Seriously?! Epilepsy?!

I wrote this post on Wednesday, December 23, but it's taken me some time to get up the nerve to publish this post because of the life-changing implications and complications. I finally made the decision to make this post public because I made a commitment to share all my health-related experiences when I started this blog.

Today my husband and I went to the neurologist to get my MRI, MRA, EEG, and blood test results. I had the tests done earlier this month, but today was the earliest I could get in to see him for the results (he's got a full patient load because he's considered a top neurologist in the area, so it's difficult to get in quickly).

I fully expected the tests to come out normal. After all, they were only done just to be thorough; my only complaint had been regular headaches and increasingly frequent migraines. The good news is that my MRI and MRA results are entirely normal. Physically, my brain and brain arteries look good.

The crazy news is that my EEG was NOT normal. In fact, it was quite abnormal, indicating multiple "subclinical seizures."

WHAT?!

The good doc spent about an hour (AN HOUR!) with us asking me all kinds of health-related questions and answering my questions. Long story short, I've been diagnosed with "primary generalized absence epilepsy. Based on answers to his questions and my EEG results, he thinks I've had (or have) "absence seizures" (a.k.a. petit mal seizures).

The doctor has put me on antiseizure medications to see if they help my memory, concentration, sleep, and EEG results. The meds are depakote and neurontin.

Interestingly, depakote is sometimes prescribed to prevent migraines and neurontin is sometimes prescribed off-label for fibromyalgia. The depakote may help the frequency of my migraine symptoms, and the neurontin may help the new and unexplained pain I've been having in my upper back, neck, and arms.

The doctor is also recommending that I extend my Short Term Disability until I have been stabilized on my new medications.

Seriously?!

The doctor showed me an excerpt of my EEG results (the full thing is really long) and said he thought I'd be able to see the abnormal parts without him pointing them out. He was right. I immediately pointed to the wave areas of larger spikes.

Things are still sinking in. Only after I left the doctor's office did more questions come to mind like:

• Are you sure?
• What other reasons could cause an abnormal EEG?
• When can I have another EEG just to be sure?
• Exactly how many "subclinical seizures" did I have during the test?
• Is this condition for the rest of my life, or is it temporary?

After doing some research on epilepsy and absence seizures on the internet I came up with a couple more questions including:

• Most of the information I've read indicate that absence seizures are most common in children. Why would I develop this as an adult? or have I had it since childhood and it's just gone undiagnosed?
• Are you sure?

The epilepsy diagnosis does not explain all my CFIDS symptoms, so it looks like I'm just "lucky" and happen to have both conditions (in addition to all my other conditions) unless we can prove otherwise. Yippee...

I still don't entirely believe I have epilepsy at this point. I'm not sure if I am in denial or if I just have a healthy skepticism. As far as I know (and based on observations by husband), I have not had any clinical seizures. I don't remember having any seizures (but, ironically, not remembering having a seizure is one of the symptoms of absence seizures).

I am going forward with treatment nonetheless because the EEG clearly indicates some sort of abnormality. That is something I can't argue. If my neurological symptoms improve, I might be more inclined to believe the diagnosis.

I've got an appointment with my regular doc on Monday, and I'm going to ask her all the questions I should have asked my neurologist while I was there. I'm also going to ask if it's worth it to get a second opinion or if I should wait and see if I make any improvements on the new meds. My next neurology appointment is in a month.

It's all still sinking in...

P.S. Merry Christmas to all who celebrate!

Neurologist Trip and Medication Side Effects

My cognitive and motor (i.e., typing) functioning is poor at the moment because I have been awake since yesterday morning at 10am - with the exception of a 3 hour nap I managed to get this morning.

This post will be primarily comprised of (edited) emails I have written to people explaining the recent events.

First, an email about my trip to the neurologist (this is an email I sent yesterday to the Georgetown researchers who are very interested in my case):

As requested, I am emailing you a list of the meds the neurologist prescribed.

Also, am no longer taking trazodone for sleep because I had an odd reaction to it. About 60 to 90 minutes after taking it, I would experience a feeling that my nasal passages were closing. If I tried to breathe through my nose, I had the feeling that I was suffocating.

I am still suffering from insomnia. I have also been running constant low grade fevers since I left Washington, DC. Today it reached 100.1, the highest it's been since this all started. My whole body feels very weak, and the lymph nodes in my neck and armpits take turns hurting. My short term memory has also been terrible (in a somewhat alarming way).

On the bright side, the neurologist said that being in a constant migrainous state combined with a lack of quality sleep can cause memory problems.

I saw my regular doctor last Wednesday before Thanksgiving, and she agreed with everything you suggested. She also thinks I need to be out of work until at least January.

I saw the neurologist yesterday. The doctor diagnosed me with chronic daily tension headaches that have resulted in a chronic migrainous state. He has ordered an EEG, MRI, and MRA which I will have at the end of this week. I also had blood drawn to check for muscle disease.

Here are the medications:

~ Soma/carisoprodol 350 mg tablet (muscle relaxant for tension headaches). Last night was first dose. Per instructions, I am taking half a tablet every night this week and will increase to a full tablet if I do not notice a difference with the half tablet.

~ zonisamide 25 mg capsule (anti-convulsant also used for chronic migraines). Tonight was first dose. Per instructions, I will take 1 pill every night in the first week and will increase to 2 pills every night in the second week, 3 pills every night in the third week, and 4 pills every night in the fourth week. Four pills per night is the maintenance dose he wants me on.

~ Migranal 4.0mg/ml nasal spray (for migraines). Tonight was first dose. Per instructions, I will use it every 12 hours for six doses. After that, I will use it as needed.

~ Fioricet. Per instructions, I will only use this medication if I have a really horrific migraine.

I think that's all. Please let me know if you have any questions.

Kind regards,

Alyson

Next, an excerpt from an email to a friend I sent this evening about the recent happenings (this wonderful person will be bringing dinner to Kenny and me this week):

Just as a heads up, I'll probably be extraordinarily exhausted when you see me. I took some new medication last night that has resulted in me being awake for nearly 35 hours with only a 3 hour nap during that period. I will be taking sleeping medication tonight that my doc prescribed, but I have no idea how I will feel tomorrow after having been awake for so long. My cognitive and motor functioning has been declining as well; however, I hope they will be improved tomorrow.

The neurologist instructed me to stop the Soma (muscle relaxant), thinking that's possibly what kept me up. Usually it makes people drowsy, but apparently some people (i.e., me) experience insomnia. I'm also going to take yet another new medication the neurologist prescribed today to try to help me sleep tonight.

I seem to be the queen of less common side-effects.

I'll write more when I'm up to it, but I thought it important for me to document this experience.

Today's Activities: home. Today's Most Annoying Symptoms: INSOMNIA! nausea, sore throat, sore lymph nodes under arms, sore muscles all over body, unusual muscle weakness in the legs, the feeling of being over medicated, horrible memory and thinking problems, occasional sensation of not being able to get enough air (asthma).

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 6

Two Steps Back, Baby Steps Forward

I'm feeling quite ill today, but I felt the need to write a post because I feel it's important to document my experiences during this challenging time. I am mentally fatigued, so I will be writing this post in spurts and as thoughts come to mind. I also do not plan on proofreading this post, so please ignore any odd text.

I went to see my regular doctor on Wednesday, and she pretty much echoed everything the Georgetown doctor said and recommended. She also added her own suggestions. I'll write about all the two doctors' recommendations in a future post.

When I said that the other doc recommended that I stay out of work until January, she said "at least until January." Yikes! I hope that's not the case. I already miss my work friends, who are (if the truth be told) my only friends since I don't have a social life. I also enjoy my job. I can watch only so much TV before it gets old.

Like many Americans, my husband Kenny and I celebrated Thanksgiving with his family Wednesday night and much of Thursday (they live about 30 to 45 minutes away by car). I made sure to rest before and during the experience as much as possible, but I still managed to overdo it simply by participating.

After having an almost perfect temperature of 98.8 at the doctor's office on the Wednesday morning before Thanksgiving, my temperature went back up to 99.8 by Friday and is currently running at 100.0 as I write this post. I have not left the house since we got back home on Thursday.

Despite the setback, I do not regret spending time with family. Now that I spend my days at home rather than seeing colleagues and friends at work, contact with other humans (I love my cat, but...) has become more valuable. I also enjoy spending holidays with family.

Tomorrow I have an appointment with a neurologist. We're going to talk about my headaches, which have been increasing in frequency and intensity since the worst headache of my life on November 1. The Georgetown doc recommended that I see a neurologist, and my regular doctor referred me to the one I'm seeing tomorrow.

My only concern is that the drive will be a long one, and I have to drive myself. I'm going to leave extra early so that I can pull over to rest along the way if I need to.

Though I'm still feeling physically awful, I am feeling better mentally. I have come to accept my new situation (I was in denial for a bit); however, I have also made the decision to aggressively work on getting back to my "normal" or even better. I'll write about some of my plans in a later post.

I've also slept better the past two nights. I have been battling some terrible insomnia lately (trouble falling and staying asleep), so it's been a relief to sleep through the night for a change. I give credit to the trazodone prescription the Georgetown doc suggested and my doctor prescribed. The doctor recommended it because it is less addictive than most other sleep medications.

It took a couple of days of taking the medication before it seemed to help, but it seems to be working in part. I still have trouble falling asleep, but they staying asleep problem bothered me more.

Baby steps...

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 100.0, generally fevery feeling, headache, nausea, sore lymph nodes under arms.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

Headache Hindsight Meltdown

Disclaimer: I had brain fog while writing this post. Please excuse any rambling or incoherent sentences.

It's taken me a little more than a week, but I've mostly processed what happened to me the Sunday I arrived in California. (See The Worst Headache of My Life for background info.)

Immediately after the experience I went into some sort of denial, brushing off the headache as a one-time deal. It was just a really bad migraine. Nothing to worry about, right? However, as things began to sink in, I started to realize that what happened could have had a much more serious outcome.

Not to be dramatic, but having such a severe headache could have been a symptom of all sorts of horrific brain events that I'm not going to go into. All you have to do is google "worst headache of my life" and see all the gruesome possibilities. I am fortunate that my headache turned out not to be as a result of a more serious and more immediate problem. Of course, I did not know that at the time.

In hindsight, I realize that I should have called 911 and gone to the hospital. If my husband or anyone I knew were having such an incapacitating headache and were not able to move or think straight and started vomiting as I did, I would have called an ambulance without hesitation. Unfortunately, I was alone and not thinking well, so I did not make the best choice.

I got all this wonderful hindsight about last week's headache experience yesterday. Unfortunately, it took another migraine to knock sense into me. I started to get another bad headache as I was flying back home from California yesterday. By the time I collected my luggage and got to my car, my head was pounding and I was feeling nauseated. I immediately took medication for my headache.

My head started to feel better after about an hour and the pain never reached an intolerable level, but the experience scared me because it was so similar to the last time -- getting a headache while flying that only got worse after landing.

When I got home to my husband, Kenny, I started crying. All the stress of my experience and being away from home hit me at once. He held my hand and let me cry. I had a meltdown.

My husband insisted that I call the doctor an make an appointment to get checked out. Since it was a Sunday I couldn't call to make an appointment at that time, but Kenny wrote a reminder on a post-it note for me to call. I called today an got an appointment for next Monday.

I fly quite a bit and have not had problems in the past. However, I seem to have developed a headache problem related to flying. I have another flight tomorrow. This time my husband is coming with me. We are traveling to Washington, DC for our participation in the Georgetown CFS study.

I am excited about this trip because it means participating in real CFS research, but I'm nervous about the possibility of getting another major migraine after we land. On the upside, I will be with family. My husband is coming with me, and my parents live in Washington, DC.

Today's Activities: work. Today's Most Annoying Symptoms: headache, exhaustion, pain in right arm.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

A Quick Hello

Thank you for all the support in response to my Headache post.

I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.

I am still processing what happened and will post an update on my next steps when I come up with some.

Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

The Worst Headache of My Life

Today I had a bit of a scare. Earlier today I became almost completely incapacitated because of a horrendous migraine headache and considered going to the emergency room.

I still can't move around too much without feeling nauseated or having my head pound.

This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.

As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.

My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.

I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.

As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.

All I could think about was the pain.

I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.

Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.

Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.

I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.

I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.

I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.

Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.

I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.

I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.

My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.

The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.

Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6