Thursday, December 23, 2010

Misdiagnosis and Letter to Old Neurologist

A few people have asked me how I was even diagnosed with epilepsy to begin with. I am still trying to figure out the full answer to this question. However, I think the main reason is because the general neurologist that misdiagnosed me misread my (multiple) EEGs. He read my normal EEGs as having extensive seizure activity.

Why the confusion?

According to the epilepsy specialist I eventually saw, my EEG results showed that I was drowsy during the tests. People who are drowsy have different brain waves than people who are wide awake. If you've ever felt that your brain was asleep, it probably was! Unfortunately, the general neurologist who misdiagnosed me incorrectly interpreted the drowsy brain waves as seizure activity.

To be fair, the general neurologist did ask me about my medical history before officially (mis)diagnosing me with epilepsy. To be equally fair, I answered his questions as accurately as possible. I explained my entire medical history (asthma, allergies, eczema, bruxism, IBS, PCOS, sleep apnea, migraines, tinnitus, thalassemia minor, etc.). I also told him about my ME/CFS, including the neurological problems associated with it (brain fog, memory problems, attention problems, insomnia, etc.). I can only assume he believed my neurological symptoms to be from seizures. How wrong he was.

Following is an edited version of the letter I sent to the neurologist that misdiagnosed me with epilepsy. As I mentioned in my last post, I don't expect a response; however, I think the doctor needs to understand the danger of incorrectly diagnosing someone. 


Dear Dr. S,

As you have probably already learned, Dr. D, epileptologist at the C Epilepsy Center, has examined my case. After reviewing my medical history and EEG results (three from your office and one ordered by Dr. D), he has determined that I do not have epilepsy.

After living with the epilepsy diagnosis and having been on antiepileptic drugs for nearly a year (and suffering from side effects, including an anaphylactic reaction to Trileptal), this news came as quite a shock. While I am thrilled and relieved that I do not have epilepsy, I am trying to understand how I could have been so wrongly diagnosed. According to Dr. D, all of my EEG results appeared normal and my medical history did not indicate epilepsy. He asked me why an EEG was ordered in the first place.

I have since stopped taking Keppra and Topamax. Many of the symptoms I was complaining about -- extreme fatigue and weakness, difficulty going up stairs, twitching, difficulty thinking -- have improved dramatically. It appears that medication side-effects were the cause of many of my problems.

Because of the diagnosis, I was prescribed unwarranted medications, had unnecessary medical appointments and tests, experienced a life-threatening event resulting in hospitalization, and missed long periods of work. My husband also paid a price; he took off work on multiple occasions to drive me to medical appointments and had to undertake additional responsibilities at home because I was too exhausted to help. All of these events took a physical, mental, and financial toll.

I am writing because I want you to understand that this misdiagnosis greatly disrupted every aspect of my life for the past year. I shudder to think how much more suffering I would have undergone had I not referred myself to an epileptologist. I hope you will consider my case a learning experience, as I do not want others to endure what I have been through. Perhaps, taking additional classes on reading EEG results or referring possible epilepsy patients to a specialist for a second opinion would be a good idea. Familiarizing yourself with medication side effects might also be beneficial. Patients would respect you more for proactively looking out for their well-being.

I would be grateful for any response you might have regarding my misdiagnosis. I am trying to comprehend the last year.

Sunday, December 19, 2010

I Don't Have Epilepsy

The title sums it up.

I apologize for the delay in my post. The past few weeks have been quite an emotional roller coaster, and the past year has been one of the most challenging of my life. Obviously, not having epilepsy is great news because it's one less thing for me to worry about, yet some of the happiness I should be feeling has been overshadowed by the anger and sadness I have surrounding the misdiagnosis. I do not understand how the neurologist that diagnosed me with epilepsy could have been so wrong. I only went to see him for migraines! Epilepsy wasn't even a consideration.

I am not exactly sure how to explain what's going on in my head, but I'll try.

I was diagnosed with epilepsy in December 2009 and was immediately put on horrible anticonvulsant medications that only someone who has taken them can understand. I suffered the consequences of the epilepsy diagnosis from December 2009 through November 2010, when it was finally determined that I do not  have epilepsy.

Medication side effects ranged from annoying and unpleasant to horrific and life-threatening. Some of the side effects were magnifications of symptoms I already experience from the ME/CFS, while others were new symptoms altogether. Medication side effects included extreme fatigue and weakness, difficulty going up stairs, twitching, trouble thinking and processing information, mood changes, hormone imbalances, mild rashes, swollen hands and feet, exacerbation of RLS, worsening insomnia, tremors, uncontrollable eye movements, nausea, headaches, dizziness, severe memory problems, hair loss, and anaphylaxis.

The last experience (anaphylaxis to Keppra) was the most traumatic. I was home alone when it happened and had to call 911 for myself. I still have flashbacks of the event when I see ambulances, hear sirens, or see the hospital I was taken to. I sometimes wonder what would have happened had I not called for help. Would I have suffered from more serious complications, or might I have died?

Even after I stopped the medication that caused the allergic reaction, my body stayed in a highly allergic state for weeks after the event. Additionally, I strongly reacted to the steroids I was put on – developing Cushing's Syndrome-like symptoms, including swelling of my face, fat pads on my shoulders and back, excess fat around my middle, weight gain, acne, and chronic yeast infections. Though I have not taken any steroids for several months, I still have some of these symptoms.

I went on Short Term Disability twice as a direct result of the epilepsy medications. The first time I took disability for epilepsy I was already on disability for another reason (poor reaction to a lumbar puncture), but the neurologist recommended that I extend it for about a month so that I could adjust to my new medications. The second time was because of my allergic/anaphylactic reaction to Trileptal.

Technically, I was not supposed to drive anymore because of the epilepsy diagnosis. Because I never lost consciousness, I made the decision to continue to drive myself to and from work (which is about 5 miles away). I stopped driving anywhere else, so my husband had to drive me to medical appointments and anywhere else I needed to go.

Towards the end of October, however, I made the decision to stop driving altogether. It was my understanding that I was still having seizures (according to my neurologist), even though I'd never once lost consciousness. I didn't like the idea of breaking the law (people with uncontrolled epilepsy are not supposed to drive in my state) or putting others at risk by driving with epilepsy. I started to ask around at work to find out if anyone lived close enough that they would be willing to drive me to and from work. One of my coworkers said that maybe we could organize some sort of carpool rotation where different people would drive me on different days of the week. If I had not seen the epilepsy specialist who determined that I do not have epilepsy, I would not be driving today.

Epilepsy is a life-long condition that affects every aspect of one's life. The neurologist that diagnosed me told me that I would be on medications for the rest of my life. He said that if I hadn't started medications, my seizures would likely progress to tonic clonic seizures (aka grand mal) and possibly permanent memory loss. I was scared about getting pregnant while taking epilepsy medications because of the terrible effects most of the medications can have on a fetus. I had a medical ID bracelet that would inform emergency medical personnel of my epilepsy diagnosis and allergy to Trileptal. I was terrified that the next pill I took would put me in the hospital again or kill me.

It's been said that if you really want to understand someone, you should walk a mile in their shoes. Well, I've walked about 10,000 miles, and I can tell you that epilepsy is not something to be taken lightly. I wrote a letter to the neurologist that misdiagnosed me to ask him how he could have misdiagnosed me. I am not expecting a response, but I think it is good for him to understand the consequences of diagnosing (or misdiagnosing) someone with epilepsy. (I will post a copy of the letter later. I first have to edit it for privacy reasons.)

This whole experience has made me a stronger advocate for my own health needs. I had doubts about the diagnosis to begin with, but it took a life-threatening emergency and nearly a year's worth of suffering for me to seek a second opinion from a specialist. From now on, if anyone decides to diagnose me with something serious, I will be seeking a second opinion from a specialist -- no matter how obvious the diagnosis seems or how expensive a second opinion ends up being (because it might be less expensive in the long run).

I now feel the need to do some research on the misdiagnosis of epilepsy. I want to know how common misdiagnosis is because I am concerned that my old neurologist might be doing this with other patients. If he read my normal EEG's as being completely abnormal with lots of seizure activity, how can anyone trust him to be reading other patients' EEG's correctly?

Sorry about the long post, but I've had a lot on my mind. Writing about it is cathartic.

Thursday, November 11, 2010

EEG Tomorrow

Tomorrow I have the EEG the epilepsy specialist (a.k.a. epileptologist...I think) ordered for me. I'm looking forward to this latest EEG because I'm hoping it will help give me some sort of definite answers.

Because I want the good doctor to have as much information as possible before he makes a definitive diagnosis either way, I called my old neurologist's office earlier this week and asked if they would burn a CD of my previous three EEG's and mail it to me or to my new neuro. (If you'll recall, paper printouts of my previous EEG's were sent over to the epilepsy clinic rather than electronic versions.) They agreed to mail it to me (though I'm not sure why they didn't want to mail it directly to the epilepsy center even though I'd already signed a release form...). I should be receiving the CD in the mail any day now.

My hope is that with four clear EEG's (three old ones plus the one tomorrow), the epilepsy specialist will have a much better picture of what's going on in my head -- literally!

In other news, I've been tapering off one of my epilepsy medications, Keppra. I've been on a lower dose for over a week now, and I am starting to feel a bit better. While on higher doses of the medication, I was having the worst brain fog ever (even worse than normal ME/CFS brain fog), terrible memory issues ( I would forget what I was doing or saying in the middle of doing or saying it), horrible weakness (getting up stairs was worse than ever), head tremors, eye rolling, and more. I've also suspected that the Keppra was causing my hair loss and exacerbating my restless leg syndrome.

I still have brain fog, memory issues, and weakness, but they seem to be improving bit by bit. The head tremors and eye rolling have nearly stopped, my RLS does not seem to be quite as intense, and my mood has improved. On the down side, I've had terrible headaches since I've been on the reduced dose. I've gotten headaches every time I've started a new epilepsy medication or increased a dosage, so I suppose it only makes sense to have the headaches as I'm lowering the dosage.

I can't wait to be completely off the Keppra. I've suspected for a while that this particular medication was causing side effects, but my old neurologist thought I should stay on the medication (even though I kept complaining to him).

From now on, I will trust my instincts and be a stronger advocate for myself.

I can't remember if I've already mentioned this in a previous post, but ever since I started the epilepsy medications nearly a year ago (December 2009, in fact), my triglyceride levels have been extra high. More recently, I learned that my cortisol levels are high as well. My body demonstrated the effects of having high triglyceride and cortisol levels in a textbook fashion -- I gained quite a bit of weight, mostly around my middle. I looked pregnant without being pregnant. At my worst, I could no longer fit into most of my work slacks; however, I refused to buy new clothes because I didn't want to accept my new rounded shape.

To try and combat these issues, I started taking omega-3 krill oil -- which has no fishy aftertaste -- for the high triglycerides. I was taking fish oil for a while, but I got tired of the fishy aftertaste -- which I got even from the supplements marketed as being "odorless." Then I resumed taking phosphatidylserine complex (which I had been taking for the ME/CFS but stopped when my list of drugs and supplements became overwhelming) for the high cortisol.

I think the supplements must be helping, because I can now fit into more of my clothes without the assistance of my really uncomfortable waist cincher. I have not had my triglycerides or cortisol retested, so my evidence at this point is purely anecdotal. I'll take it, though. Fitting into the right sized clothes is good for a woman's ego.

I won't get my EEG results until the next week or so, but I'll be sure to post an update.

Tuesday, November 2, 2010

It Might Not Be Epilepsy?!

I might not have epilepsy.

Everything has happened so fast that I'm still processing the recent events.

I saw the epilepsy specialist on Monday. My mom came into town to accompany me since my husband was unavailable that day. After reviewing all the medical records I had sent over to the epilepsy center (including previous EEG's), interviewing me, and giving me a neurological exam, the doctor said that he did not think I had epilepsy.

What?! I looked at the neurologist in shock.

He said, "This is good news! You don't want to have epilepsy." I suppose he was expecting me to cheer or at least smile.

I couldn't smile. All I could think about was how the past year of my life was one of the worst of my life. Ever since starting epilepsy medications, I have felt sicker than ever. I nearly died in May from one of the medications. I'm losing my hair, my entire body is weaker than ever, my memory is worse than ever, and I have all sorts of problems I never had before.

All of the suffering and all of the pain over the last eleven months have been for nothing. I suffered through horrific side effects and put my body through tremendous stress for nothing. I almost died for nothing.

I wanted to cry.

I was suddenly angry at my previous neurologist. I asked the epilepsy specialist how I could have been so wrongly misdiagnosed. How could this have happened? How could my previous neurologist have been so wrong? Of course, the epilepsy specialist couldn't really give me an answer. I said that my old neurologist needed to know that he was wrong and asked if the specialist could send over a copy of his findings.

I am still going to have another EEG that the epilepsy specialist is going to review just to be sure. The EEG results that were sent over by my previous neurologist's office were a bit difficult to read because they were printed out on paper and condensed, rather than sent on a CD or DVD which would have made the spikes and waves easier to interpret.

At this point, I'm not sure what to think or how to feel. I think I am mostly in shock. I don't really feel anything.

I'm not going to get my hopes up just yet. I'm too afraid to believe that I don't have epilepsy just in case I actually do. At the same time, if I don't have epilepsy, I'm back at square one -- trying to figure out what to do to feel healthy. For a while, I had hoped that the epilepsy medications would "fix" everything that was wrong with me. Unfortunately, the medications seem to have done the very opposite and hurt me instead.

On the upside, I am now tapering off one of my epilepsy medications, Keppra. The epilepsy specialist believes that it is the source of many of my recent problems. I am hoping that the hair loss, extreme weakness, high cortisol levels, high triglycerides, and even some of my neurological issues will improve with time.

There is so much more the epilepsy specialist said, but I am too tired and overwhelmed to write about it.

Saturday, October 30, 2010

New Neurologist Appt on Monday!

I am very excited that I was able to get an appointment with my new neurologist for Monday.

My new doc is an epilepsy specialist at an epilepsy center. On the recommendation of my local Epilepsy Foundation, I called back in September to try to get an appointment, but the earliest they could schedule me was for December. Though frustrating that I couldn't get in sooner, I took the delayed appointment as a good sign because so many people are clamoring to get in to see him.

On a whim I called the epilepsy center last week to ask if there was any way they could call me in for an earlier appointment if anyone happened to cancel. The woman I spoke with told me she'd be happy to put me on their list of people to call.

Well, someone cancelled their Monday appointment! And the best part is that I got the call on my birthday. :) What a great birthday present.

I have high hopes about this appointment (perhaps, too high?) because I have been experiencing growing disappointment with my current neurologist. He is not an epilepsy specialist and has more recently not been treating me with much compassion. My husband who usually accompanies me to my neuro appointments was shocked at how rudely the old neuro treated me at my last appointment.

I've been on too many epilepsy medications to count, most of which have caused (or are causing terrible side effects). I am losing my hair, my hormones are off balance, I can barely get up a flight of stairs (it's worse than usual these days), and I feel extremely weak all the way around.

The doctor didn't seem to think these things were that big of a deal. He told me to go find an endocrinologist to deal with my hormones because my case was "too complicated" for him to deal with. He then ordered a new EEG and some blood tests to try to figure out what's causing my weakness, but he basically brushed me off. In his defense, maybe he was having a bad day.

(Unfortunately, the EEG showed that I am still having seizures, and the blood tests showed abnormally high morning cortisol levels. The weirdest thing is that I still can't tell when I'm having seizures for the most part because I simply do not lose consciousness. I have plenty of brain fog, though. Did I ever mention that my old neuro said I probably don't have absence seizures? He now thinks they're simple partial.)

Either way, I'm happy to be going to an epilepsy specialist. I'll keep you updated.

Tuesday, October 12, 2010

A Fresh Start (for my blog)

I've been feeling particularly frustrated with doctors (two, in particular) the past couple of days, so I thought I'd cheer myself up by sprucing up my blog. Unfortunately, my brain fog is pretty thick right now, so I've made a few mistakes.

In trying to rearrange some the layout of my blog, I accidentally deleted some things I didn't mean to delete. If I deleted your blog (or if you blog about ME/CFS or epilepsy and it's not listed), please respond to this post with your blog address.

If you notice anything else that's missing, just let me know. Thanks!

Sunday, October 10, 2010

I Think I've Won the Genetic Lottery

I feel like I'm watching my own life pass me by. My last post was in July. Suddenly it's October, and I'm about to turn 32.

I'm not a statistician, but the odds of having both CFIDS and epilepsy have got to be slim to none. Add in the fact that I have some not-so-common conditions (like thalassemia minor and unusual drug allergies) in addition to a combination of fairly common conditions (like PCOS and asthma), I am pretty sure it's safe to say I'm a medical oddity.

I think I must have won the genetic lottery.

This past year has been one of the most challenging of my life. If you're a regular reader, you'll notice I've modified the title of my blog. I've added my epilepsy diagnosis. The past year has been consumed with the exhausting task of trying (and failing) to find the correct combination of medications that works for me.

So far, no success.

I think that part of what is making everything so complicated is my CFIDS. My immune system simply does not seem to function correctly, so I don't react to many medications the way I'm supposed to. It's my dumb immune system that almost got me killed in May when I had an anaphylactic reaction to Trileptal -- an epilepsy medication. I'm still not ready to write about the entire experience, but you can probably figure out it was traumatic for me.

More recently, I reached toxic levels of one of the epilepsy medications I'm on. I started feeling extremely sick (more than usual) every day and would often wake up with my eyes rolling around with my head shaking. It was not pretty. We've backed off that dose, and I'm doing a little better (I think), but I'm still exhausted.

I have so much to say, but so little mental energy. Maybe I'll write another post in December...though I hope to write something sooner! ;)

Wednesday, July 14, 2010

How Can It Possibly be July?

I didn't exactly mean to take this long of a break from blogging... Thanks for all your patience (and hello to my new readers)!

So much has happened -- both good and bad -- since my last post. Oddly, most everything seems to involve large sums of money. Here are the highlights:
  • My old car died, so I had to get a "new" used one. Where I live public transportation leaves much to be desired; thus,a car is a necessity. I have to admit, though, I was not that sorry to go shopping for a newer model. It was actually pretty fun. Unfortunately, we had to take out a loan because we didn't want to spend the money we had saved for our home down payment (see below). Fortunately, we got a good interest rate and hope to pay off this loan by the end of the year.
  • Of course, not long after we plopped down a bunch of money for a car, a bunch of unexpected expenses popped up (it's funny how things often seem to work out that way). I started having uncomfortable tremors due to the antiseizure medicine I had started (Depakote ER). Writing and other fine movements became difficult. I stopped that medicine, started having even more seizures (simple partial), then had to try out some different meds. I had too many doctor appointments to count. Prescriptions and medical appointments -- even with insurance -- can get very expensive when you have so many of them.
  • While all of the above was going on, we were working on trying to buy a home...something we'd been saving up for (the down payment, that is)for a few years. We saw quite a few houses before we found a "dream" home that was within our budget. It's got two bedrooms and two and a half baths. There are some minor problems and cosmetic issues we've been slowly working to fix, but it's been amazing to call this place ours.
  • Not long after we closed on our home and before we actually moved in, I had a terrible reaction to the antiseizure medication I was on at the time (Trileptal). The reaction I had was anaphylaxis. I was alone at the time and had to call 911 for myself. I was taken by ambulance to an emergency room and given life-saving treatment. Because the reaction was so severe, they admitted me into the hospital to monitor my breathing. Though life-threatening, anaphylaxis has a fast recovery time when caught and treated early enough. I was released from the hospital the next evening. I ended up on short-term disability (again) for about a month. I'll write about this experience in detail in another post. I was pretty traumatized by the event.
  • Most recently (this month, in fact), I started a new job. It has better hours, better benefits, better pay, and requires less energy. I'm sure you can understand why I accepted the position! It was tough leaving my old job after five years, but the timing felt right...especially after the rough year I've had. Having gone on short-term disability twice in one year was not my idea of a good time; however, I think it was my body's way of telling me to give it a break.
Anyway, I need to get to bed.

Sunday, February 28, 2010

Too Tired to Blog

I've been so mentally and physically tired the last few months that I haven't been very good about blogging.

There have been so many times when I've thought something would be a great topic to blog about, but I was simply too tired to write. I hope to blog more as I begin to feel better.

I can't believe March starts tomorrow. Tempus fugit.

Sunday, February 14, 2010

Back in the Saddle Again...I Think...

Hello everyone!

I'm finally back at work. Actually, I've been back since the beginning of this month, but I just haven't had the mental strength to write a post.

The last few months have been some of the most physically exhausting and emotionally draining months I've had in a long time:

Lumbar puncture. Spinal fluid leak. Blood patch. Severe exacerbation of my CFIDS. Nonstop fevers. Nausea. Out of work on disability. Increased frequency and intensity of headaches. Chronic migraines. Insomnia. Memory problems. Epilepsy diagnosis. Out of work even longer. New medications for epilepsy. Side effects. Vulvar vestibulitis diagnosis (female problems). Medical expenses. Etc., etc., etc.

Because everything happened in such a short period of time, I started to feel sorry for myself. I just couldn't get a break! Then after the earthquake in Haiti happened, I felt guilty for feeling sorry for myself because I thought I should be grateful that I had food, water, and shelter. Instead, I felt even worse because I was feeling terrible for myself and the people of Haiti. I was having a pity party.

On the upside, I'm starting to feel better.

Physically, I've improved quite a bit since the lumbar puncture in November. My CFIDS seems to be almost back to its previous state. Of course, I'd rather it be gone altogether, but I'm glad I can function again. I'm also sleeping better, and my memory has improved. I wonder how much of my memory improvement has to do with sleeping better and how much has to do with the epilepsy medications.

I'm doing better psychologically, too. I've had some time to process all that's happened and adjust to my new normal. The improvement in my health and improved sleep have undoubtedly helped my mood. I'm physically weaker than I was before, and I'm still dealing with some unpleasant side effects from my new meds, but being back at work among people I like has done wonders for my mood. It's also given me back a sense of normalcy.

This post has taken a lot out of me, so that's all for now.

Happy Valentine's Day!

Monday, January 11, 2010

Happy New Year!

I haven't been blogging much lately because I've been focusing on my health, but I thought I'd come out of my cave and say hello.

I've had a rough time adjusting to the new antiseizure medications (feeling sleepy, dizziness, headaches, nausea, etc.); however, I'm hanging in there!

My neurologist knows that people with CFIDS are often more sensitive to medications than other people (and he knows that I am particularly sensitive to various medications), so he started me on lower doses of the antiseizure meds. This technique would allow more time for my body to adjust to the medications.

I am now on the maintenance doses of both antiseizure medications (as of Friday). The side effects of this level are starting to subside...I think. Well, at least they seem to be better today than they were yesterday.

On the upside, I've FINALLY been sleeping better thanks to a combination of the antiseizure medications and Ambien CR. My memory is starting to improve, and I'm thinking more clearly. Hooray!

I have been doing some digging, and I've discovered a few bits of interesting information related to my new epilepsy diagnosis (absence seizures).

First, I looked up absence seizures on the internet, and found that absence seizures are most common in children and usually do not start in adulthood (though my body has not followed the "getting sick" rules for years).

I also found multiple examples of what absence seizure activity looks like on an EEG (if you click on the above link and scroll down, you can see an example). Unfortunately, my EEG looks very much like the example EEGs I found. What was most striking to me was the following phrase on the Epilepsy Foundation website regarding absence seizures: "the absence attack is always associated with the strikingly typical EEG abnormality of spike and slow wave discharges, usually at a frequency of 3Hz."

Second, not long after my diagnosis a few weeks ago I remembered that I'd had a sleep study done in 2007. Part of a sleep study involves a night-long EEG. Conveniently, I had an appointment with my regular doctor just after I remembered this interesting tidbit and made sure to ask her about my sleep study results (which she had in her possession as part of my medical record).

Long story short: It turns out that the sleep lab did not mention any abnormalities in my EEG. (I should have known this would be the case, since I obviously would have been notified at that time if there had been any EEG abnormalities.)

I have come up with a few different scenarios as a result of all this information: (1) I developed epilepsy recently, (2) I do not have epilepsy and my recent EEG was a fluke, (3) I have had epilepsy since childhood but the first EEG did not catch seizure activity, (4) the seizures are a new symptom of my CFIDS.

I don't know which scenario is correct, but I'm sure I'll learn in time. I just want to be well!

Today's Activities: home. Today's Most Annoying Symptoms: headache, sore throat, upper back pain, air hunger.

Mood (10 is best): 5
Energy Range (10 is best): 1-3
Physical Discomfort (10 is worst): 6

P.S. Happy New Year!