Information about non epileptic seizures and Non Epileptic Attack Disorder.

Pregnancy and NEAD

By on 10 September 2016 in General

Deciding to have a baby is a key moment in any person’s life. When you have been diagnosed with NEAD, it is important that you prepare carefully to make sure that your pregnancy and delivery is as safe as possible. Ideally, discuss with your doctor what, if any, special preparations you need to make before becoming pregnant. You may, for example, need to stop taking some medications. It makes sense to wait for a time when your seizures are under control before trying for a baby but sometimes Mother Nature has other ideas.

One of the major problems with NEAD is the lack of awareness amongst health professionals which may lead to midwives and doctors making unnecessary decisions. The best thing you can do is have an information pack that you can show any health professionals and which you carry with you in case you have to attend the hospital unexpectedly. This should include some basic info about NEAD (see our downloads page), plus what to do if you have a seizure (explain what is going on, talk calmly, don’t touch, wait for the seizure to pass, avoid medication) and contact details of your GP and neurologist. It is very important that medical staff don’t panic and start unnecessary interventions such as emergency anti-epileptic medication.

Check whether there is a clinic at your local hospital that is aimed at women with epilepsy. The obstetricians and midwives there will be used to dealing with pregnant women who have seizures and will be far more likely to know about and understand NEAD. If there isn’t such a clinic, ask your neurologist to write a letter that you can add to your information pack which explains the difference between NEAD and epilepsy and what should (or should not) be done if you have seizures during pregnancy or labour. If you are no longer under the care of a neurologist, speak to your GP to see if he/she can write such a letter. Show the letter and information pack to your midwife/obstetrician at your very first appointment and refer to it frequently at later appointments. If you can build a strong relationship with your midwife, both of you will feel more relaxed.

Having said all this, NEAD shouldn’t be the main focus of your pregnancy plan but rather an additional extra. As long as you have taken sensible precautions, there is no reason why your pregnancy shouldn’t proceed in the same way as everyone else in your ante natal class. Think about what you can do to self-care. If tiredness is a trigger, get as much rest as possible, especially in the first trimester when everyone feels really tired anyway.Stress management techniques and relaxation techniques may help you keep your seizures under control and will also help you deal with the hormone surges that come with pregnancy. Have a support network in place but make sure that they don’t wrap you up in so much cotton wool that you feel suffocated! This is your pregnancy and you should be able to enjoy it.

For the actual birth, again have a strong plan of what should be done if you have seizures and make sure that all medical staff understand what to do. Your partner or whoever is going to be with you for the birth should be in charge of this as you are going to be somewhat occupied. A water birth is obviously not recommended. Discuss pain relief with your medical team well before the birth date, especially if pain is a trigger. Practice grounding and relaxation techniques all through your pregnancy so that you can use them easily should you need to during labour. They may even help a bit with the pain.

Once your baby is born, put in place some sensible precautions to ensure their safety. For example, feed your baby sitting down, carry your baby up and down stairs in their car seat rather than in your arms, have someone with you when you are giving the baby a bath, put the changing mat on the floor or in the middle of a double bed etc. Your midwife will be able to help you come up with some other ideas.

Epilepsy Action’s website has a great section on pregnancy, much of which also applies to women with NEAD, so definitely worth a read. We would like to thank our medical advisory board, Professor Markus Reuber, Dr Jon Stone and Dr Sumeet Singhal for their help in the writing of this article.

Nicki’s story:
Before I got pregnant I wasn’t receiving any help from social services. When I had my first visit from a midwife they hadn’t heard of NEAD so put it down as mental health problems. This meant I had to have several mental health assessments to prove that I was a fit mother even though I already had a 10 yr old daughter. I continued having daily seizures and at 20 weeks I had a seizure on the stairs and fell from the top to the bottom. When I came around I was bleeding down below. I thought I’d lost the baby. I went to hospital and they were appalled at how I was attempting to live. They contacted social services and after a while they got in touch. This was adult services and they told me that I wasn’t pregnant enough for them to be involved. This made me feel like they were almost expecting me to lose the baby. I was seen as a high risk pregnancy and had epidural pushed on me from the beginning. My obstetrician was lovely, but had never heard of NEAD. My hormones affected my seizures and made them more frequent. My health visitor was great. A charity called home start  were amazing and continue to support me now. My labour brought on several seizures and the epidural was scary. If I moved whilst putting it in there was a chance I could be paralysed. I had it, but it didn’t work very well. It numbed my legs but I could still feel everything. I ended up having 7 seizures near the end of labour and had to get an episiotomy.

If I was to change anything it would be to not have an epidural. I know everyone is different, but for me it hindered my ability to push. Its hard enough not having control of my body with the seizures, let alone not being able to move my legs. It was frustrating. I’d also have preferred not to undergo the many mental health assessments. They made me feel like they were going to take the baby away and section me. Everyone needs educating on NEAD. It’s so hard to explain and people jump to conclusions.

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