I have just been working on a new batch of xyrem appeals and I keep asking myself the same question over and over again. Do the drugs prescribed for cataplexy work at all? We have a trustee who swears that they don't and point's to the Cochrane report, an independant medical body that verifies this view. At last years conference Dr Mignot suggested that they didn't work well all the time for all the people and this was sort of agreed to by Dr Shneerson.

It's just that I see these great long lists of medication given to people and the only thing that really seems to work for cataplexy, as in almost cures it, is xyrem. Now, if that is the case, isn't the medical profession wasting a lot of money on drugs that don't work?

I mean, it must work for some people! Where are you? Tell your story; I really, really want to hear from some people who have found the medication prescribed to them for cataplexy works.

I have been using Sodium Oxybate (Xyrem) now since March(ish) 2009 and I can confirm that, for me, it definitely provides a massive improvement upon the frequency and severity of Cataplectic events. I would like to tell you it eliminates them entirely but every now and then I experience small, short lived events, mainly late in the evenings or when I’m feeling particularly tired. The current dosage I’m on, for those interested, is 3g (6ml) twice daily.

Initially I was put on Venlafaxine but due to complications (Insomnia and blurred vision) it was agreed that the Sodium Oxybate drug was the best one to use. The good thing about using Sodium Oxybate is that it also helps me to keep to a normal sleep/awake routine (when used in conjunction with Modafinil). It’s not often now that I need to have a power nap during the day, whereas pre Xyrem I needed one or two 20 minute power naps daily to keep me going.

I am fully aware of the cost of the drug but in the same way as narconic, I feel it’s worth every penny as it enables me to live a much more normal life, one in which I can get angry, laugh, etc with little worry of an Cataplectic event.

Hi John

When i was initially diagnosed i opted not to take any treatment for my cataplexy believing that it probably wouldn't get any worse. Unfortunately it did and i was prescribed 37.5mg velaflaxin which was increased to 75mg prolonged release after a few months.

This seemed to control my cataplexy better for a while but i hated the side effects - severe sweating and a noticable impact on my libido (i also felt they affected my thinking). So when the cataplexy worsened again i was pleased to be offered Xyrem and questioned my consultant about when he thought it would be safe to stop taking the venlaflaxin - only then was i made aware of the probability of 'rebound'.

Unfortunately when i inadvertently missed a dose i developed status cataplecticus and was admitted to hospital whist in this state it affected my heart and my blood oxygen saturation levels (fortunately with no long term effects).

I have been taking it now for almost 4 years and have to take it in a very timely manner or the cataplexy starts (on a good day i have an hour or so grace...)

I asked around and surfed the internet and discovered that it is almost impossible to gradually reduced the dosage of velaflaxin when taking the 75mg prolonged release - the tablets can not be divided as it affects the release, and the 37.5mg tablets are not prolonged release and so initial the dosage released into the blood stream is actually greater than the 75mg!

I did find one person (not with narc & cataplexy) who suffered withdrawel syndrome and had succesfully reduced their dosage by switching to fluoxitine (?) and gradually reducing the dosage, a medic friend of mine has suggested citalopram as it comes in liquid form and so the dosage reduction can be much slower. I don't know if a switch to an alternative drug would keep my cataplexy ay bay I keep mentioning it to my sleep consultant but he is more interested in controlling my symptoms than coming off a drug i hate taking. But i do think that most of my cataplexy now is caused by the venloflaxin rebound and not my condition.

One day when i'm feeling strong enough i'll push it again... meanwhile i try not to get angry at why i was prescibed this horrible drug without being told of the risks and when the Lancet in 2007 stated

'Studies are in progress in our department to clarify the mechanism behind these observations, but, in the meantime, we warn against the possible serious risks of switching patients with cataplexy from immediate-release to extended-release venlafaxine formulations'

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2807%2960523-6/fulltext

would be interesting to hear if anyone else has experienced this catch 22 and what they have done about it.