Editorial Note: At the heart of RxISK is the idea that if something goes wrong for you on some medication you are the person best placed to know if there is an issue. But again and again when people raise a problem they find they are invalidated – nonsense, rubbish, its your illness or whatever.
If it is pointed out medicine had the same response fifty years ago to mothers whose infants were unwell – she was seen as neurotic – but we’ve learned now to run with the mother’s instinct, and a question is asked – why is an adverse event so different? – the response is usually well if this was case you’d have to believe all those people who claim they have been injured by a vaccine and we’d have pandaemonium.
In the case below, which involves the Flu Jab Pandemrix, the question is how do we go about establishing if this is a case of vaccine induced injury or not?
Before the Jab
I had all the normal childhood illnesses and vaccinations. I had rubella and BGC as a teen, and a few tetanus jabs, all without adverse effect.
I later had two pregnancies to term, all wisdom teeth removed, an operation to remove a bursa on my hip following a fall that hurt my back and made me walk wonky, all without problems.
Before I was given Pandemrix I was working for the Department of Work and Pensions and running a small online business. Busy life, busy mum but this was just “normal”. I was good. I was twice call handler of the year for the whole South East, constantly getting vouchers for going above and beyond, getting all the great and the good sitting to listen in with me on visits.
After I got the jab I immediately became ill with a severe flu like illness. I had two weeks off work. The time afterwards has become a blur as to diagnoses as no one knew what was wrong.
I was so tired. Coming in from work at two, I would fall asleep till teatime. After tea and the kids had gone to bed I’d nod off on the settee. All I seemed to do was sleep. I worked term times and I remember coming back to work after the Summer holidays and my boss asking the usual did I have a nice holiday and me replying that all I seemed to do was sleep. I used to go to the loo if I felt myself falling asleep. Endless walks to the photocopier. I reduced my hours, went home early. Work became a disaster.
Everything ached. After much coming and going to my GP I was referred to rheumatology. They said I had fibromyalgia. Maybe I do but this didn’t help or solve anything.
I took Prozac 20 mg because for 3 or 4 days a month I turned into a very different person fuelled by PMT. It was like switch being flicked. I would go mental for a few days and flick back to me again. I used to write letters to people and organisations if something offended me. I went to the Docs after I chased someone in my car who I felt had cut me up and sat revving outside their house like something from Duel.
As I am the type of person who never puts her head above the parapet I knew I needed to resolve this and the Prozac did help.
Deeper and Down
Then I started hallucinating sounds, specifically our buzzer. I would get up in a panic usually around four in the morning to answer it. I would try to get the kids up thinking we had slept in.
I was becoming forgetful, not recalling conversations or events. If I fell asleep on the sofa of a night watching a programme I would wake not knowing I had fallen asleep with my brain filling in detail that didn’t exist. I dropped things a lot. I could be seen staring off into space. I flooded the flat downstairs twice leaving the kitchen tap running. I had a small kitchen fire after turning the hob onto an electric chip pan I had left there to cool. There were multiple similar leaving the cooker on events where I just damaged things without setting fire to anything. Thank goodness for smoke alarms.
At night my dreams were becoming very vocal. I would often talk for up to an hour. My partner still talks about my lecture on a hydro energy plant where after about 40 minutes of my guided tour I said that “and on the second floor there will be shops”.
I seemed to be going to the GP every month. Apparently, I was depressed now. I didn’t feel depressed but I had no knowledge of mental health and assumed he knew better. More Prozac and now amitriptyline on top.
What was making me depressed was that I had no control of all these things happening to me. I thought for a time I was getting early onset dementia or something.
I recall one such GP visit where I had gone in with my usual I am tired, everything hurts, I keep falling asleep and I was given more Prozac. I was due to drive to Birmingham and I was worried about this. I told him I was falling asleep driving, hoping he would tell me not to drive or take note or do something, anything because I was panicking inside about what was happening to me. I got platitudes and was shown the door.
A few months later I was signed off work – “depression”. All I did was sleep.
Going to my GP was largely pointless but I did it anyway because I knew there was something wrong with me. I didn’t know what, and he seemed to see a woman in her forties, Prozac, bang, out the door.
My GP was off and I saw a lovely young doctor who listened and almost her first question was about my sleep. Did I snore? Sleepwalk? She referred me to a Sleep Studies unit.
It was not a quick process, the appointments were slow to come and the first two sleep studies were “inconclusive”. I later found out this meant they had not recorded enough sleep time. On the third one, they came in the morning and told me that I had not slept. I said no, you are wrong, I slept great. They were puzzled and asked – so you thought you slept? I stayed all day and was put in a room for 15 minutes and watched still wired up etc. I fell asleep within minutes each time.
So, about a year after being referred I was diagnosed.
- Sleep Apnea
- Periodic limb movement disorder
- Night terrors
- Restless legs
Meanwhile, I had lost my job. My daughter told Andy, my partner, that I was hitting myself in the car and had all the windows open to stop falling asleep taking her to school and still I kept hitting curbs. So I had to stop driving.
Having the Pandermix flu jab changed everything in my life. I don’t have a life now. I have an existence which I hate. I try not to dwell on it because hey, I’m not dead but it is hard. I think what makes it worse for me is that the jab was given to me at work. I worked for the DWP. I have done various freedom of information requests but apparently the jab never happened and none of my records exist anymore.
So here I am. Hitting 50 next year, trying to work self-employed. Having the indignity of applying for support payments to the agency whose reports to the DWP saying I was unfit for work and unlikely to ever be so got me fired. But still they make me go to interviews and then write to tell me how capable I am.
I can’t be left alone. The narcolepsy is bad enough but the sleep apnea on top means that if I fall asleep, I could choke and die because I should wear a Bpap mask when I sleep. So I am babysat if my partner goes out.
I have just got the brace off my leg from when I fell down the stairs in August in my sleep when I went to answer the non-existent doorbell.
I sleep on the sofa a couple of nights a week to give Andy a break from my talking and general night mentals. I hate going to sleep knowing I am going to disturb him. Aside from the talking, and skipping, running, and fighting, the night terrors are bad. It is as though I am in absolute mortal terror . I can’t talk. No words will come out but I get up my courage to give one massive scream or shout. He is 11 years older than me and I am convinced I will give him a heart attack. One time, my dog wet herself and hid under the bed.
My night-times are worse if I overheat so have a fan right next to me and windows open.
I won’t go out in case I fall asleep as often my sleep talking quickly becomes sleep tourettes with very loud, very bad language. If I get too animated my speech slurs. If I am fighting sleep my speech slurs and my neck and face muscles go into cataplexy.
One of the most painful things this condition has caused me was that it meant not going to see my once timid daughter, who got a scholarship to a really top school giving her speech as head girl on leavers day. How could I go and risk being an embarrassment?
I take Ropinerole/Requip for the restless legs. It has been an absolute godsend. Took a while to get used to but it has genuinely been a lifesaver.
I take Modanafil but over time this has become less good. Other stimulants haven’t been any better. Modanafil caused my BP to soar – up to 230.
I have been offered Xyrem but I don’t want it. As far as I understand, once you are on that there is no where else to go. Like a drug of last resort.
I don’t know if it is harder to treat me because I am older than people with younger onset Narcolepsy. No one really tells me that. From my own perspective it is worse, because I know what I once was and what I have become. I imagine it is like going blind after having sight. Cruel.
So imagine you are back in 2009 when Pandemrix was being given to prevent Swine Flu. How do you respond to this woman if she raises a link between her Narcolepsy and her Flu Shot?
The authoritative response was – there is no link. Does all Hell (Pandaemonium) break loose if we don’t believe the authorities? What kind of evidence, if any, might be used to stop people from closing down a sensible debate about these questions?