Intercranial Hypertension

[Mumma02]

Does anyone suffer with this and can anyone describe what symptoms they had, specifically what kind of headaches? I understand that it is rare. Thank you.

Hi I have it. It was found during an eye test.I have blurred vision,headaches which are worse when lying down,ringing in my ears.the headache is like a crushing pain.
Losing weight can for some cure the condition but for many they have to take diamox or topirimate long term.

Hope you’re ok x

Thank you so much for replying @KaySam! I haven't officially been diagnosed but my mri came back with "partial empty fossa" which can indicate IIH. The more I read up on it, I think I have it and it sounds terrifying. I tend to get one sided headaches...don't know if this is a feature or not?

A lumbar puncture would give you a definite diagnosis, they’re not the most comfortable thing but they can help ease the headache.
I have headaches on the right side mainly

Same as me then. I'm so worried now. I was hoping that pressure build up would be present on both sides of the head, not just one. Eye test and optic nerve normal on MRI but that is the only positive I can cling on to.

That’s a fantastic positive thing.looks like it’s been found early.
drs will probably start you on medication after the diagnostic lumbar puncture.
Try not to worry,some people have 1 lumbar puncture and then the condition goes.

I have it- my left side is alot worse then my right side- my neurologist said it's not completely uncommon for one side to be more effected although my difference is more severe then most.

Thanks both for replying. Do you find your symptoms constant or do they come and go?

@Mumma02

Thanks both for replying. Do you find your symptoms constant or do they come and go?

Mine can change with the weather,when there is a storm the pressure goes through the roof.crying can aggravate it too.

I ended up having surgery which has helped a little but they’re not the miracle some people expect.

I have had this for 6 years it came on during pregnancy severely and quickly I have an lp shunt and Also a venous sinus stent. I had the shunt put in with in 10 weeks of diagnosis. My symptoms where severe headaches, photophobia, vomiting, visual disturbances and pulsatilla Tinnitus (could hear my heart beat in my ear) my pressure on my first lumbar puncture was maybe 30 it was a long time ago the shunt saved my site and except for a small loss to visual fields my sight is ok. I believe I had around 5 lumbar punctures before the shunt was decided on I have had 5 shunt revisions all within the first 2 years of having the shunt. Any questions please ask

Thank you @Hm2020 the thought of brain surgery terrifies me!! Did the medication not work you? Do you suffer side effects of having the shunt/stent?

Unfortunately due to being pregnant at the time I could only have small doses of acetazolamide as it was Deemed to risky for the baby and my eye sight was at such a risk they couldn’t waste time I had the shunt put in whilst 22 weeks pregnant it is is a lumber shunt so goes in my spine same place they where doing the lumber punctures and it used to drain in to just behind my lung this is not the usual placement it usually drains in to the stomach but as I was pregnant mine went in to my lung but had it corrected and put in to my stomach after my son was born. (The growing pregnancy had allready pulled the tubing out and was draining in to a giant Lump on my back any way) I get slight low pressure can’t lift my head up or occasional high pressure but as I have a programmable shunt they put a machine next to it and change the settings with a magnet non invasive takes 5 mins. After 4 shunt revisions in a year they gave me the option of a stent but not everyone can have a stent it’s something to do with how narrow the veins are in the head which they know by giving you a venegram like ct scan but with dye. I haven’t had another revision since the stent was put in even though I was told at the time it was experimental but I was willing to try as it goes in through the vein on your groin and is not brain surgery as my only other option was a vp shunt which is through my head.

I live a mostly normal life and have regular contact with my surgeons and shunt nurse and I have to see ophthalmology once a year and my eyes are great. If I do become unwell and end up in a&e they take you very seriously when they hear you have a shunt unlike the hell I went through when first being diagnosed. Also I had a normal bmi still do and was 20 years old when I was diagnosed it is debilitating condition and most people have no idea it exists I hope it works out for everyone on this thread any questions I’m happy to answer

Hi, I developed this about 3 years ago. I have Ehlers Danlos syndrome and it seems to be connected. I was diagnosed and treated by a lumbar puncture followed by taking acetozolamide for a year. It’s a grim drug - I weaned myself off it as soon as I could. I had difficulties gripping things and remembering words for a while when I started taking it for a few months.

I lost some weight and have no symptoms now, I do panic if I get a headache. It was awful for the first few months, you really have to listen to your body and be patient with yourself. My headaches were exacerbated by bending down, and going up in lifts! They were definitely altitude related. I started vomiting with it too. I also had loud pulsing in my ear. Many people have vision issues but I escaped that.

Thank you both so much @Hm2020 and @Copperblack. I am terrified at the thought of anything to do with it. Can I ask what symptoms you both had to deal with before diagnosis?

My headaches where the most severe I’ve ever had an all over pressure they where at there worst in the morning but basically there most of the time my neck was in so much pain it was visibly stiff and my eyes actually looked swollen on the outside I know it wasn’t just me thinking this because I remember a nurse given me wet tissues to put over my eyes for the swelling. Constant nausea and then eventually started vomit constantly. Extreme sensitivity to light wearing sunglasses indoors and eye masks. When I’d get up from laying down I’d have black fill my eyes until all sight was gone then come back slowly after a few seconds. Eventually the reason they started taking me seriously was I could hear a clear pounding heart beat in my ear which can be a sign of a tumour or aneurysm. I felt sort of constantly like I had a hangover or was on a boat just really off I didn’t watch tv for months and only listened to audiobooks as that’s how sensitive I was to light. Hth really hope you get some answers whatever it may be being in limbo is hard I remember it well

I had a headache which was exacerbated by bending down. It got really bad and I once turned up a the GP begging for help and vomited everywhere. I was also having pulsing in my ear. They were my main symptoms. My GP called the Neurology team while I was there and I was admitted to hospital for a lumbar puncture immediately. It was scary, but there are clear protocols for treating it. It took about a month of medication and lumbar punctures to treat it. It will be better to know, and start the treatment than carry on worrying. Sending you a hug xx

@Copperblack I have both IIH and EDS too, I think there is a link too but getting any HCP to acknowledge it is lengthy...

I have it, am happy to answer any questions.

I had/have it. I had no headaches though, my only symptom is pulsatile tinnitus. An eye test to check for papilloedema can give a pretty good indication as to whether you have it, as I also had that, but a lumbar puncture will say for sure.

I took medication for awhile and had a couple of lumbar punctures as the tinnitus was so unbearable - it's not really tinnitus in the normal sense, it's hearing your own blood flow whooshing in your ears. Losing weight resolved the papilloedema and reduced the tinnitus to occasionally in one ear as opposed to continuously in both ears. Apparently it might stay forever even though my pressure is now normal.

There's some evidence that oestrogen containing contraception can make it worse so I was recommended to go to progestron only. Losing weight is the only thing that helped though - I think the IH was caused by rapid weight gain.

Also just for info it's intracranial hypertension, not intercranial . Sometimes helps get better search results.

@Kylorey can you describe what the pulsatile tinnitus is like? I have a vibrating sensation in one ear, but doesn't sound like my heartbeat. Had eye 2 tests in Nov/Dec last year which were normal but mri detected partial empty sella.

@daisyjgrey could I ask what your symptoms were and how you were diagnosed please?

@Mumma02 did they do a photograph of the back of your eye? My eyesight has always been fine but the photograph brings it up. Some places do it by default I think but I'm not sure. That's how I got diagnosed actually - I read about papilloedema online so took myself for an eye test which then led to a referral to ophthalmology and then neurology.

My tinnitus can have all different sounds but generally always in time to my heartbeat. Rest your finger in your pulse if you're not sure. At times it sounds like a whooshing sound, like wind. Or like crunching footsteps in snow. At weird times it's been like a weird pinging, boinging sound. Like if something bounces in a cartoon. I've also had a high pitched sound, and the vibration you describe is also familiar. It started quiet in one ear and got louder and louder over months until it was in both ears. It would be worse after exertion so if I walked 4 flights of stairs for a meeting, it would be so loud I could barely hear the first few minutes. I had to develop a kind of zen attitude and not focus on it which would bring the volume down. So yeah it's not so much the sound as the fact it's synchronous to your heartbeat.

I would try not to panic. In and of itself, IH isn't dangerous except for if the pressure is so high the papilloedema gets bad enough to threaten eyesight. The people who have shunts and all these terrible experiences generally have life altering symptoms and severe headaches and the treatments are an attempt to mitigate these. If you don't really have symptoms it's very liveable with regular eye checks. It used to be called "benign intracranial hypertension' as it was seen as not really a problem - I think benign was taken away as it was recognise people who have untreated and severely can eventually lose their vision. My papilloedema never affected my sight and the tinnitus was annoying but not dangerous. So it doesn't have to mean anything too awful.

Obviously you had a brain scan so you must have some symptoms but the forums are full of people who have it the worst. Usually it's quite mild I think

@Kylorey yes I paid extra to have the photograph. I was getting persistant headaches. They went away for a bit but now back. Neurologist diagnosed muscle spasm headaches but I'm not so sure. I feel sick quite a lot. My neck is now also very painful. Fed up of feeling ill all the time and whenever I go on the forums to speak to people with it, most have to have brain surgery or live in severe pain. I'm 32 with 2 very young children.

I was diagnosed in 2018. I tried all the medications and couldn’t tolerate any of them, and have honestly lost count of how many lumbar punctures I’ve had.
On the 21st January 2021 i had emergency surgery to fit a vp shunt as my eyesight was deteriorating faster than I hoped. The recovery from surgery was rough, and I managed to catch covid from another patient which didn’t exactly help!

My main symptoms have always been high pressure headache (no improvement when lying down, often worse when moving between sitting/ standing and bending over), dizziness, nausea, tinnitus, vertigo/ balance issues -would often feel like I’m on a boat wobbling all over the place when walking! I also suffer from nerve pain from the many many lumbar punctures.

Can I ask if being overweight was an issue fotr anyone? I understand that 90% of people diagnosed are overweight women! I am 1.5 stone overweight but I've been heavier than I am now...would hate to think I've done this to myself (if it is this)

It definitely was linked for me. I was already about 1.5 stone overweight, then I literally gained 4 stone in 3.5 months - I weighed myself mid October then not again til the start of February and that was the difference. My tinnitus started that month.

I've lost 5 stone now and that's what's helped. I was only 24 then (31 now). There's medication before surgery, and more research all the time. Do you have twitter? Theres a doctor on there from Birmingham who is a specialist and interesting to follow. She is @IIHDrBirmingham. I saw a neurologist from Addenbrookes who had me change contraception. So there are other options though of course for some the only eventual option is surgery.

The US forums particularly are very doom and gloom and awful. I'd avoid them personally until you have more information, eg. had diagnosis confirmed via lumbar puncture and therefore know how bad your pressure is. Self blame is also not helpful though I recognise it. Lots of people are overweight and don't have this. 1.5 stone isn't crazy overweight anyway.