Swine flu and epilepsy
- Our information and advice relates to the current situation in the UK.
- If you live outside the UK and want specific information for where you live, contact your local epilepsy organisation to ask them for the latest advice.
Latest advice on swine flu vaccinations (jabs)
The government has produced a leaflet about the swine flu jabs. It explains that they plan to give the jab to higher risk groups first. People with long term neurological conditions are in that group. If you have epilepsy, your GP should be writing to you within the next few weeks to offer you the jab. It will take time to contact everyone. However, if you don't hear from your GP you can contact the surgery and ask to have the jab. It will be free of charge.
Q1: Are people with epilepsy at greater risk of catching swine flu?
No. Only people with health conditions that affect their immune systems are more likely to catch swine flu. For people with other conditions, including long term neurological conditions, the NHS states: “You are no more likely to catch swine flu than anyone else”.
Q2: The government’s websites are stating that people with long term neurological conditions are in the high risk groups. What does this mean?
Looking at the NHS advice and information the following information is given.
- People with long term neurological conditions are at higher risk of complications if they catch swine flu.
- People in the high risk groups are advised to take antivirals as soon as possible if they develop symptoms (see Q5 below). This means calling your GP immediately. The antiviral medication needs to be taken in the first few days of the flu.
Q3: What does this mean for people with epilepsy?
The swine flu causes high temperatures and, in some people, vomiting and diarrhoea. Our medical adviser tells us that, for people with epilepsy, this may cause an increase in seizures or alter the levels of AEDs (anti-epileptic drugs) in the body. At the moment we have no other information about problems for people with epilepsy and swine flu.
If you have epilepsy and other medical conditions, you should contact the the National Pandemic Flu Service or your local NHS helpline or your GP for further information.
Q4 What should people do if they have the swine flu jab and react badly to it?
If you have health concerns you should contact your GP. As there is little information about reactions to the jab at present, it would be really useful if anyone with epilepsy who had a bad reaction could register this information. You can do this by using the Yellow Card Scheme.
Yellow cards are forms that are available in pharmacies, doctors' surgeries and other NHS outlets across the UK. Alternatively, you can report suspected side-effects on the Yellow Card website or by phoning the Yellow Card hotline, freephone: 0808 100 3352.
If you would like help with completing the form, you can ask your doctor, pharmacist or any healthcare professional.
Q5: What about antiviral treatment and AEDs (anti-epileptic drugs)?
The NHS states that: “It is thought that antiviral treatments will not affect medicines taken to control epilepsy.”
Q6: What should people do if they have symptoms?
Patients with swine flu typically have a fever or a high temperature (over 38°C / 100.4°F) and two or more of the following symptoms:
- unusual tiredness,
- headache,
- runny nose,
- sore throat,
- shortness of breath or cough,
- loss of appetite,
- aching muscles,
- diarrhoea or vomiting
Call your GP if:
- you have a serious underlying (existing) illness,
- you're pregnant,
- you have a sick child under one year old,
- your condition suddenly gets much worse, or
- your condition is still getting worse after seven days (five for a child).
- Call your GP if you have symptoms and epilepsy. You must not go to the surgery if at all possible.
- Remind your doctor that you have epilepsy when you ring and, if necessary, that this means you are on the government’s high risk list.
- Stay at home and avoid contact with others. You should ask a well friend (your flu buddy) to collect your prescription and antiviral medication.
Q7: What should people on the high risk list do if they have been in contact with someone with swine flu?
The NHS Choices site states: “Doctors should not offer antiviral medication as prophylaxis (prevention) to contacts of cases unless, for example, a household member has serious underlying health problems or there are other special circumstances.”
Q8: I am a carer – what steps should I take?
The NHS Choices website now has advice for carers.
Epilepsy Action recommends that people with any concerns contact the the National Pandemic Flu Service, your local NHS helpline.
Epilepsy Action is monitoring the NHS advice for people with neurological conditions and swine flu. We will update our information when we can. However, we recommend that, if you have any concerns about having swine flu, you should use the NHS advice centres listed below or talk to your GP.
- If you have Epilepsy Action's travel insurance and you want to know how swine flu affects your policy, then please ring InsureandGo on the contact numbers provided with your insurance.
NHS phone numbers:
- England: National Pandemic Flu Service: 0800 1 513 100
- Wales NHS Direct Wales: 0845 4647
- Scotland NHS 24: 08454 24 24 24
- Northern Ireland NI Swine Flu Helpline: 0800 0514142
Other online resources:
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
- Live online: Tuesdays and Thursdays 1230-1330 UK time
Twitter Updates
Epilepsy Action blog
Comments
I am just getting over Swine flu, i have epilepsy and take Keppra, Tegretol, Zanegran. yes i did have more seizure's than normal but i can't say if it was because of the flu or Tamiflu and i didn't have to be treated in hospital, i did everything i was told to, staying in my home and by having a flu buddy.
From 24 hours after taking tamiflu I was having a lot of seizures 48 hours after the last dose of tamiflu my seizures started decreasing. I did yellow card this
Andrea
i had swine flu and was given tamiflu.. this had no affect on my seizures at all, but mine are well controlled with the medication i was on
Does anyone know if the new swine flu vaccine will increase seizures or does it have side effects such as high temperature which again could increase seizure activity?
thanks
I had swine flu and either the flu or tamiflu has effected my epilepsy and I have had to increase my ACDs to control my epilepsy.
I had swineflu and flu jabs on Saturday - seizures Saturday and Sunday night. I have very well controlled noctural epilepsy so this was a real shock. Maybe doctors aren't aware of the possible connection.
Hi, I have nocturnal epilepsy also I take Lamictal medication for it, Im concerned now if I should get the jab , maybe its just certain medications that it affects? Seizure free over a year now so I dont think I'l risk it.
My GP is going against what NHS Direct and Epilepsy Action state and are point-blankly refusing to give me the swine flu vaccine as they say that I am "Not in a high-risk category". My GP practice receptionist even stated that "Epilepsy is not a long-term neurological disorder and that they (the NHS) mean people with MS or Parkingsons etc". I cannot believe how ill-informed they are!! I am taking this further as I think it's terrible and probably boils down to money and ignorance!
I too have been told that I cannot have the swine flu jab at my surgery as it is not specifically listed by the Welsh Health Authority as a serious long term neurological condition, I have contacted the Welsh NHS helpline and they appear to be relying on guidance from this web site and have no more detailed official info I can give to my surgery to convince them otherwise. It would appear to me that we (epileptics) are being discriminated against.
My GP also said that my 9 yr old son was also not on the high risk list, despite his epilepsy being difficult to control, having said that she was more than willing to give it to him & we followed the advice of our paediatrician at the hospital who said he should have it purely because he would probably have more seizures if he contracted swine flu. He has had it done & has had no seizures since, the only noticable side effect was a sore arm...hopefully this will be the same when he goes back for the 2nd one in 3wks time.
i was givin the swine flu vaccination on the sat and was feeling horrible after it. On the sun i had lots of ringing in my ear which is usualy the start of my seizure. This went on all day and i had a seizure on the sun night. My epilepsy was controled with carbamazapine and at 28 weeks pregnant this was a bit of a shock and a set back as i am waiting to get my driving licence back.
My two young sons have a genetic condition which means that they have feverish and non-feverish convulsions. The non-feverish ones are fully controlled on medication but they still have convulsions if they have a sudden peak in temperature. I know from people who have had Swine Flu that a sudden high temperature is typical. Also, I understand that sickness is common so there is a high risk of them bringing up their medicine and the possibility of Tamiflu affecting the medicine.
Their consultant's advice is to go to our GP but the GP is adamant that they are not "high priority". Finally I have made an appointment to discuss this with him next week but do not hold out much hope of changing his mind. I am so worried that they will catch Swine Flu, which, if there is a pandemic, would seem highly likely since they are stuck in a classroom all day with 30 children. I won't give up though! Has anyone got any advice? I have printed off the guidance from this website to take with me to the doctor
Sarah
Hi Sarah,
not sure i'm going to be much help to you, but i think this is one of those situations where you have to get a bit pushy, tell your GP that your consultant has recommended it for your children, if they still won't budge you may have to consider trying another GP!
Don't forget though, while the consequences for your children are worrying if they catch swine flu try to remember that their condition does not make them more vunerable to catching it in the 1st place so hopefully their immunity will do it's job for them until you can find a GP who is a bit more understanding.
Good luck with it.
have been given swine flu vaccination by wiltshire nhs. No adverse reaction so far, had it yesterday, seizures are due to brain damage caused by VP shunt insitu. Do feel a little out of sorts though. One thing I did have was a lot of wind approx 1 and 1/2 hours after jab. Asked nextdoor neighbour, she had same problem, she suffers with strokes. I do not think enough clarity is given on what to expect after the injection.
My 3 year old son was given the swine flu jab last Wednesday, he has seizures since he was 11 weeks old, he has had nocturnal seizures for the past two years and not had any breakthrough seizures in the day. His seizures have not lasted for longer than 3 mins and that was when he was first diagnosed. On Sunday he had a massive tc that lasted 15 mins plus and had to have buccal midazolam and was hospitalised. The Consultant has said they think the swine flu jab caused it. The only thing that I would say is his seizures do increase for a couple of weeks after immunisations but this was a real shock. We are not giving him the second part. He is an individual case and I am very pro vaccinations, just this one wasnt for him!
I had unconfirmed swine flu back in August. The GP didn't offer me tamiflu. I was totally exhausted. Feel I am over it now!! The only thing I felt was a few weird symptoms (I have generalised ep with mesial temp sclerosis). I had a few focal seizures due to the exhaustion. These symptoms have only recently left me too. Generally my ep has been well controlled for a few yrs. I had the swine flu vax via work as a precaution last month as I am a nurse giving direct patient care. The only s/e I got was a stinging arm (hardly a s/e). The GP has not recalled me here in Ireland.... I will watch this space though! Looks like the NHS has a better grip of this swine flu lark in the UK. Look after yourselves.
As a Health Care Professional with nocturnal epilepsy and that is well controlled, no seizures since 2001, I had my usual seasonal flu jab in October 2009, unfortunately 24 hours later I suffered a seizure and was admitted to hospital for the day. As for the swine flu jab which I was hoping to take up this month, having seen my Consultant within the last week, I have been advised not to have it, as my seizure was probably 'provoked' by having a flu jab, and that in future years that I take paracetamol both prior and following my flu jab, to help keep my temperature down.
I had the swine flu jab and apart from a sore arm for a week or so. I was perfectly fine. I take 2,500mg Keppra, 250mg Lamictal amd 10mg clobazam daily. My seizures are not fully controlled so my regimen is still changing. I didn't have the jab because of Epilepsy. I have asthma and had a PE a few years back. I was surprised to hear you wanted to have the jab while pregnant. It's quite difficult to control epilepsy during pregnancy.
Following my usual seasonal flu jab in October 2009, I had the Swine Flu Jab on 11th January and suffered no side affects at all. Prior to having it my gp advised that I take paracetamol every four hours both prior and following the injection to help keep my temperature down due to uncontrolled seizures and a change in medication. I suffer from grand mal and absence seizures and am taking 3000mg Keppra, 400mg Topamax, 300mg Zonisamide and 10mg Clonazepam daily.