My daughter: 2 years of IIH (???) & diamox has not been good so far

[Stinne]

6 years ago my oldest daughter Emma (then almost 18 yrs) was rushed off to a hospital after 6 months of undiagnosed illness,- she was (finally) diagnosed IIH with a pressure of 50+. 2 LP’s to relieve te pressure 3 months diamox and then a year to get back in shape. She’s never had any symptoms since.

4 years later my younger daughter Sofie (then almost 16) had a rough half year at school, was never ill but now was tired & emotional. No headaches, nausea or anything like Emma had. Until Sofie suddenly came down with massive headaches and within 2 weeks double sight. Once again rush to the hospital, LP to ease the pressure and that helped. Her CSF pressure also was 50+
In hospital she also appeared to have her sinuses completely blocked – she got antibiotics, corticosteroid and was told to work with a nasal cleaner thing with salt water – all to avoid operation. It worked, she had completely clean sinuses after a few weeks. All other investigation turned out normal (mri, bloodworks etc). She was diagnosed idiopathic intracranial hypertension, an atypical case because she only gets headaches when the pressure is already very high and her eyes are in danger.

With both my daughters they never found out why. But with Sofie it’s now been more than 2 years since she was diagnosed and she seems to keep producing too much CSF. She was on diamox for a long time, relatively low dose; but got depressed, started having severe mental issues, dissociating, extremely tired, out of breath. And then she also got kidney stones from it – and as it didn’t seem to do the trick anymore anyway, she therefore was taken off the diamox; the third time trying it actually worked too: pressure stayed down (as in measured in the visual fields tests and the frequent controls of the eye nerve oedema). She has now been off diamox for half a year, with less frequent control of her eyes (from every 2 weeks to 5-6 weeks between check-ups). Got back on her feet, plans to go back to (part-time) school after the Summer and is actually having a physiotherapist helping her getting fit(ter) again. Has put herself on a healthy diet to lose some of the gained weight and has picked up with friends again.

But – in hindsight the pressure has just been building much slower: a few weeks ago all of a sudden her eyes went bad again, blind spot larger etc. A light headache, pulsating ears. She (17 yrs) agreed to an LP in the OC, with a mild anesthesia and it went ok. Pressure was once again 50+, was relieved and that helped – although her head (and spine…) still feel strange, she says. But of course this is not a long-term solution 🙁

We live in the Netherlands and there is way to little knowledge here – they want to give her a drain or serial LP’s. We are in touch with a German specialist in the field, dr. Tibussek, and are hoping he can help us. But are starting to wonder IF there’s more to her high IP than ‘just’ IIH. In the meantime we’re diving into all the information you provide, all new to us. F.i. diamox and sugar – who knew. And also the CO2 has only been measured once in all this time.

Does any of this sound like we should be looking in any special direction? Any advice is very very welcome – Sofie is in a fase of accepting that she probably is chronically ill, but of course still wants to make the most of her life. And frankly we are all very worried again, she’s had 2 very rough years.
Thank you for sharing you extremely valuable information!

[Barbara]

Hello,
Quick reply – just wondering, did Sophie have an MRI, to look for the cause ?

In the meantime, checkout Magnesium in the search box, there’s much about Magnesium Deficiency on this website, including a video by Dr Diana. It’s all eye opening and very informative and could be a useful tool in getting Sophie back to good health.

[Stinne]

Thank you for your reaction 🙂
Sofie has had several MRI’s and lots of bloodtests done – no cause has ever been found. Can’t help but wondering if the search has gone in the right direction though. Only thing they found was an extreme vitamin D deficiency, but they never found out how that could cause the high IP. She’s had supplements and they work well, she has been reasonably stable vitamin D-wise for a year now.
I will definitely look into magnesium.

[Dr. Diana]

Yes, definitely consider magnesium. One doctor we worked with got relief from high ICP from magnesium alone (most of us are not that lucky!). Vitamin D deficiency is a known cause of high ICP (documentation in the literature). I just wanted to mention watching CO2 when using Diamox — it must stay above 22mmol/L for it to work. I hope that helps!

[Author]

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