Newly diagnosed

Have you recently developed severe facial pain, or had severe intermittent pain for a long while and finally been diagnosed with trigeminal neuralgia?

It’s likely that you’d never heard of the condition before and perhaps your GP may not have given you much information about it.  You are no doubt worried about what your illness means and may be feeling overwhelmed by some of the things you have been reading.

Having a rare condition can mean that family, friends and colleagues don’t understand what you are going through.  It’s not just because of the unpredictability of your pain – sometimes, the medication you take to control it may have side effects.

You are probably wondering how TN will further affect you and how you will be able to cope with the pain in different life situations.  You will no doubt be asking yourself which circumstances will make it worse, what will trigger another attack, where can you find peaceful space if you want to be alone to deal with an attack.  Also what to do when others around you are concerned for you but aren’t dealing very well with your distress (or their own at seeing you in pain!).

It’s important to know that just as we all respond differently to pain, our bodies can respond differently to the medicines you’ve been prescribed for your TN.  There isn’t a ‘one-size-fits-all’ medical regime and it could take a while before the correct medicine is found for you.  Even if you are lucky and the first prescribed drug works well, you will still probably need a period of adjustment.  Many of us need to take time out from work to adjust to medication and need to rely on other family members to take over for a while those things that keep our homelife running smoothly.  (And sometimes it can be hard for us to admit that we need help, or to find the courage to ask for the time out that we may require)

So, how can the Trigeminal Neuralgia Association UK help you?  The fact that you are reading this page means that you have found our website and will notice that we have a Members’ area.  By joining you will have access to even more helpful information about what we do and how we are able to offer additional support through interaction with healthcare professionals.  ( Join online here.)  You will also find an extensive Question and Answer section there, however in the meantime, below are some of the Q & A that may be of immediate concern to you.

Q  Will it go away again?
A  Yes but unfortunately it will return, however, medication can alleviate or even stop the pain.

Q  What will I tell my children?
A  See the section on our website entitled Children and young people with TN which can be found under the heading About TN.

Q  Will I go into remission and for how long?
Classic TN is an intermittent condition and therefore there will be periods when you are without either pain or the need for medication.  Periods of remission can last for weeks or months and in some cases even longer.

Can I still drive?
A  Where your ability to drive is affected by your pain or the effects of medication, then you would be wise to consider whether it is safe to do so.  The DVLA does not require notification of TN. (Members see Fact Sheet 4)

Should I tell my employer?
A  Yes, if it means it is difficult to do your job or you are having to take time off because of TN.  Most employers will not understand what TN is or how it affects you unless you explain it to them.  Ask how they can help you to do your job on those occasions when you suffer an attack or are dealing with the effects of medication. (Members see Fact Sheet 2)

Our teams of Helpline Supporters (who are all TN sufferers) and Medical Advisory Board (who are TN experts) are here to answer these and other questions.  We can help you find answers where possible and guide you through these early days.

However, although we don’t have all the answers, our supporters have time to talk to you and a great deal of experience – they will work with you to help you determine what course of action will be best.  We are only a phone call and email away.  There may also be a Local Support Group near to you where you can meet other sufferers and not feel isolated or alone.  Professor Zakrzewska’s book, ‘Insights’ – available through our online shop – is an invaluable resource and is a mine of information with facts and figures about medicines, other treatments and all things TN.

TN can be a life-changing condition, but we are all different – it’s important to remember that whatever you have read or heard about Trigeminal Neuralgia may not happen to you and there are many ways you can put things into place and make a few changes to ensure that you are in charge of your condition and not the other way around.

Telephone helpline: 0800 999 1899    Email helpline : [email protected]   Office: 01883 371595