Monday, February 7, 2011

How do you cope when your partner is diagnosed with IH?

(Posted for Victoria)
Why? Why me? Why us?
These are questions many of us find ourselves asking.
Getting a diagnosis of IH can be a long battle.
For us it was relatively short in comparison to many cases.
9 months after my husband had started showing symptoms of IH he was diagnosed.
Of course at the time we didn’t know that the headaches, blurred deteriorating vision, nausea, light sensitivity, noise sensitivity etc were symptoms of IH.
We hadn’t got a clue!
We’d never heard of IH!
We were all convinced it was due to him working too many hours on the computer, stress etc.
It was only when he took some time off work on sick leave that we knew something was seriously wrong.
I could see him deteriorating day by day. His speech was slurred; he was forgetting words, muddling his words. He was in constant pain; not only in his head, but his neck, back and shoulders….he complained of his tailbone aching 24/7.
He was constantly exhausted; no matter how much he slept he was still tired.
We were not prepared for what the Doctors initially told us, yet since we have found out that so many IH sufferers are told a similar story.
 “It might be a brain tumour!”
Your mind starts racing with a million and one questions.
I looked at my children’s innocent faces, they were so young.
I HAD to be strong, for them and for my husband. I HAD to be!
I couldn’t let them see how inside I was screaming ….
‘Stop the world I want to get off! I can’t handle this! This can’t be happening!’
No instead I had to put a smile on my face and tell everyone it was going to be ok…which is exactly what I did.
For my husband it meant immediate hospitalisation and day after day of testing for the causes of the papilledema (swelling of the optic nerve) Of course all the tests came back negative.
Eventually one of the neurologists suggested a lumbar puncture – bingo!!! Result!
My husband’s pressure was 42 - IH is diagnosed at a reading of 25 and over!
So at last we had a diagnosis. Intracranial Hypertension or Pseudo tumour cerebri as they called it back then.
Not a brain tumour, but brain tumour type symptoms.
We were so relieved.
It wasn’t a tumour.
It WAS going to be ok.
Doctors were convinced it must be a one off fluke. “After all Men don’t get IH you see!”
Of course they were wrong, Men DO get IH!
Anyone can get IH, no matter what their age, gender, or race…. ANYONE CAN GET IH!

Life as we knew it changed from that day on; little did we know that the diagnosis would be just the start!
Within 6 months after diagnosis it was becoming apparent that my husband would have to retire from the teaching career which he adored, he was just too ill to work anymore.
I gave up my job to become a carer.

When someone in your family becomes sick or disabled it has a huge impact on the whole family.
Everything changes and it leaves you feeling angry with the world.
Why me? Why my family? It’s not fair!!!!
You feel as if everything you have worked so hard for is being taken away from you.
You feel out of control.
Life becomes a day to day, hour to hour, minute to minute existence…constantly revolving around the sick / disabled person.

No-one plans to become sick or disabled, but these things happen and when you have children they can’t help but be affected. Roles become reversed and they become young carers.**
The guilt that it creates is not to be underestimated.
Very often the sick /disabled person feels as if they are a burden to the family.
They see the impact and the restrictions that being a young carer has on their children and it’s not the childhood they had planned for their children. It’s heartbreaking. Yet if you ask these young carers if they would have it any other way, you will hear them tell you how much they love their family. Very often they wish things were different, but they accept the situation and say that they want to care for their parent/ sibling/ grandparent.
All they ask for is to be better supported, and recognised for what they do.
Each young carer’s story is different and each story is incredibly moving, inspirational and shows daily acts of courage and selflessness.

As a parent it can be so hard watching how your child copes when they go to school. Many children who have a disabled/ sick parent at home feel isolated from their peers within school. After all how can another child with no personal experience of living with a sick/ disabled family member really understand how the young carer feels?
Some schools don’t offer enough support for young carers either… don’t get me wrong – some schools are amazingly supportive and cannot be faulted, but unfortunately so many schools aren’t.  
**Recent surveys showed that  60% of young carers do not think their teachers understand what life is like for them and over 50% do not feel supported, although teachers are aware of their caring role.
39% said that none of their teachers were aware that they were a young carer. **
Very often the children worry whilst they are in school. Is my Mum/ Dad / brother/ sister/ grandparent alright? Are they having a bad day? How much longer till I can get home and be there for them? 
 ** Research showed that 38% worry about the person they care for while they are at school **
70% of the children surveyed agreed that “being a young carer has made my life more difficult”.

The UK’s Children’s Society and Princess Royal Trust for carers have created a schools resource pack to enable schools to teach awareness of disability and young carers issues amongst their pupils as well as it giving the school step by step guides of how best to support young carers within their schools. It’s available as a free to download online resource, and the link is,6282,PR.html

If your child is one of the young carers described above who has a tough time at school it just makes the guilt you’re feeling worse.
After all this IS NOT how you had planned your lives to be.
You didn’t ask for IH.
You didn’t want life to change.
So how do you cope?
How do you start making the most out of the life you now have, rather than grieving for the life you’ve lost.

We personally found that knowledge was power! (as the saying goes) We started learning as much as we could about IH through the IHRF website. We made brochures for our closest friends and family members.
 Some useful pages to look at for this purpose are

We also wrote down how IH affects my husband on a daily basis. (inc good days, bad days, and when pressure is high or low)
We noted all of his symptoms and gave a brief explanation of each and included this in the brochure.
Here are a couple of examples...

When people see him out on what he calls a good day they think he’s ok. They don’t realise that even when he says he’s having a good day he is still in pain. He has learned to deal with moderate head pain (that would render a normal person to bed.) A good day can also turn into a bad day if he is put into a stressful enough situation, his brain pressure will start to rise. The weather changing to low air pressure also causes his brain pressure to rise...very quickly if it’s severe weather.

DAILY HEAD PAINS. – Every day.
 These  range from a headache or migraine ( on a good day )  to severe pressure head pains when
 his brain is being crushed by the raised pressure ( on a bad day.) He describes it as if his head is in a vice
 which is being tightened. On a bad day he hardly gets out of bed!

EYE PAIN. – On the bad days – worse as pressure increases.
This he describes as a feeling of his eye being pushed outwards from inside his head, followed by a stabbing sensation from behind the eye and as if his eyes were “tearing”.

Sleeps between 10 hours ( on a good day) and 18 hours  or more ( on a bad day.)

Include symptoms that only appear when the pressure is high or is increasing – such as –

…As if someone has opened your head and filled it with ice cubes.  (Happens when the pressure is wrong)
 This is when the pressure is very high.
 This is an ongoing problem caused by IH which gets progressively worse as the pressure increases.

Don’t leave anything out…..I’ve given just a few examples here but in total we listed 30 symptoms in our document.
We have learned that by explaining things as openly and honestly as possible (using your own terms to describe what it feels like) has a greater impact when trying to get the people around you to understand.
Due to the fact that IH is an invisible condition it makes it difficult for people to grasp how serious it is.
You still look fine so therefore people on the outside looking in don’t realise how ill you are.
They may think you are exaggerating and you may find that some friends start to disappear just when you need them the most!
This is a tough life lesson to learn; that it’s better to have a few ‘real’ friends who are there for you through the good days AND the bad days, rather than lots of ‘fair weather’ friends who run for the hills on the bad days.

Don’t be afraid to stand up to those who can’t understand IH, and tell you it’s ‘just a headache’ and ‘get over it’.
If you have people in your life who are making you feel as if you are exaggerating and making it all up then that is so soul destroying and negative. It makes you feel as if you’re banging your head against the wall and it leaves you feeling frustrated, alone and depressed…especially if these are people who SHOULD be supportive.
Life has been much happier and more positive since we chose to only have those around us who are positive and supportive.
They are there in good times AND bad times.

These days we ARE positive.
There’s no more ‘Why me?’
Nowadays we think ‘well why not me?’
We believe everything happens for a reason, however hard it might be to come to terms with that thought when it happens.
In time you’ll see why it happened.

Our motto is to make the most of each day.
If it’s a ‘good’ day then do something with the day, make memories with the kids, with your family and friends….no matter how small …appreciate everything in life.
If it’s a bad day, just try to get through the day minute by minute if need be…try to focus on the knowledge that there’ll be another good day just around the corner, and focus on what you’re going to do with that day. Sometimes it can be so frustrating and disappointing when you have to change plans at the last minute due to a ‘bad’ day, but we have learned to accept it.


                                                    **  What is a young carer? ***
School’s Resource pack -

National Young Carer’s Coalition Comments ** ***

IH Research foundation (for more info on IH) **


  1. Thank you for sharing your story. As someone new to the IH world (traveling this journey with my daughter), you bring me much comfort. Thank you again.

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