Cluster headaches
 

Anyone suffer from them and give some advise on preventing them

I can’t take much more of them

4 am and 1 o’clock every day now

I used to suffer really badly, 3x a day. Have you spoken to your GP? I was prescribed Pizotifen in the end as it was hell.

You poor thing. 13 years ago I suffered with these when pregnant with my first, 3x per day and I still remember the attacks vividly. It was truly the worst pain I had ever experienced and the first time in my life I felt suicidal. I was admitted and given oxygen in the end but it didn’t really help - there was nothing else they could have given me that was safe for the baby. It went away by itself after 6 weeks thank God!

I found a lot of help and advice here: https://ouchuk.org

Hopefully there are more treatment options available now and I really hope you find something that gives you a bit of relief OP.

Sadly I can't help but I know my ex-wifes dad used to have them and (from memory) he would go a year without then and then almost 3 months on.

At their height he would need sepositori3s to control the pain.

I seem to remember his GP also gace him a course of steroids which helped.

I really hope you can get some relief from them some how

BB

My friend has these and has managed to break the cycle using mushrooms imported from Holland I believe.
There is something in the mushroom that when taken reboots the brain (trip) and all is good again.
I can try and find out more if interested. He was on oxygen for many years and said the pain was excruciating

Suffered for years thinking I had sinus. Could go 2 years without then have one on n off for 2 months. Saw a locum doctor for something unrelated n mentioned it to her. Low and behold she was a sufferer herself. It called Migrainous Neuralgia officially. She prescribed Sumatriptin tablets.
I wake up with mine, when I get a bout, know what it is immediately as my nose is ice cold and my right eye feels like I want to punch it & pain in the right side back of my head.
I sleep with the Sumatriptin beside the bed & if I can take a tablet (i actually only take 1/2 a tablet) within 30 mins of waking up I can halt it in its tracks! Those tablets have changed my life, thank God. I get mine from the doctors but you can actually buy them from Boots at abou £7 for two. They are very strong, hence you can only get two at a time.
Obviously don't go & buy unless you know 100% its MN or have spoken to a doctor first.

I’m reading this and thinking this is me! I get these symptoms maybe once a year but they last about 4 weeks, I’ve just come out the other side, I’ve never thought to mention it to the doctor just keep taking paracetamol which don’t really help, I’ll check out the websites mentioned, what you say about your right eye is exactly what happens to me 😢😢😢

I have sumatriptan too- best thing that ever worked for me.

I asked if I could go on the subatriptan Basel spray just because I felt i was taking so many painkillers but message back (gp still not seeing patients yet) and feedback was not if on hrt so to stop , stopped that and the headaches became 100 times worse as in no longer just the 4 am and after lunch but would not go away

I know I should phone the gp back just sometimes I got feel like giving up

The American migraine pills work but feel I’ve been taking them forever now , take 1 each time so that is 2 pills a day

I take HRT so I shouldn't worry about that. Plus the fact that if you can, like I do, take only half a pill (but it has to be within 30 mins of the onset or in my case waking up knowing you have it), that it works. For me it stops it dead within 20 mins or so. That in effect means that you do not need to take anything else as its not gonna come back so what's the point regarding stopping taking HRT! None at all.
My doctor told me to put Migrinous Neuralgia in Google when I got home. I did and the on the side of the page was a Wiki bit about it but what was the most significant was a cartoon like picture of a head with a devil sitting on top of it with a red hot poker in his had jabbing it in the head's eye ! I didn't even need to read what it said cause that picture said it all !