Idiopathic intracranial hypertension

[StarInTheSky2]

Hello All,

I guess I just need some hand holding please.

I have been diagnosed with IIH and had a lumbar puncture with opening pressure of 33 and have been given Acetazolamide 250mg morning and evening. Have only been taking it for a week.

Initially I had sore eyes and I went to the opticians where they saw my optic discs were swollen and sent me to the hospital where the eye department confirmed. Then I was seen by neurology etc.

Since starting the medication I have had really bad headaches which I didn't have before and my eyes have become really painful, is this normal?

I'm still trying to get my head around this that this isn't curable and feel so down. My neurologist did say symptoms may get better if I lost weight which I intend on doing but I feel SO TIRED with this medication. I have a 2 and 4 year old who started nursery and reception this September and put a downer on everything because whilst I was waiting for the lumbar puncture, I was put on Topirimate which made me VERY confused all the time but thankfully I don't take this anymore although I still do feel a little confused, could it be this medication too?

Has anyone else been diagnosed with IIH? How has it been for you?

My daughter was diagnosed aged 28, and it does worry me that she's not lost any weight but she found the first few months on the medication the hardest as it took a few goes to get the drug dosage right. She's now doing really well, but the headaches were really troublesome to start with. She just struggles a bit if she gets overtired and does too much reading.

Welcome to a niche medical group! I was diagnosed about ten years ago.

Have been on acetazolomide at different levels - takes a while to find the right dose. Side effects are...interesting but ultimately manageable for me compared to the IIH symptoms. I am now down to 250mg once a day - take it before I go to sleep. Still get side effects - sometimes pins and needles etc but otherwise I find it ok. Actually tried topiramate for a while instead of acetazolomide but it gave me brain fog and I couldn't do my job properly.

I have gained and lost weight over the years - losing weight has never "cured" it but possibly helped - but really I think it is the acetazolomide that keeps it in check.

Worst IIH symptom for me (other than headaches) is pulsatile tinnitus - that is what lead to the diagnosis and I went to an ENT consultant to try to figure out why it was happening - he sent me for scans and off we went...

My neuro says menopause may cure it - deep joy...

Have faith - you can get to a place where it is all under control and the acetazolomide does the trick.

I would say try to avoid online forums eg Facebook groups until you are feeling better. They inevitably are full of people who are struggling and it can be scary.

Hello I'm in the IIH club too . Diagnosed after DD2 similar pathway to yours . I have taken Acetazolomide for years and now on a tiny dose . I'm post menopause and neurologist keen for me to come off it now .
Like you I couldn't tolerate Topimerate . I'm not massively overweight in fact when I was diagnosed and throughout my journey, I have been a normal weight and the neurologist often used to get students in to show them that I'm apparently a typical.! Like previous poster , I'm not sure if weight has much to do with it , there are varying schools of thought . I'd say personally when I was pre meno if I went above a certain weight my symptoms would be more troublesome . I certainly don't think losing weight is necessarily a way to cure it.
My neurologist feels that mine was caused by hormones directly after the birth of my DD & it has reduced I think with meno !!!
I'm still affected by infections particularly throat - seems to make my headaches worse . I've worked and managed my symptoms but it's not always been easy . The acetazolomide caused awful tiredness - I remember crying in the street to my friend I was so tired with my little DD .
Can you speak to your prescriber to see if you can reduce and see how symptoms go ?
I think your body gets used to it in the end .
@sellingsilver I think you are right about FB groups but I did find IIH UK a valuable resource and lots of people in same position.

You definitely will get to a place where it's more in control and you'll get to know what sets things off for you and when to rest ( if you can !) I try to eat a low salt diet too. Salt and alcohol set it off .

I also have this, it was diagnosed from the pulsatile tinnitus.

I'm fortunate that mine is minor, I don't have other symptoms and I haven't needed treatment, and it's either stable or getting a bit better. I have lost a little weight so perhaps that has helped.

There is a good team at St Thomas's Hospital in London, if you are in that region.

Good luck, hopefully it will improve. I don't really have advice but I have it with no symptoms at all now so there is hope!

Hi i was diagnosed in 2018, for me the medications didn’t work, so in 2021 i had a vp shunt fitted. It saved my sight and significantly reduced the headaches but equally caused its own fair share of issues.

I haven’t managed to loose weight- in fact i am probably 4/5st heavier than when i was diagnosed. But there have been studies that show it is a metabolic condition, and therefore affects weight loss. If you additionally have empty or partially empty sella syndrome like many IIH sufferers, that will also affect weight loss/gain.

if you haven’t already done so i do recommend cutting out alcohol and caffeine, both are known to raise intracranial pressure.

@rubyslipperss studies show about 70% of people get a significant amount of improvement and/or clinical resolution if they lose 5-10% of their body weight. So it's a hugely important thing to do.

There are lots of clinical studies on it. One is here
https://journals.lww.com/jneuro-ophthalmology/fulltext/2017/06000/obesity_and_weight_loss_in_idiopathic_intracranial.18.aspx, but you can also see others if you scroll down to the references at the bottom.

OP iron deficiency can also be a risk factor for IHT, have you had your iron levels checked recently?

Acetazolamide can be quite a brutal drug with a few side effects (but great for stopping damage to vision if you have IHT). Worsening eye pain is one of the side effects which needs investigating though as it causes a reduction in aqueous production in the eye. I would definitely contact the clinic and explain your symptoms.

Thank you, I'm glad your daughter is feeling better.

Thanks for your message and sorry for the late reply, I've had a throat infection.

It's good to hear you're doing well.

When I was diagnosed I joined a Facebook group and it was all doom and gloom. It was stressing me out so much I left the group. I think it's affecting me mentally more than anything as I've read it's a disability and not curable.

Hi thanks for your message, sorry for the late reply I've had a throat infection.

I'm sorry to hear you had a hard time with feeling so tired but happy to hear you are doing better. I'm currently feeling very tired and feel very bad for the kids.

I left a message for my neurologist on 13th September but there hasn't been a reply from him.

Although I'm overweight, my neurologist thinks it's a hormonal problem. I was also diagnosed with PCOS about 6 years ago but didn't have any issues conceiving. I have read taking antibiotics can be linked which I have been taking lots of as I've had reoccurring sinus infections and currently seeing ENT.

Hi, thanks for your message. I've been unwell so apologies for the late reply.

Did you have a lumbar puncture to confirm your diagnoses?

Before I was diagnosed I had an occasional headache but put it down to my sinus issues as I have acute sinusitis and currently seeing ENT. The only other symptom was sore eyes which I've had on and off over the years as I have dry eyes.

It's good to hear you're doing well.

Thanks that's really interesting. I must admit I haven't read any research for a long time. It's interesting that they are looking at it in a slightly different way. I've just lost 8 lbs so hopefully it will help coming off the acetazolomide.

Hi, thanks for your message.

I did try and ask for an MRI but my neurologist isn't keen as a CT has been done and he said all looks good. Most of the headaches I get are down the right side and even go down to the neck.

I don't drink any alcohol or caffeine and never have. I have cut out sugar and carbs and have lost 8kg since end of July. I'm hoping to join the gym soon.

That's amazing weight loss !
The antibiotic that can cause it is Tetracycline. Was it that you took ?

Hi, sorry for the late reply. I've been unwell with a throat infection.

Thanks for the link. I will have a read. I have already lost 8kg and hoping to start the gym soon but feeling extremely tired.

I have suffered with anaemia since my teenage years so about 15 years now. In most of that time it's been below 5 and my GP kept giving me tablets but once I finished the course it would go up to about 15 and then tablets would be stopped and it would fall back down. After I had my son in October 2022, I was feeling really run down and kept getting ill with a flu and temp every month. I had a blood test and my iron levels were 3 and my GP still wanted to give me tablets so I had a private iron infusion at Harley Street. My iron levels went up to 90 and I felt amazing! But they have now dropped back to 50 and I can't afford another private infusion.

I'm still feeling really run down and seem to catch all the bugs going around although I have no deficiencies (confirmed by full blood test). I'm also seeing ENT for acute sinusitis which started around December last year and have a sinus infection every month. Apparently I have enlarged adenoids and enlarged tonsils which may need removing but I also need a sinus wash because I have so much gunk in my sinuses. Not sure if this will resolve it though.

This condition is affecting me mentally more than physically I would say. It's something I think about every minute of every day and some days I just don't want to get out of bed. I have been thinking to stop with the medication as it's giving me more side effects than before when I was taking nothing but obviously I can't do that as I don't think my neurologist would agree.

Sorry for the long reply!

Thank you.

It was doxycycline which I believe comes under tetracycline.

I have read that it shouldn't be prescribed to overweight people and I was prescribed it twice in a row when my sinus infection wouldn't clear up.

Look into csf leak

I had a lumbar puncture about 4 weeks ago. I doubt I can have a leak for that long? There was no water coming out of my back when it happened.