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Trying not to worry. Does anyone have any experience?

(10 Posts)
Lydiaz Sun 16-Jun-19 15:38:03

I've been having headaches for almost a two weeks now. It's there most of the time as a dull ache but quite serve when bending, straining coughing, etc. It starts above my right eye and spreads. Sometimes, when bending, it'll happen and it'll be quite severe but will go almost instantly when I stand straight but other times it's worse and lingers for quite a while. Certain positions in bed when I first try and get comfy bring it on. I went to the opticians yesterday for a routine check just to make sure I didn't need a new prescription or anything. They took photos of my eyes and noticed that the optic nerve behind my right eye looks raised and this combined with my headaches matches up so they are referring me to an ophthalmologist. I'm trying not to be worried but, of course, I am. Seems as though something is putting pressure on the optic nerve to cause it to be raised and also giving me the headaches. Made the mistake of googling and I'm just wondering if anyone has any experience of this they can share whilst i wait for the referral to come through?

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Lydiaz Sun 16-Jun-19 15:59:47

Anyone? smile

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lyrebird1 Sun 16-Jun-19 16:14:39

Hi, I have these sorts of headache. Mine are caused by raised intracranial pressure (ICP), which can also have an effect on the optic nerve.

There are lots of reasons for raised ICP, but the most likely one is idiopathic intracranial pressure, which doesn't have a known cause, but it is usually treated with medications and weight loss if the person if overweight (not assuming that you are). Mine is caused by a chiari malformation blocking the fluid flowing out of my brain, and also a blocked blood vessel on the left side of my brain. I am waiting for a couple of brain surgeries but my neurosurgeon hasn't decided on what the second one will be yet.

I expect that the opthalmologist will want to confirm what the optician saw but with more in depth tests, and will refer you to neurology/neurosurgery for imaging if necessary. This sort of headache can have other causes (particularly sinus issues) so it may not be anything too serious.

I a have a natural tendency to worry (and Google!) but I take the attitude of mentally preparing for the worst but hoping for the best. I am happy to answer any questions, and wish you luck through the process of finding out what is causing your headaches

Lydiaz Sun 16-Jun-19 17:17:28

@lyrebird1 Thank you! I hope all goes well for you. With my various googling, I've been hoping that it is just sinus related, but I don't have any other sinus symptoms, just the headaches. Though, DS did bring a cold type viral infection back from Nursery a month or so ago that we both caught. Though, that was about six weeks ago now and I only felt crap for about five days and fine since, then two weeks ago, bam, headaches. I am actually quite overweight though...

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sallyscallop Sun 16-Jun-19 20:26:22

Fellow IIH sufferer here @lyrebird1 ... high 5!

Lydiaz Mon 17-Jun-19 10:12:20


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Claireshh Mon 17-Jun-19 23:08:00

I also have Arnold chiari malformation. I am now 43 and was diagnosed just before I was 30. I had mentioned in passing to my GP that I had a crushing pain in my head when laughing. She referred me to a neurologist and he sent me for a MRI. I have needed no treatment so far. The main advice I was given was to avoid bungee jumps and roller coasters as they could make the herniation worse. I’ve had two children since diagnosis.

Lydiaz Tue 18-Jun-19 10:57:09

Dont know if this is relevant or related but I regularly get a tingling feeling in my hands, one or both, during the night, whilst sleeping. Almost pins and needles. It's not every night but almost every night. I've had this for quite a while now. Longer than the headaches so just assumed it was nothing and perhaps I keep sleeping funny

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Lydiaz Tue 18-Jun-19 14:04:42

Just had a phone call about my referral. I've got an appointment with the ophthalmologist on Thursday morning. Bloody elated as I've been beside myself with worry

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sallyscallop Sat 22-Jun-19 16:09:25

How did you get on @Lydiaz?

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