Just wondering if anyone has any advice regarding post op insomnia. I've been doing really well since my MVD 2 weeks ago, but having cut back considerably on my medications until I see the NS in about a month's time I now find I'm having great difficulty getting some sleep at night. This is not due to pain - the TN pain seems to be gone (although I can't quite believe that yet!!) Last night I stayed up till 1.30 am, struggled to get to sleep for well over an hour, got up and tried a hot drink and a book and didn't get to sleep till 5 am. I only got 3 hours and then was up and restless again. I don't sleep through the day either, but am conscious that I do need some rest to recover properly. I wasn't good at sleeping before I got the TN and am worried that I'm going back the same way and won't get my proper rest again.
Also, my scar is healing well, all except the very top part which is not quite as neat as the rest. when they removed the staples at 7 days the nurse covered that area with steristrips as it wasn't healing quite as fast, but now they've come off and I find the very top of the scar is 'gaping slightly'. It's healed but has left this wider space, which is just where my glasses rest and I find is now uncomfortable when I lay down. It's not bad but it's not comfortable either. Doctor saw it yesterday but didn;t comment. I think I might go back and see him again next week to check it out.
On the plus side, the TN pain seems to be gone!! I can eat, drink, talk, smile, clean my teeth and even go outside now. I walked 2 miles on my own yesterday and don't even need painkillers now!! Just building up my strength and getting ready to go back to work in the next few weeks. I'd be grateful for any advice, thanks. Suzy.
I had a terrible time for about a week trying to sleep when I was tapering off the Neurontin following my MVD. When I got down to 300 mg a day and then when I stopped completely, I felt as though my skin was crawling and my brain could not stop obsessing. I would lie awake in bed for hours. Eventually, I could sleep but it was a rough week. For the next month, I had no trouble sleeping at night and taking a nap
during the day. Now at a little over 2 months post MVD, I sleep better than I have in a long time. Good luck.
I cannot comment on the insomnia, but do want to tell you how great it is that your TN pain is gone. I had my MVD in Oct. and continue to enjoy life pain free, also.
I am 4.5 weeks post-MVD now. I have suffered insomnia for the last 14 years, and found the only positive when I was on 1000mg Tegretol and 600mg Neurontin just before my MVD, that for the first time in 14 years, I was sleeping (drugged-up coma almost, but at least I was sleeping!!). I found that for the first couple of weeks after my MVD, I wasn't sleeping well, a mixture of pain and discomfort if I happened to roll onto my right side, and probably a drop in meds (now on 600mg Tegretol and no Neurontin). I go to my NS on Thursday and he will start to decrease my Tegretol - this worries me in case pain comes back (I guess we all obsess about this possibility), but also I am worried about the sleeplessness. I am assuming this is like our bodies withdrawing off a pretty strong medication, one which if you've been on a while, your system has relied on to help the sleepiness it causes to get some sleep! Maybe just go with, keep yourself moving, which you are doing ..... 2 miles walk!! Good for you! I should start walking this week too - I am back to work in a week so need to get myself moving. I hope to get the all clear from the NS also to start bike riding again - I've found my legs have suffered a lot of muscle wastage from just lying around all the time.
Good to hear you're doing well (apart from the lack of sleep). Even if you're not sleeping, it does you good to have at least a rest during the day!
I didn’t have trouble sleeping the first three weeks after surgery. My problem started when they began weaning off the three meds i was still on for TN. After I came off the last med and was totally med free, I couldn’t sleep at all. I finally went to my regular doctor and got sleeping pills for two weeks. I stopped taking them because I didn’t want to get addicted to them. I struggled with the sleeping problem for the first year after surgery. Then it seemed like it started getting better. It has been since may 2009 since I had my MVD and I feel completely normal now.
I had this too but I had a terrible PSTD situation after I returned from the hospital…even though I felt better mentally I still had after-effects (apparently still working through some
After week 5, i went to a psychiatrist who adjusted my anxiety/sleep meds and its been better I’m sleeping a full 8-9 hrs a night now (6.5 weeks now)
NOTE: I had 2 procedures done…the standard MVD as well as a line-of-sight Glycerol Injection…not sure which is the culprit but I have a severe case of numbness which is making me a bit whacko…
May the Universe help you find Peace of Mind and the rest you need and deserve
PS congrats to the rest of the MVD Alumni!!! Woot woot!! Lets be sure to help all those who continue to suffer
As you know I had my MVD in Oct and am still suffering from insomnia, not sure what it's all about but I haven't mentioned this to anyone thinking that it was me and my age ha ha! i did reduce my meds for a while but have had to put them back up again and haven't had any change to my sleep pattern! Really pleased to hear how well you are doing after your MVD though and bet you're looking forward to getting back to work......just don't rush back too soon though! : ) x
Thanks Mimi, guess I'll just have to be patient and hope the sleeping improves. I certainly know wha tyou mean about your skin crawling, and my right eye is constantly itching and watering a little too (not very pleasant!) I'm no longer on any medication at all now, including any painkillers, which is absolutely incredible. I have another couple of weeks or so to try and get myself ready for work again, which I'm sure will be a challenge. I haven't received a date yet to go back and see my NS but I guess it should be within a month or so now. Hope you're doing well, Suzy.
MimiK said:
I had a terrible time for about a week trying to sleep when I was tapering off the Neurontin following my MVD. When I got down to 300 mg a day and then when I stopped completely, I felt as though my skin was crawling and my brain could not stop obsessing. I would lie awake in bed for hours. Eventually, I could sleep but it was a rough week. For the next month, I had no trouble sleeping at night and taking a nap during the day. Now at a little over 2 months post MVD, I sleep better than I have in a long time. Good luck.
Thanks for your kind words Dixie. I'm doing well, just coming to terms with the insomnia and numbness I have at present, but at least the dreaded pain is gone!! Hope you're doing well too. Suzy
Dixie said:
I cannot comment on the insomnia, but do want to tell you how great it is that your TN pain is gone. I had my MVD in Oct. and continue to enjoy life pain free, also.
Hi Gen, thanks for your reply. Hope you managed to get back on your bike by now, and are continuing to improve. Are you back at work now? I've been given a date of 8th April to return to work, so am trying to build up some stamina too. Please let us know how your return to work is going. Best wishes,Suzy
Gen said:
Hi Suzy,
I am 4.5 weeks post-MVD now. I have suffered insomnia for the last 14 years, and found the only positive when I was on 1000mg Tegretol and 600mg Neurontin just before my MVD, that for the first time in 14 years, I was sleeping (drugged-up coma almost, but at least I was sleeping!!). I found that for the first couple of weeks after my MVD, I wasn't sleeping well, a mixture of pain and discomfort if I happened to roll onto my right side, and probably a drop in meds (now on 600mg Tegretol and no Neurontin). I go to my NS on Thursday and he will start to decrease my Tegretol - this worries me in case pain comes back (I guess we all obsess about this possibility), but also I am worried about the sleeplessness. I am assuming this is like our bodies withdrawing off a pretty strong medication, one which if you've been on a while, your system has relied on to help the sleepiness it causes to get some sleep! Maybe just go with, keep yourself moving, which you are doing ..... 2 miles walk!! Good for you! I should start walking this week too - I am back to work in a week so need to get myself moving. I hope to get the all clear from the NS also to start bike riding again - I've found my legs have suffered a lot of muscle wastage from just lying around all the time.
Good to hear you're doing well (apart from the lack of sleep). Even if you're not sleeping, it does you good to have at least a rest during the day!
How amazing that your pain has been gone for so long Connie!! Long may it continue! I'm coming to terms with the insomnia a bit now, I just have to take each night as it comes I guess and try not to get stressed out about it. I'm doing really well and should be back at work in a week or two. Thanks for your reply, Suzy
Connie said:
I didn't have trouble sleeping the first three weeks after surgery. My problem started when they began weaning off the three meds i was still on for TN. After I came off the last med and was totally med free, I couldn't sleep at all. I finally went to my regular doctor and got sleeping pills for two weeks. I stopped taking them because I didn't want to get addicted to them. I struggled with the sleeping problem for the first year after surgery. Then it seemed like it started getting better. It has been since may 2009 since I had my MVD and I feel completely normal now.
Thanks Albee. Slowly coming to terms with the changes and improvements (although still very hard to believe the pain is really gone!!) Trying to relax more about sleeping and take each night as it comes - no choice really!! Hope you're well,Suzy
Albee said:
I had this too but I had a terrible PSTD situation after I returned from the hospital...even though I felt better mentally I still had after-effects (apparently still working through some :)
After week 5, i went to a psychiatrist who adjusted my anxiety/sleep meds and its been better I'm sleeping a full 8-9 hrs a night now (6.5 weeks now)
NOTE: I had 2 procedures done..the standard MVD as well as a line-of-sight Glycerol Injection...not sure which is the culprit but I have a severe case of numbness which is making me a bit whacko..
May the Universe help you find Peace of Mind and the rest you need and deserve
PS congrats to the rest of the MVD Alumni!!! Woot woot!! Lets be sure to help all those who continue to suffer
Many thanks Mandy. I'm doing well and trying to build up my strength again ready for work. Hope you're OK. I'll be in touch next week if that's OK. Suzy
Mandy said:
Hi Suzy,
As you know I had my MVD in Oct and am still suffering from insomnia, not sure what it's all about but I haven't mentioned this to anyone thinking that it was me and my age ha ha! i did reduce my meds for a while but have had to put them back up again and haven't had any change to my sleep pattern! Really pleased to hear how well you are doing after your MVD though and bet you're looking forward to getting back to work......just don't rush back too soon though! : ) x
Today was my second week back at work. I worked my 4 days last week - exhausting!!! I only work 6 hours a day, but by 4 hours into the day, I was so tired. Today was a little better, but I'm still not happy to hear the alarm go off in the morning!! As I'm still reducing the meds (by 100mg per week - I'm now down to 400mg of Tegretol/day), I'm becoming clearer and clearer every day, and able to concentrate which makes me so so happy. I haven't got on the bike for a decent bike ride yet, but that won't be long. I've had a couple of nights of not much sleep, and I'm assuming it's the reduction of meds which is causing that. However, that combined with the exhaustion of working again, is helping me sleep a little better, just very fitful and restless. :-)
suzy1 said:
Hi Gen, thanks for your reply. Hope you managed to get back on your bike by now, and are continuing to improve. Are you back at work now? I've been given a date of 8th April to return to work, so am trying to build up some stamina too. Please let us know how your return to work is going. Best wishes,Suzy
Gen said:
Hi Suzy,
I am 4.5 weeks post-MVD now. I have suffered insomnia for the last 14 years, and found the only positive when I was on 1000mg Tegretol and 600mg Neurontin just before my MVD, that for the first time in 14 years, I was sleeping (drugged-up coma almost, but at least I was sleeping!!). I found that for the first couple of weeks after my MVD, I wasn't sleeping well, a mixture of pain and discomfort if I happened to roll onto my right side, and probably a drop in meds (now on 600mg Tegretol and no Neurontin). I go to my NS on Thursday and he will start to decrease my Tegretol - this worries me in case pain comes back (I guess we all obsess about this possibility), but also I am worried about the sleeplessness. I am assuming this is like our bodies withdrawing off a pretty strong medication, one which if you've been on a while, your system has relied on to help the sleepiness it causes to get some sleep! Maybe just go with, keep yourself moving, which you are doing ..... 2 miles walk!! Good for you! I should start walking this week too - I am back to work in a week so need to get myself moving. I hope to get the all clear from the NS also to start bike riding again - I've found my legs have suffered a lot of muscle wastage from just lying around all the time.
Good to hear you're doing well (apart from the lack of sleep). Even if you're not sleeping, it does you good to have at least a rest during the day!
Well done Gen - it mus tbe a huge hurdle to overcome at first, going back to work, although I'm sure it will get easier for you. I've had to go to the docs today with a very itchy right eye (swollen and red, might be conjunctivitis) so I have to use drops every 2 hours but discovered that even the eyeball has no feeling in it at present!! Can't even feel when the drops go in! Weird. Apparently the eye can also be affected by the operation, but will hopefully improve. My eye tends to tear up quite a lot (both inner and outer corners). I am also still very numb pretty much all over the right side of my head (scalp, forehead, eye, nose, lip, top teeth, lip and tongue, as well as the scar area of course). However, no pain!! and no TN medications or pain relief required!! Brilliant. Hope you continue to improve. Suzy
Gen said:
Hi Suzy,
Today was my second week back at work. I worked my 4 days last week - exhausting!!! I only work 6 hours a day, but by 4 hours into the day, I was so tired. Today was a little better, but I'm still not happy to hear the alarm go off in the morning!! As I'm still reducing the meds (by 100mg per week - I'm now down to 400mg of Tegretol/day), I'm becoming clearer and clearer every day, and able to concentrate which makes me so so happy. I haven't got on the bike for a decent bike ride yet, but that won't be long. I've had a couple of nights of not much sleep, and I'm assuming it's the reduction of meds which is causing that. However, that combined with the exhaustion of working again, is helping me sleep a little better, just very fitful and restless. :-)
suzy1 said:
Hi Gen, thanks for your reply. Hope you managed to get back on your bike by now, and are continuing to improve. Are you back at work now? I've been given a date of 8th April to return to work, so am trying to build up some stamina too. Please let us know how your return to work is going. Best wishes,Suzy
Gen said:
Hi Suzy,
I am 4.5 weeks post-MVD now. I have suffered insomnia for the last 14 years, and found the only positive when I was on 1000mg Tegretol and 600mg Neurontin just before my MVD, that for the first time in 14 years, I was sleeping (drugged-up coma almost, but at least I was sleeping!!). I found that for the first couple of weeks after my MVD, I wasn't sleeping well, a mixture of pain and discomfort if I happened to roll onto my right side, and probably a drop in meds (now on 600mg Tegretol and no Neurontin). I go to my NS on Thursday and he will start to decrease my Tegretol - this worries me in case pain comes back (I guess we all obsess about this possibility), but also I am worried about the sleeplessness. I am assuming this is like our bodies withdrawing off a pretty strong medication, one which if you've been on a while, your system has relied on to help the sleepiness it causes to get some sleep! Maybe just go with, keep yourself moving, which you are doing ..... 2 miles walk!! Good for you! I should start walking this week too - I am back to work in a week so need to get myself moving. I hope to get the all clear from the NS also to start bike riding again - I've found my legs have suffered a lot of muscle wastage from just lying around all the time.
Good to hear you're doing well (apart from the lack of sleep). Even if you're not sleeping, it does you good to have at least a rest during the day!
