Pressure headaches?

[JuliaM12345]

Hi all,

This is my first post so thanks for reading. I'm 27 and have had Glaucoma in both eyes since I was 9 years old. I've had around 40 surgeries altogether (mainly at Moorfields) - the major ones being a trab and a tube in both eyes, with quite a lot of needling & laser to keep them stable.

My question is mainly around pressure headaches. Growing up and throughout my treatment, I've always got a headache when my pressure goes over 20, and it's always been a warning sign for me that something is wrong and my pressures are creeping up. My pressure in my blind eye has now been 35 for a good few months, and I am routinely having headaches and sometimes throwing up. However, my new consultant is telling me that I wouldn't have a headache at this pressure and that I definitely wouldn't be sick. I've tried explaining that it doesn't feel like a usual 'headache' - more that something is pressing in my head, which sometimes is relieved slightly by being sick.

I guess I'm just after some different experiences - has anyone else had experience of headaches at a relatively 'low' pressure (in the 20s)? I keep being told it is a migraine, or that it might be something else, which just seems like too much of a coincidence given that it's always been an indication of higher pressure for me.

Thanks

Julia x

[Jon1988]

Hi Julia, I have pigmentary glaucoma which can cause pressure spikes so I bought a tonometer to measure it whenever I think the pressure was high. To be honest, every time I thought the pressure would be high and have felt pressure it’s never actually high and when it is above 20, which seems to be when I sleep, I don’t feel anything.

You have been dealing with it a lot longer than me though, but that’s been my experience so far.

[BirtyJ]

Hi Julia, it sounds like you’ve had it tough over the years, can’t imagine how difficult that’s been for you.

I was diagnosed about a month ago at 29 (to complete surprise). I told the consultant about tension headaches with my IOP at 30-32 and he said it’s probably not linked. You know your body better than anyone else though and everyone is different.

Coming from a healthcare background myself, I’m aware nausea with headaches is typically a ‘red flag’ symptom and warrants further investigations. It would be best ruling out any other cause if possible, as sometimes clinicians can be presumptuous of cause.

[mrswaffle]

Hi Julia, I am sorry you have had such a terrible time, both with the glaucoma and whatever is causing the headaches. From my twenties, I suffered from migraines, which often made me throw up. When (at age 57) I was diagnosed with glaucoma, my first consultant said there was a link between the two conditions. Then another consultant said that that theory had been disproved! I wonder if it would be a good idea to go back to your GP with the information that your consultant has given you, and ask the GP if the headaches could be investigated as your ophthalmologist says they are not attributable to glaucoma? Best of luck!