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!

AAAAAAARGH, I NEED SLEEP!!!

My sleep-wake pattern is so disturbed at this point that I'm getting a little loopy and am craving even just one night of good sleep. This problem has gone on more than two weeks. I'm sure this lack of good sleep is NOT helping my health. I'm running a fever of 100.0 today.

The Lunesta (which I took for a few days) did not work for me. It helped me fall asleep, but I kept waking up throughout the night. After the Lunesta I was prescribed a high dose (30 mg) of Restoril, which didn't help after four nights of taking it. It did not help me fall asleep, and I ended up waking up "wide awake" around 4:30 or 5:00am after having fallen asleep around midnight.

If you're keeping track, so far the following medications have NOT helped me sleep:

• Trazodone (caused nasal passages to close)
• Soma, prescribed for tension headaches (kept me up for 36 hours!)
• Valium, prescribed for tension headaches (made me wake up every one to two hours)
• Lunesta (did not help me stay asleep)
• Restoril (did not help me fall or stay asleep)

The newest sleep med I'm going to try is Ambien CR. My first dose is tonight.

I've had trouble sleeping in the past, but my sleep patterns got worse after the lumbar puncture and MUCH WORSE after the Soma incident. Compared to now, my past insomnia was nothing. I used to be able to take over the counter supplements or meds to help me sleep. However, my brain chemicals and internal clock are so crazy now that nothing (including natural remedies, good sleep hygiene, and prescription meds) so far has worked.

In other news...

• I received a letter yesterday that let me know my Short Term Disability claim was approved through November 30... but they now need all my medical records including all test results from every treating physician from November 11 through present (before they just needed info from one doctor).
• I went to my regular doctor on Monday, and she reiterated that I should continue to stay out of work at least until January.
• My doc also prescribed seven days of the antiviral medicationValcyte for me because the blister on my throat appeared viral and not bacterial. She also ordered new EBV and HHV-6 tests to see if my levels are high enough for me to take Valcyte for a longer period. There is some research that shows some people with CFIDS improve on Valcyte.
• Turns out the area of my blood patch was infected, which is why it hadn't healed after over a month. My doc prescribed a topical antibiotic, and it has already helped a great deal.
• I will be seeing a pulmonary specialist for the "air hunger" I recently started experiencing; however, I've read that this symptom is not uncommon in people with CFIDS, so I doubt the doctor will find anything wrong with my lungs. My breathing tests at the place that treats my asthma already confirmed my lungs are clear.
• The Cognitive Behavioral Therapist told me she didn't think I needed regular counseling at this point because I am not currently depressed or experiencing excessive anxiety about being chronically ill and seem to have developed good coping skills. I've got two more appointments with her, then we'll schedule on an "as needed" basis. I have battled depression and not handled my disease very well in the past, so it's good to have outside confirmation that I'm doing ok mentally.
• The physical therapy has helped my upper back pain a bit, but the daily headaches have returned since I stopped all the meds the neurologist prescribed.
• I've kept up with my "olympic training regime" so far, taking daily walks to the mailbox (roundtrip: 3 min).The Georgetown doc told me to walk even on days that I feel awful to work on reprogramming my brain. Starting Monday, I'm going to increase to four minute walks...maybe...or I might just stick with my mailbox walks. I'll see how I feel.

That's all for now.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, headache, nausea, low grade fever 100.0, blister in throat, sore lymph nodes under arms and in neck, tired and sore muscles, poor memory and thinking problems, air hunger.

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

Getting Better is Exhausting

Ugh. Sorry about the long silence. I've had all sorts of problems with new medications combined with horrible insomnia, so I have not felt up to writing. This post will be written in spurts, so there might be some repetition or jumping around of ideas.

My progress is so slow that on a day-to-day basis I feel like I'm not making any progress. When I compare myself now to how I was before the lumbar puncture and blood patch (when I was working full time), I'm still in pretty bad shape.

However, when I compare myself now to how I was immediately after the research study (when I was REALLY bad off), I can tell I have made some improvements. Here are some improvements:

• I am able to shower more often. When I first got back, I was so sick and weak that it would take every ounce of energy to shower that I only did it twice a week at the most (sorry if that's too much info).
• I can get in and out of bed without help, and I no longer spend all day in bed. Initially, there were times that I needed my husband to help me sit up in bed so that I could eat a meal or take pills. I now have more variety and spice in my life and spend time sitting or lying on the couch instead of lying in the bed!
• I can drive myself to all my medical appointments. Driving is still a physical challenge. On days I have an appointment, I rest as much as possible before the appointment and usually end up taking a nap after.
• This week I started doing some light chores like putting dirty dishes in the dishwasher and twice getting the mail (we live in an apartment complex, so our mailbox is a short walk from our place). These are big accomplishments!
• My headaches have decreased, probably as a result of some of the medications, which unfortunately I have now stopped due to side effects (see below).

Unfortunately, I still have a way to go. I'm still running low grade fevers. There have been a couple of occasions that my temperature was a normal 98.6 or a close 98.8 (and of course I would get excited), but then by the next day it would be up again.

I'm still exhausted and not sleeping well, and I'm sleeping a lot. I'm still having trouble breathing. My throat hurts on and off, and I've got a blister on what remains of my left tonsil. My lymph nodes still hurt, and my memory is a mess. I feel like the forgetful fish Dory in the movie Finding Nemo. It's funny, but not.

So much has happened since my last post that this post would become a book if I tried to explain everything, so I'll just try to cover the main points (not necessarily in chronological order):

• I was having difficulty breathing (see symptoms from last post) and thought it was from my asthma, so I went to my asthma specialist to get checked out. My lungs are completely clear. My breathing symptoms are not from asthma. I was given a name for my symptom: "air hunger."
• Because of worsening insomnia combined with the sense of air hunger that started around the time I started my new medications, the neurologist instructed me to stop the zonisamide (see last post) and diazepam (a.k.a. Valium) which was prescribed in place of the Soma (muscle relaxant) which was supposed to help my tension headaches. I am no longer on any medications for my tension headaches or migraines.
• It is interesting that both the Soma and Valium increased my insomnia symptoms to an extreme degree. Both medications usually cause drowsiness. The Soma kept me up 36 hours (see previous post). The Valium did not make me sleepy, and it kept me in a very light sleep when I did fall asleep. I would wake up ever couple of hours. I still say I'm the queen of less-common side effects.
• The neurologist has temporarily given up trying to treat my headaches, saying that we need to first address my insomnia. Good call. I'm exhausted. He has prescribed Lunesta for sleep, which is supposed to help people fall asleep and stay asleep. I've taken it two nights, and it does seem to help me fall asleep (though I have discovered that it takes nearly two hours before it starts to work); however, I still find myself waking up during the night.
• In the past, I've used melatonin, valerian, and/or benedryl to help with sleep; however, my sleep problems have gotten out of control since the lumbar puncture. I'm willing to try pretty much anything. It's funny the Soma and Valium, while not specifically prescribed for my insomnia, were so unhelpful.
• I have started going to physical therapy for my upper back and neck with the hope that it might help with my headaches. I've had one treatment, so I don't feel any difference yet...but I'm hopeful.
• I have started seeing a Cognitive Behavioral Therapist to see if she could give me any useful techniques for dealing with my newly worsened level of CFS. I've only been to her once, and I like her so far. She knows I'm not depressed and that the CFS is not a psychological disorder. I feel it significant to point out that she herself has Fibromyalgia.
• I have started light therapy. I bought a travel-sized light therapy light from Amazon and am using it for 30 to 60 minutes each day when I get up. I'm hoping it will help "reset" my internal clock which is obviously not functioning properly.
• I purchased a cheap eye mask to help block out all light when I go to bed, and I got a "sleep machine" that creates white noise to help mask external sounds that can be disruptive to sleep.
• In addition to the light therapy, eye mask, and sleep machine, I try to practice good sleep hygiene by going to bed and waking up at the same time every day (I set my alarm clock), but doing so has been a fruitless exercise thus far. I'm hoping if I keep doing what I'm doing along with trying to find a sleep medication that actually works, things will improve in time.
• I am trying to start the "olympic exercise regime" that the Georgetown doc recommended to me. He suggested going for short walks. In the first week, I would go for a one minute walk every day. In the second week, I would go for a two minute walk every day. In the third week, a three minute walk every day, and so on. Up to thirty minutes. If I have trouble, I could repeat a week. That is, if I'm ok with three minutes but not four, then I would stick with three minute walks for another week.

When the Georgetown doctor told me to stay out of work until January and my regular doctor agreed, I decided I would do everything my doctors suggested...even if I was skeptical...because I really want to get healthy. I also started doing my own research. The sleep machine, eye mask, and light therapy were my own ideas, but pretty much everything else has been suggested by them.

I am not a big fan of prescription medications because I've been on so many over my lifetime. I rather prefer natural remedies; however, all the supplements I'm on are obviously not enough at this point. I have an appointment with my regular doctor on Monday, and I want to talk to her about possibly taking antiviral medication.

I've read that some CFS patients have had some success with long-term antiviral medications. Multiple blood tests have shown elevated levels of EBV in my system (and occasionally elevated HHV6). Most of my symptoms are very viral-like, as well, so I'm hoping she'll consider a prescription. If not, I'll keep plugging away. There are also a few more supplements I want to ask her about.

Oh, and my Short Term Disability has still NOT been approved. It's still pending, so that's better than being denied. I started the process on November 20. I'll post an update if/when anything happens.

I'm too tired to write any more, so this will have to do.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, mild headache, low grade fever 99.3 (99.7 yesterday), blister in throat, sore lymph nodes under arms and in neck, tired muscles, poor memory and thinking problems, air hunger, area of blood patch has still not healed and is itchy.

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

P.S. Happy Hanukkah to those that 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