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

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

Too Sick to Work

I have fallen into such a major crash that I am no longer able to work at this time.

Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.

I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.

In short, I'm a physical mess.

I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.

About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.

I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.

I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.

I haven't been this sick in years.

I am now filing for short term disability.

The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.

Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.

I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.

Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

Healthy Volunteers STILL Needed for Georgetown CFS Study

Note: This post is a copy and paste (and slightly edited) version of something I've posted and emailed before. I am posting again because it is so important.

Do you or does someone you know live near Washington, DC (or are you willing to travel there for a $400 stipend)?

Georgetown University Hospital is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

My husband and I both volunteered for the study. We checked in to the hospital on a Wednesday and checked out on Friday. Kenny completed the study as a healthy control with no problems and is back at work. It is taking me a little extra time to recover, but I'm still glad I did it! Volunteering for CFS research gave me a sense of empowerment.

They still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests, breathing tests, strength tests, and filling out surveys. There is a $400 stipend that is awarded to volunteers who complete the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this post to friends and loved ones, post the info on your blog, a message boards, or website, or just stand outside and shout about it.

I have been ill with CFIDS for my entire adult life and am sick of being sick. This disease is not just about being tired. This is the kind of serious research we need more of! Please help.

Thank you for reading!

Today's Activities: trip to hospital (again). Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.7, generally fevery feeling, headache.

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

P.S. A lot has happened this week. I will be blogging about it soon.
P.P.S. To my fellow bloggers: Please forgive me for not keeping up with your blogs lately. I have had to focus on myself a lot these days to work on getting better. I promise I will catch up with you when I am doing better.

Georgetown CFS Study: Still in DC

To my readers: Thank you for the continued comments on my Georgetown posts. Even those of you not leaving comments, I appreciate your sending healthy thoughts my way. You have given me great moral support. I promise I will respond to comments when I get the mental energy, so please feel free to continue posting.

I'm on a really odd sleep-wake schedule. Basically, I sleep when I'm tired, and I'm up when I'm not. All the caffeine I've been ingesting has not helped my schedule.

I'm mentally too tired to write a significant post in paragraphs, so I thought I'd do something a little different using bullet points: Good Things/Odd Things/Bad Things/Thoughts/Extra. It took me almost three hours to write this post (with lots of breaks in between).

Good Things:

• My puncture wounds from the lumbar puncture and subsequent blood patch are healing.
• The soreness of the area is also improving.
• I'm getting lots of rest because I have very limited internet access and there's not much else for me to do.
• I took my second shower (in a week!) since my procedures and feel clean (though the shower exhausted me so much I slept for three hours after).
• My husband was amazing to serve as a healthy control for this research. He has severe anxiety when it comes to getting needles poked in unusual places (he's ok with blood tests, but lumbar punctures are another matter), but he participated because he loves me so much.
• My parents have been fantastic. I know they are incredibly stressed because of work issues and deadlines coming up, but they pretty much dropped everything to take care of Kenny and me. They've also provided me much moral support and handed me many pieces of tissues every time I've cried (which has been a few times).

Odd Things:

• I developed an odd reaction to all the cola I was drinking. I started walking as if tipsy (i.e., drunk) but did not feel dizzy at all. I was bumping into things and losing my balance. Obviously, I've stopped the caffeine. Of course, I want to point out that it was the doctors who told me to drink so much caffeine to avoid a second blood patch! I should also mention that I did not diagnose myself with this odd reaction to cola. My doc (via the research asst) instructed me to stop.They think it has something to do with the combination of caffeine and the acidic nature of carbonated beverages.
• I asked the research assistant how many other research participants have ended up having similar complications -- that is, spinal leak, blood patch, and subsequent fever. He said I'm the only one he knows of! My mom has always told me I was special, but I really don't want to be this special.

Bad/Sad Things:

• Kenny went home yesterday and is back at work, so I miss him. He could have gone home sooner, but he wanted to stay with me as long as possible.
• I still feel physically and emotionally crappy.
• I'm still running a low-grade fever. It hasn't been as high as 100.0 since Monday, but it's been ranging from 99.2 to 99.5 the past few days.
• I did not expect any of the complications and thought I would be going home Sunday, November 15, so I didn't bring enough mediations or spplements. Lucky me, my period started today because I didn't bring my entire pack of birth control pills. Boo!
• I'm struggling with the fact that there are still some close family members that do not understand CFS and have not made much effort to learn more about it by asking me to share my story or asking about the disease itself. They do not seem to understand that I suffer every day. I'm pretty sure they don't think CFS is serious. They may even believe it is entirely psychological. I cried today about this. I care about them a great deal, so their ignorance hurts me that much more. (Note: I want to be clear that I am not referring to my parents. They are very supportive.)

Thoughts:

• I am seriously considering taking a temporary leave of absence from work for my health. I love my job and the direction of my career, but my health has been getting progressively worse this year. I feel as though I have not been able to catch up with my rest and get up to the point of health and functionality I reached last year.
• Alternatively, I may try to negotiate reduced work hours. I am not considering quitting altogether because my job gives me a sense of purpose and enjoyment. 

Extra:

• The Georgetown CFS research group still desperately needs HEALTHY volunteers. Their research will not be valid if they don't have enough control subjects. Please spread the word! Here's a copy of the email I wrote today for my husband to forward to people he knows:

Do you or does someone you know live near Washington, DC (or are you willing to travel there for a $400 stipend)?

Georgetown University Hospital is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

My husband and I both volunteered for the study. We checked in to the hospital on a Wednesday and checked out on Friday. Kenny completed the study with no problems and is back at work. It is taking me a little extra time to recover, but I'm still glad I did it!

They still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests, breathing tests, strength tests, and filling out surveys. There is a $400 stipend that is awarded to volunteers who complete the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this email to friends and loved ones, post the info on your blog, a message boards, or website, or just stand outside and shout about it.

I have been ill with CFIDS for my entire adult life and am sick of being sick. This disease is not just about being tired. This is the kind of serious research we need more of! Please help.
Thank you for reading!

Kind regards,
Alyson

Today's Activities: bedrest and occasional sitting, shower. Today's Most Annoying Symptoms: exhaustion, general lower back pain from procedures, low-grade fever of 99.5, generaly fevery feeling, mild balance problems, feeling weepy from the emotional strain.

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

Georgetown CFS Study: Unpleasant Surprises

To my readers: Thank you for all the comments so far on all my Georgetown posts. They have really helped to lift my spirits. I have been physically and emotionally overwhelmed, so all I can do at the moment is blog (and not respond). However, I promise I will respond when I get the mental energy, so please feel free to continue posting.

I am still in DC because the doctors asked me to postpone my original flight back home after my spinal leak and subsequent blood patch. I was supposed to fly back Sunday but changed the flight to Tuesday (tomorrow).

Well, it seems that lumbar punctures are not exactly my cup of tea. This weekend I started to develop low-grade fevers. In order, my temperature was 99.2 on Saturday and slowly increased to 99.4, 99.5, 99.7, 99.8, and reached 99.9 by this afternoon. (For my metric friends, 98.6 is normal.) That's when I called the research team.

They told me to come in to the hospital right then. When they took my temperature at the hospital, it had reached 100.0. Sheesh.

I'm too tired to explain everything, but basically the fever is possibly as a result of (from least to most serious) (a) my body working on absorbing the blood patch, (b) my body fighting off some sort of virus, or (c) my body fighting off some sort of infection from either the lumbar puncture or blood patch.

I'm also still experiencing very, very mild spinal headaches, so part of my instructions are to lie down and rest and also drink LOTS of caffeine to keep the symptoms at bay so that I don't have to undergo another blood patch. Trust me, I've consumed more bottles of Coca Cola in the past few days than I have all year. I do NOT want another blood patch. I never knew cola could be part of a prescription.

Needless to say, they are watching my progress and have asked me not to fly home until this weekend. My husband is flying home tomorrow to be with our cat, Callie, and to go back to work.

I also have to reiterate the appreciation I have for the entire hospital staff, especially Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor), for their amazing patience and compassion.

Every time Dr. Baraniuk met with me (and it was many times including this evening), he took his time to listen to everything I had to say including my concerns and questions and explained everything, making sure I understood what was being discussed. If I missed something and asked him to repeat it, he repeated it without a hint of frustration or hurridness. He exudes patience and a great sense of humor.

After my impromptu appointment this evening, I was advised not to fly back home tomorrow and to wait until this weekend. We need to watch my fever to see if it goes up or down.

I've changed my flight again but this time didn't have to pay as much for the new flight (I had to pay a nonrefundable $150 extra to change it last time). This time it was only about $30 extra (nonrefundable, of course). Yuck. It's all starting to add up. Thank goodness for the $400 research stipend that will pay for my total airfare costs.

All in all, despite the extra surprises (i.e., complications), I do not regret any of this experience. I do it all in the name of science with the hope that useful CFS research will result.

Today's Activities: bedrest and extra trip to hospital. Today's Most Annoying Symptoms: exhaustion, mild pain in back at site of lumbar puncture, mild pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 100.0, generaly fevery feeling, nausea, dizziness, feeling weepy from the emotional strain.

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

Georgetown CFS Study: Hospital Experience

I'm still lying on my back at my parents' house to aid with the healing process. It is painful to sit or stand for more than brief periods of time -- probably because of the second puncture. (My very healthy husband is up and walking around just fine today with only minor aches.)

Because I've been lying down all day for the past few days, I don't have many options for activities. I haven't been in the mood for TV lately (although I think I'll try to catch Home Makeover Extreme Edition if it's on tonight). I'm mentally too tired to read, and talking a lot is exhausting. I've pretty much spent most of my waking hours thinking.

I've got a bunch of thoughts running around in my mind and feel the need to get them all out, so this post is going to be a hodge-podge in no particular order.

The entire Georgetown University Hospital medical staff involved in this study was INCREDIBLE. Words cannot express how much grattitude I feel toward them. Every single one of the doctors, nurses, and research assistants took their time to answer any and all questions I had. They treated me with warmth and compassion.

Even when I began to have complications from the lumbar puncture and required a blood patch, they did not act as if I were throwing a wrench into their plans (even though I know I forced all of them to work late). Rather, they treated me with care and concern.

When I cried from pain, they spoke calming words to me and assured me that the pain would pass soon.

I want to especially recognize by name Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor) for their amazing compassion. I've encountered so many doctors and healthcare professionals who seriously lack compassion and understanding when it comes to working with patients with CFIDS.

The anesthesiologist (whose name I can't remember) was so kind and reassuring when she was explaining the blood patch procedure. She talked me through the entire procedure while she was doing it and made it less scary.

Everyone treated me with dignity. I had to go to the bathroom immediately after the lumbar puncture (even though I went before the procedure) but was not allowed to get up out of the bed. A nurse brought in a bedpan for me to relieve myself, lifted my butt, put it under me, and pulled my pants and underwear down. I was very embarrassed by this, but she acted like she did this every day (which may actually be true). In the end, I had performance anxiety and was not able to go, but I appreciated her kind attitude.

Going over my complete medical history with Dr. Baraniuk was interesting. All the little quirks I have that I didn't think much about are apparently pretty common in CFS patients. For example: I am constantly out of breath. Sometimes I get the sensation that my brain has forgotten to breathe properly and I have to consciously make the effort to breathe in and breathe out.

Another example is the fact that I easily get disoriented in the dark when I'm going from the bed to the bathroom and vice versa. I also have trouble going up and down stairs, occasionally missing a step because I "forgot" where I was on the steps.

The most profound part of my entire experience was that Dr. Baraniuk determined that I "severe" case of CFS...and he's seen A LOT of CFS patients. Wow. I suppose I've known it all along, but have been in complete denial. I have just been pushing through and "passing" as a healthy person.

My job has exhausted me to the point that I worry that I am concerned that I am only making myself sicker or at least preventing myself from getting better. At this point, I am reevaluating my life and considering my next steps. I'll write about my thoughts in a future post.

Needless to say, this entire experience has been exhausting and eye-opening.

Today's Activities: bedrest. Today's Most Annoying Symptoms: exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 99.4, nausea, crying from emotion of it all.

Mood (10 is best): 4

Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 6

Georgetown CFS Study: Day 3 (Complications)

Disclaimer: Today is November 15 (very early). I am retroactively uploading it under the correct date of the actual events.

Day three started out fine but quickly deteriorated.

Almost from the moment I woke up I started experiencing terrible headaches and nausea that only felt better when I was able to lie down.

My worst headache was so bad that I started to cry.

At first my headaches seemed very much like a migraine headache because of my light sensitivity, so they gave me migraine medication. They also gave me phenergan for the nausea and something else to help me sleep.

My reaction to the the phenergan was horrible. It was administered through my IV port and immediately started slurring my speech and causing extreme drowsiness. Also, my whole body started twitching very oddly (my arms and legs were twisting and I made weird faces). The whole experience was extremely unpleasant to say the least. I can add that to my list of medications to avoid...

I eventually fell asleep but woke up with a headache. The migraine medication did not seem to help. The headache and nausea were only made worse by my sitting, standing, or moving.

After taking a complete history of the past 24 hours since the lumbar puncture, they concluded that my headaches seemed like spinal headaches. However, they wanted to bring in an outside professional -- an anasthesiologist who often treated spinal headaches -- to determine independently if what I was having was actually a spinal headache.

She determined that I was likely having a spinal headache.

This was NOT news I wanted to hear. The treatment for a spinal headache is a procedure called an epidural blood patch. I really did NOT want to have another giant needle stuck in my spine at that point.

I honestly did not know what to do. They said I could go on complete bed rest for up to two weeks and see if I got better, or I could try the blood patch. If the blood patch worked, then my headaches would disappear almost instantly. I really did not want another poke in the back, but I also did not want to be completely bedridden for that long.

After asking the doctors for their opinions, I decided to go with the blood patch because the possible instant gratification of an absent headache was more appealing than the wait-and-see-for-weeks approach. I also didn't want to be out of commission for that long away from home.

They did the blood patch and it was more painful than the lumbar puncture itself. Bleh. Still, I did start feeling better very quickly, perhaps in less than 30 minutes? Wow!

I am now on mandatory bed rest at my parents home in DC and have had to postpone my flight back to Houston. Kenny has not had any complications, but he has insisted in staying with me until I could fly back. If all goes according to plan and my back cooperates with me, we will be flying home on Tuesday.

If you're wondering why I'm up in the middle of the night writing on my blog, it's because drinking lots of caffeine is part of my treatment plan. I think the caffeine is supposed to help with improving the cerebrospinal fluid pressure. Caffeine also has the side-effect of keeping me up even when I'm tired. After I finish my last Coke tomorrow, I don't plan to have any more caffeine if I feel ok.

Anyway, I've left out a lot of details which I'll include in another post, but I just wanted to keep everyone updated with the current news.

I will end this post with a (slightly edited) copy of the email I sent my immediate supervisor (whom I like and respect) regarding my current condition:

I thought it only fair that I explain in greater detail my sudden, upcoming absence from the office. Wednesday through Friday I participated in medical research at Georgetown University Hospital that directly involves my primary chronic illness, Chronic Fatigue and Immune Dysfunction Syndrome. The risk of participating in the research study is low with only 7% of the participants experiencing any sort of complications. Apparently, seven is my "lucky" number. (See http://clinicaltrials.gov/ct2/show/NCT00810329 for the research project.)

The most invasive part of the research involved a lumbar puncture (a.k.a. spinal tap) and the removal of 20cc of cerebral spinal fluid on Thursday afternoon. I went through the procedure fine and felt ok until Friday when my condition started deteriorating pretty quickly. I was leaking cerebral spinal fluid from my spine, so I had to have an emergency procedure called a blood patch to correct the leak. According to the doctors, I was not at risk for any major complications from the leak, but the head pain, dizziness, and nausea involved from the spinal leak was incapacitating.

I am still in some pain from the two separate punctures but am now recovering at my parents' house in Washington, DC. I have been advised by one of the the doctors on my case to stay in DC a bit longer rather than stress my body by flying back home tomorrow morning. I hope to be back at work on Wednesday, but it may be a good idea to have any major duties reassigned for the rest of the week to other people because I have become extremely weak and am limited in my endurance and ability to move.

Currently, I am on complete bed rest. I am not allowed to lift anything or bend, turn, or twist my body because I am at risk for another spinal leak. I'm not even allowed to bend over a pick up a pen that I might have dropped on the floor. Standing and sitting are painful (I am writing to you while lying down on a couch). I will be requesting wheelchair escort service at the airports for my departure from DC and arrival in Texas.

I should be back to normal Monday, November 23 and be able to resume normal duties, but the rest of this week will need to be light duties only. On the upside, other than feeling physically poor, I am mentally doing well. I do not have any regrets in participating in this research because it is my hope something good will come of this research. It's also nice seeing my mom and dad.

Anyway, that's it for now. I will continue to respond to email in between naps, as I am so woefully behind, but speaking on the phone is a bit difficult for me for the time being. By the way, I have all sorts of medical documentation if anyone needs proof of my recent activities.
See you soon.

Alyson

Today's Activities (Nov 13): research guinea pig (at Georgetown). Today's Most Annoying Symptoms: severe headache, severe nausea, exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry.

Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after

Georgetown CFS Study: Day 2

Disclaimer: Today is November 14. I actually wrote this post on Thursday, November 12, but was not able to upload it to my blog because of lack of internet access. I am retroactively uploading it under the correct date.

I’ve got an IV inserted at the bend of my right wrist, so I’m having to type everything with my left hand. (I’m right handed…)

Today started at 4am with the insertion of an IV port and more blood tests, and cheek swabs for DNA testing. I had another round of pain tests, and the rest of the time was prepping and waiting for the lumbar puncture.

The lumbar puncture itself went fine. It wasn’t exactly my idea of a good time, but I did not feel any pain from the actual procedure. Ironically, it’s the stuff they use to numb the area that hurts the most!

Kenny and I are now resting peacefully (napping and watching lots of TV, not necessarily in that order). They've given us medication to help with sleep, so I'm falling asleep now.

That’s all for now!

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, exhaustion, dull pain in back at site of lumbar puncture.

Mood (10 is best): 7
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 5

Georgetown CFS Study: Day 1

Please see I'm in the Georgetown CFS Study for background.

It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.

Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.

This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.

Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.

Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.

And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.

I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.

I'm really excited to be a part of this study!

That's it for now, I have to sleep.

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.

Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3

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

Dipping a Toe in the Alternative Medicine Waters (Part I)

My journey down the path of alternative medicine began due to the influence of my current doctor. She is an Internal Medicine doctor who treats many patients with HIV/AIDS or CFS. I think she is used to dealing with patients who have been marginalized or brushed off by others in the healthcare field. She has an amazing amount of compassion for her patients.

I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.

After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.

I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):

I finally have a diagnosis.

It's Chronic Fatigue and Immune Dysfunction Syndrome.

I cried for an hour after I received my blood test results. I have been vindicated. Lyme disease, EBV, lupus, herpes, and many other diseases were ruled out. My thyroid, liver function, red and white blood cells, and all other USUAL things tested in a full blood work-up were within normal limits.

HOWEVER...

My natural killer cells count was 90 (normal is 300-500). My ATP count was 10 (normal is 30). These results combined with my other symptoms, current ailments, and past health history are consistent with other patients with CFIDS. I now have medical evidence that my body is not as healthy or normal as many doctors/nurses have insisted.

The doctor treating me is in Internal Medicine and specializes in treatment of CFIDS and other immune disorders. I found her through the a CFIDS support group and the Co-Cure Good Doctor List (http://www.co-cure.org/index.htm).

After more than six years of my health getting progressively worse, thousands of dollars in medical and prescription bills, and many doubting or ignorant doctors ignoring my insistence that something was wrong, I finally have hope. It took two months to get an appointment with the wonderful doctor who finally diagnosed me, but it was worth it.

The next step is treatment. In addition to paying closer attention to my diet and myriad of vitamins and supplements, I'm going to start receiving weekly Glutathione/ATP injections for six weeks to try to correct my deficiencies. It is a bit on the controversial side, but if it works and I can actually function like a normal human being for an entire day, I couldn’t care less what anyone thinks about the injections. After we see how that goes, we'll reevaluate what to do next.

I am also planning to contact doctors who have treated me in the past few years so that I may send them information about CFIDS, as well as a copy of my medical record and blood tests. I don't want other patients going through what I've been through. The worst feeling in the world is having a doctor not believe or understand you.

Here are a couple of websites to visit to learn more about CFIDS.

http://www.cfids.org/
http://www.cdc.gov/ncidod/diseases/cfs/

Thanks for reading!

Take Care,
Alyson

Reading this email brings back mixed emotions, including the pain I went through trying to find a doctor who would take me seriously.

I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.

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

Mood (10 is best): 5
Energy (10 is best): 2
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

The Best Birthday Present Ever

My birthday was this week, and I've got mixed feelings about it. I'm 31 now. For me my birthday felt like yet another year of my young life had passed without any major improvement in my health.

Sure I'm healthier now than when I was in my mid 20's and unable to work, but I'm still not healthy. I still can't get back into martial arts (which I practiced for over 10 years before I got too sick to continue). I still can't go for long walks with my husband. I still have trouble going up a flight of stairs. I still don't have a social life or do all the things that healthy people my age do. I still can't sing and perform like I did when I was hoping to become an opera singer.

I've already lost my 20's to CFIDS. I really don't want to lose my 30's, too. While I am thrilled at the recent research on XMRV and increased awareness of CFS, I am still afraid of losing another decade to CFIDS.

On the upside, I am making the most of my life with CFIDS. I got married to a prince who loves me for who I am and takes on more responsibilities than a young husband should. I have managed to work for the past four and a half years (a miracle!) in a job I enjoy. I have a fantastic cat named Callie who loves to snuggle (we take lots of naps together). I discovered Netflix. I've become an advocate for others with this disease, most of whom are sicker than I am. I know who I am and what is important to me.

Now back to the point of my post: the best birthday present ever.

My husband Kenny and I purchased our current bed and mattress about three years ago. It was a bit firm, but I thought it would grow on me. It didn't. Not long after we got the mattress, I started talking about getting a one of those memory foam mattress pads. I thought that one to two inches would be perfect because it would be thick enough to create a nice padded feel, but thin enough that Kenny would still be able to enjoy the firmness of our mattress.

I kept talking but not buying. I regularly surfed the internet for prices on such mattress pads. They all seemed too expensive to purchase, so I never got one.

Well, I finally got one -- as a birthday present! My parents ordered it for me because they've heard me talk about getting one for the past three years.

I have to say that it's the best birthday present ever! I've had the chance to sleep on it for a week now. The bed is so comfortable that it has helped my quality of sleep. I am able to fall asleep a little faster, and I have been able to stay asleep a little more easily (though my sleep is still far from perfect). Hooray for small improvements!

Thanks, Mom and Dad!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, itchiness inside ears.

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

Emerging from Survival Mode

I've been back in town since Saturday, but I've been in survival mode since then.

When I travel for work, I have to conserve every ounce of energy possible and rest as much as possible. If I don't do these things, I'll have a big crash during or after my trip. Sometimes after a trip I can feel that I'm on the verge of a major crash. That's when I go into survival mode.

I should probably explain what I mean by "survival mode."

I can usually still work when I'm in survival mode, but not always. Survival mode is when I use the minimal amount of physical and mental energy necessary to get through the day. It means going to bed earlier and waking up later. It means I eat a protein bar for breakfast instead of using energy to have cereal and yogurt. It means I avoid going upstairs to the computer (I've got a lot of catching up to do on other people's blogs!). It means no cooking, cleaning, or housework. It means less talking, moving, and thinking.

Today is the first time I've been on my computer at home since before my trip. I'm glad that I've finally started feeling better because I have another trip coming up. I leave Sunday!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, itchiness inside ears.

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

Video: XMRV on Good Morning America

I think this interview just happened this morning...

Thanks to Lori for bringing this interview to my attention!

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

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. Happy 1st Birthday to my youngest niece!

Traveling with CFIDS is Rough

Hello from California! I'm in the Golden State this week on business. Just thought I'd check in with a short post since I was already online checking my work email.

Traveling with CFIDS is rough.

Carrying luggage, walking through airports, and flying (on a four hour flight!) is exhausting. Throw in a dash of migraine and a pinch of motion sickness, and you've got a recipe for serious discomfort.

Luckily, my dash of migraine didn't turn into to a full-blown migraine, but I did end up taking one Extra-Strength Tylenol and one regular Motrin (thank goodness for hotel mini-marts).

I'm going to get ready for bed now. Fortunately, my first appointment tomorrow isn't until 9am.

Maybe one day I'll post some advice about traveling with CFIDS.

Today's Activities: travel for work. Today's Most Annoying Symptoms: exhaustion, severe headache (beginning of a migraine), nausea.

Mood (10 is best): 8
Energy (10 is best): 3
Physical Discomfort (10 is worst): 8

An Eventful Week

Wow, I'm still processing all the events of the past week or so. A quick recap:

• XMRV linked to CFIDS/CFS/ME...enough said.
• In addition to my already known deficiencies, I am also deficient in vitamin B2 and coenzyme Q-10.
• I got the flu shot and have made it to the weekend without a major crash (hooray).
• My husband and I were officially accepted into the Georgetown CFS study.

Wow!

A few details/updates:

• I went to see my regular doctor (PCP who treats a lot of CFS and HIV/AIDS patients) on Friday to go over my recent blood tests. She is just as enthusiastic about the XMRV discovery as people with CFIDS. She started talking about antiretrovirals and their possible application, as well as the future diagnostic test for XMRV. I left that appointment feeling so hopeful. It has meant the world to me to have a doctor who believes and understands the impact of CFS.
• My temperature was down to a healthy 98.6 on Thursday, but went back up to 99.0 on Friday. Today it's back down to 98.6. I've been especially exhausted and have felt pretty awful this week, but I've made it to the weekend without a major crash! This was a "good" flu shot year.
• I will be leaving for another business trip tomorrow. This time I'll be gone a week, so I don't know if I'll be posting regularly or not until I get back.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, nausea, sore left and right lymph nodes in neck.

Mood (10 is best): 8
Energy (10 is best): 4 (after sleeping 12 hours last night)
Physical Discomfort (10 is worst): 3

P.S. Happy Belated Birthdays to my Mom and Mother-In-Law!

I'm in the Georgetown CFS Study!

I'm in the Georgetown CFS Study, and so is my husband Kenny (he's a healthy control subject)! The study is called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I got verbal confirmation last week of our actual study dates (i.e., when they want us to be at the hospital), but I wanted to wait until I received written confirmation before I shouted about it on my blog. The confirmation came in late this afternoon. We'll be flying to Washington, DC in November!

I've been hoping to get into this study since August 1 (see my August 1, August 18, September 10, September 22, and September 27 posts for background).

This post is relatively short because I'm exhausted and brain fog is closing in, but I just had to post this update.

If you're keeping up with my flu shot update, you'll be happy to know that I still haven't had any sort of major crash. I'm exhausted, but still ok.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore right and left lymph nodes in neck, low-grade fever 99.3.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. If you know any healthy people who live near DC or are willing to travel there, please tell them about this research. The research coordinators are in need of more healthy volunteers. Volunteers will be compensated $400. Click on the study's name above for the official research description and contact info.

So Far, No Crash

I'm still feeling pretty awful from my flu shot yesterday, but so far I haven't had a big crash. Of course, I'm trying to take it easy so as not to upset the delicate balance that is my immune system. I still feel achy all over, and the lymph node under my right armpit is starting to hurt; but on the upside, my low-grade fever is slightly lower at 99.0.

Have I mentioned that I rarely take any headache or fever medications?

Even though I get headaches and run low-grade fevers often, I almost never take medications to alleviate the symptoms (I can't even remember the last time I took anything). I think part of the reason is because I have taken so many prescription and over-the-counter medications for so many years, that I'm trying not to add anything else foreign to my body. Maybe it's my form of rebellion.

The exception to my no-medication mantra is when I feel a migraine coming on (which has been a rare occurrence this year). Anyone who has had a migraine will understand!

I'm hoping that this no-major-crash thing sticks around. If I make it to the weekend without a major crash, that means this year's flu shot was a good one for me. I'm feeling hopeful.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.0 low-grade fever, nausea, mild vertigo, full body aches, painful injection site, mild itching. Update (later evening): diarrhea.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Got the Regular Flu Shot Today

Ugh. I got the regular flu shot today, and my body is not enjoying it. I ache all over, have a low-grade fever, and just had a nasty bout of diarrhea (which I doubt has anything to do with the shot, but it certainly adds to the discomfort). Basically, this is what the beginning of a crash feels like.

I know there is some debate about whether people with CFIDS should get the shot, but both my regular PCP (who treats a lot of patients with CFIDS) and my allergist have always recommend it for me...especially because I have asthma.

I now make it a priority to get the flu shot every year because the two years I decided not to get the shot (ages 23 and 24...or was it 22 and 23?), I caught the full blown flu with 101-104 degree fevers to boot. Having the flu with asthma is awful and scary. With the flu shot, I've managed to avoid any major cases of influenza.

I'm hoping that I don't have a big crash as a result of this injection. Sometimes I bounce back to "normal" quite quickly after the flu shot, sometimes I don't. Only time will tell.

Today's Activities: home (1/2 day), work (1/2 day). Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.2 low-grade fever, nausea, full body aches, painful injection site, diarrhea, mild itching.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 7

More Deficiencies in My Blood

Well, I finally got back my lab results from the micronutrient blood tests that I first mentioned in my July 2 post Human Pin Cushion and again on September 10 in All Sorts of Updates.

These test results add to the ever growing pile of scientific evidence that my body is not functioning effectively.

The results indicate that I am currently deficient in:

• Vitamin B2 (by a lot...this surprised me a lot)
• Glutathione (old news...I've known this for years)
• Coenzyme Q-10 (by a lot...this surprised me a little)
• Overall antioxident function (probably because of the Coenzyme Q-10 and glutathione deficiencies...not surprising at all)

The Vitamin B2 deficiency surprised me because it's not a very common deficiency. What's even more amazing about this finding is the role of vitamin B2 in the body. According to MedicineNet.com:

Vitamin B2 helps break down carbohydrates, fats and protein for use by the body. Its role in maintaining an energy supply for the body is crucial, for it helps convert carbohydrates into adenosine triphosphate (ATP), a compound needed to store energy in muscles.

The signs and symptoms of vitamin B2 deficiency include visual problems, such as cataracts and excessive sensitivity of the eyes to light (photosensitivity). There may also include reddening of the lips with cracking at the corners (cheilosis), tongue inflammation (glossitis), skin inflammation (dermatitis), swelling (edema), dizziness, hair loss, insomnia, trembling and delayed mental response.

Of the symptoms listed, I experience photosensitivity, reddening and cracking of the lips, dermatitis, edema (especially in my hands and fingers), dizziness, hair loss, insomnia, and delayed mental response. And, of course, I have a documented lack of ATP. Woah.

In addition to the newly listed deficiencies, I've previously been diagnosed with vitamin D, iron, glutathione, and cyclic-AMP (ATP) deficiencies. Fortunately, my vitamin D and iron levels have been under control for a while thanks to all the extra supplements I've been taking.

I've added the following supplements to my growing list of daily supplements (these dose recommendations came along with my lab results):

• 50 mg Vitamin B2
• 150 mg Coenzyme Q-10

The test results also show that I am just barely adequate in Vitamin B12, Folate, and Pantothenate. I could stand to increase my Vitamin B6 (Pyridoxine) levels a bit, as well.

As a result of the lab results and recommendations, I have also decided that this is the right time to increase my doses of the methylation protocol that I mentioned in Starting a New CFS Treatment Plan. I'm hoping the increase will help with my B12 levels among other things.

Previously I was taking -- every other day -- the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate, 1/4 tablet of the Neurological Health Formula, the recommended 1 softgel of the Phosphatidyl Serine Complex, and a 1/2 tablet of the Activated B12 Guard.

I have now increased to 1/2 tablet of the Neurological Health Formula and a full pill of the Activated B12 Guard. I am continuing to take the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate and the recommended 1 softgel of the Phosphatidyl Serine Complex. I have decided to continue this treatment plan on an every other day basis.

Once my body adjusts to all the extra supplements, I plan to start taking the methylation protocol on a daily basis...which I hope will help my folate levels.

I hope to get this micronutrient test done again in about 6 months to see if I have made any improvements. I also hope that my energy starts to improve with the added supplements.

With all these changes in my supplements, I'm going to try to post an updated list soon.

...

I just figured out how to post my latest medications and supplements document (thank you to Sue Jackson for the format). Click on the image below, and it should take you to a bigger version.

Update at 5:15pm: In case you were wondering where I got my micronutrient testing done, it was through SpectraCell Laboratories.

My GI doctor ordered the test at my request. It had already been determined that I was deficient in vitamin D and iron, but I wondered if I could be deficient in even more nutrients. At the time my test was to be ordered (in July 2009), I was told that my particular insurance plan would not cover this expense. I wanted the test done anyway. It was well worth the cost.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.1 low-grade fever (again!), nausea, itching.

Mood (10 is best): 8
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Discovery: XMRV Retrovirus Linked to CFS

Image of XMRV from Whittemore Peterson Institute

Wow! This discovery is all over the news. Check out these articles:

Scientific American "Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis"

National Cancer Institute "Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome"

Medical News Today "Retrovirus Linked To Chronic Fatigue Syndrome"

New York Times "Virus Is Found in Many With Chronic Fatigue Syndrome"

Reuters "Study isolates virus in chronic fatigue sufferers"

The Independent "Has Science Found the Cause of ME?"

Nature "Virus linked to chronic fatigue syndrome"

NPR "Virus Linked To Chronic Fatigue Syndrome" (includes link to audio recording)

ABC News Video "CFS Linked to XMRV Virus" (approx 1 minute)

CFIDS Association "Landmark CFS research reported in Science magazine"

BBC "ME virus discovery raises hopes"

US News and World Report "Retrovirus May Be at Root of Chronic Fatigue Syndrome"

The Australian "Chronic fatigue linked with virus"

The Wall Street Journal "The Virus That Links Prostate Cancer & Chronic Fatigue Syndrome"

Telegraph "Most cases of chronic fatigue syndrome linked to virus"

The Washington Post "Virus Associated With Chronic Fatigue Syndrome"

WebMD "Retrovirus Linked to Chronic Fatigue Syndrome"

Whittemore Peterson Institute for Neuro-Immune Disease: Overview and Q&A about their research

This post is short because I'm on my lunch break. I'll add new links as I find them.

Update: The list of articles goes on and on. Too many to list! I can't even express in words how much hope this gives me...

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, itching.

Mood (10 is best): 9
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Video: What Would You Do?

The CFIDS Association of America created this moving video using responses from 1,784 CFS patients to the question: "What would you do if you were completely well tomorrow?"

The CFIDS Association has also created a new website called Solve CFS, as part of a campaign to raise $5 million for research by the end of 2010. If you look closely at the website's banner, you'll see Kenny's and my photos. :)

Today's Activities: traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, probable low-grade fever, itching.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

Another Itchy Update

I'm happy to report that the itching is loads better than it was when this whole ordeal started. I'm still getting itchy spells, but they are not nearly as intense or long-lasting as before. Amazingly, I haven't used any diphendydramine (generic Benadryl) or any other type of antihistamine since Thursday, October 1.

I am now convinced that my horrible full-body itching spell is a result of my stopping the cetirizine (generic Zyrtec) on Wednesday, September 23.

What's odd about the itching is that there was NO rash that accompanied the itching. I have eczema, so I'm accustomed to having visible evidence of intense itching. I have to say the whole experience has been a little surreal. Anyway, my hope is that itching will be completely gone within another few days.

On the downside, I'm dealing with low-grade fevers again. After a few days of normal temperatures, I had a 99.1 temperature yesterday. Bummer. I haven't taken my temperature today, but I feel like I have a fever.

I'm writing this post at the airport. I have a quick business trip this week. Today is a travel day, tomorrow I work, then I fly back home on Thursday. Luckily, I don't have anything to do other than check into my hotel and eat dinner once I arrive at my destination.

Oh, CFIDS, I'm ready for you to take a hike!

Today's Activities: work & traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore muscles, nausea, itching, mild headache, probable low-grade fever.

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

Update at 8:30pm on 10/6/09: One of the symptoms of my CFIDS that I dislike the most is nausea. Flying while nauseated is not my idea of a good time. Fortunately, I did not throw up on the plane, though I might have if the flight had been any longer.

I started feeling better by the time I got to a restaurant for dinner, so I even ended up ordering a dessert -- vanilla bean cheesecake. Bad idea. I started feeling car sick while driving back to the hotel, and once I got to my room, I threw up. Ugh. I hate throwing up. And the worst part is that I am still nauseated.

Itchy Update

The itching seems to be getting better...slowly but surely. (See I'm Insanely Itchy! for background.

Here's my timeline of itchiness:

• Wednesday, September 23: Stopped cetirizine (generic Zyrtec)


• Saturday, September 26: Starting itching a LOT, took 50 mg diphendydramine (generic Benadryl) before bed


• Sunday, September 27: Itching continued, took 50 mg diphendydramine before bed


• Monday, September 28: Itching continued, took 50 mg diphendydramine before bed


• Tuesday, September 29: Took nothing because allergy testing was to happen the next day.


• Wednesday, September 30: Itching worse than ever, took 50 mg diphendydramine before bed


• Thursday, October 1: Itching not quite as bad, took 25 mg diphendydramine before bed


• Friday, October 2: Took nothing because itching not quite as bad


• Saturday, October 3: Plan to take nothing because itching not quite as bad

Now don't get me wrong, the itching is still very uncomfortable. I'm just trying to stop taking any antihistamines for now to see if I really was having a reaction to stopping the cetirizine (generic Zyrtec).

I've discovered lotion that seems to be soothing my skin a bit. It's called Itch Relief Lotion with Tea Tree, E and Chamomile by Derma E. It's natural, paraben-free, and does not contain any cortisone, so I'm able to slather copious amounts all over my very itchy body. It is really stinky going on, but it dries pretty quickly.

I'm also using lots of ice packs.

Aside from all the itchy skin, my other allergies (stuffy nose, itchy ears and eyes) have not really bothered me much even though I haven't taken any antihistamines for about 48 hours. I definitely think I have my immunotherapy (allergy shots) and regular nasal washing to thank.

As I'm writing this post, the palm of my right hand is starting to itch intensely. I'm going to get an ice pack.

Today's Activities: home. Today's Most Annoying Symptom: ITCHING!

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5 (because of the itching)