Q: I’ve tried many epilepsy medications that have not worked, or don’t work very well. I’m now thinking about surgery but the only problem is, I can’t decide which surgery to get. I am looking at either VNS or brain surgery. Does one surgery have a better success rate than the other?
A: Both these forms of treatment are quite different and you will really need to sit down with your neurologist to discuss what may be best for you. I have summarised both treatments here.
Vagus nerve stimulation (VNS) is a treatment offered for epilepsy that doesn’t respond well to medication. VNS involves insertion of a pulse generator, similar to a heart pacemaker, under the skin on the chest that sends intermittent electrical signals to the brain by stimulating the left vagus nerve in the neck. It can reduce the frequency and severity of epileptic seizures, and is also used for people with depression so this can be an added benefit.
Seizures might not improve initially but over time, you might find your seizure control slowly improves. About 25 to 30% of people may see that seizures decrease by half or more and up to about 45% of people have their seizures decrease at least by half after 1 to 2 years of treatment.
Complete seizure freedom by VNS happens in only small numbers of people. And in some people, it doesn’t work at all. For more on VNS https://us.livanova.cyberonics.com/home-patient
Epilepsy surgery is varied and it depends on your epilepsy type and what part of the brain the seizures come from. Epilepsy surgery can be especially helpful to people who have focal seizures, with up to 60-70% becoming seizure free after surgery – because the seizures come from one small area of the brain and this area can often be removed. This is a big step and there is a comprehensive work-up to surgery to make sure you are a suitable candidate. As with most surgery there are risks like infection and bleeding, but the results of epilepsy surgery are improved when compared to VNS. For more on epilepsy surgery https://www.epilepsy.org.au/about-epilepsy/managing-epilepsy/treatment/surgery-for-epilepsy/
Q: Every time I have a seizure I bite my tongue. Sometimes it is really painful for days afterwards and even keeps me awake at night because of the pain. Is there any sort of solution that can help it heal faster?
A: The tongue generally will heal in its own time. Sometimes the bite is so deep though, you may need to visit the doctor and see if you need stitches. In the meantime, you can do a few things to help with the pain.
- Initially I would suggest sucking on ice or even an ice block to reduce the immediate pain. If tongue biting happens often for you, then perhaps get an ice block mould so you can make your own (then its on a stick).
- Swish and rinse your mouth out with warm salty water about 3 times a day.
- Don’t eat anything acidic like citrus fruits until the tongue is less raw. This will sting. Some spices like chilli will sting also.
- Maybe stick to softer foods for the first few days also.
- If it is keeping you awake at night, take a recommended over-the-counter painkiller before bedtime. If you are unsure, check with your doctor.
Q: I have night time seizures. I live and sleep alone. When I fall during or after a seizure I have often been injured, sometimes severely. Do you have any tips or recommendations that might help prevent injuries?
A: Unfortunately not all injuries can be prevented but you can put a few things in place to lessen the risk.
- If you are falling out of bed, then possibly the side rails that you can buy for children’s beds might help. There are no guarantees that they will be strong enough though if your seizures are quite severe but they are readily available at many stores and relatively inexpensive. Alternatively, there are adult bedrails with rail cushions available at places like the independent living centre in your state.
- Another option if you fall out of bed is to get high density foam mattresses and place them on either side of your bed. Or just remove your bed altogether and sleep on a mattress on the floor.
- Make sure the bedside is clear of objects other than the mattresses or pillows. So furniture placement is critical. Keep the bedroom simple. If you are wandering around after a seizure then the same rule applies, keep the furniture in your immediate area simple and try to keep sharp corners to an absolute minimum.
- If you have a hard floor then think about getting some rugs or carpet.
- If you have stairs, use a downstairs bedroom (if any).
- Consider buying a type of smart watch (http://smart-monitor.com/ ) that can alert people you choose that a seizure is happening.
These are just a few simple ideas. It may be a good idea to get an occupational therapist visit your home and get it assessed. They may be able to offer you more. For more information on safety, see our factsheet https://www.epilepsy.org.au/wp-content/uploads/2017/08/Fact-Sheet-Safety.pdf
Q: Can being constipated affect my seizures?
A: Constipation is unpleasant and uncomfortable, and can affect your wellbeing. Some antiepileptic drugs (AEDs) can cause constipation. Constipation can also lead to a build-up of toxins in your body and may lead to an increase in seizures in some people. The most common causes of constipation include a change in routine, not enough fibre in the daily diet, not enough fluids and lack of exercise; so eat a healthy diet
high in fruit, vegetables and fibre and low in fat and salt. Drink a reasonable amount of water and be active. If you want to buy an over-the-counter remedy for constipation ask your pharmacist if it’s safe to take it with your medications. These should only be a short-term solution. If the constipation continues, it is best to speak to your doctor. For more about constipation https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/constipation