You're Fired!

Two minutes into my appointment my narcolepsy specialist basically pulls a Donald Trump and tells me he no longer wants to be my doctor. Why? Because he just found out I'm taking hydrocortisone for severe adrenal fatigue. He tells me there's no such thing as adrenal fatigue and that I'm getting "bad information" from my doctor. He said, "You do NOT have adrenal disease. Have you ever SEEN what a person looks like who ACTUALLY has adrenal disease"? To which I reply, "Yep. Every time I look in the mirror." I also told him that I was not asking his advice on hormone-related issues, just as I don't ask my hormone specialist to treat or advise on my narcolepsy.

I've butted heads with this doctor before over my holistic and integrated approach to medical treatment. But he's used to "knowing everything" and having patients just blindly accept his advice. The problem is, the drugs he had me on caused me to gain 70 pounds, made my depression worse, gave me kidney stones, atrial flutter, stomach ulcers, tooth enamel damage, etc. At one point, I had to decide that the pharmaceutical cocktails were only making me worse. He's had a bee in his bonnet ever since.

Ordinarily, I would have already said "sayonara" to a doctor with such an obvious god complex. I mean, I don't drive ten hours round-trip to see this guy because he's so warm and fuzzy. The problem is, he's the only doctor I've found that is knowledgeable about narcolepsy with cataplexy and is willing and able to prescribe Xyrem, the medicine I take that helps me to get restorative sleep. It's the ONLY narcolepsy-related pharmaceutical that I take, and I have found NOTHING else that comes to close to working well for me. In addition, I'm smack-dab in the middle of my Social Security Disability case, and he's the main doctor that is providing documentation of my disability.

So three minutes into my appointment, I go into a full cataplexy attack. Meanwhile, he's telling my husband that 5-htp, which I'm taking instead of antidepressants to help treat catapexy, killed a bunch of people several years ago. Total lie. And that it comes from China. Total misinformation. I don't know if he learned his scare tactics from the democratic party or what. There was a tainted batch of L-tryptophan that killed some people many years ago. But 5-htp is NOT L-tryptophan. And the company that makes it does not get their ingredients from China.

Two cataplexy attacks later, I leave with the answer to only ONE of the narcolepsy-related questions I needed addressed at this semi-annual visit. So he did at least decrease my Xyrem dose to address the sleep eating problem. Apparently this is common when your dose is too high. Who knew? I've gained about 15 pounds since I started sleep eating, so at least one positive thing came out of the visit. But now I have start all over with a new doctor, after I had to fight my HMO to get special permission to go outside my service area to see THIS winner. If anyone knows of a narcolepsy specialist in the Northeast Florida area that doesn't have H.U.B. Disease, AND is knowledgeable about Xyrem, please let me know!

Chariots and Horses

Sometimes I forget just how much I lean on my husband. As a housebound person with multiple chronic illnesses, including narcolepsy with cataplexy , there are a lot of things I just can't do for myself. He is my caretaker, my closest friend, and the person who best understands my limitations. When he's not available to me, it's pretty scary. He's on a missions trip in another country right now, and I've been basically alone except for a person who comes to sit with me at night (lest I burn the house down or fail to wake up from my strong sleep medicine should it begin to burn down around me).

Recently he had a very scary, dire incident with his diabetes, and I had to call an ambulance. In addition to worrying about his life I remember thinking, "What am I going to do if something happens to him? Who's going to take care of ME?" Watching him deteriorate quickly from insulin shock right before my eyes was one of the scariest things I ever had to experience. I just kept praying, "Jesus, help me!" in pure desperation, over and over. Because he's such a strong person and focuses most of his energy on caring for ME, it's easy to forget that he has physical limitations too.

With his being gone this week, I've had a renewed sense of how much I depend on him not only for my physical needs, but also for emotional support for the struggles of life. I've had a couple of melt-downs, especially upon hearing that he's had some really rough times with minor insulin shock on the missions trip. My parents and my best friend, who are hundreds of miles away, have done their best to comfort and encourage me, but God began reminding me today that He is my rock, my shelter, my deliverer, my defender, and my refuge. Even when I'll all alone in the physical sense, He is here to hold me up.

I was struck by how important it was for ancient kings to have an arsenal of strong horses and the best chariots so that they could defend themselves in battle, much like our military today depends upon tanks, planes, and weapons for our defense. But King David wisely realized that he could not trust in any sword, or spear, or chariots, or horses to deliver him because the battle is the Lord's, and He is the one who would deliver them. It's so easy for me to see my husband as THE one who meets my needs, and I'm thankful to have someone like him in my life. But today God reassured me of His presence and that I only have to call on HIS name. Lord, help me to put my trust in You.

"Some trust in chariots, and some in horses; but we will remember the name of the LORD our God." -Psalm 20:7

Cataplexy 101

I was surprised recently to learn that most of my immediate family did not know what to do when I had a cataplexy attack at a family gathering yesterday. The following is some information I pieced together from various sources, including my own experience, to explain what cataplexy is and what to do if I have an attack. Most doctors have never even heard of it and have no idea what to do. I started carrying information sheets around with me to hand out to people and especially to give to all my doctors. Feel free to duplicate this information; we need to educate people about this disease.

WHAT IS CATAPLEXY?
Cataplexy is a feature of the sleep disorder narcolepsy. It is a condition whereby the sufferer, or cataplectic, experiences a total loss of muscle control and postural tone. It is likely to be more severe when a person is tired, under stress, or experiencing strong emotions. It is extremely unpredictable both in severity and frequency. The attacks do not necessarily have a fixed schedule; they may occur occasionally but may also occur multiple times a day. Patients may be prescribed antidepressants to control the attacks and may also take a night-time medicine called Xyrem, the pharmaceutical equivalent of GHB, to produce the quality of sleep needed to help control the attacks. It is important for cataplexy sufferers to adhere to a strict sleep and medicine schedule to avoid severe, prolonged attacks.

WHAT HAPPENS DURING A CATAPLEXY ATTACK?
Cataplexy is often confused with epilepsy. The nature of the attacks may vary from individual to individual. The following characteristics of an attack can occur alone or in combinations with others: perceptible slacking of the facial muscles, dropping of the jaw or head, knee buckling, slumping of the shoulders, slurring of speech, blurred vision, or falling to the floor. When falling to the ground, the cataplectic may appear to lose consciousness but simply remains motionless for a few minutes before resuming normal behaviors or drifting into some prolonged sleep. There is no loss of consciousness or awareness of surroundings; the person can still hear, feel, and sometimes see things that are going on during the attack.

WHAT CAUSES A CATAPLEXY ATTACK?
Cataplexy is often caused by strong emotions such as exhilaration, surprise, fear, anger, stress, shock, laughter, anxiety, etc., but these do not have to be present for an attack to occur. For this reason, a person suffering from cataplexy will not benefit from “revival methods” often used on an unconscious person. Actions such as yelling, slapping, or shaking should be avoided, and sternum rubs or ammonia inhalants will not be effective and can, in fact, make the attack worse by causing anxiety to the patient.

WHAT SHOULD BE DONE FOR A PATIENT DURING AN ATTACK?
1. It is most important to stay calm, remembering that the cataplectic is conscious and aware of your behavior and that your anxiety can affect the severity or length of the attack.
2. Be sure the individual will not injure themselves by falling and that their airway is not obstructed by the position of their neck/head. There is no need to move the person unless one of the above circumstances presents itself.
3. Unless the person has stopped breathing, has no pulse, or has injured herself in some way, CALL THEIR EMERGENCY CONTACT BEFORE CALLING 911. This contact will know more about the disease than almost any medical personnel and can advise you more on how to respond. If they feel emergency medical personnel should be called, that is the time to call.
4. Avoid drawing undue attention to the situation, which can cause embarrassment and discomfort to the individual.
5. Sufferers have different preferences about what onlookers can do to help. Some prefer to be left alone, while others my need to be supported or helped up. It is common for the person to prefer being left alone to recover of their own accord.

HOW DOES THIS DISEASE AFFECT LIFESTYLE?
Cataplexy can be disruptive to daily living. It can cause embarrassment, loss of confidence, and even detrimental consequences to the patient. Further, it can impair most desired activities such as driving, working out at the gym, or even holding a child, because one can never know when the attack might present itself. Because this is a rare condition, most medical personnel will not recognize it or know how to treat it. For this reason, the patient and their regular caregiver should be relied upon greatly for information about both the condition and also that patient’s particular regimen of treatment.