Health Organization for Pudendal Education

I am had a fall from a bike about 10 years ago and for the 1st year I had sever Coccyx pain but eventually in an Year the pain eased off however at the same time when the pain eased off I started experiencing Sleep Jerks, techincally it is Hypnagogic Jerk and ever since my life has become miserable. I have had real hard time sleeping and pushing life so far, quite recently 6 months ago unaware of the (mild) coccyx pain I rode bicycle and all of sudden my coccyx pain reshoot just like it was day 1. I had difficulty doing my routine and I had to find a solution for this, Fortunately I met a physiotherapist who too my coccyx x-ray and found that coccyx was bent towards right all this while.

Since then he has been practising manipulation and exercise on me. one fine day after 6 months he said to me my coccyx appears fine now but i said him my coccyx still hurt and more below near anus. Later he said this could be pudendal nerve pain, since couple of weeks now I feel my testicles, in and around anus are tingling (used to happen very little last 10 years) at the same time I feel same sensation at left bottom of my brain. Associated to this my Sleep Jerk has increased and I am having hard time sleeping. I do have to mention during the initial period of physiotherapy my sleep Jerk was reduced almost to none.

I need help guys, recently i found when I pull my coccyx i feel a slight pull from left buttock also there is constant fire of nerves above coccyx and feel presence of dangling threads around buttock and thigh muscle very close to testicles.

It is still ok to bear the pain for me however it is impossible to live without sleep. Please, please someone advice.

Did you bump your head when you had the fall? Have you had an MRI of the brain to rule out any brain lesions?

This website has some good suggestions including trying melatonin.

http://mentalhealthdaily.com/2015/05/19 ... ore-sleep/

When I was in the worst stage of PNE I had pelvic nerve shocks that kept me awake at night but I wouldn't say that was the same as hypnagogic jerk. It was more like an electric shock from the sacrum to the pelvic floor that made me jerk. It usually occurred just as I was falling asleep and kept me awake. I used clonazepam and it seemed to help, maybe because it has some anti-seizure properties. Ice was also helpful. Lyrica also has anti-seizure properties and isn't addictive so that might be something to try. I didn't use it because it wasn't available yet back then. I know a patient who used to have 100 seizures a day who is having great success with CBD paste. I know you don't have a diagnosis of seizures but just as a last resort it might be worth trying CBD paste. It does not have the same side effects as marijuana with THC in it. I have no idea if any of this will work for you. Just brainstorming things to try.

All the best,

Violet

Someone else with the sleep twitches! I'm not alone!
I so wish I had an answer for you though... I've always had the hypnic jerks, though they are way bigger than most people's. They even happen when I'm awake, reading before I fall asleep. I don't think they're connected to my PN, but they do make it worse. The only thing that has helped me, is when they get really bad I try to sleep on my stomach. Hang in there!

" I don't think they're connected to my PN, but they do make it worse. "

Yes, they are connected to PN or PGAD because the autonomous nervous system is working in a highly activated way. That's why the symptoms are becoming worse. Most of all these jerks work at night but also at day. If you are reading befor sleep, you are slowly changing into an altered state of conscious and that is the sign for the autonomous nervous system to activate. As I often said, it is a systemic problem. Perhaps you have a look at other symptoms in your body. Pricking in the feet or in the the big toe, vibrations in the back, problems with swallowing. Every part of the body can be involved.

I have hypnic jerks as well, started around the same time I started having insomnia. I get muscle twitches when I'm just laying down awake as well. Ambien has really helped me to get sleep.