Does anyone here have IIH (Idiopathic Intracranial Hypertension) as well as migraines?

[Cassie0409]

Hi I'm new here. I have iih and migraines. The migraines are secondary to the iih and at the moment I'm not on any medication. I'm suffering with daily headaches and pressure/pain in my head. Pulsatile tinnitus and regular tinnitus, especially when turning my head as well as neck pain. Headaches can be at the front, top or back of my head and sometimes they make me collapse (this is due to low csf around the brain). Hopefully I'm not alone.

If you got this far thanks for reading!!!

[Clairenbrown]

Hi Cassie, I have the same symptoms as you and have always suspected I have IIH and migraines however my GP will not do a LP or even a blood test, they just said I have migraines and put me on Topiramate.

Mine started after spine surgery which resulted in me being readmitted into hospital with an oozing wound and suspected CSF leak though the surgeon wouldn't admit it! Eventually it self clotted.

After that I have had tinnitus which is both high pitched and a droaning, head pain around the back and top of my head , neck pain, balance issues, memory and speech issues - so no, you are not alone.

How were you diagnosed?

How are you dealing with life? I am lucky in that I work for my family firm so I have sympathy and a great deal of care, but I can imagine that for some people, dealing with the condition is a nightmare.

[Cassie0409 in reply to Clairenbrown]

Hi Clairebrown

I was diagnosed in October 2014 after a visit to specsavers. They noticed swelling behind my eyes so that prompted them to send me straight to A&E. I was admitted straight away and they did a lumbar puncture a few days later.

I was put on medication which did not work (had another lp while on the meds and pressure was even higher) so they decided to put in a shunt.

I've had many shunt surgeries since then and I have a long term icp monitor implanted. Also had csf leak repair (was leaking for months and nobody knew)

At the time I had to leave my midwifery degree and I was off for 2 years. In that time I was very sick. But after I got my latest shunt I started to feel better and I just finished my first year at uni.

I'm a lot better than I was, but I am still struggling with headaches. Occasionally the csf leak will play up and I'll collapse from low csf. But I mostly get on with it and just bear the headaches I get now. Life isn't what it was but it's much better than when I was sick all the time!!!

[Clairenbrown in reply to Cassie0409]

What a shocker for you, just a trip to Specsavers ended up with them diagnosing something so serious. It's great that they can, just imagine if they didn't do the checks. Did you go purely for an eye check or because you had other symptoms? Just wondering if I should go for an eye test as sometimes I feel like the pressure is pushing my eyes out!

Your life has been turned upside down but you seem so strong with a great attitude and congratulations on finishing your first year at uni and not giving up x

[Cassie0409 in reply to Clairenbrown]

Well I was getting really weird symptoms. Pressure in my face as if I had the flu, vision blacking out when I'd go from sitting to standing, blurry/double vision, the pulsing in my ears...but it was the pain behind my eyes which was soooo painful that made me go. I decided to skip the GP and go there straight. I just thought I needed glasses. Had just got an iPad and was struggling to see it at times.

My eyes actually deviates forwards from the pressure so they were literally bulging. My son was diagnosed with IIH but no vision issues just the pressure so sometimes your eyes can be ok but it takes longer to diagnose if no vision issues. For my son, he had a curious paediatrician who was vigilant but other doctors like to place the migraine label on things.

Yea it's been tough but I'm learning to live an active life with it. When the symptoms get too bad I just stop until I feel better. Thankfully it's not as often now.

I would definitely get your eyes checked. They can look for venous pulsations at the back of the eye, that can sometimes help to determine if the pressure is high or not.

[Clairenbrown in reply to Cassie0409]

I think I will get my eyes checked as one neuro said he could not see any venous pulsation but then said it was insignificant!

It's a shame your soon has IIH issues but you are so lucky he has a vigilant paediatrician, I have read horror stories of kids being made out to be making it all up.

Thank you so much for all of your advice, you have been so helpful and patient X