Trigeminal neuralgia. Can you help an old friend with advice on dealing with Trigeminal neuralgia, please?

Trigeminal neuralgia
Trigeminal neuralgia

A bit of an odd title for a blog I know, but sort of does what it says on the tin.  On Friday afternoon I got an email from an old friend who had just been diagnosed with Trigeminal neuralgia.

I’ll be honest it was not something I knew much about apart from it being a symptom of multiple sclerosis in around 3% of cases and, of course, is one of the most painful conditions there around.

As I could not answer Jayne’s questions I thought it would be a good idea to ask our readers who have Trigeminal neuralgia a bit more about their experiences and how they manage the pain.

As background, Trigeminal neuralgia is a stabbing nerve or neuropathic pain (http://patienttalk.org/what-is-neuropathic-pain-do-you-suffer-from-nerve-pain/) which affects the face.  The pain has been described as like being stabbed or an electric shock.

As well as the pain (which can last between a few seconds and a couple of minutes) people with Trigeminal neuralgia may also experience numbness prior to the pain and a dull ache during an attack.  It should be noted that attacks of Trigeminal neuralgia come and go over time.  Attacks may take place over a few hours but can go on for months.

The triggers really vary from cold breezes to facial movements such as chewing or even turning the head.

It is worth bearing in mind that for many people living with Trigeminal neuralgia can be very tough and in some cases can lead to depression.

Often doctors are uncertain as to what may cause Trigeminal neuralgia but in many cases it is a symptom of multiple sclerosis or a by-product of a tumour.

Current research suggests that surgery is the most effective treatment (successful in around 70% of cases) if use of painkillers has not worked as a first line treatment.

Going back to Jayne’s questions, she is interested in finding out the answers to the following questions:-

1)Please can you describe a typical Trigeminal neuralgia attack both in the short and long term?

2)How frequent are your attacks and how long do they typically last?

3)How firm was the diagnosis and who made the diagnosis of Trigeminal neuralgia?

4)Which type of Trigeminal neuralgia do you have?  What was the cause of your Trigeminal neuralgia?

5)How do you treat your Trigeminal neuralgia and how successful have the treatments been?

Obviously any part of your Trigeminal neuralgia journey will be really useful for Jayne so it would be great if you could share your experience using the comments box below.

Many thanks from Jayne and me.

People with Multiple Sclerosis How many lesions do you have on your brain and spine? Take our poll!

Multiple sclerosis lesions
Multiple sclerosis lesions
While doing some research for another blog post on multiple sclerosis I tried to find out how many lesions were typical.

Interesting such information did not seem to be available so i think it is worth rectifying this situation.

We have decided to run a poll among our readers with  MS  to try to find out how many lesions on your brain and spines have so far been discovered.

If you have anything more you would like to share about your lesions which you think will be of use to other people with multiple sclerosis please use the comments box below,

Many thanks in advance.

 


 

Would you consider (or have) a service dog to help you you or your loved ones medical condition? Take our poll

Service dogs
Service dogs

When I was growing up in the 70s there was only really one kind of service dog in the UK.  These were guide dogs for the blind or as they are called in America and other places “seeing eye dogs”.

Since then animals are used in a number of different areas to provide help and support for humans with such conditions as diabetes, multiple sclerosis and autism.

So we are very interested in finding out who has or does not have a service dog.  It would be great if you could share your views in our poll below.

Do feel free to use the comment boxes to share your stories about using services box.  Please feel free to post any photos as well!

Thanks in advance



 

What do you think causes Multiple Sclerosis? Have your say at our poll!


Multiple Sclerosis
Multiple Sclerosis
Over the years there have been quite a number of explanations for the causes of multiple sclerosis (MS).

Obviously the jury is still out as far as the medical profession is concerned.  But we are much more interested in what people in the multiple sclerosis community think.

So when have decided to run a new poll to find out what you think.

Feel free to use the comments box below to share your ideas or just take the poll below.

Many thanks in advance.

 



Multiple Sclerosis Flare-Ups. What is a MS flare-up? What is your experience of a MS relapse? Please take part in our research and discussion blog!

Multiple Sclerosis Flare-Ups
Multiple Sclerosis Flare-Ups

I’ve been writing about and researching the stories of people with multiple sclerosis for nearly a decade.  In that time I’ve learnt that one of the really big issues is a multiple sclerosis flare-up.  Something which rightly concerns all of us in the MS community.

The aim of this blog is to allow our readers to share their experiences of an MS flare-up.  In particular we are really interested in how you dealt with the flare and what you do to try and prevent another MS flare-up occurring.

Of course flare-ups are a particularly big issue for people with relapsing remitting multiple sclerosis (RRMS).  Indeed the inclusion of relapsing in the name gives the game away somewhat!  It can also be called an exacerbation (which is a bit of an understatement) or simply an attack.

A MS flare up is defined as the appearance of a new symptom or the re-appearance of older symptoms.  This could involve an increase in fatigue, optic neuritis (http://patienttalk.org/?p=312), balancing problems or increased pain.

Timing is an important issue with a flare up.  Technically the symptoms must last for longer than 24 hours and be thirty days after your last exacerbation.  However sometimes the replace can last much longer – months in some cases.

It has been suggested that MS attacks can be triggered by infections or stress.  However research is still on going in this area.

Treatments are typically steroid based attempting to lower the immune system to prevent it from attacking the body.

As we said at the start of the blog we are particularly interested in your experience of MS flare ups.  It would be great if you could use the comments box below to share your experiences.  You may well wish to think about the following questions when formulating your answers:-

a)      Please can you describe your last replace?

b)      How long did it last?

c)       Do you know what triggered the exacerbation?

d)      How did you treat it and how successful was that treatment?

e)      How do you try and prevent a flare up occurring?

Obviously these are just guidelines so please feel free to add anything you think will be of interest to other readers.

Many thanks in advance.