My Story

Hello, my name is Kristina Heeter. I have a rare form of Narcolepsy and wish to share with everyone my experiences in hopes it will help others get a diagnosis and treatments before it severely affects their lives! I was lucky enough to be born in Washington DC for when I was a baby my parents insisted there was something wrong. It took them 2 years to get a doctor to really listen and he did a new diagnostic test, a CAT scan! It was one of the first machines available. They found I had a rare cyst that was growing in my sinuses back through my right eye socket and into the brain. They told my parents they got it in time and it did no permanent damage, but now I'm not so sure. We don't understand what triggers Narcolepsy, but they are finally beginning to understand the system behind the defects in Narcolepsy and what causes the symptoms of this disease. There is a high incidence between some HLA markers and those who develop Narcolepsy and I do have both HLA (genetic) markers for it, but 30% of the Caucasian population in America has one of them but only 1 in 2,000 actually develop narcolepsy. I was fortunate to be part of the research to make medical history to document that a particular neurotransmitter [a chemical that transmits a specific set of information from one area to another] called Hypocretin [or Orexin] is at fault. Hypocretin is produced by one cell and then received by two different receptors (receptor 1  and receptor two). In 90+% of people with Narcolepsy they are losing the production cells for this chemical. When they tested the spinal fluid, the levels were undetectable (meaning if you are losing the ability to produce the chemical you will not have any in your system to show up). In the other 10% they are probably losing the receptors for the chemical. (Either of these receptors could be damaged or missing). Most of these 10% test with normal levels of hypocretin 1 (meaning it's produced and received but we cannot test hypocretin 2 because you have to mash up some brain cells to test how much is in them, and well we can't do that on living beings! So the theory is they might be losing the receptor 2 cells much like the dogs with narcolepsy models. Only with dogs, its usually purely genetic malformation and not an auto-immune or environmental trigger like they believe most PWN to be). But their symptoms and other tests were conclusive of Narcolepsy. And in only a few cases so far (I was told I am one of them) they believe I might be losing the receptor1 for this chemical. Which means I make it but I do not get it out of the cerebral spinal fluid and use it. My test results were very high. They have since found that some people without Narcolepsy can have elevated levels if they are sleep deprived, but I was relatively rested (as much as one with Narcolepsy can be) and it was first in the morning. Also both the other person and I have had brain damage. Mine is only possible damage, I was born with a cyst in my sinuses that grew back through the right eye socket down the nerve and into the brain. At the time they took it out I was three, and they told my parents there was no permanent damage, now I'm not so sure. The cyst cells could have been similar to the Hypocretin cells and triggered the body to attack them. 

Off of the technical for a moment and on to the story again. Looking back I can remember problems starting about 9 years old, this is about the time I started to mature so it could be the same trigger as many people with Narcolepsy, puberty! I remember a few HH and SP episodes even back into 1st grade (when they still had you take naps!) But about 4th grade I remember having problems with the florescent lighting, emotional responses like joy/sadness and nervousness, and the bath tub. I would get weak and shaky but I thought you were supposed to get like that. I would always say I got stage fright after the fact, it was actually the relief from getting it over with, I would sit down and practically slump over. My voice would get shaky and I would get really quiet while I was getting over it (not like me at all). My parents always got on me about falling asleep in the bathtub, and I would always respond "I don't fall asleep I'm just comfortable, I don't want to move." I couldn't fathom the fact that I couldn't move! I thought I was tricking myself, I could move if I really wanted to! Right? I also started to have problems with rainy days and winter blues. I now know that i have problems with a change in air pressure. Air conditioners bother me too. Any low pressure system can leave me bedridden, especially if I have been active the day before. Without any medication I can hardly make it to the bathroom without having knee buckling Cataplexy. I asked the trial doctor when I took part of the Xyrem study if they wanted to know every time my knees buckled or if they wanted me to try to determine between major attacks. If they wanted every knee buckle I was going to have to have a counter around my neck I could click to keep track of them all, it would have been around a hundred on those bad days! About 7th grade the EDS really started. My parents took me to the doctor several times looking for Mono and thyroid problems, with no luck. I was always so athletic. I played soccer in the spring and fall and swam in the summer and winter. I started having problems keeping up, even if I tried to stretch my endurance through training. I started to have problems with metabolism as well. As a senior in High School I hardly ate and still racked up to 130 pounds. My boyfriend at the time called me a beached whale hoping I would lose the extra 15 pounds or so, if he only saw me now! (They have noticed that people with Narcolepsy more often than not can eat much less and still be overweight, even when they are physically active. It is not across the board though. Many have normal metabolisms despite the Narcolepsy. I believe it is just whether or not the body is able to adapt and make the right decisions without the Hypocretin. Some peoples do, some don't. Low body temperature, and blood pressure pre medications are also normal for people with Narcolepsy.) By the time I hit college I was on my own. I had to work full time as my parents moved overseas as missionaries and could not support me. My first two years were hard but I managed. The third year I was so stressed I developed mono. It took them from early November to mid March to figure it out! I missed classes and failed several classes. The doctor told me my type was not contagious, I developed it because of sleep deprivation and physical stress, not uncommon for my situation. Even after a restful summer, I tried to return the next fall and still could not cope with the work load and ended up dropping out. It was work and support myself or starve and live on the streets and go to school. I never felt the same, and yet I know it had just made my existing condition worse. The doctors said that once you recover from Mono you are over it, but I've found out that those that had a bad case of mono about 20% never feel completely recovered. I got married shortly after quitting school and things improved for a short time when all I had to do was work. I did still see a decrease in ability to keep up with my friends, canoeing and paintball, anything physical. Then I got pregnant. I believe the long stressful labor triggered Fibromyalgia (the difference was night and day). I pushed for 4 hours before they decided something was wrong, the baby was stuck. I had no medications at all during this. They finally went c-section. When I went back to the doctor 6 months later with the extra fatigue from the Fibromyalgia and was told that was normal, I had a baby. I told him it was not normal to be bedridden from the time you got home to the time you had to go back to work, but I was dismissed as "working Mom fatigue". Every time I went back, I tried to explain my fatigue, I told him there was times I couldn't move I was paralyzed only to be told "that's not possible". And of course I was not going to tell him about the hallucinations! I didn't know that intolerance to alcohol was a symptom of something! I thought I just had no tolerance, although I wouldn't get drunk, my legs would hurt/go numb and I would be paralyzed for a while, I couldn't explain it to people. I just didn't drink. I have found that drinking a wine cooler/beer/hard lemonade a few times a week helps with the Fibromyalgia knots and has kept me from having any more kidney stones (I had 4 in 5 years!) It cleans you out, without damage if done one drink a few times a week. America is one of the only countries that sees alcohol as bad, because we can't control it and use it responsibly. If you can't control it, don't do it. I would rather give it up completely if it meant no more alcoholics and drunk drivers though!

It wasn't until I got a computer that I figured out what was wrong. I actually had an acquaintance that has Narcolepsy but I never thought about it. I thought Narcolepsy was only falling asleep behind the wheel and in mid sentence. I do neither. Driving has never been much of a problem. I was a pizza delivery person for years with no accidents. It's my favorite job actually! In part I'm a night owl. I do have some problems with driving in the morning (and would never consider a job where I had to drive a lot in the mornings. That was one of the issues that I quit working. I would be driving and suddenly not have full comprehension as to why my engine was revving and what to do with it because I wasn't fully awake enough to shift the gears. I don't go anywhere I'm not in full control now that i know what's going on..) I have problems functioning in the morning. Many mornings are filled with a combo of HH/C/REM/SP for hours. Especially if the phone or alarm jolted me awake! Working second shift kept me working for much longer than if I had tried to stay working during the day. But with little kids entering school age, that's too hard to keep up with. I was working and coming home and passing out. I couldn't take care of the kids some mornings, and it scared me! I had friends that were going to turn me in for child neglect. (They now understand what's going on, and of course my kids are older now and will let me take a nap if I need to! Most of the time.) Driving also excites me, always changing, and stopping for each delivery and back again. The only problem I've ever had driving is (I've gotten worse) is my Cataplexy when un medicated. Sometimes visual things like lines of trees or corn whizzing by will give me mild Cataplexy. I had one fairly severe attack where a truck honked at the guy in front of him to say hi, when I was turning into the lane right next to him at a light. I was able to keep the car in the lane and recover, but it scared me! (again un medicated). I only go short distances and only when un medicated and even medicated I do not do long drives without resting up for them (longest I will go alone is to my grandma's about 2 hrs 45 min). Knowing your limitations and being responsible is a must! I have warning signs too. My eyes will dilate and I can force them back for a time, then I know I'm tired and need to pull over or get home now!

I knew my problem was neurological because I could feel the release of the chemical when my Cataplexy was triggered. I could feel it wash over me. I called it "my little seizures, but without losing consciousness or convulsions". I looked around till I found Dr. Dement's old site at Stanford University. It has changed since then and does not carry this neurological test anymore, but it was wonderful! It asked like 100 questions, things you wouldn't think of bringing up to a doctor, or think were a symptom, and then it gave you the most likely causes with a link to well explained documented symptoms of each probable cause. Narcolepsy was first. Thinking "yeah right, like I fall asleep in mid sentence.." I clicked on the link to the definitions and symptoms. By the time I finished the page I was so relieved I went into instant Cataplexy and nearly hit the keyboard with my face! I finally knew the name for my "seizures" Cataplexy, I knew my hallucinations and sleep paralysis was normal, and I knew I wasn't crazy anymore!

My husband during all this time of going to the doctor and being told I had nothing wrong, was convinced I was making things up. The acquaintance of mine is actually his friends wife, and I was sat down with my husband and his friend and told "how dare you try to fit your symptoms into something serious like what she goes through! You don't know what it's like for her! If you don't get a diagnosis on this one, I'm divorcing you!" I was speechless. I had already talked to her, and she thought it a good possibility that I had Narcolepsy, although her Cataplexy wasn't much and she pretty much controlled it through mind and force of will. Her EDS was the bad part, and hers came on quickly and was diagnosed quickly. I went through the tests (which they let me stay on Paxil, which I found out later was a no-no, you need to be completely off of everything!) and was waiting in the doctor's office with the fact that if I was not diagnosed I was in trouble! The doctor had an emergency and was late, then they had my file out of order so waited for 2 hours! I was so upset by the time they called me back they had to help me walk, and my speech was slurred! Because of the Paxil being a REM suppressant I only went into REM sleep in 2 naps, which was less than a diagnosis of Narcolepsy and they would put it down as IH (Idiopathic Hypersomulance) but because of my cataplexy he would label it Narcolepsy.

Even after having a diagnosis my husband and his friend thought I was playing it up more than what I had. But he stayed. I left information out as I found out about this disease, so he could read it. As he learned, and he read my emails to the Narcolepsy list and their responses he became softer. When I started to have more problems physically we started to look to see if I also had something else. I couldn't imagine Narcolepsy being SO physically draining. I had nearly every symptom of Myasthenia Gravis (which is listed as a form of muscular dystrophy, its receptor damage to the muscles, which causes them to fatigue quickly) but also every symptom of primary progressive MS. All the tests came back negative. But in the process of the spinal fluid test for the MS we sent a sample to Stanford for the human Narcolepsy study and found out some interesting news! I told you about my high levels before. Well also in the news about the same time was some research studies that they did on injections of Hypocretin into the brains of the dogs with narcolepsy and those results. It seems that when you give too much Hypocretin, the dogs experienced shakes (like dogs do when they are wet and cold) and constant aggravated cataplexy! Sounded familiar to me! I told them it wasn't new to me to hear this outcome. I have been explaining this to my doctors for some time, that I get weak and shaky and feel like I'm caught in Cataplexy for hours if I do too much. In another study they determined when the Hypocretin cells are most active, physical/mental activity, quiet wakefulness, or REM sleep. 79% of the cells were active during physical activity. REM sleep 34% were active and quiet wakefulness was a mere 2%. Now I've been complaining that I get the shaky weak Cataplexy after physical activity and that if I lay down (not necessarily to sleep, I can lay for hours wide awake where even listening to something is too strenuous) and I feel better. Sound familiar? I produce more when I'm active, I can't use what I make, I have too much in my system and that causes more Cataplexy! There I figured it out all on my own from reading their studies! Which of course really piqued the interest in Dr. Mignot and Dr. Seigel, but my file sits on their shelves till they can figure more out, and have more like me to study. Now, in most people with Narcolepsy, you get them more restful sleep, and they feel awake enough to do stuff, you get them out there physically active again, and whatever cells they have left will produce more and in turn make them feel better. Not so with me. I have to constantly try to keep the balance, awake and active but not too active! So, if this sounds like you, I want to hear from you! I'm looking for more like me! I can't talk to the other lady that tested this way because she has a lot more going on than Narcolepsy, so I'm the ONLY working model so far and I'm lonely! Now, I do know other people that have the prolonged cataplexy attacks, so that's not indicative to my type either! Brian, the one I'm getting a lot of the info from his site, has Cataplexy like mine (not necessarily the same triggers) and Mali (who is on the connections page and also works with Dr Mignot at Stanford) also has this type of Cataplexy (and her spinal fluid turned out nonexistent on the chart).

I now take Xyrem. It's AMAZING! It's actually a pharmaceutical GHB (Gamma Hydroxy Butyrate) which is also known as the date rape drug. It's easy to make (illegally), but when mixed with alcohol is dangerous. When taken responsibly with no alcohol and no heart problems there's no risk. No one has ever died from taking JUST GHB. Orphan Medical really went the gambit for us. They took a US congress that was so opposed to GHB being useful to anyone and was going to put it as a schedule one drug restricting it to hospital administration only. To passing it as a dual class, schedule one for those who abuse it and make their own so the penalties would be higher, to a schedule three for those who receive it through Orphan Medical for Narcolepsy. It passed congress unanimously (minus one idiot). The test results for controlling Cataplexy were so great, it has helped so many go from housebound to working again! It also seems to help with EDS in most people too. It does have a lot of Salt in it. The only side effects I've seen have been some stomach cramps/loose stools (just a few hours after taking it, not all day) and some Edema (swelling of the legs and feet). When I can take the highest dose twice a night for several weeks in a row I feel like a new woman. I still have the problem of doing too much and causing Cataplexy, but my threshold is much higher because I'm rested! BUT, because of the swelling problems I have cut back to a lower dose, and even then after several weeks I need a few days off. I don't want to quit it all together because it has improved my life soo much. I've tested everything else, I don't have diabetes, I'm not a salt eater and nothing else can be causing this except the medicine. I WISH it had less so I could take more. I don't use salt except cooking, so there's not much to cut back on in my diet. Xyrem is strictly controlled. Orphan Medical has their own pharmacist's and teams that research the doctor prescribing it to make sure they can treat people with Narcolepsy and are valid doctors. They research the patient to make sure they have a proper diagnosis of Narcolepsy and are a real person. They educate and work with your insurance. They get the refills needed from your doctor before you run out. They call and set up your next shipment. You have to be there to receive and sign for the shipment (or whoever you state will be there). They know where every box is, so it's never easy for someone to steal. When you are done with your bottle it's best if you mark out all information on box and bottle so no one can use it for their own GHB concoction. GHB is less damaging because it's natural. Your body makes it, but we just don't trigger it to make it because we're missing the Hypocretin that would tell it to start production. No liver damage, no nerve damage, no dependency (unless you just like the refreshed feeling when you wake up!) Usually you use less stimulants or other medications if you do need something else. It's really been wonderful. http://www.orphan.com/ if you don't have insurance talk to National Organization of Rare Diseases they have a help program http://www.rarediseases.org/

My husband has made a 180 turn around and is VERY loving and supportive of me now. He understands what is wrong. All through education and patience. He knows i do my best. I've made a pact with him and my friends and family. I don't use it as an excuse for something I don't want to do. I need it to excuse me from things I cannot do! I save up to do special things, and I take care of my house and family to the best of my ability.

NEW UPDATES : Well, since finding a wonderful doctor here in Indianapolis last year, my Narcolepsy is so much under control I’m back to work! Started as a Realtor in April and I’m doing well! It’s flexible so I can rest when I really need to, but it’s really demanding often working at last minute or long days. I still have my disability till I make some money. Just had my first closing, and have 2 more scheduled to close in Oct/Nov. Last year at this time I couldn’t imagine what it would be like to work full time again! All because of Xyrem! Well the realtor stuff ended up becoming too much in the end, lol. Too many hours to keep up with to make enough money to get off disability, and the market is not doing well enough to make up for it. So i'm back to part time with the school system and feeling much more balanced. It was nice to give it a go though. I think it was harder with the added insulin resistance and fibromyalgia, and i still haven't gotten my arthritis under control.  Speaking of insulin resistance, I've lost 106 pounds, and have 27 to go atm writing this update. Geez the doctors really don't want you to find out about that do they? They want you to think diet and exercise are the answer when the problem is you're making too much insulin. When you exercise you pass out because you go into shock! They just want your pancreas to burn out and for you to become diabetic so you'll end up on insulin shots, cause there's no money in a cure! Just for some of us our pancreas is too stubborn to burn out, we just keep getting fatter and it confuses them! Heehee, get tested if you have sugar/carbohydrate cravings, a fasting insulin test will tell you.

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