Fall asleep any where any time and any place

[Paddy201]

I have CMT 1A, suffer extream fatigue. I sleep most of my day and life away. I want media action for this any suggestions

[cmt_exercise]

Firstly, that is not fatigue, it is excessive daytime sleepiness: en.wikipedia.org/wiki/Exces...

I have CMT 1A and suffer from the same problem. Good news though - there are solutions. You first need to go to a sleep clinic to be monitored and from there they will be able to diagnose you, with solutions such as the same medication they give to treat RLS (may be related).

The whole problem I have is that a lot of CMT consultants are ignoring the numerous studies that have been done showing that fatigue and CMT are not linked, but CMT and excessive sleepiness is, something many sleep consultants are realising due to the volume of CMT patients they are now treating. Fun fact: I actually emailed Karen Butcher, the COO of CMT UK with all the studies proving the link between sleepiness and CMT, and she arrogantly tried to argue why they were all wrong. This is why no one should donate to the charity - it's being run by people who have no interest in the welfare of their donors.

[Funnyfeetbecca in reply to cmt_exercise]

Sadly I agree that lots of things that affect people with CMT1a are not listed on the cmtuk website or will be dismissed as nothing to do with cmt. Things such as sleepiness, hearing loss, enlarged nerve roots in back....this is all scientifically proven in CMT1A yet CMTUK do not publish the documents and tell people their problems aren't CMT related when they are. Its not helpful at all really is it!!! I have pip home visit for first time next week....more fun! I'm actually pretty stressed out and down about it....if i get a rude arrogant person assessing me, I might just ask them to get out of my home and think stuff the benefits. I've battled for years trying to explain what cmt1a is and how it affects me and cmtuk don't help as they dismiss to many things that are scientifically proven. To me this is just odd??? Much more awareness is needed and the correct facts otherwise how will we get the support we need. I am yet to meet anybody professionally who has heard of CMT and I believe its lack of understanding and lack of awareness that makes CMT harder to deal with.

[Tumericmiraclewoman]

I understand

[GrannyMaz]

A sleep study should tell if it's the phrenic nerve affected,, which causes atrophy of the diaphragm, you will need a Bipap if that's the problem, not a Cpap, a Bipap allows you to breathe out against a lower pressure, whereas the Cpap has continuous high pressure..