If it cannot be ruled out that another cause is behind the symptoms, the nerve water can be examined. With an narcolepsy type 1, the concentration of the messenger substance hypocretin is significantly reduced compared to healthy people.
In addition, it can be determined as part of a genetic examination whether the person has a certain genetic feature, the HLA marker DQB1*0602. However, this would not be a safe evidence of narcolepsy, since the marker also occurs more often in the normal population. There are also patients in whom the marker cannot be found – especially in type 2 narcolepsy.
So far, narcolepsy is not curable. Treatment is therefore about relieving the symptoms. The therapy must be individually tailored to the sick person and their symptoms. As a rule, medication are combined with non-drug treatment measures.
It is particularly important for people with narcolepsy to sleep sufficiently and keep firm bedtime. During the day, regular breaks and short sleep phases are recommended to be efficient for a few hours.
In terms of nutrition, it makes sense to do without lush meals, as they can increase the sleepiness. Movement is also beneficial, also because many sick people increase in weight.
Outsiders can easily interpret symptoms such as strong sleepiness – and connect with laziness, for example. This is also why it is important for those affected that their direct environment gives them understanding and gives them support. For close people, it is therefore advisable to find out well about the disease.
There are various drugs that are used in narcolepsy. Most work either against the daytime sleepiness or against the sudden loss of muscle tension (catablexia). Different active ingredients are often combined for an optimal effect.
Some active ingredients are specially approved for the treatment of narcolepsy. For others, a so-called off-label muse applies. This means that they have actually been developed to treat another disease and have no approval for the therapy of narcolepsy – for example because the manufacturer has not applied for a corresponding approval.
However, since these drugs have proven themselves to treat narcolepsy, they can still be prescribed at medical discretion.
Doctors adults prescribe the daytime sleepiness primarily active ingredients such as
- Modafinil,
- Methylphenidate,
- Sodium oxybat,
- Pitolisant or
- Solriamfetol.
These means increase alertness, so that the sick feel less tired. The active ingredient sodium oxybat can not only help against daily sleepiness, but also in catablexia or sleep paralysis. Pitolisant can also be used in catablexia.
Some stimulants (“stimulants”) such as sodium oxybat fall under the Narcotics Act. The doctor must use them after careful consideration.
Antidepressants such as the active ingredient Clomipramine can also be effective in catablexia and/or symptoms such as sleep paralysis and hallucinations.
Medicines against narcolepsy can lead to various side effects, such as severe excitability, headache, stomach problems, irritability or cardiac arrhythmias. It may also be that their effect subsides over time. In addition, interactions with other medication and any contraindications must be observed. Therefore, regular checks by the treating doctor are necessary.
In 2009 the flu virus H1N1 – known as a pig rib – spread rapidly. New vaccines were developed to contain the pandemic that were used millions of times. Among them was the Pandemrix drug.
Almost a year later, increased cases of narcolepsy were noticeable in Scandinavia: some children and young adults were apparently suffering from narcolepsy after vaccination with Pandemrix. In Germany, too, cases of narcolepsy became known in Germany. By the end of October 2016, the Paul-Ehrlich Institute (the German Federal Institute for Vaccines and Biomedical Medicines) received 86 reports about corresponding cases.
Specialists got to the bottom of these first indications of a connection between vaccination and narcolepsy. In studies, they were able to demonstrate that vaccination with Pandemrix actually increases the risk of narcolepsy: According to studies, there were between 2 and 6 additional narcoleps valleys in children and adolescents. In adults, from 0.6 to 1 additional cases per 100,000 vaccine doses can be assumed.
However, the risk of narcolepsy is slightly increased even after infection with the pig rib. This suggests that it has something to do with the body’s immune response, which is caused by vaccination and infection.
A certain protein on the surface of the swine flip-virus triggers an immune response. In some people, this is directed against certain nerve cells in the brain, which form the messenger substance hypocretin, or against the receptors for this messenger. The fall of these cells leads to narcolepsy.
However, this only happens when several factors come together, including genetic components. The surface protein was included in the Pandemrix vaccine. A certain vaccine amplifier may also contribute to increasing the risk of narcolepsy.
Pandemrix is no longer being used in the EU. The vaccination amplifier contained in it is also no longer used.
Anyone who has already been vaccinated with Pandemrix does not have to worry about developing narcolepsy. Because those affected developed narcolepsy within a few days to weeks after vaccination – and not only after months. So it is a direct vaccine effect and not a long -term sequence.
Another reason was that the connection to the vaccination was only recognized months later: the side effect was so rare that it could not stand out in clinical studies because they had too few participants.
