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 Life with IIH

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PostSubject: Life with IIH   Mon May 03, 2010 6:28 pm

I Have IIH
Living with IIH

Being Told You Have IIH
It's probably been long, frustrating and at times disheartening getting to your diagnosis of IIH. You may even have seen your doctor so many times, you know his first name, his wife's and all his children's too. Seeking a reason for the constant agonising headaches, blurry vision and the constant thump, thump, thump in your ears, will have seemed easier said than done.

No doubt it will have been suggested to be migraine (a common misconception), tension, stress, a need for glasses and even possibly a brain tumour. The constant describing of the pain in your head, which can feel like a hand in your head squeezing your brain, the painful poking feeling behind your eyes, and pain on moving them, can seem very much like a "groundhog" moment.

It could be, that it was your Optician who finally discovered the problem, and sent you off to your doctor with a letter, or finally your doctor realised on closer examination you needed to see a Neurologist. From there you will have followed the diagnostic path of eye and blood tests, MRI's, CT scans and lumbar punctures, until EUREEKA!!! A diagnosis, the cause finally being revealed as a rare condition called Idiopathic Intracranial Hypertension.

I'm sure your mind reeled as the Neurologist explained it to you, highlighting causes, the medication you can take to alleviate it, that it's incurable, and should it become hard to manage with medication, a shunt could be fitted to help drain away the excess CSF. A lot to take in, and even more to get to grips with, after being relieved it wasn't a brain tumour, that you now knew what was wrong with you, your diagnosis will be a small comfort.

Once home, we're sure you hit the internet and Googled it, and found as much information as you could, even support groups, even joined a few. At least you can see that you are not alone with this condition, and there are others, who went through the same if not similar process as you did, who feel the same as you do, and will experience much the same as you. So what happens next?

Your Neurologist will have prescribed Diamox (commonly used) for you, which will help alleviate the symptoms, as long as you take it as advised by them. Of course the downside to Diamox are the side effects, which some sufferers have difficulty tolerating. Your eyes will be checked regularly by the hospital Opthalmologist, and you will see your Neurologist regularly in order that they can monitor your IIH.

At this point it would be wise to invest in a diary, and keep a note of what your symptoms are, when and how often, what side effects you experience with Diamox. Keep a note of any changes you notice with your vision, be descriptive, note how long the loss of vision lasts for (if any), and if you experience pulsating in your ears.

This information will be invaluable to your Neurologist, and your Opthalmologist, and gives them a clear picture of how you are progressing. It also gives them a frame of reference of how long a deterioration has been, or improvement and stability has occurred.

Social Life and IIH

Although you have noticed that there are things you no longer or able to do, there are still lots of things you can do. Having this doesn't mean your life is over, it means it has to be adapted. Keep positive and focused by setting yourself small achievable goals, this will help not only your confidence, but gives you a sense of normality. Be realistic, build up to things bit by bit, and increase things as you become aware of what your IIH will tolerate without you becoming too ill to do anything at all, to overdo things only makes you feel disheartened and knocks your confidence

Don't give up on your social life, obviously you may not be up to partying at times, but a social life is important and prevents feeling isolated. Some sufferers feel that it's a personal illness, and often find it difficult to talk about or explain. Once you have got to grips with it, when you feel comfortable telling your friends, make sure you give them as much information as you can about it. They can either look it up for themselves online, or you can simply print off information and give it to them. Let them ask you questions and be as candid as you can.

If you are in a relationship or have a partner, involve them as much as possible when it comes to hospital appointments and tests, this way they are kept in the loop, it will help you both, not just the fact you are supporting one another, but it means that they know exactly what you're going through and have the same information you do. They have the chance to ask the doctors question you may not have thought of, and question they themselves need answers to, answers that you wouldn't necessarily have the answers to yourself.

If you don't have a partner, don't think that having this, means that relationships are out of the question. Again it simply means, that when you feel comfortable enough, and feel confident enough, you can explain to your new partner about your illness, and provide him with as much information as you feel is necessary at that time. As the relationship progresses, you can then go on to give more information. This is better than bombarding them with too much information, as you know yourself, it's a lot to take in initially. In the early stages of any relationship, when you're at that "getting to know you stage" you give basic information about which gives people the chance to get to know you as time goes by.


Although it has now crept silently into your lives, and is now at the moment a focal point, it doesn't have to be all that your life is. With you now diagnosed, the medication and regular monitoring you should be able to go on leading your life as before, there may be some changes and compromise that has to be instilled, but it is achievable.

One more thing to remember, you are still "you", IIH is now a part of you, it is NOT who you are, and through the fantastic conception of the world wide web, you are not alone!

IIH And Your Family Life

If you are a parent who has been diagnosed, this is probably devastating for you, although the relief that it isn't life threatening has assuaged some of your fear, it has left you feeling powerless knowing that this has happened to both you and to them. Having to go for eye tests, Neurology appointments and numerous other tests, will have been hard on you, especially the painful procedures such as the lumbar punctures. No parent wants their to see them suffer or be in pain. If they are very young, your instinct is to protect them, and helping them to understand, when they're so young it's a challenge in itself.

It can be equally hard them seeing you suffer the side effects of the medication, high/low pressure headaches, and the times when you are too ill to play with them, or do the things you normally do together. Keeping their life as normal as possible can be achieved with adaptation and compromise, and this like everything else is found out by trial and error.

If you're going to have a shunt, or need a shunt, the more information you ask your Neurosurgeon, the better you will be equipt to adapt to life at home and/or work. It also means you are able to diffuse the fear and worry your children will have, obviously this is depending on their age. Of course the main thing you want to do, is to help them to have as normal a life as possible and the way to achieve this is by determining what you can do alone, and together.

When you are a parent to an older child, say an adult, their understanding of this rare illness can be difficult at best, more so if you don't live with them. Not seeing the daily affects of this condition keeps them out of the loop somewhat, and so when you talk of lumbar punctures, field tests, and perhaps eventually shunts, it can all seem a little over their head, and mean absolutely nothing, unless you are armed with some kind of information about it. Looking at you, they may think you don't look ill, but you have to remind them that this is a neurological illness, and not always a visually physical one.

Your son/daughter will be trying their best to understand and cope with your diagnosis, and at times will find it hard and depressing. They may not want to burden you on how they feel, instead choosing to keep it to themselves. They may even feel that they are letting you down, so it may fall on you to approach the subject of how they feel and are coping. Encourage them to talk about how they feel and how it affects them, as often not doing so can make them feel isolated. Family support not only gives the sufferer strength and a feeling of not being alone, but the whole family too, which ultimately will help in the long run.

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