What I Have
There are so many types of epilepsy and symptoms it can make a persons’ head spin. The type I know about, and have, is left temporal lobe epilepsy with associated myoclonus. I experience absence seizures, deja-vu (it’s not fun), nausea, extreme anxiety, and I smell things that aren’t there. For example, I could just be sitting in my room and get a strong smell of popcorn suddenly. I know that I didn’t make popcorn. It’s like a hallucination with my nose. These are tame symptoms compared to my first symptom that led to my diagnosis. I would randomly fall without provocation and, be conscious the entire time. It was a bizarre feeling, not being able to do anything about falling. Before I knew it was on the floor, looking around thinking “what the hell just happened?”.
If you want to read about what my absence seizures are like click here: http://hubpages.com/health/What-Time-Travel-Feels-Like
The myoclonus developed shortly after my diagnosis almost exactly one year ago. Myoclonus is a spasmodic jerk of your muscles. Mine happens mainly on the right side of my body due to my epilepsy being located in my left brain. My arm will randomly jut out and flop around for a second, or my entire body will have a huge jerk and look almost Tourette’s like. Needless to say, I have a lot of neck and back pain from this. I can sometimes get whiplash if it’s bad.
My Blood Clot Bertha
This one is hard to explain but, I will try my best. Before I was formally diagnosed I was suffering from random bouts of panic attacks. There would be no rhyme or reason as to why I was having them. I would be sitting in a lecture taking notes when suddenly I would start to sweat, my heart would beat fast and I would get so nauseous I would have to always know where my nearest bathroom was. My mind was blank and I could think of nothing that set it off. My doctor passed this off as general anxiety disorder and promptly put me on Zoloft, Ativan, and Zofran. For about two and a half weeks I was high as a kite and loving life. And then I had to wean off of the Ativan because it was a crutch to suppress the panic attacks until the Zoloft kicked in. The Zofran was for nausea that came with the anxiety. By that time, my school was out and I was home for the summer with my family. But, the anxiety returned. I couldn’t do anything about it except grin and bear it. I always came prepared with my nausea meds and some chewable Pepto.
A few weeks into my summer, I was in the shower shaving my legs when I noticed something scary happen. The inside of my right thigh, running from the back of the top of my calf around the left side of my knee and up to my middle thigh started changing color. A long thick dark bruise was rapidly appearing. I didn’t have any pain, just panic. I thought because of all of the moving I was still doing I was seeing a bruise appear from me repeatedly bumping into things. I am a super pale girl who is slightly anemic, so I didn’t want to have an all out panic attack. I wasn’t in any pain so I kept on with my day. It was about two days later that I noticed I was limping slightly and having some cramping in my leg. My grandmother noticed and made me show her my thigh. It looked bad, like Grey’s Anatomy worthy bruising. To the doctor,I went.
My GP took one look at it, and then me, and then back at it (I named it Bertha) and said, “I’m going to make a call to the ER and let them know you’re on your way, let me know the results when you can.” I surprisingly did not panic but, my father did. My mother was hounding me with question after question while we were on our way about what I was doing, am I on drugs, did I drink enough water today (my god, she thinks water is a cure-all).
The ER was much more eventful than I imagined. My mom kept asking if it was West Nile and I just sat there happy and relaxed on pain medication while my dad kept peeking around the curtains spying on the alcoholic next to us who was told very loudly that he has pancreatitis and should stop drinking by some nice nurse. He was later let go and replaced with a grumpy old man with diverticulitis.That was some loud groaning, I laughed so hard and still don’t feel bad about it. Back to me! After blood tests for god knows what and a very painful ultrasound of my leg we come to find out that nothing is there! Nothing was wrong! I was pretty happy with that, except I was still in pain and had no explanation. My instructions were to go home and elevate my leg with a hot compress and take some ibuprofen.
The next morning I headed back to my GP and he said it was likely a small clot that dissolved itself, and sometimes they don’t always show up in tests. He was also worried about the Zoloft I was on, I was sleeping for well over 12 hours and drowsy all of the time. He told me that maybe I had a bad reaction to the medication. I was stunned. And promptly weaned me off of the Zoloft and never looked back. After about a week and a half of having it, our of my system my sleep patterns returned to normal and my leg stopped hurting. The bruise took about two weeks to go away completely. I still have some phantom pains there every once in a while, but I am sure glad it’s over.
It was time to move back to school, but this time, I had a nice new job and my own place. I was ready to go, I just had to use some techniques for my anxiety. I took a Dramamine every morning, and a Zofran every 8 hours along with a boat load of chamomile and peppermint tea to soothe my nerves and stomach. I was coping, and extremely hydrated. After about a month and a half of being on my own and starting the new semester I started to fall. And I fell a lot. I was basically living alone. My boyfriend would visit every weekend and my sister was supposed to move with me, but she had a lot to do back home before she could stay with me full-time. Falling and being alone is just asking to be in a life alert commercial.
So, back to the doctor, I went. This time, I gave her the entire run down of what happened over the summer and what my ER visit was like and what my GP at home said. The falling was her main concern, and she sent me for my first MRI and gave me a referral to a neurologist.
The neurologist took one look at my pristine MRI and gave me a very weird exam that tickled a lot and told me that I just have anxiety. But, to be safe, she wanted an EEG done. But she was pretty confident that I just had anxiety. Lo and behold, it came back abnormal AF. Never in my life have I had a test come back positive for anything. We were both shocked. There was a short in my brain, and that’s why all of this was happening. My brain was sending the wrong signals to my body and vagus nerve which was causing everything! Nausea, anxiety, and falling. Bertha, though, that girl is still a mystery.
The first medication that I tried was Lamictal a very common AED(antiepileptic drug). I didn’t have any side effects or any effects at all up until the second week when I increased my dose. I broke out in a rash around my left armpit. I was told that If I noticed any rash, to stop taking the drug and immediately take a Benadryl. So, I was allergic, fantastic.
The next medication was called Keppra. And WHOA. I stopped falling mostly and my anxiety was becoming less and less. But there was a catch, I was still nauseous all of the time, and I had unexplainable rage. And I mean true scary murderous anger when my granola bar broke. I also had some lengthy passionate rants in discussion posts required for an online course I was taking.
By this time, I was still sick all of the time with nausea and the rage was so upsetting I was becoming depressed. Something weird starting happening as well, I would find myself getting lost a lot because I would wind up in places I didn’t remember walking to. I would forget where I was,even in the middle of class! I was having absence seizures now. It was getting worse. I was still mostly on my own throughout, and the falling still happened occasionally. My grades slipped and I took a medical withdrawal from school. I left a job I loved, broke my lease and moved home. My landlord was so sweet when I explained what was going on and I didn’t have a penalty, I was just able to leave.
Back home, I found a new neurologist, he was the sweetest. Bless him, but he was a pill pusher. I was but on a combo of the Keppra and Topamax. He also did more blood tests, an MRI of my spine, another EEG and an EMG to check for muscular disorders, and a sleep study. Needless to say, he was thorough. Everything came back all clear aside from the EEG. I still had the same exact readings in my EEG as the first one. So he increased my dose of Topamax and put me on the extended release form of it. I stopped falling completely. But, random bouts of extreme nausea got
me every time. I was also falling into a horrible depression, I locked myself in my room for months. I assumed this was it, I was going to live this way forever. Nauseous, unable to enjoy going out, and I couldn’t connect with my boyfriend anymore, and the jerking around (myoclonus) was getting worse.
I also got the flu 3 times in a 4 month period. I was sick for weeks and weeks. I lost about 15 lbs, and I am already a smaller person. I naturally weigh around 125 give or take 2-3lbs for my period. I looked like Skeletor. Because of nausea and constant flu I lived off of ginger ale and ritz crackers. If I went out with friends or family to eat, I would pick and whatever I put in came right back up. I was miserable.
Finally, I told my doctor I had had enough. My insurance had also decided to stop covering those meds anyways, good frickin’ riddance. So onto the next pill! Vimpat. Amazing. I felt like a fog was lifted from my shoulders. for the first time in almost 8 months or so I wasn’t nauseous. I ate everything in my sight and loved it. I got back to my normal healthy weight, but with super weak muscles. It was too good to be true, though. During my time on Vimpat, my insurance changed and I started seeing a new neurologist, my current one. She’s incredible. Tremors started to develop and the myoclonus was at its worst. I was jerking around violently, and couldn’t lift my glass to my mouth without spilling everywhere. It also affected my job, I do eyelash extensions for a living so this had to stop immediately.
Tremors started to develop and the myoclonus was at its worst. I was jerking around violently, and couldn’t lift my glass to my mouth without spilling everywhere. It also affected my job, I do eyelash extensions for a living so this had to stop immediately. The next drug was Depakote, another bummer of a med. I felt that same depression I did with the Topamax/Keppra combo. I couldn’t hold a conversation, or even fathom going out into public. It felt like there was a ceiling pushing down on me. It took me all of two weeks to call her up and say no, I don’t like this. Also, I was paranoid about one of the side effects, I didn’t get it thankfully, but hair loss, really? I weaned off of it as fast as possible.
And now, we have found my medication. It’s an oldie but a goodie. Klonopin. Yep,it seems harsh and a bit hardcore but, I am digging it. I am happy, productive and have so much energy! Which is surprising because this is a drug meant for calming people down mostly. My body loves it. No more tremor, nausea, falling, or depression. On occasion I have an absence seizure and deja-vu or two but, it is usually because I didn’t sleep well the night before or took my medication at the wrong time. Every once in a while, I have a bad jerk, but nothing compared to what it was.
My Life as it is Now
I am one week away from moving in with my boyfriend and, re-enrolled in college. I couldn’t be happier. I have a handle on my illness and my endometriosis, which if you are curious here’s the article I wrote about that: http://hubpages.com/health/An-Endometriosis-Survival-Guide .
This entire journey took a year, It was hard, but I am glad its over. My routine consists of taking a pill twice a day, wearing a medical ID bracelet (which I can’t stress how important this is) and, getting on with my day.
I hope that this story may have reached you on some level if you’re struggling with epilepsy or myoclonus or even both like me. Don’t give up, it’s a lot of work, but worth it in the end. I know it sounds cliché and is upsetting if you’re in the midst of a crisis right now. But, don’t be afraid to advocate for yourself and go to as many doctors as you need! There are plenty of medications out there to try.
If you know someone going through something similar, don’t push them. Guide them gently, because they may also be experiencing rage and depression and a whole slew of side effects that you can’t fathom. Patience is the best path.