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Any medics about? Idiopathic Intercranial Hypertension??

(20 Posts)
kansasmum Sun 09-Oct-16 12:02:44

My daughter (20) is currently in hospital and the Drs think it might be this. She currently has Bells Palsy on right side of face poor kid and feels crap. Not sure if IIH is linked to Bell's palsy or not.
I know nothing about Idiopathic Intercranial hypertension - she had CT scan last night which came back normal and has had lots of bloods done but is still waiting on the ward to see the Drs.

Anyone know more about this and likely treatment etc?


Maudlinmaud Sun 09-Oct-16 12:06:19

A ct will determine what is going on. If it is IIH then she will prob have a lp to measure pressure and be prescibed diamox to relieve the fluid.

kansasmum Sun 09-Oct-16 12:19:27

Thank you. Is this something that will resolve after treatment or is it likely to be an ongoing issue for her?

Maudlinmaud Sun 09-Oct-16 12:25:10

I dont know about bells. But IIH will require regular check ups with neuro consultant and ophthalmology. Have they looked at her eyes to see papilledema (optic disc swelling) ?
Im not a medic by the way. But have experience with this condition.

kansasmum Sun 09-Oct-16 12:31:03

They looked in her eyes and were concerned about pressure hence she was admitted to hospital.
Hoping it isn't IIH but it's Sunday and nothing seems to be happeningsad
Headache is bad again so think nurse is getting Drs to see her.

Honeymoonmummy Sun 09-Oct-16 12:32:41

I'm not a medic but I have this condition. It's got no known cause but has been linked to women in their 20s being on the combined pull and being overweight. I'm in my 40s but was put on combined pill and was overweight! It is detected by swelling in the optic nerve in the eye (by an optician looking with the usual eye equipment or taking a photo), it can't be detected by a CT scan, the only way to get a proper diagnosis is by lumbar puncture as mentioned up thread. It's not the most pleasant experience but mine wasn't too bad, I took some music in on headphones to help keep me calm as its done under local. She may have some back pain afterwards. They will probably put her on medication and may tell her to lose weight if she's overweight. They have told me it should go away in time (I was diagnosed in Jan). I've lost nearly 4 stone since I was diagnosed smile HTH and good luck flowers

Honeymoonmummy Sun 09-Oct-16 12:34:04

Should say it's not considered to be a serious condition so don't worry. Can lead to blindness if untreated. They did CT scan with me too just to rule out anything more serious.

kansasmum Sun 09-Oct-16 12:34:38

She's not overweight but has the implant in her arm.
They mentioned doing LP yesterday but nothing said today yet.

Honeymoonmummy Sun 09-Oct-16 12:34:59

Mine was detected thro routine appt at Specsavers, id had some blurred vision

Maudlinmaud Sun 09-Oct-16 12:35:11

Hope she is ok flowers
She is in the right place and will receive the care she needs now. Its an unpleasant condition but with treatment its manageable.

Maudlinmaud Sun 09-Oct-16 12:38:22

And hello to fellow IIH people smile

Honeymoonmummy Sun 09-Oct-16 12:41:37

I should say I didn't have headaches with mine which I think makes it a bit more serious but lumbar puncture should relieve the pressure as well as providing the diagnosis. She may need further lumbar punctures if the medicine doesn't work flowers

Hello Maud! smile

Maudlinmaud Sun 09-Oct-16 12:46:17

Hiya Honey
I had headaches but have migraines so I just put them down to that. I had transient blindness on standing but thought it was low blood pressure. Mine was also picked up by the optician. Wasnt on pill or overweight.

hairymuffet Sun 09-Oct-16 12:51:43

It can also be linked to certain long term antibiotics for acne. Not sure which ones ?? minocycline ??

kansasmum Sun 09-Oct-16 13:03:40

You she's been on steroids antibiotics and anti virals for the Bells Palsy so not sure if this could be linked to any of that??

hairymuffet Sun 09-Oct-16 13:37:23

She needs a ct scan with contrast or an mr angiogram ASAP
You can get a thing called a cavernous sinus thrombosis, which could have caused the palsy and the headaches.
It is easily treatable , a lumbar puncture will only tell you if the pressure is high, which could be a either iih or cst.
This could be caused by the implant.

DeputyPecksBentBeak Sun 09-Oct-16 14:03:59

I had this when I was 16 and again when I was 18. I wasn't on the pill but was slightly overweight. The first time I had it I had immense headaches, unlike anything else, double vision and vomiting. I had it for three weeks and the Drs weren't doing anything so my DM took me to the opticians who spotted that the backs of my eyes were swollen from the pressure. A check at hospital later that day showed that the backs of my eyes were haemorrhaging.

I was given a lumbar puncture, which immediately removed the pressure and relieved the pressure headaches and double vision. I did suffer for a few days afterwards from low pressure, which also causes headaches, but not quite as bad. And I was on the medication mentioned above for a couple of months.

The second time around it was treated just with the tablets and took a lot longer to clear up.

In good news, I've not had it at all in the 11 years since, and despite it being left so long that my eyes were bleeding internally, I've not suffered any eyesight problems as a result. The condition can lead to blindness and can be life threatening but it needs to be a really severe case that's been left far too long for this to happen, so you don't need to worry. Though I appreciate it must be hard to see your DD in so much pain flowers

kansasmum Sun 09-Oct-16 15:54:13

Well they've now discharged her saying they don't really know but think Probably migraine. confused
Consultant saw her this morning and examined her eyes and said no cause for concern.
They've also tested for Lymes disease despite the fact she definitely hasn't been bitten by a tick.
If headache persists we will go back. Her vision is fine no double vision etc. Just headache.

Maudlinmaud Sun 09-Oct-16 15:58:07

Great news on being discharged.
They def would have moved very quickly had it been IIH.
Migraines are such a pain though. If possible get her to keep a food diary so she can eliminate triggers.

kansasmum Sun 09-Oct-16 16:00:48

Yes I'm relieved but also
Not convinced it's migraine - no other migraine symptoms other than headache.
Wait and see I guess hmm

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