In each edition of Reach Out, we publish the collective wisdom of TSC families from around Australia and New Zealand on a particular topic in a section called ‘Just between us’. This article on sleep was published in the May 2013 edition of Reach Out.
All medicines have their chemical name in brackets after the brand name. Remember that, like all information in Reach Out, this page represents the opinions of the author(s) and not official pronouncement of ATSS Inc. This information should not be used without first seeking medical advice.
Studies that monitored the night-time electrical activity in the brains of people with TSC found that the majority experience many more awakenings and far less efficient sleep than do people without the disorder.
From:‘Sleep Disorders’, from Massachusetts General Hospital’s Living with TSC online resource
Oh my, where to start! Greg has always had a problem with falling asleep. Except when he was on Tegretol (Carbamazepine) it made him drowsy and practically seizure free for six years which was heaven for all of us. In the past I have tried melatonin but that only worked for a couple of weeks. Greg can lay awake for hours and up and down to toilet and rituals galore every night. Because he sleeps in our bedroom due to seizures, it has greatly affected us and honestly seems to be getting worse as he gets older. If Greg gets eight hours sleep it’s a miracle. He will need something for it soon before we go too crazy. Once he’s asleep he sleeps like a log and doesn’t want to get up in the mornings, for school especially! This can be very very frustrating as a parent.
Greg recently started taking Rapamune (Sirolimus) and his sleep has gotten a little better. I think this may have to do with his seizures being reduced from to15 per day down to around four or five per day. He has less autistic behaviours as well, which I also believe has helped with his sleep. Greg still has a little trouble falling asleep but his rituals don’t seem to go on for too long now.
We had such major sleeping issues, but thankfully have found the answer in Catapres (Clonodine). Hayley was only having 4 hours sleep a night and we could not take it anymore. For a non-verbal child she had plenty to say at 2am! She is also on Sabril (Vigabatrim), Lamictal (Lamotrigine), Epilim (Sodium valproate) and Frisium (Clobazam) for her seizures.
Jacob had many sleep problems at 2.5 years and that continued to some extent for some years. There was some abnormal brain wave activity that we found when we did a sleep study. When Jacob was around 4 years old we added another anticonvulsant because the Epilum (Sodium valproate) was not enough but Lamictal (Lamotrigine) made the night time issues worse. Weaning the dose down helped. But he would still wake at around 3am until he was about 7yrs. I think then it was about needing to pee. He is 10 now and sleeps well until 5am, sometimes 6am. Other parents I have spoken to use Melatonin (a naturally occurring neuro hormone) for their kids sleep problems which I believe was very helpful. Good luck.
Kristin has her seizures under control now, but one of the things we found when they weren’t is that her sleep was very disrupted, for a couple of reasons I think. When she was having seizures very frequently she would always sleep for a long time after the seizure, which would then mean she often wouldn’t be tired at night. The other reason I think was that at night our whole household was a bit disrupted. My husband and I both just had to check on her before either of us went to bed, and if we heard anything in the night we would again get up and check in case of a seizure, we all had our doors open to hear things, so it was no wonder she didn’t sleep well. All that was complicated, of course, by the changing of multiple medications and it was always such a challenge to know which one was causing her to be hyper and which one dozy during the day.
Regarding ideas, there was no silver bullet, although we did put a dimmer switch in the hall light so when we did check on her we could just peer in with a dim light for background rather than a normal bright one. We also really watched what food she had for dinner and made sure she had dinner early in case food was hyping her up a bit more. Similarly, the old mantra of a really clear and consistent bedtime ritual – even if it meant we always came home early if we were out or just stayed home. Finally we decided to just de- emphasise it for all of us – we just had to accept tiredness, aim for us to all have some naps if we could on the weekend. We also told Kristin, and ourselves, that you can’t make yourself sleep – as long as you stay on bed and rest it still does you good so just make up a dream you enjoy in your head and enjoy it, even if you are still awake.
Josh has had his moments with sleeping. Sometimes he is absolutely unbelievable and other times he is an angel. I did find that trying to keep him awake or at least letting him sleep for only short times during the day, late dinners or giving him a tub of yoghurt before bed and doing things during the day making him exercise was a huge help.
Our boy Ravi aged 3 and a half has always been a good sleeper except for a month in June last year when he was a nightmare waking at 2am, 3am etc and refusing to go back to sleep. Eventually we changed his Tegretol (Carbamazepine) from 2 daily doses to 3 and his night waking stopped. Since then he has come off Tegretol. In retrospect we think the dose was too high for him.
We have experienced it again this year as we have been settling Ravi onto Lamotrigine and a couple of weeks ago the dose, although still not the full standard dose for his weight, got too high for him. He started waking at night again and being unhappy during the day. We were quicker to realise this time and pulled the dose back a little bit (with his doctor’s permission as Ravi is not having seizures) and within a week or so his night waking stopped again.
Ravi’s norm is to be a good sleeper, so we are now suspicious if his sleep patterns consistently change.
Hannah, New Zealand
Yes, sleep seems to be a problem with TSC. Rebekah as a child would lie in her bed for ages often singing before going to sleep. It used to amuse us how she would stay wide-awake. For example, if we would all come home late at night from somewhere, a typical child would zonk out, but Rebekah wouldn’t.
She did take Melleril (Thioridazine) for a few years and was on Tegretol (Carbamazepine) and now at 39 sleep is still an issue. Recently she had an overnight sleep study done which showed “mild sleep-apnoea” but I believe they just put that label on being ignorant about TSC. Rebekah has been seizure free for almost 20 years and medication free for 10. Anxiety is definitely an issue and I believe this plays a part in her sleep issues.
I have read one study done on sleep issues but the result seems to be inconclusive. Good luck to everybody, just another one of those issues you have to work out what suits you and your family. If Rebekah gets 4-6 hours solid sleep she thinks she’s doing well!