In November 2008, my 17 year old daughter Krystal passed out at home for the first time ever (only for a matter of seconds). After a trip to the Emergency Department we were told that this happens to a lot of teenage girls and it wasn’t anything unusual. By January 2009, Krystal was passing out nearly everyday and I was having to pick her up from school (on the days she still went) by lunch time.
We were sent to a cardiologist in Wollongong who sent us to his colleague at the Royal Prince Alfred (RPA) hospital in Sydney. After having many heart monitors attached and a EPS (Electrophysiology Study of the heart ) plus Echo scans and many days’ stays in Cardiology wards we were told that there was nothing wrong with her heart. We then went through the same process with the Neurology side of things and were given the all clear, although a specialist at Wollongong hospital still believes it may be fits coming from the centre of her brain that weren’t picked up while others think that it could still be her heart … nobody knows.
By Feb/March Krystal was passing out everyday; sometimes twice (the average time she was unconscious was half an hour). She was bedridden, if we tried to take her out she had to be in a wheelchair but even that was to much for her. Obviously, she had to leave school (year 11) and her part time job at Bakers Delight that she had held from the time she turned 14.
On Tuesday 23 February 2010 we saw yet another specialist at the RPA who believes Krystal may have a Post Viral Disorder. When Krystal mentioned in passing the Cervical Cancer Vaccine and the fact that this all started during the vaccinations, the doctor agreed that its very likely Krystal has had some sort of reaction to them. I could not believe it. After all this time this is the first time that somebody has taken the Gardasil vaccination on board and seen them as a link to what’s been happening to our daughter. When we first asked our GP if there could be a connection he dismissed it so quickly that I felt silly for asking.
Some of Krystal’s symptoms included: Passing out, Headaches/ Migraines, Nausea, Poor circulation, Light intolerance, Feelings of hot and cold, blurred vision (usually with the headaches), Irregular heart beat and general physical weakness. All of this in a bright, healthy, independent, social, happy teenage girl with no prior illness!
As for our home life we quickly got to a stage where we realised that it was to dangerous for Krystal to walk anywhere by herself and somebody had to be with her at all times she was on her feet for fear of a head injury as she had no warning when she passed out. So I gave up my full time work .We made this decision after a few very frightening experiences. The first one was when she passed out in the bathroom and hit her head on the back of the door (thankfully not the edge of the bath or vanity) and I couldn’t get in the bathroom as her body was blocking the door. Another time Krystal passed out in the kitchen and I was in my bedroom so I hadn’t actually seen her fall (although I heard it), but I hadn’t seen if she had hit the corner of the bench and when I got to her, her eyes were open but she was unresponsive (for around 10 minutes ) and had a very weak pulse….I actually thought I was going to lose her. Obviously that involved two more ambulance trips.
After that if Krystal needed the toilet or a bath (she has passed out in the bath ), I took her. Even just to go from one room to the next either myself or my husband walked with her. We took our phones to bed in case she needed the bathroom at night and I often got up to check on her. We also had carpet laid just in case to make a softer landing than the polished floorboards. Stairs were out as the exertion was to much so far too dangerous … Krystal didn’t see downstairs at home for 9 months (our main living area and front door are upstairs) and we all had a big laugh at her first time back down because it was like seeing it for the first time!
Luckily, Krystal is an extremely positive, happy and intelligent teenager who has kept the belief that she WILL get better and this is only a hiccup in her life. I think she had to believe that or else she would have fallen apart. Even during the worst time she tried to learn Italian and guitar to keep her mind active. Since she has been feeling better for the last 2 months (she still has bad days but also has really good periods), she has hit the ground running with her studies and her wonderful boss and staff at Bakers Delight have welcomed her back on a few short shifts to see how she goes. They watch her very closely.
I cannot change the fact that Krissy did get the Gardasil injections but the next best thing is to:
a) Get Gardasil off the market;
b) Inform as many people as possible of the potential side effects so others can make more informed and educated decisions than we did …
I cannot begin to explain the toll this has taken on Krystal’s life and our family and I would love to be in touch with anyone who has experienced similar problems to learn more or help someone else if possible.
On 27th March, 2008, I received my first cervical cancer vaccination dose. The second vaccination was on 5th June 08 and the third on 19th Nov 08. In November 2008, I passed out for the first time.
My mother, who thought it best to go to the hospital just to be safe, had her mind eased when we were told it was probably just low blood pressure.
Then, in January 2009, I passed out for approximately 10-15 seconds at school. I was sent home, and we again went to the hospital, just to be told by a doctor that “some girls just pass out”.
When it started happening for a third time, and then a fourth and so on, obviously we started worrying. We went to our GP and he recommended that I wore a halter monitor for 24hours which showed I had an irregular heartbeat.
As all this came on, I started getting bad headaches and migraines, which I have never in my life had. I would feel sick and queasy in the stomach, like throwing up, daily. The colour from my whole body was literally drained, I was as white as a ghost.
By now, this was occurring on a daily basis, so we were referred to a local heart specialist in Wollongong. He recommended that I wear another halter monitor, have a CAT scan, and an EEG neurological test. I received all three, with the CAT scan, and EEG neurological test coming out clear.
I received the same results with the halter monitor as I did with the last one; I was having palpitations, my pulse would start racing highly all of a sudden, and an irregular heartbeat was recorded. The specialist in Wollongong, believed I had a case of Vaso Vagal, but decided to send us to a more qualified heart specialist in Sydney.
The specialist in Sydney, believed I had an irregular heartbeat, which was shown even whilst sleeping. My heart rate would increase dramatically, at the slightest changes. If I was sitting down, my pulse would be normal, around 70-85beats, then when I stood up, the monitor recorded that my pulse increased to 180beats. When I was in hospital, if I would stand up to walk around the corridor, my monitor would constantly beep, because my heart rate had increased so dramatically. The heart specialist recommended I have a mini operation on my heart (called an EPS) to determine whether anything drastic needed to be done.
After the operation it was determined that there was nothing wrong with my heart. When I was coming-to, from the anaesthetic, I started having what looked like a seizure, only when the neurologist came to help, he said it wasn’t a normal seizure. I hadn’t wet myself, did not bite my tongue etc. I stayed in cardiology at RPA for a week during that time and even though I passed out in the shower and my heart rate would go through the roof if I stood up and was generally unwell all day, they couldn’t find any answers. My heart specialist, then transferred me over to this neurologist, who put me on a waiting list for a week long EEG, to see if my 20minute long EEG (that I’d had previously) had missed anything.
I had gotten so bad, that by March I had to leave school, because I was only there for a maximum of an hour, before I’d passed out again. My length of my pass outs were increasing dramatically, it went from 10seconds, to five minutes, then ten minutes, fifteen, etc.
When it was time to have the week long EEG, it had gotten to the point where I couldn’t walk ANYWHERE. If I was exposed to too much sunlight, I would pass out, or get a migraine. Sitting upright in the wheelchair for too long, would cause me to faint. My blood pressure was permanently low. I could do nothing, and go nowhere. I couldn’t even walk myself to the bathroom without someone needing to come with me. All dignity was lost, and I would get so frustrated with the fact that I could do NOTHING on my own. Trying to stay positive was difficult, but I would not let myself melt down and come to pieces with whatever this was. That would just make things so much harder, not only on me, but my family and loved ones. Having a shower, obviously, was out of the question, as my blood pressure was permanently low at this point. So I would have a bath instead. One time I got so frustrated with anything and everything, and I just wanted to have a bath on my own for once, which before all this happened, I would be able to do freely whenever I wanted.
And of course, I passed out in the bath. That was so scary, one of the most terrifying moments of my life I think. I remember waking up, and my Mum and Dad were pulling me out of the bath, I had no idea what was going on. I just remember coughing up the water, I was so scared, and I remember mum’s face, she was terrified and crying I think. This was my life for over a year.
Hospital trips, ambulance rides, and then the hospital stays. The worst thing was, we had no idea what was happening, and what was causing it. The days that I wasn’t in hospital, I was at home, all day, every day. Being in the wheelchair was such a horrible experience for me, I hated it.
We would go through times when nothing would happen for a week or two, and I would get so excited, thinking whatever it was that had been ruining my life, had finally left! When I then passed out, it was heartbreaking. I wanted so badly for everything to get back to normal.
It started getting scary; the amount of time I was unconscious for was increasing dramatically still. The longest time I have ever been unconscious for was 40minutes straight. That was when the hospitals finally started taking things seriously, and doing tests, and more tests, which finally led my family and I, to discovering that it could be from having the three cervical cancer vaccinations.
If only people knew how much this has impacted not only on my life, but on my family’s life too. Having no idea what was going on, we all thought that this might be a permanent factor.
There were times in that period, where I thought I was going to die. Times where I’d passed out on a main road, outside on my driveway, in the bath, in the shopping centre, when I was asleep and when I was home alone (after we thought I was getting better). The impact it has had on my 8 year old sister, is just heart breaking. I remember on her birthday, Mum and I went shopping for her birthday cake, and I passed out in the shops. I felt so horrible that I couldn’t be there, and that Mum had to stay in hospital with me. My sister wasn’t left alone with me very often, but there has been a time where I passed out on the driveway, and she was the only one here. That was heartbreaking, that she had the weight of that on her shoulders.
I am infuriated that I had to postpone 18 months of my life, leave school, not be able to drive, not be able to work, have no social life. I had to live with this EVERY DAY. There was no escape, I virtually could do nothing. I am outraged that it has taken so long for my family and I to find out the true cause of this, and I believe we deserve to be heard from. This vaccination should never have been allowed into Australia without proper testing.
I will not stop until we have been listened to, and action has been taken, and this vaccination is taken off the market completely.
Naomi’s Story (Melbourne, Australia)
The video of my story is
I was a happy healthy 25 year old girl working full-time and studying and to complete a degree at Monash University. I went to get my gardasil vaccination after being prompted by the strong government campaign. I was never asked whether I was pre disposed to auto immune conditions, had a compromised immune system or had any family history of such. If I had of been asked I would not have gotten the shot. After my first shot I had a really sore arm for weeks. I have never experienced that before with other vaccinations but at the time I thought it a small price to pay to reduce the risk of cervical cancer.
I went in for my second shot and was never asked if I’d had any problems since the first shot. A few weeks later I started having some problems with my legs. They felt stiff and walking wasn’t as easy and it should be. I couldn’t get comfortable at night and my hands and feet kept cramping. I was also experiencing moving pains and was in quite a bit of discomfort. I started to get regular phsyio, massages and cupping therapy to alleviate my symptoms. I was also running (about 5kms a day) as I thought this may help loosen me up if my pain was postural. It never occurred to me that it could have something to do with my vaccination.
I went for my third gardasil shot and was never asked about my health post the initial two vaccinations. Within a week my knee became inflamed and then started collapsing underneath me. My pains became debilitating and I could not sleep at night. All my joints were aching and even made a clicking noise when I tried to go up or down stairs. My knees had a spastic feeling when I tried to walk and my legs became very shaky. My knee seized up and locked in a bent position.
My doctor ordered some blood tests and they showed up a positive ANA test which is indicative of some kind of auto immune problem. I was in a bit of a mess and was put on 25 mg of prednisolone and referred to a rheumatologist. The rheumatologist told me that my problems were probably down to ‘anxiety’. I have never heard of anxiety giving anyone an inflamed knee before but she was getting paid the big bucks… I refused to accept what she was saying and so she ordered an MRI.
Apparently steroids (like prednisolone) can take evidence from your MRIS so I had to stop taking them in the lead up to the MRI. And then my world fell apart… I was so weak and shaky I could not stand. My body was tingling and numb and all of my bodily responses felt delayed. I could not feel strands of hair when I picked them up. My feet were cramping and I was dropping things. I was going to the toilet all the time! My legs were jumping and giving me shocks, tremors and mini seizures. And then I got dissociation from my legs. My legs did not feel like they fitted on my body. I would walk and it didn’t feel like I was using my own legs.
My skin felt uncomfortable at times as though it was crawling and didn’t fit properly. I was also feeling dizzy, tired and sick and could not follow the Dr’s pen with my eyes. My eyes were jumping and playing up randomly. I also got sick with some kind of gastro bug and I kept vomiting until I had to go to E.D. I have never been melodramatic when it comes to health and I actually think I have a high pain threshold but tt one stage of that visit I did actually fear that I might be dying, though I was assured I would not.
My MRI showed up a lesion of demyelination on my brain indicative of an episode of multiple sclerosis and I was sent to see a neurologist. She explained to me that it was not a typical result and further evidence would be needed for any kind of diagnosis. I did an evoked visual response test and passed. The follow up MRI (6 months later) showed no progression of the demyelination since steroid treatment and finishing Gardasil. I have changed some meds for neurological conditions, pain and am slowly weaning off the steroids ½ a milligram at a time. Every time I reduce my dosage it knocks me around and gives me chronic fatigue. So far I have reduced my dosage by more than half but I still have a long way to go.
Fourteen months after my last vaccination I still have chronic fatigue syndrome, pain and some neurological difficulties. I have my fingers crossed that my steroid use will not result in diabetes or osteoperosis. I know I still have a long hard fight ahead of me. I still have no formal diagnosis or medical explanation as to what has occurred. All I know is that there is a lot of other girls with the exact same story as me and the only common thread we can find is Gardasil.