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Constant headache

31 replies

Snowbeau · 26/10/2020 22:03

I will go to the GP again but I'm worried about what's causing this.

I've had a headache for almost 6 weeks. The last time I went to the GP I was given a large prescription for strong pain killers and sent on my way. Pain killers aren't working. Sleeping isn't working, time off work isn't working, cutting out alcohol isn't working.

What else can the GP do?!

OP posts:
Snowbeau · 30/10/2020 22:09

Thank you, that's what was on the letter on my referral.

OP posts:
Snowbeau · 30/10/2020 22:17

Yes, husband and an incredible friend on hand.

OP posts:
ZolaGrey · 31/10/2020 16:12

Yes, I have IH. They'll do a CT and maybe and MRI. You'll see a neuro and probably an ophthalmologist.

It's generally managed with medication, I have that and therapeutic lumbar punctures.

I suggest you research as much as you can before you see a neuro, some of them are a bit archaic in their knowledge/treatment plans.

Snowbeau · 01/11/2020 10:37

Thank you,
Do you have any tips for a lumbar puncture? What causes your IH?
Are you considered clinically extremely vulnerable? Did you need an mri as well as CT scan?

OP posts:
Snowbeau · 12/11/2020 17:27

@zolagrey I wanted to say thank you for your posts. I've been diagnosed with IIH, just waiting now for follow up at clinic.

OP posts:
ZolaGrey · 13/11/2020 11:14

Ahhh sorry I didn't see you questions at the beginning of the month.

I'm guessing you've had an LP by now - personally, on the whole I don't think they're as bad as they're made out to be. Out of around 50 that I've had, I've only had 3/4 where there has been an issue either during or afterwards. If there is a problem doing it 'blind' you can be referred for a fluoroscopy one and they're a lot simpler.

You'll probably get acetazolomide, the side effects take some getting used to any it'll take some trial and error to figure out the best way to take them. I find that if I take mine in one does late afternoon/early evening I sleep through most of the side effects and don't get hit by the exhaustion quite so badly.

You'll learn after a while what the signs of raised pressure are like for you and how to deal with them.

Hopefully you'll get a good neurologist, some are great, some are not. You can ask for a different one if needed.

Mine is caused by hormone issues. Mainly years of hormonal contraceptives and fluctuations due to pregnancy and breastfeeding. I developed IH about 6 months after I finished breastfeeding, which was the first time since I started puberty that I'd had my "own" hormones and cycle.

There's a weird fixation with weight and IH, for some losing weight works, for some losing it makes it worse, other it makes no difference. There isn't really any properly substantial evidence that being overweight causes IH, but it's an east blanket reaction for Neuro's to have.

There are a couple of IIH support type Facebook groups, they're sometimes quiet useful but I'd be wary. People generally only post when there is an issue or they're having a bad time and it can get a bit overwhelmingly depressing if you exist in the world for too long. I'm on the page, but I've unfollowed it so I can just dip in and out when it's required! Plus you get a bit bored of people playing 'opening pressure too trumps' after a while!

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