12 on the pain scale, behind eye socket, it literally feels like it's going to explode. Burning, stabbing of an intensity I never thought possible. And I've gone nuts as well running around like a madman all hyperactive, chain smoking and having bizarre thoughts.

This will carry on for the next 3-4 hours. I've been diagnosed with SUNCT headaches and migraine, but this is something new entirely.

Furthermore the length and intensity increase every few days. Soon I will have to be sedated I'm sure.

The thing is, I began with lower level, short attacks six years ago which have gradually increased in frequency, length and intensity every year. Consequently each year the amount of medication I have has increased. But now there is no more medication left.

So it's like I have some sort of degenerating condition where it just gets worse at an exponential rate. As far as I can tell most people have it come on out of nowhere and then it stays like that, whether episodic or chronic. This shows no signs of stopping getting worse.

Did anyone else start off with a lower level headache which got worse over a long period? Could I have some sort of secondary cause?

Even if I have the ONS or DBS surgery, I think it will just keep getting worse then that won't work anymore. My question is why does it progressively worsen, at such an alarming rate? Had an MRI of trig. nerve and brain 4 years ago and it was all ok. Are there any other causes I should think about? I've never found any individual triggers, it just keeps on worsening all the time as if there is a fire spreading in there. I'm thinking there is some sort of neurological disease behind this. Why would the nerve keep sending more and more signals out without some kind of cause? Any ideas?

Thank you for reading and good luck to you all.

Thanks Peter. I'm seeing a new neurologist/surgeon soon to discuss which operation I'm going to have so I want to gather as much information as possible.

My thought is, why would this pressure on the nerve, or any other possible cause, just continually worsen at an exponential rate? It makes no sense unless there was some sort of physical process making this bigger, stronger and so forth.

I also have increasingly low appetite, some days I barely eat. Lost a lot of weight. Never had this before on the same meds and everything. Cognitive function is more and more shot all the time. These symptoms may seem minor, but what about something like MS? Conditions like that are known to cause these things as a secondary cause, rarely, but then this headache itself is pretty damn rare.

Know thy enemy.

It is fairly normal for most people who start CH for it to start in an erratic manner, with pain that whilst intense it isn't anywhere near a full scale CH, with it then morphing to the more classical CH symptoms over time.

You're asking a lot of "...what if..." type questions that we can't possibly answer as you are quite naturally really focused on your health and you're imagining the worst, which is all too easy to do.

You're working with one of the best doctors in the world in this area, Dr Manjit Matharu. Whilst we are expert CH patients, he is highly skilled and knowledgeable in this area and you need to trust his skills and experience.

Symptoms like appetite suppression and similar are quite likely to be linked to the stress and pain of what you're going through, plus potentially from the drugs you're taking.

You really need to address your questions to your doctor(s) who will be able to set your mind at ease (or try to), based on the facts they have from the various tests and your personal medical history.

Whilst CH is rare, there are plenty of people who get it, just like winning the lottery is rare, but just about every week someone does.

I really hope you get on top of your multiple headaches and get some relief soon.

KDM, with respect, the idea CH waits until age 50 is part of many of the old wives tales told about it by people who should know better, but don't bother to really learn about what it is they pretend to treat. I've been around this site since the inception, and very few of the folks I've gotten to know started with CH after 50 yrs of age. I know I started somewhere around 8 or 9 years old, and I know quite a few others who started in their early teens or 20's. Some of the same ones who tell you we don't get CH until our fifties also tell us it generally ends in our fifties. I'll be 64 this year, and if I were to get off of the Vit D3 regimen and 5 MeO DALT I can assure you mine would be far worse than in my thirties rather than getting better.

Rule of thumb: If you don't hear it from a handful of CH experts or on this site, regard it with a whole shaker full of salt.

jlc

Edit to add: You will notice on the forum that there is an entire page dedicated to children and clusters.

Ah ok I must have read that somewhere. Maybe that more applies to SUNCT rather than cluster. That's why I'm here, to learn more.

I can only imagine watching your child go through this, my word.