Guest guest Posted May 26, 2012 Report Share Posted May 26, 2012 Hi Kathleen, I've had a lot of sleep related problems since my accident. I had trouble getting to sleep (not because things were going round in my head, or anything like that), it was more discomfort, restless legs, tingling, numbness and pain that stopped me. Then I'd wake up in agony every 2-3 hours. I dreaded going to sleep but I knew I had to! Sleeping sitting up helped but the best thing so far has been the Philadelphia collar, this helped me to get more comfortable, better quality sleep and for longer, often sleeping 5 hours solid, which was unheard of before that. However, I've had the collar on 24/7 now for almost 5 years and my sleep quality has very slowly diminished, as I've got older but I'm still much much better than I was without the collar. I'm best waiting until my eyes are dropping before I go to bed, then I know I'll get straight off and not have to endure too much discomfort. Regards Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2012 Report Share Posted May 26, 2012 I had " unobstructed " apnea before decompression, but they did not call it central. Post-decompression sleep study shows an odd all night pattern of about to fall into deep sleep then I pop back out/awake. Last year a friend recommended a book " end fatigue " something some thing. I tried the sleep vitamin combination they recommend, and it works. Was able to stop lunesta but still have a few other things at night I take that help with other stuff. Some nightts are better than others. Hanna Sent from my phone. Please excse typos and short messages. NCC/Sleeping problems Hi Everybody, Sleeping, and memory problems have been an issue with me. I stopped sleeping my first night after my first decompression in 1990. I wish someone would do research for us. I know many of us suffer from insomnia. I've taken Ambien since it first came out. I think it is causing my really bad memory problems. Since my EEG my primary has started to wean me off muscle relaxants. I'm half way there. I'll suggest cutting me off Ambien next. I know if I don't take it, I don't sleep. I'd rather do that than be the person I am now. I have more bad days than good when it comes to my memory. I'd say I have bad days 3/4 of the time. I've started to keep a journal, and I was shocked at how many bad days I have. Who else has insomnia? I used to talk with a friend in Alaska that had insomnia, but like others on the list, he isn't around anymore. We'd talk in the middle of the night when we couldn't sleep. I look forward to tomorrow, Jeff and I will try to kayak, I hope I remember it! I wish all a calm peaceful night. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2012 Report Share Posted May 27, 2012 Ariana (13) has had insomnia/sleep problems since she was around 4. She just stopped sleeping. We used Melatonin for years, and then that stopped working. A few years ago she was started on Neurontin to help with dizziness and insomnia. It helped a lot for a while. She still takes it, but it doesn't do much. She had her decompression and fusion almost exactly 6 months ago. It did not help the sleep problems, and now she has memory deficits that she never experienced before. She is an exceptionally bright young lady. She's been acting since she was four, but about four months after decompression, she auditioned for a performing arts magnet high school and was devastated because she couldn't memorize a 1-2 minute monologue. (She told the director the situation and read the parts she couldn't remember and still got accepted). The memory issues are very troubling to her now. (She's had ADHD her whole life so is always distractable, but this is different). I wish there were answers, but there don't seem to be. Beth, Ari's mom Sent from my iPhone > > > Who else has insomnia? I used to talk with a friend in Alaska that had > insomnia, but like others on the list, he isn't around anymore. We'd talk in > the middle of the night when we couldn't sleep. > > I wish all a calm peaceful night. > Kathleen > Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed > with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, > surgery for everything but EDS since 1998. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2012 Report Share Posted May 28, 2012 I had very bad insomnia. It still is not unusual for it to take me an hour to go to sleep but that is a whole lot better than before! There was nothing I could treat it with prior to my decompression. The only thing that helped sometimes was coffee right before bed. I think it must have relieved my pain just enough that I could fall asleep.... After surgery I would take a large dose of a good quality calcium (New Chapter's CalMag was the only one that would work for me)and drink a cup of chamomile tea. Brew two chamomile tea bags in one mug of water for up at least 15 minutes and up to an hour. This makes a pretty strong tea and works very well for me. Also, drinking a glass of wine relaxes the muscles and helps with sleep. I generally have a glass once a week and it's generally the best night of sleep I get! Hope that helps you some. Blessings, Cortney > > Hi Everybody, > > Sleeping, and memory problems have been an issue with me. I stopped sleeping > my first night after my first decompression in 1990. I wish someone would do > research for us. I know many of us suffer from insomnia. I've taken Ambien > since it first came out. I think it is causing my really bad memory > problems. > > Since my EEG my primary has started to wean me off muscle relaxants. I'm > half way there. I'll suggest cutting me off Ambien next. I know if I don't > take it, I don't sleep. I'd rather do that than be the person I am now. I > have more bad days than good when it comes to my memory. I'd say I have bad > days 3/4 of the time. I've started to keep a journal, and I was shocked at > how many bad days I have. > > Who else has insomnia? I used to talk with a friend in Alaska that had > insomnia, but like others on the list, he isn't around anymore. We'd talk in > the middle of the night when we couldn't sleep. > > I look forward to tomorrow, Jeff and I will try to kayak, I hope I remember > it! > > I wish all a calm peaceful night. > Kathleen > Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed > with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, > surgery for everything but EDS since 1998. > > http://chiariconnectioninternational.com/ > > > > > Quote Link to comment Share on other sites More sharing options...
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