health

'My husband's headaches are so painful, he is considering euthanasia. And I support him.'

I find it so hard to watch him suffer.

My name is Conny, I’m a mother of two young boys. My husband Peter suffers from chronic cluster headaches. The first time we heard of this was in 2007 when he had an excruciating headache. It was so bad he actually ended up beating his head against the wall.

We were lucky to find a doctor in the hospital who knew straight away what was wrong and recognised the bloodshot eye and pain on one side of the face as systems of a cluster headache. In hospital they gave Peter oxygen plus an injection and the pain disappeared almost immediately. We were so happy that they knew what was wrong and said to the doctors, “just give us the appropriate medication so that we get on with our lives”.

But the doctors warned that there is no known medication for these headaches, only pain management and that it could become more intense with each passing year. They advised to keep oxygen bottles at home and whenever an attack occurred for him to be ready to inject himself with Imitrex.

For almost 6 years Peter was without pain and we thought it was over until the beginning of 2014 when they came back with a vengeance. This time it was so terrible he thought of committing suicide. Several times I had to plead with him not to give up and persuade him to find another doctor who might have a solution.

“It was so terrible he thought of committing suicide”

I had to stay strong for all of us because if I didn’t there was no-one else but it was so difficult to see the pain my husband was in, every day. Some days he had 4 attacks and on others it can be as many as 14.

You see your children become frightened because their father yells and screams in pain.
He even cries out that he wants to die while bashing his head against anything he can find. It is then up to me to smile at the children, ask them to go and play in their rooms or outside while I stay with Dad.

Alone at night I sometimes cry for hours. Peter won’t come to bed before 5 in the morning but the next day I have to carry on as normal. We are now contemplating euthanasia because Peter suffers unbearably from these cluster headaches.

This is the hardest conversation we have ever had.

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I live in Belgium, a country where Euthanasia is legal. But we are both only 33 years old and this is not the type of discussion you should be having when your life is just starting.

Peter with his sons on fathers day.

We now face one final operation which consists of drilling into the top of his skull. However Peter first wants to have everything in place for euthanasia because if the operation is not successful and he can’t speak or move then he wants to die. He is having this operation for me and the children in the hope that it will be a success and that he will be able to work and live normally again.

I find it very hard to watch him suffer from these cluster headaches because I feel helpless. I can only pray that they will go away and that the pain will ease.

This is why I support my husband’s request for euthanasia.

Should this last operation not be successful then he can finally “fall asleep” peacefully. It will not be an easy way out for me because I will have lost him and the children need their father but we must carry on because life for us and certainly for Peter is hard.

Peter will undergo life-threatening surgery in the hope that he will be able to live normally again.

Please don’t misunderstand me, I love my husband and I don’t want to lose him. We have been together for 15 years and have experienced good and bad times but when I see him suffering on a daily basis, it breaks my heart. It is for this reason, and as a VERY LAST choice, I agree with euthanasia so that Peter can die with dignity.

What is your opinion of euthanasia?

Watch more of Conny and Peter’s story on Dateline tonight (15 September), 9.30pm on SBS.

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Cluster headache is a rare type of headache that affects about 1 to 2 people in every 1000. It is described as even more debilitating than migraine.

Deep brain stimulation involves drilling into the top of the skull in order to insert a titanium alloy electrode into the posterior hypothalamus which is overactive during cluster headaches.

Euthanasia is legal in Belgium.

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