Hi I'm Amy

I'm 27 years old, living in England and was diagnosed with IIH on Valentines Day this year.

Diagnosis came as a massive shock to us as unlike most iih sufferers, I was only getting what I perceived to be mild headaches, which I've had for years but the doctors always had an answer (ie. the contraceptive pill etc). It was only when I went for a routine eye test at the persistence of my hubby that the opticians found I had large papilledemas, I was admitted to hospital 2 hours later, and told that they were actively looking for a brain tumour. After all the obvious tests including 5 lumbar punctures over 48 hours, the neurologists diagnosed me with IIH.

You would think it would all be pretty much straight forward after diagnosis however I was 14 weeks pregnant at the time which pretty much ruled out any medication, (currently 21 weeks) I am on limited pain relief so am having to struggle through without very much help at all. My Obstetrician and neurologist are currently in talks whether or not I will be able to have a natural birth if the paps haven't gone down, in case one of them ruptures! So everything is very much in the air at the moment. Not really 100% sure what's going on, haven't really been able to find much out, hence why I'm here,

Since my lps, my headaches have gotten dramatically worse, and I have started getting whooshing noises behind my ears and in my neck, I have started having double-vision and blackouts. None of these symptoms were present when I went for my eye test. Has anyone else had this?

The upshot is, I'm not allowed to be ill.... I have an amazing 4 year old and a 3 year who mean the world to me, a husband who is my rock and who I couldn't be going through this without, I have a great job, I was attending uni part time and I have a baby on the way.... believe me, I don't really get the time to have headaches etc... they do say God has a good sense of humour... I also have fantastic support from my family and very close friends, although I haven't made it common knowledge as yet, still trying to get my own head around it all

Anyways, just thought I'd say hi,

Love Amy xxx

Hi Amy and a warm , I can relate very much to your story, as I was also pregnant when I started with IIH, the pregnancy actually triggered it, although not diagnosed until my daughter was 8 months old. Like you I was unable to have pain relief and struggled on. All the things you are describing are common symptoms with high pressure, the whooshing in your ears, double vision and blackouts are all part of the IIH when not under control.

I love your determnation and that you have support from your family, which is very important, as often you can feel very isolated with this condition.I'm sure that both your Neurologist and Obstetrician will come up with a treatment plan for you, here is the link to the information we have about pregnancy and IIH. IIH and Pregnancy

I don't know if you have ever heard of these, but Migracaps have been developed for Migraines and have been provenb to be very effective, often an IIH headache is mistaken for Migraine because some of the symptoms are similar. The Migracap combines cold therapy and complete darkness to provide relief from the pain associated with a migraine and most types of headaches. Maybe this could be of help to you during and after your pregnancym, because it is a non drug therapy. Here's the link for you to have a loko at it and read more information about what it does. I do know you can get them cheaper on Amazon and Ebay. . Migracap