Intercranial Hypertension - Too Much Pressure To Push?

I thought I’d write about my experience of pregnancy with IIH. I was diagnosed in June 2015. Idiopathic Intracranial Hypertension (IIH) is a neurological condition of unknown cause defined by increased intracranial pressure around the brain without the presence of tumour or disease.

You may also occasionally see it referred to as Pseudotumor Cerebri because sufferers present with signs and symptoms of a brain tumour despite no tumour being present. As you can imagine, it can be as painful as it sounds.

I have suffered with headaches as long as I can remember but started getting pressure type headaches when I was 19 (I was 25 when diagnosed). My eyesight is poor but my condition was never picked up by an optician as I did not have the symptoms which affects the eyes (papiladema).

I remember struggling through university and work until one day my headache and vision was so bad, my manager made me go straight to A&E. They sent me home with ibuprofen and said if it was still bad, to go back the next day.

12 hours later I could hardly see or function so returned. The doctor took one check of the back of my eyes and said I needed a bed immediately. That was a very long night in a hospital corridor with a curtain around me due to lack of beds. Just waiting for the morning when they would tell me I would need a lumbar puncture.

The procedure was done a few hours later and I remember thinking it wasn’t that bad. It didn’t hurt as much as I thought it would and my headache practically disappeared. The doctor said I could go home and wait results. It was only the very next day whilst I was in work, (probably not the best thing to return to straight away after an invasive procedure) that a neurologist called me to see me within the hour.

My boss kindly let me go and the neurologist explained that I had this condition, IIH. He couldn’t give me a lot of information about the condition but said I needed to lose weight and gave me tablets called Topiramite/Topamax which he said would help.

So I began my journey of managing this condition with little to no information. All the information I have found has been from support groups on Facebook or the internet. The US seems to be way ahead of the UK on research of this condition so I obtained a lot of information from US sufferers. There constantly seemed to be more questions than answers.

But I took the medication and ended up in hospital with infected Kidneys which stopped functioning. I wasn’t aware that on Topamax, you have to drink a lot of water as they can cause Kidney problems.

I continued to work on my weight loss, Topamax is an appetite suppressant so it partly worked. It made me go off chocolate and carbonated drinks which also helped.

Over a year from diagnosis (July 2016), I had lost 3 stone. We also got married in August 2016 and unfortunately lost a baby a month later. My consultant believes this to be attributed to the Topamax as it can cause development issues in unborn children.

I went for another lumbar puncture and was happy to hear my fluid levels had decreased dramatically. I am now in remission and no longer taking Topamax.

So, after losing our first, we decided not to actively try again but to let nature take its course and in January 2017, we were blessed with our second pregnancy and our baby girl is due in 4 weeks

I was slightly worried about my condition worsening during pregnancy but my husband has been so supportive and we have managed any weight gain quite well (I’ve put on 22lbs in total throughout the pregnancy).

I was placed under consultant care to discuss my condition and the risks. They advised that they don’t like to let mummys-to-be with IIH push for long due to the pressure and that I may have to accept help when it came to labour.

This was something I wanted to avoid. I had my heart set on a water birth and really didn’t want an epidural due to nerve damage from a lumbar puncture.

I went to see an anaesthetist who examined my back and he agreed he wouldn’t want to go poking around whilst I was in labour.

Very fortunately, due to my being in remission and managing my condition well, the anaesthetist advised that I could be midwife led as they would rather me be allowed my water birth, (water births can help prevent the need for epidural).

I have been rather lucky throughout my pregnancy with regards to symptoms and I just want to give some hope to those with the condition who want to have a family. It is entirely possible and can be managed well. The best thing I did was to lose the weight before getting pregnant and I do genuinely think that has been a massive help during this pregnancy and for my overall health. Pregnancy can increase or worsen symptoms of IIH so hive yourself the best chance of a comfortable pregnancy. Your health, mental and physical, is just as important as the baby’s.

Before getting pregnant, please speak to your doctor first. The medications available for IIH can cause complications or even miscarriage, even though there hasn’t been enough testing, it simply isn’t worth the risk. So it’s always worth having a conversation with your doctor.

If you need any support or want to know more please don’t hesitate to message. I love helping people with their own journey and even I know, sometimes it’s easier to speak to someone who’s been there

Written by Gemma Louise Seabourne for her blog, I Was Told There Would Be Glowing.