afternoon my stomach was upset and I ended up throwing up one time that evening, and just felt not great all day on Sunday. Diane had texted me to see if I wanted to go to a movie with her on Monday, and my last reply to her was at 7:43; I can see by Jeff's phone records that he made his first 911 call at 7:45, so very little time went by before I was found and help was summoned.
I became aware of the commotion - Paco was barking like crazy, there were a lot of men in blue clothing in the kitchen, and one was in my face asking me really hard questions like what was my name and what day was it and what year was it. I'd say I felt stupid that I couldn't answer these questions but I was too confused...nothing was making sense to me. Where did all of these people come from and how did they get into my house? I remember hearing someone say that I had a large bump on the back of my head and then they put me on a stretcher and brought me out to an ambulance. They kept asking me questions and I just didn't have any answers for them...later on Jeff told me that it was the scariest thing to see me so blank. Well, scariest after seeing me on the floor, that is.
They took me to the hospital and when they brought me out of the ambulance, Jeff was standing there - apparently he'd been in no shape to drive so they had him ride along in front. There were more questions asked but mostly I was in confused shock...I'd just been texting with Diane and then my house was filled with people, what the what??
Jeff called Diane, who met him at the emergency room. By the time I took this picture it was late and I felt bad that they were both just sitting around, but I was reminded that they kinda owed me (they didn't) for staying with them in the ER in Houston after the half marathon where we all had food poisoning.
They sent me for a CT scan right away, which didn't show any brain bleeding, just the soft tissue swelling where I'd hit my head when I fell. Blood work showed an unusually low potassium count so once I was admitted, I got to enjoy four bags of potassium via IV overnight - and that's when I also learned that potassium hurts like hell to go through your veins. Not fun. Around 6:00 am I was taken for an MRI where everything was OK except for the bump. A few hours later I had an EEG, where they put electrodes all over my head and then did a series of tests with bright lights, eye movement, and rapid breathing.
So many electrodes! This took a while to get set up.
I must have failed the EEG because it showed "seizure activity" - which, really? After going over my history and medications, the ER doctor's thoughts were that this might have been caused by a couple of medications that I'd been taking. One was Wellbutrin, an antidepressant that lists seizures as a side effect. You guys are aware that this year has been a crap one for me since April, when I herniated my disc at L3 and lost running and working out and lived with horrible pain for months...hence the depression and medication.
Along with the Wellbutrin, I was also taking Gabapentin for nerve pain. Turns out it was originally an anti-epileptic medication although that's not why I was taking it; but it may have been unknowingly keeping me from having a Wellbutrin-induced seizure all this time. My neurosurgeon said I could stop taking it after back surgery, and I did a very slow taper off of it, finishing just over a week before I had the seizure. Maybe when I got that medicine out of my system, it allowed the other one free reign to wreak havoc on my system. That's the current train of thought, anyway.
I was released nearly 24 hours after I'd been brought to the ER, with a prescription for an anti-seizure medicine, instructions to stop taking the Wellbutrin, a referral to neurology, and also instructions to avoid intense light stimuli, which probably wouldn't have been such a big deal had we not been days away from our long-planned trip to Universal Studios Orlando, home of intense light stimuli. I already knew that I'd have to be careful with choosing rides that didn't slam me around so I wouldn't hurt my back, but now there's an issue with lights? Geez.
Getting back to Paco, poor dog - when Jeff finally arrived home sometime after midnight, he said Paco ran all over the house looking for me. Then he slept on Jeff for the rest of the night. But the funny thing is that when I finally came home the next evening, he greeted me but then wouldn't stay near me. I know he was traumatized. It took him a full night before he decided he could stand to sleep next to me. We were all exhausted.
I recovered as much as possible over Tuesday and Wednesday, and then we flew out to North Carolina very early on Thursday (Thanksgiving) morning. At Jeff's request I wore my Road ID band, just in case something happened while I was away from him. I'm really glad we still went on our vacation because have I mentioned how much of a crap year this has been? That said, parts of the trip were rough for a few reasons. When I fell and hit my head during the seizure, I got a pretty bad concussion, which brought about a host of issues - I'd be doing OK and then suddenly lose all of my energy and feel so tired that I could barely walk - it felt like I was trudging through quicksand. In the months leading up to this trip, pre-seizure, Jeff and the kadults had mentioned renting a wheelchair so I wouldn't have to expend too much energy walking around the park - heck, just from where you go through security to the park entrance is nearly half a mile, and then it's nearly another half a mile to Diagon Alley. But I refused - I'd felt like such an invalid all year that I didn't want to give in to being wheeled around Universal Studios. Turns out that when the fatigue hit me, I'd have gladly taken a wheelchair ride.
I had been so shocked at having had a seizure that I didn't focus enough on what a concussion does to your body. After a nap I'd be good to go for another few hours, but once again, fatigue would hit and I'd be done. I was, and still am, weirdly overemotional which apparently is another part of having a concussion. Oh, and my eyes randomly dilated nearly a week after the seizure, which was super painful. I'd brought along my darkest sunglasses but even wearing them wasn't enough to keep my eyes from hurting when I was outside. That lasted for about five days. I had posted about the incident on Facebook, along with some pictures at the park, and heard from a former childhood neighbor who'd also recently had a concussion; she gave me some good advice and helped me to stop feeling so bad about feeling so bad.
This week will be interesting - I have a post-ER follow up visit with my regular doctor this morning, and then tomorrow I have an appointment with a neurologist. At the moment I am not allowed to drive; I'm not sure how long that restriction will be in place but considering how the seizure happened with no warning, I'm OK with not driving just in case. Honestly, I'm beyond horrified that this happened the day after I held baby Aiden for hours at Blue Baker - the idea that I might have gone down while holding him makes me cry just thinking about it. I'm hoping to go back to work, brain-willing; luckily Jeff's schedule is loose enough that he can drive me there and take his lunch when I'm ready to go home. All I can say is, can we just skip ahead to 2020 already? I'm done with 2019.
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