Cluster Headaches

DH has these for years and they have receded with advancing age but only because of his very strict personal regime of avoiding/managing all his triggers which include any fast food, sugar, highly processed foods, almost all alcohol. I hope you find some changes that help you it is a painful disabling condition.

Talk to your GP (haha) about Epilim. It’s a drug for the treatment of epilepsy but can help with cluster headaches. There is literature in the medical journals on it.

Message withdrawn at poster's request.

I went through a few years of having them, having suffered from "just" terrible migraines through childhood.
I didn't think there was anything much worse than a migraine, but I was very wrong.

They're not known as "suicide headaches" for nothing.

DH suffered from migraines and clusters for years, at one point landing in hospital as morphine couldn’t be administered at home. He saw specialists, tried any meds available to no avail.
We started a food diary consisting of turkey, boiled rice and banana, gradually introducing other foods. The worst culprit was dairy, especially fresh cream, we switched to Alpro soya cream and milk. He thankfully reached a point whereby whenever he recognised another one was starting, he took two nurofen which stopped a full on attack.
Now, a few years later, he occasionally has cream with no ill effect.
All the best to discovering your own cure Aussiegran ?

I have had (years ago) a doctor called, who came and gave me a sedative which meant I eventually slept, but I was apparently still writhing in agony in my sleep, and woke up to find I had made my forehead bleed by rubbing it over and over.
My daughter also got them when having her hormones messed with, during her cancer treatment.

Hi. I used to get them as well after suffering migraines when I was younger. I knew the triggers for the migraine but not always. The cluster ones came on suddenly and I thought I was dying with a brain tumor. Only sleep helped along with painkillers and silence. I hope you can get some respite Aussiegran. That sounds horrendous MissA. Mine have also receded with age. I did find that occasionally a certain ... ahem ... bedroom activity caused one, such was certainly not fun.

Oh! I've had the erm... bedroom activity ones, too!

All of my different types of headache stopped when I came off the pill, so I think it was all hormone related.

I now get the aura and visual disturbances like I used to get with a migraine, but then just a normal, manageable headache.
Touch wood it stays that way!!!

A friend has had Botox treatment for her severe migraines. They’ve helped a lot, so much so she has been able to get a job again.

Ooh MissA I get the aura and visual disturbances too, but thankfully with no headache now. It was like looking through broken glass, even with my eyes closed, which was very strange and I couldn’t see well enough to walk anywhere!

It's horrible, isn't it?
Very unsettling.
A little while back I was having it happen almost every day, and I did feel a bit worried, thinking "this can't be normal..."

Message withdrawn at poster's request.

I am getting aura migraines,. About one a week,. Just got paper to make an appointment with a Numerologist. Now I am even more anxious. Looks like it will be a long wait.
Have you seen any Doctors.? I also have glaucoma ,. So some tablets can mix.

I had a nerve block, I reacted to it badly at the time, but for the past 6 months (knock on wood) they haven’t returned.

I had ‘only’ migraines as a child, which during the pandemic grew into suicide migraines, I had a continuous migraine for three months straight and I thought I was going to lose my mind.

All my empathy, hope you find relief soon

My cluster headaches came on within minutes, the day of my nan's funeral was one of the times it happened, and everyone was fed up with me, because I ended up having to leave early, and upset my mum.
Somebody paid for a private appointment with a neurologist, but he couldnt really do much. (This was years ago)
He did at least tell me that he saw grown men sobbing like babies with the pain.
I changed gp's and my new gp told me to stop taking the pill.

I appear to have upset you Aussiegran, that was not my intention. I am well aware of the difference between migraines and cluster headaches having witnessed my DH and family members suffer from both. I gave an account of what solved his migraines but, thoughtlessly, forgot to add, he never did find a solution to his cluster headaches but for whatever reason, they gradually stopped. My apologies and I sincerely hope your suffering may stop too.

Message withdrawn at poster's request.

My misunderstanding. Pax

My husband suffered these, we found the web site OUCH helpful,

I had them. Always in my right eye socket. So bad I wanted to pull my eye out. I only get headaches now, which v occasionally turns into a migraine with vomiting. I think mine were stress and hormone related.