Cluster headaches, advise please

[Loveagingernut]

My 23 year old son is experiencing the most horrendous headaches which the gp has diagnosed as cluster headaches. He is getting them daily. He has been prescribed bedranol. He has tried various over the counter pain killers but none of them are helping. He describes the pain in eye/ eyebrow area as it feeling like it wants to explode. The extreme pain is lasting about 3 hours.

Can anyone that has experience of cluster headaches recommend a pain killer which has worked for them.

To watch my son in so much pain is just awful , any advice would be appreciated.

Cheers in advance.

Hi all,

My son hasn’t had a headache for approx 3 weeks.
Monday past, he tested positive for covid, today is day 6 and he is still testing positive . His boss has been in touch today about returning to work tomorrow, when my son told him he was still testing positive his boss response was FFS!
One hour later, he felt a headache coming on, I am wondering if the pressure his boss has put him under to return to work tomorrow has triggered the headache.
My son now has sumatriptan 100mg tablets, as well as beta blockers.

I have now met someone, that also suffers from CH and he was telling me that when he feels one coming on, he takes his meds then goes out on a cycle ride, in order to try to forget about it . I personally think this is a crazy idea, but am interested in what you think.

Finally, does anyone take there own blood pressure ? What I be correct in thinking your blood pressure would be raised?

CH is not triggered by external stress as it follows its own circardian rhythm. Covid however seems to play absolute havoc with severe primary headache disorders. Kicked off a five months of absolute solid migraine mixed with CH levels of pain. Thank you so much covid for giving the headache fairy such a great helping hand. When you have to live with such extreme levels of pain you really will try almost anything to distract divert and confuse how you experience it. CH causes a need to move and pace.. It is what makes it stand out from migraine. Never bothered with taking blood pressure readings during CH attacks. No neurologist has ever recommended that on the grounds it would be near impossible to do on a screaming moving patient. Occasionally you can get lulls in bouts. The daylight change that happens at the start of Feb could be behind a seeming restart. The only way to begin to work out when you might have a CH bout is to keep a daily headache diary over five years. [Yes Ch can be silent for years then re-appear after such a long lu;ll- depends on the individuals own body rhythms.]. Recommend he pushes for nasal sprays as the sumatriptan tablets will never kick in quick enough to give real relief. Auto injectors hit in within 2-5 minutes. Nasal sprays 10-15 minutes. Tablets can take over 30 minutes to an hour. It’s a level of pain that hurts more than most things so those extra minutes will count and seem like an eternity at the time.

Hi op. My 21 year old son has just been diagnosed with CH. How is your son now?

Hi

The headaches come and go in waves.

As soon as he feels the onset, he takes the nasal spray and other meds and it is more manageable and less frightening . He is not in control of when they happen, but is able to control and manage the pain better.

My advise is to always have a supply of meds so the second your son feels a headache coming, he can take the meds.
We learnt a lesson, when we weren’t prepared, had to phone doc to get telephone consultation, then go to chemist for prescription by which time, the headache had kicked in. So we always have a few days meds so are prepared for when they start again.

I am not sure if alcohol intake has something to do with the waves of headaches. When my son was initially diagnosed, it coincided with him partying hard at the weekends, out with the lads, having a good drink. However, I would go to say, that he has settled down, and not drinking so much/partying and the waves of headaches have also settled down.

As a parent watching your child, regardless of their age, suffering the intense pain, that these headaches cause, is horrible and frightening,
but it does get easier.

It's so awful. Has been the worst few days ever. He's just come back from a lads fishing trip where he didn't drink a lot but perhaps had little sleep, not enough water in the sunshine and generally didn't look after himself.