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Laying down triggers pain

Posted , 4 users are following.

lisa89015
lisa89015

I have not officially been diagnosed with TN, but does seem to be the culprit. Saw doc and put on carbamzepine on a low dose. Incredible shooting pain across right side of face/head seems to happen most when I lay down. Can't get any good sleep. Does anyone else have this problem? Have tried several positions with no relief... only seems to be getting worse, but they won't up my meds yet. Lack of sleep is affecting me as much as pain and meds don't seem to be helping at all, altough only been on them for a week.

0 likes, 3 replies

3 Replies

  • eddie13
    eddie13 lisa89015

    Posted

    Lisa,

    Sleep trigger sounds familiar with early stage TN. 4 x 200 mg daily carbamazepine works for me. Is your doc a neurologist ? If not, find one and explain your situation.

    eddie13

  • Valkyrie
    Valkyrie lisa89015

    Posted

    Greetings fellow Tn warrior, (ha,ha)

    Feels like a daily battle sometimes. You did not say how low a dose you mean. Usual starting dose is 200mg Tegretol twice a day which a Neurologist would then increase as necessary but often at least a week between. As mentioned by eddie13, if you are not seeing a neurologist, you need one. As to your question about laying down, oddly, at first that was the only way to stop my pain but now, I am often like you and cannot do that at all. However, since changing from Tegretol XR to Tegretol CR, this has started to be much better and I only need to sit up in the dark for about half an hour with the lights off after evening dose and then I can lie down and sleep. (I take my evening dose at 9pm)

     

  • angiegirl
    angiegirl lisa89015

    Posted

    I haven't  layed down for about, well years due to TN and a condition called SUNA.  As you lay or as you start to sit up from laying down I would get an almighty not strike. I also do not lay on my right side or turn my head to the right when I am propped up on pillows. I sit up with 4pillows or arrange them around me so as I am well elevated, even if I am not in pain or having an erisode.   My husband is very understanding.   So I have very poor quality of sleep, I don't normally go of to sleep much before 2am.  So whatever works for you do it and let others know what works.   Take Care
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