Two different stories from patients using the NEMOS® device
“Without side effects – in the midst of life”
Katja Seiffert had her first epileptic seizure, a grand mal, at 15 years of age. Now, 21 years later and after many and varied therapeutic attempts, she is finally seeing improvements. For this, she has to thank a little medical device – the transcutaneous vagus nerve stimulator NEMOS® – from cerbomed, from Erlangen, Germany.
Mrs Seiffert, can you still remember your first seizure?
Very well, indeed. It was 1992, I was 15 years old and with a friend on a language-learning holiday in Malta. We were in a disco one evening where there was a lot of flickering lights. This upset me a lot already on the evening itself. Of course we were out late, so there was sleep deprivation and alcohol involved as well. The seizure happened the next day, around noon: there were figures on the wall in our hotel – as I looked at them they started to shift, to turn. I came around again in the ambulance.
This was my first grand mal seizure, a typical, convulsive seizure, where I turned blue and foamed at the mouth.
How did it develop after that?
In the hospital, they gave me epilepsy medication immediately. However, they administered it too fast and dosed me too highly, to ensure I wouldn’t get any more seizures on holiday. The side effects were correspondingly extreme, I had visual disturbances and balance problems.
When I got home, they did a CT, but found nothing. So, the doctors decided to stop the medication, because a single seizure isn’t enough to say that one actually has epilepsy.
Three quarters of a year later – at which stage we lived in Bavaria – I had my 30 second grand mal seizure. Again, this was foretold by an aura where I felt unwell. After the convulsions, I slept, after which everything was OK again. My big brother and a smaller sister were with me. Both went very quiet, because they knew something like this had happened before.
The diagnosis of epilepsy came in 1997, after I had two grand mal seizures in a single day.
How frequently did the seizures happen at the time, and how did they manifest themselves?
Luckily, I didn’t have that many grand mal seizures. However, in 1997 I started having complex focal seizures, that is, epileptic seizures with disturbances of consciousness. These seizures are also foretold by an aura, which are almost like absences. I roll my eyes, and sometimes jerk my right arm up. Then I get up suddenly, pack my things, and go. I am hardly aware of any of this myself, but my family, colleagues and friends notice: “Ah, she’s just had another epileptic seizure!” Often, I then just go to the toilet, or if I am at home, I go into the bedroom, put on my pyjamas and go to bed, no matter what time it is.
As a rule, I get these seizures predominantly during my period. However before the therapy with NEMOS®, the seizures often came during the rest of my cycle too.
Which therapies did you try before NEMOS®?
Essentially, I tried all the normal anti-epileptic medications. This was always very difficult for me, as I always struggled a lot with the side effects. With one medication I felt sick every afternoon, I had to throw up every day – after which I was OK again. I lost so much weight with another medicine that I had to stop taking it really quickly.
Was an operation suggested to you at any stage?
Yes, the topic was raised in 2008. Because I belong to the group of therapy- resistant epilepsy patients, and have both grand mal and complex focal seizures, it is difficult to adjust the medicine correctly for me. So I was admitted to a video monitoring ward, to find out whether they could identify an epileptic focus they could remove surgically.
They wanted to trigger the seizures through sleep deprivation, which worked immediately in my case. It was terrible for me, I had one grand mal seizure after the other. I just lay around and slept, even walking to the toilet was exhausting, I stumbled around. To come down again, they gave me an emergency medication.
Unfortunately, they noticed that the epileptic focus was very close to the visual and memory centers. An intervention would represent a high risk of damaging these centers. So I decided against an operation, and continued the medicinal therapy.
How did you learn about NEMOS® then?
I was not coping very well with the medicine. I was taking a combination of the emergency and other medications. It was terrible, I was tired and exhausted all the time. I discounted an operation, which would have implanted a deep brain stimulator, because the risks were just too high for me.
Then, in the summer of 2012, my neurologist told me about a new medical product, which may offer success without an operation. I was interested in it immediately, and I got NEMOS® in December 2012.
How has NEMOS® helped you?
After a short time using it, I had a grand mal seizure, which worried me. Now I think it was because it changed my brain and my body was reacting to that. In the meantime, I feel considerably better. Now I really only have seizures during my period, after which I have calm, and am seizure free for three weeks, not even small ones. Altogether, I have fewer seizures, these are milder, and don’t last as long. After a seizure I recover faster. This is what my husband notices most, because I myself am not that aware of the seizures. Previously, after a seizure I had to sleep, but this is no longer necessary with NEMOS®. On holiday I didn’t have the slightest seizure, not even during my menstruation.
Since I started the NEMOS® therapy, I have only had three of the seizures where I run away, and after which am disoriented.
And what is also terrific: before NEMOS®, I would have taken an additional dose of my medicine if I had an aura. Now I have been able to reduce this, often it doesn’t progress beyond the aura.
How can you integrate NEMOS® into your daily routine?
This works well, I can always integrate the four hours of stimulation a day. I don’t just use NEMOS® at home, I take it to work too. I have even used it to stimulate during meetings, and using it while working at the PC is not a problem. The people around me know, and they treat me normally. I can openly take care of my epilepsy and my NEMOS® therapy.
“It is terrific that with NEMOS® I have found a therapy that makes me feel better without an operation and without side effects.”
“On the way to more stability”
Anna-Theresa Mayer is 25 years old and lives with her parents. She suffers from a form of epilepsy that cannot be adequately treated with medication. Since she started using the transcutaneous vagus nerve stimulator NEMOS®, from cerbomed GmbH, she has felt a clear improvement.
How long have you suffered from epileptic seizures?
Ever since I was four years old. I woke up one morning, after a fall from a swing, with my left-side paralyzed. I had apparently had my first major seizure in the night. From then on, my fingers tingled regularly, the whole arm twitched, and I sometimes had drop attacks. But it wasn’t until I was six that I was diagnosed with epilepsy.
What happens during the seizures, and what triggers them?
My seizures are always different, depending on what medication I am taking. At present, I suffer from absences of consciousness, involuntary movements and vocalizations, up to convulsions for ten minutes or more. I have known since I was eleven that I suffer from Rasmussen’s encephalitis, a rare autoimmune illness. The epileptic seizures are a result of that.
What therapies have you already tried?
Lots: I have tried numerous anti-epileptic medications in different dosages, as well as in various combinations – but I still had four to five seizures a day. And then the medicine has side effects, too: They make me tired and sluggish. I had neurosurgery too, twice, to be precise: The first operation was an epilepsy intervention, the second was for diagnostic reasons. I had also two plasmapheresis and high-dose cortisone therapies, without any long-term success. At the moment, I am taking five different medications a day, and attend ergo-, physio-and psychotherapy.
How did you become aware of NEMOS®
I had an appointment with my specialist, in Tübingen, to discuss the course of my further therapy. At that time I had already had my second operation, but was still suffering from heavy convulsive seizures. My doctor introduced me to NEMOS® as an alternative to an operation, and advised me to try it. Glad to have such a possibility, I did this immediately, because I really wanted to avoid another operation. In addition, it appealed to me that NEMOS® has as good as no side effects. This is very important to me, given the amount of medication I have to take.
What has changed for you with NEMOS®?
I feel much better because the seizures have already declined significantly. Since starting the application in October 2012, I only have two to three seizures a day, instead of the four to five before. Altogether, they have got milder, and the interval between seizures is getting longer. The particularly heavy seizures, for which I need emergency medicine, have also got less frequent. I have not had to take any more chloral hydrate since I have been using NEMOS®. Cortisone therapy has not been necessary either, and I have been able to reduce the number and dose of anti- epileptic medications a little. In addition, I have the feeling that I have more control over my illness.
“NEMOS® has become my constant companion at this stage. The device is easy to operate and the therapy has relatively few side effects. I can recommend it wholeheartedly to people who are in a similar situation to me.”