International FND Sleep Study

[FND_]

Be part of the FND change. Learn how you can participate in research.

fndhope.org/fnd-sleep-study/

[Rachh8]

I have completed the questionnaire but some of the questions were quite difficult to answer. My consultant thinks there might be a separate sleep disorder now to my FND as one exists when the other one is in remission. Also there seems to be a connection with me between gut bacteria and my sleep and general health which is a new area of Investigation. Taking pre or probiotics makes me worse but a good healthy diet like a palaeolithic diet seems to help and lifestyle changes. There's nowhere in the questionnaire that you can add more comments which would be helpful like this and some of your questions need an option of "occasionally" so I've had to answer nothing at all if it's not been several days. Forgive me but I also felt that some of the questions were a bit leading. I hope this feedback helps it's not meant to be critical but constructive & thanks for asking/caring. I've had terrible sleep problems for a number of years (5+) and I've seen more than 15 specialists. Happy to help with things like this that help solutions. CBT or hygiene has not really helped me at all over the years as for me there is a physiological cause. I've seen many psychiatric type specialists as well.

[Dave_1 in reply to Rachh8]

Ask for a PROPER SLEEP STUDY. Electrodes on head and breathing oxygen levels monitored etc when asleep.

Good luck

[Rachh8 in reply to Dave_1]

Already had one Dave sadly

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope in reply to Rachh8]

Thank you for the feedback. This was a brief initial survey that will hopefully lead to a larger study, so your comment is helpful. Thank you for taking the time to participate.

[Dave_1]

I am part of a small working group based in the Royal Victoria Hospital, Belfast. We ALL have sleep issues. Myself had sleep studies carried out which confirmed REM sleep disorder, hence the chronic fatigue.

This is a brilliant initiative. We spend a third of our lives asleep and know virtually nothing of the role it plays.

I will be making contact with study and encourage all those already diagnosed to do the same.

Take care

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope in reply to Dave_1]

We would be very interested if you have any more feedback concerning the sleep studies you were part of. If you have any more information or a contact person at Royal Victoria Hospital you wouldn't mind sharing would you please forward it to [e-mail]

Thank you

[Dave_1 in reply to FND_]

Sorry for delay, I will ask the group at next meeting as I must respect their confidentiality and opinions. It is possible the the Doctor concerned will contact the Doctor running the project directly.

Cheers

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope in reply to Dave_1]

Please ask that they contact Bridget at [e-mail] if they would be willling to discuss sleep and FND.

[Dave_1 in reply to FND_]

Hi Bridget, I spoke to the Doctor concerned and he has agreed to contact the Doctor running the study directly.