Narcolepsy and Cataplexy
By Mom from Florida
My daughter hates it when I speak about the new medical conditions she has been suffering through since being vaccinated with Gardasil so I have chosen to remain anonymous to help keep the peace. I chose to give her this vaccine in an effort to help protect her. I struggle with that decision every day.
She had just finished a great soccer season. She had turned 13 already and like always time had slipped away from us. I was a month or 2 late on getting her annual check-up. Her pediatrician had been discussing the HPV vaccine, Gardasil, with me since she turned 11 years old. I put it off and put it off and then finally agreed to move forward with the injections we thought would protect her from cervical cancer.
Within a month or so, I started to notice changes with her. I even mentioned to people that all she ever wants to eat was junk food. It was like a switch was flipped in her body. She was an easy kid that loved food and always ate all sorts of foods including her vegetables. She traded in all of her good eating habits and frantically searched for junk food in the cabinets. I caught her eating leftover holiday candy that was months old and never thrown away; and boxes of cake mix by the spoonful and never mixing it into a batter or baking it. She would eat the whole box of dry mix…… in one sitting! She would take cocoa powder and mix it with sugar and melt it into syrup and eat it by the spoonful.
She suddenly had a new love for pasta. She wanted it day and night. Bizarre food behaviors that I had never seen exhibited before became the norm. She was always stick figure skinny and I would mention to her you better watch what you are doing all that is going to catch up with you.
While this was going on I also noticed that she would sit around the house a lot. She was always active in sports or horseback riding and now she would just sit on the couch. She never walked around the house – she always used to run through the hallways. This all stopped.
She also became emotionally hypersensitive, crying over the most minor of things. She would burst into tears if she didn’t like what I was making for dinner or couldn’t find something to wear. I mentioned this to people but just chalked it up to changing hormones and her now being a teenager. This behavior went on for a while.
She then developed insomnia. She kept saying, “Mom, I’m not sleeping at night.”
She would come home from school and take naps. I would let her nap because I knew she wasn’t sleeping at night. I then started to exercise with her thinking that maybe her body is just not tired and that’s why she couldn’t sleep. It didn’t help. She could barely muster up the energy to walk around
the block.
After about 4-6 weeks of trying different relaxation techniques to help her get some sleep, and with things getting worse, I took her to the pediatrician. It had been almost a year since her prior visit. She had gained 30 pounds. I knew she had put on weight, but she wore it well and I never imagined it to be that amount. Even the doctor questioned how could this be right?
He recommended she take some vitamin melatonin to help her sleep and sent her in for her 2nd dose of Gardasil. She let out a blood curdling scream when they jabbed her – something she had never done before. She had always been one of the toughest kids I knew. Typically, she would just suck it up.
After about a week with no success with the melatonin, I would catch her falling asleep constantly. She would take a 2 hour nap after school and would then go to bed at 9pm. She would start to tell me a story and her eyes would start to close and her words would become garbled. Her speech became so distorted it was like she was drunk or on heavy drugs. It would last for about a minute and would then just go away.
I wondered if she was doing drugs. A friend of mine said she’s not the type, there’s something else going on.
She developed a buckling in one of her knees and with her lack of activity I told her she probably just needed some strengthening exercises in her knee.
While sitting at family dinner one night she lifted her glass up and her hand started to tremble almost dropping the glass. She then got up and started walking to her room, her knees gave out and she grabbed onto the only thing she could, the wall. With her arms planted on the wall above her head she slid down the wall and collapsed on the floor. She laid there speechless for about a minute and then said she was so tired. I helped her to bed.
She slept until the next morning and got up and said she was still so tired. I let her stay home from school and sleep most of the day away thankful that she was finally getting some rest and maybe she could get over the insomnia.
The following morning she had another garbled speech eyes closing episode. I packed her up and took her to Joe DiMaggio Children’s Hospital emergency room in Hollywood, FL. I described these episodes as almost seizure like. The ER doctor went through her history and got to the question of recent vaccines.
I snapped my finger and pointed at the doctor and screamed out GARDASIL!
The doctor looked at me and said, “I guarantee that has something to do with what’s going on.”
She spent 7 days in the hospital undergoing every test imaginable. They even wanted to remove her braces because they were causing interference on some of the tests. She kept having trouble with her knees buckling while in the hospital and having episodes of eyes closing and garbled speech. The episodes were getting worse.
She wouldn’t let me video tape her and the doctors were never around to witness this. By day 5, there was talk of a discharge without a diagnosis. The doctors recommended my daughter stay home until some test results came back. I was told she would be discharged with a safety plan that included a walker and wearing a bike helmet around the house so she wouldn’t hit her head if she collapsed.
They sent in a 3rd neurologist. I told the doctor to sit here for an hour and WATCH my daughter. I said,
“If you discharge her, I will drive straight to Miami children’s hospital. I don’t care if they start repeating tests, she’s not going home! Especially with that ridiculous safety plan!”
Shortly after, my daughter had a full blown seizure-like episode in front of the doctor. The doctor questioned her a little more about her symptoms and diagnosed her with Narcolepsy with Cataplexy.
Narcolepsy is an autoimmune disease that causes your sleep/wake cycle to be disrupted. Cataplexy is a common symptom of Narcolepsy which causes loss of muscle tone resulting in her collapsing. Cataplexy also causes hypersensitivity to emotion which explained why she was previously bursting into tears over nothing.
The doctor started to discuss emotion induced cataplexy and my daughter stated when she laughs or gets upset she gets weak and her body gives out. She ordered a spinal tap and a blood test to confirm the diagnosis.
I asked the doctor if she thought this was related to Gardasil and she answered, “Absolutely.”
She was given immunoglobulin therapy (IVIG) as this has been known to help with auto-immune disorders and discharged on day 7.
People that I knew thought because she was discharged, then she must be better. The therapy did nothing. She was no better than the day I took her to the hospital. As a matter of fact, she was worse. She continued to collapse at home. I likened it to anaphylactic shock. After she would collapse and while lying on the ground unable to move, she would beg me to take her back to the hospital. I called the doctors and was told to give it a week. Nothing changed.
She had missed weeks of school at this point. I returned her to the neuro. As there is not a specific medicine for narcolepsy she was placed on ADHD medicine for performance enhancement during the day, and sleep medicine at night. Her insomnia still remains to this day.
The doctor had ruled out any incidence of contracting the strep virus or trauma with my daughter and started to explain how narcolepsy is induced. It takes a genetic predisposition and an environmental component to induce the disease. A hormone in her body has been depleted. It’s called orexin, it’s also known as hypocretin. Currently there is no medicinal method to restore this hormone in the body.
The spinal tap ultimately revealed there was a genetic disposition to the disease in her body and the blood test led to 100% confirmation of the disease. Many of my family members had never heard of the disease let alone knew any family members that ever had it.
The doctors point to the vaccine as the environmental factor triggering her conditions as all other sources were ruled out. They said to me the vaccine has been known to cause autoimmune disorders. Because she was having insomnia before the 2nd dose and wasn’t being treated by the doctors before the 2nd dose, they will only put in writing that her disease was enhanced by the 2nd dose of the vaccine.
But, they acknowledge that all her symptoms with exception of insomnia were brought to the forefront after the 2nd dose. Enhanced adverse reactions after the second and third injections seem to be a common occurrence with HPV vaccines and this is exactly what transpired with my daughter.
She lives her life on a vicious cycle of meds to keep her awake and meds to make her go to sleep. Struggling all the while as even with meds she is about 75% of the kid she once.
I have tried vitamins, holistic care, & chiropractic care, and nothing other than prescription meds have helped this child. Without medicine her symptoms have become debilitating. She can stay awake for only 2-3 hours a day and those aren’t quality hours. She can barely walk as she is exhausted or the cataplexy sets in and she collapses. Still to this day she has to nap during the day and when she laughs or gets mad her body gives out on her. She has learned to recognize how this feels though and catches herself before she collapses. She still craves junk food as we all do when we are exhausted. We reach for carbs in an effort to boost up the energy level.
Prior to this diagnosis she was a strong healthy kid with the exception of being born with a congenital cataract and sadly losing vision in one of her eyes. I feel as if lightning has now struck this poor child twice as she now struggles with life and with school as this is a very hard disease to manage.
One decision has changed her life. Hopefully not forever as Narcolepsy has ongoing research and I am hopeful that a cure will be in the works very soon. The doctors think 5-10 years.
Currently she is struggling in school and almost all of her activities that she used to be actively involved in have ceased.
Until there is a remedy I will continue to try and “fix her” as her life has been stolen away from her.
I am so, so sorry to hear this.
There is a specific medicine for narcolepsy and cataplexy: Xyrem. I know because I take it. Oddly, I don’t take it for narcolepsy; I use it off-label for neuropathic pain. If you haven’t already looked it up, I recommend it.
I suffer with Narcolepsy and Cataplexy and it’s an awful disease. I was prescribed Xyrem and did take it for a while and it did work with my “falling asleep” at night but I still had no energy during the day. I take Ritalin to try and give me that energy boost I crave but I also suffer from Major Depression and anxiety and the medications I take for that counteract the Ritalin as all the psychotropic meds cause drowsiness. I got to the point that I couldn’t take the Xyrem any longer. I literally just could not stomach the taste of it. I think it would have been so much more beneficial to me if it could be dispensed in a pill form. I will mention that if you have not tried Xyrem and are open to this option I just want to forewarn you, it is EXTREMELY expensive. It has been a while since I was on it but at that point in time I was told it was over $3000 for a month supply.
Thank you for sharing your story. I am so sad to hear about your daughters problems and your heartache. I myself, had a vaccine reaction to the gardasil shot ten years ago, and am just now finally getting checked for narcolepsy after ten years of chronic fatigue, sugar cravings, lethargy, allergies, an autoimmune disorder, so many problems that never existed before the shot. Luckily, the doctor recognized my reaction, I was temporarily paralyzed, and she refused to give me any more shots- I hear the damage is much worse after the second or third. They said I could have died. I am struggling now, and still searching for answers, and I hate to hear these sad stories of other people’s syruggles, but it’s good to know that I am not alone and I hope to help save others from the difficulties I suffer with now by sharing my story and listening to others share theirs.
I appreciate that you all have shared your stories. How awful to experience this. I want to share a possible remedy for the side affects. If you know anything about essential oils, you may have heard incredible results from their use either topically, ingested (use only therapeutic grade oils), or diffused (or all 3). If you google young living essential oils, you may find some research into the incredible therapeutic affects of the oils. I will look into these symptoms & check back if I find anything to help. If you need a first link, here’s mine: http://www.youngliving.org/mcsandall. Good luck! Martha McDowell
Let me express my deep sadness after reading about your daughters medical problems. Though it may seem hard to believe, I do know what she is going through. I was diagnosed with Narcolepsy with Cataplexy over 20 years ago. The original “signs” of the Narcolepsy had probably be happening for many years prior, but they went unnoticed until the Cataplexy started manifesting itself. After several years of various medical and neurological testing, it was finally confirmed that I had Narcolepsy with Cataplexy, Obstructive Sleep Apnea, Restless Leg Syndrome (RLS), and Post Polio Syndrome (I had polio when I was a young child).
Following the diagnosis, I rather quickly was retired out from a military career that I very much loved. I continued on with an engineering career as a civilian, but eventually the disorders and the medicines used to treat them cost me my civilian career also. No matter what the “Disabilities Act” says, employers do not like having people around that fall asleep on the job or tend to fall down. I now live on Social Security Disability and my meager military pension.
Please pay attention to this: Be very careful as to the medications used to treat Narcolepsy and Cataplexy. Each person is different, and what works for one person may not work at all for another. The two disorders are separate (but closely related). For some people one medication may help both problems, but don’t be surprised if several different medications may be needed. My own recommendation is to find something that works for the Cataplexy first, as this is the disorder that can most likely lead to physical injury due to falls. Don’t be surprised if the best medication for Cataplexy turns out to be some form of antidepressant. These seem to work for many people.
First, remember that there currently is no cure for Narcolepsy. At best, the symptoms can be controlled. You stated that your daughter was about 75% on an ADHD med. That is actually very good. After years of trials of many different catagories of medications, the only thing that ever had any good effect in my particular case of Narcolepsy was Methylphenidate (Ritalin). At best, the results were 70% to 75% for me, with ever increasing doses due to physical dependence and tolerance. Eventually, I had to take what they call a “drug holiday”, and quit taking the medication for a period of time to give the body time to readjust. Then lower doses could be started again.
Also, the side effects of drugs like Ritalin can be horrible. A “crash”, coming down from the drug is horrible and only gets worse with larger doses. Slowly increasing anger and intolerance, eventually leading to physical aggression are all possible side effects. Many years ago I chose to quit taking any medication for the Narcolepsy and now only take meds for the Cataplexy. The side effects of the drugs for Narcolepsy can be awful, and for me, they were not worth the risks of long term damage.
My own internal clock now seems to work on two hour cycles. In the afternoon, I tak a two hour nap. At night, the normal pattern is to sleep for two hours and then lie awake for two hours. I may get 5 hours of sleep if I stay in be for ten hours. As I can, I now just volunteer are a pastoral care minister and as a hospice and bereavement support volunteer. We learn to do what we can.
I sincerely wish the best for you and your daughter. Hope is the one thing that keeps us going. If your family is religious, faith is very important also. Prayer can’t hurt either! Blessings to both of you.
RevPhil
I can relate to your entire response. I have been denied disability three times and am currently awaiting on a third appeal decision. I have an attorney fighting on my behalf and have been to hearings with no positive outcome. I was told there are jobs that I could do such as working at a tanning salon (as I was employed in this line of work years ago). I can only reiterate what you said. Bottom line, no one wants to hire someone that is constantly tired and lacks the motivation or energy to function. Mine is also complicated with anxiety and depression but apparently they (judges) feel I can function in a work environment with no problems. As of right now I’m still awaiting the decision on my appeal, which they said could take up to 18 months after filing. So much time has passed that I don’t even know where I’m at in the process now. All I know is that I’ve been fighting for about 3 years now with no results.
I live in the UK, there has been many problems with this vaccine and I refuse to let my daughter have it. Sadly my 16 year old son has severe narcolepsy and cataplexy and recent reports are showing a massive 400% increase in the numbers of children developing the condition (according to Scotlands Narcolepsy Specialist – yes there is only 1 for the whole country that actually specialises completley in thuis condition. So not only is this vaccine a suspect but also many children were vaccinated here for mad cow disease and bird flu and now it has been claimed that many have now developed narcolepsy. The fact that nobody knows what these drugs will do to our children in 1 year, 5 years or 20 years is just not worth the risk. Instead promote healthy living, regular health checks and an awareness of early symptoms of cancers, at least they then have a chance at a normal life, unlike my son and you daughter xx
I live in the UK, there has been many problems with this vaccine and I refuse to let my daughter have it. Sadly my 16 year old son has severe narcolepsy and cataplexy and recent reports are showing a massive 400% increase in the numbers of children developing the condition (according to Scotlands Narcolepsy Specialist – yes there is only 1 for the whole country that actually specialises completley in thuis condition. So not only is this vaccine a suspect but also many children were vaccinated here for mad cow disease and swine flu and now it has been claimed that many have now developed narcolepsy. The fact that nobody knows what these drugs will do to our children in 1 year, 5 years or 20 years is just not worth the risk. Instead promote healthy living, regular health checks and an awareness of early symptoms of cancers, at least they then have a chance at a normal life, unlike my son and your daughter xx
I too have just been diagnosed for narcolepsy with cateplexy. I am very sensitive to medicine. Xyrem is the best but there is a new one called pristique. Its one component of venlafaxine without the side affects of drowsiness. No child should ever go through this bizarre disorder! I thought it was bad enough getting this at age 40! Scared me too! My kids are 15, 14, 12 and 11. Trying to keep up with them was a challenge before I got a flu shot that caused my duh. Hang in there!
I deal with narcolepsy and cataplexy everyday. Was diagnosed almost 20 years ago have since had to quit working and maxed out on medication dosage. There are much worse conditions to be had than narcolepsy though. Control the emotions and don’t fight sleep and you will manage the cataplexy better. Xyrem I don’t feel is a safe medication Myself. Provigil rots your teeth after awhile too. When I was on xyrem it done nothing for the cataplexy and I was still having multiple micro sleeps per day. And what nobody wants to tell you, you will soil yourself while on it too. I’d try to avoid that one if possible.
I have both and I was diagnosed around the same age. I’m now going to be 23 and I just want you to know it does get easier. I continued sports and all activities it was hard but I pushed myselld. Its what I loved. I got taken off of my medicine and I now have two little girls. I know I need something to help me rest more since I don’t get the rest when I “sleep” but I’m scared to take anything so it doesn’t interfere with me being a parent. But trying to get into a better resting routine helps a lot.
I have two very rowdy and energetic boys who always want me to play basketball or something else that requires a lot of energy and I just can’t do it. I’ve missed out on and continue to miss out on so much interaction with them because I’m just too tired to function nor do I have a portion of the energy level needed to keep up with a couple 7 and 8 year old boys.
I have narcolepsy and have been told by my sleep dr that I cannot take my meds while pregnant. An ob had told me that I can after a certain length of time. I take methylphenidate and an anxiety medication for the cataplexy. I don’t want to take them while pregnant but am worried I will not be able to work. Did you take anything while pregnant?
Florida Mom, so sorry to hear about your daughter. I’ve recently educated myself on the Gardasil vaccine and I’m sure that I will not vaccinated my daughter. My wife is still not sure. She is very trusting of our Dr.. I’m hoping to find a family that we talk with us. We also leave in Fl. Gulf coast area.
Thank you for your help.
Mike
To mom in Florida….I live in Orlando and need to have a doctor who will hear what we are saying. I understand you want to remain private, but would you please share the name of the Doctor who finally heard you?
What the poster is describing is TEXTBOOK SEVERE AUTONOMIC DYSFUNCTION!!! In people like my daughter and I it is a debilitating disorder. My daughter was having cardiac seizures when her blood pressure and/or her heart rate was too low. I knew what she had because I’ve been disabled with it since 1997. It took 2 YEARS and my persistence to find her the right doctors and tests.
I was a paramedic for 15 years and I never imagined in my most horrible nightmares I would ever have to do CPR on one of my children, but on 2/11/2011 I did. She’d gotten up and brought me a glass of water. She went up front to get on the computer and it was seconds when her older brother started SCREAMING, “mama come quick, Becca’s seizing and it’s bad! Mama she’s NOT BREATHING!” I rushed to her side and we started CPR and got her back. I took her to the hospital here which is a small town place. They sent her by ambulance to Children hospital in New Orleans where her doctors are, it’s a 4 hour trip.
Eventually Becca had a pacemaker implanted. It’s rare for someone with Autonomic Dysfunction to need one, but it happens. The pacemaker showed not only was she having very slow heart rates, she’d have times where her heart rate would be 150.
If your body is having wide swings in heart rate and blood pressure then your body is ALWAYS in Fight or Flight mode where your body can NEVER REST. This is why you want to sleep all the time!
One of the easiest tests to determine if you have Autonomic Dysfunction is a Tilt Table Test. Basically they strap you on a table then sit you upright and see if you pass out.
My daughter is doing so much better now we’ve gotten her medication regulated and the pacemaker. She’s gotten so much better she’s away at college now! It’s been 6 years since her pacemaker was implanted.
Don’t give up hope and NEVER take a doctor’s word as final! Trust your gut because you know your child better than anyone! Go see ANYONE who will see your child and travel any distance. I originally took Becca to Children hospital in Charleston SC and Dr. Phil Saul. Dr Saul has moved to the North, but there are still great docs in SC. He trained Dr Kelly Gajewski and she’s at Children’s hospital in New Orleans!
Best of luck!
To mom in Florida. Don’t beat yourself up my daughters narcolepsy
Seemed to be triggered at 12 when she got the flu and her period at the same time
It changed her so much. I think your daughters narcolepsy would have been triggered by an infection eventually it’s not you fault
If your daughter is still suffering with these issues, I have natural supplements that will help her. I’m not saying it’s a cure but there is absolutely no risk and will not hurt her. Hopefully you can get in touch with me through the email I leave here or you can find me on Facebook. Her story touched me. I have a 17 year old daughter and can’t imagine watching her go through something like this. Stay strong Mom!
This is super interesting as my daughter who is now 25 suffers from Narc/cataplexy. She received shots in the very first rounds. I remember being pressursed into the shots, being told girls wouldnt be allowed into TX schools with out the shots. Out of 3 daughters, 2 have period issues, and 1 has narcolepsy/cataplexy. Hmmmm
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I have am 28 and got my Gardasil shots in 2008. I developed narcolepsy in that same year. I and my mom are convinced it was triggered by the Gardasil vaccines.
I wish I could talk to you and find out how she is now. This is EXACTLY what we are going through. (The fainting is slightly different, just that she hasn’t slid down a wall.) you’re article was written over three years ago. I’d love an update. We’ve been in this battle with Dr’s for 8 months. Every. Single. Test. Says she is healthy and normal. They don’t know why she ,vomits a dozen times a week. They don’t know why she passes out. They don’t know why she can’t speak sentences. They want her to see a Psychologist. Oh, and rest, because maybe she is stressed. Uh huh, she is. She feels like she’s dying and has no life, and no one knows why. Reneewheeler0602@yahoo.com
Go to the doctor for every little thing! Push for a sleep study. I took my daughter to the doctor for almost a year before she was diagnosed, however our doctor listened but he had a battle with the insurance. Just don’t give up.
This is exactly what happened to me in 2014. I was a full time accountant for my family’s business and full time student. I was a single mom raising a 4 year old and i could do it all with no problems at all. I received the Flu mist on Feb 2, 2014 and the 3rd Gardasil Vaccination on Feb 20, 2014. i was 26 at the time and the doctor who gave me the Gardasil vaccination wasn’t familiar with the vaccine and its risks. In March 2014 i began nodding off while driving to the point where I can only drive for 5 minutes now. I was diagnosed with Narcolepsy and Cataplexy based on my C attacks and multiple sleep and nap studies. I go into REM during the day within 0 minutes. I suffer from severe insomnia. I had to quit my job. I have family members helping take care of my children. I have went through severe depression because i HATE cataplexy and I feel like a lazy bum. I have been on Ritalin, Adderall, Xyrem, Effexor, Protriptyline, Imaprine, Marijuana, Xanax, and Trazadone, and I still have not been able to sleep more than 4 hours since 2014. i am completely disgusted with the FDA and their authorization of Gardasil vaccine knowing that it is harming so many people. I am sending your daughter warm wishes. I am so sorry that she has to suffer from this i know it is hard. Just be patient and hope for a cure.
I feel some sort of weird comfort reading at least 3 other cases that connect the Gardasil vaccine with their narcolepsy. I got the shots in 2008 and am now29. In that same year I started to develop narcolepsy.