It's difficult to maintain a bright outlook with this disease. My worst times are also at night but I've discovered that, for me, some of the discomfort can helped by keeping the feet cool (maybe even cold). I've had better results in putting a hot water bottle filled with COLD water between my feet when I go to bed. I don't know why that works but it does for me. It allows me to get to sleep. There are so many causes and symptoms that are related to this disease. As far as I know, nothing has been found that really helps all the permutations and some that cause other problems. I've only tried gabapenten and it didn't work well for me. I've tried to stay away from regular pain medication other than acetomenaphen (spelling may be wrong but you get the idea). I also have arthritis and that seems to kick up when I'm having a bad night's sleep. I have a family member who also has PN and it has affected bladder and hands too so it evidently is a progressive process and not a good one. I sincerely hope a silver bullet is discovered soon and hopefully one that has no side effects and until then, I'm sticking with my cold hot water bottle.

The only other medication known to me to be helpful for some with NP is Lyrica. I have mentioned Ketamine in past postings but I think it is still experimental for Non Surgical pain.

My neurologist has told me to go up from 300 mg Gabapentin twice daily to 300 x 3. Dosage is important.

Cold is helpful for pain and inflammation in early stages.

@mfobrien36 @parus @teacup @johnbishop - I haven't found a solution that works every night. I have a blanket lifter, which is a good start, as touching the sheets or having any weight on my feet hurts. It's so hard to keep nurses and aides from covering my feet in the hospital. Sometimes it helps to wear socks, as they stop the friction from moving my feet, but other times the socks hurt and barefoot it is. Then there's the issue of lying on my side. Sometimes it works to put them on a feather pillow, other times I hang them off the side of the bed.

Usually, I put Lidocaine cream on my feet, and that helps me get to sleep.

For a time I didn't have a blanket lifter, so I wore slippers with a stiff sole.

We get creative, don't we.

Jim

@ujeeniack - I've heard that Lyrica helps a lot of people. Unfortunately, side effects from taking it put me in the hospital, incoherent. Bummer, because it was actually starting to help.

Jim

MAYBE U NEED A LOWER DOSE

@ujeeniack - I was probably on a low sample dose, and I don't really want to go through the nightmare again. I couldn't complete a sentence, lost memory for a time, tachycardic, thought I might have had a stroke. If my wife took me to the ER, you know it was bad. I take morphine sulfate contin now, just stopped Cymbalta, and received a lot of pain relief with the spinal cord stimulator implant. Lidocaine cream helps. I'm a champion sleeper, would get 10+ hours a night every night if I could. I use a BIPAP machine, and several of the meds I take at bedtime are sedating, which could be a problem if I took too much. So, as a rule, pain doesn't keep me from sleeping, though it does wake me up often, telling me to adjust.

Apparently, Gabapentin works for you. I tried it, back toward the beginning of this journey, but no pain relief. Do you take any other meds for neuropathy?

I'm up way past my bedtime, so must say goodbye.

Jim

Lyrica, Savella and Gabapentin turned me into a mega female canine...I was totally unaware of my behavior. Being a solitary person and rarely speaking w/ anyone no one else noticed. One of the employees at the pharmacy did notice and they stapled the severe, rare side effects of the med Gabapentin with my name at the top and even spelled my name wrong. Arrived home threw it on the counter grumbling about how they could not even spell my name right-then I started reading the list. I was horrified!!! Stopped taking the Gabby that day. Also realized that my TV was not talking to me as well. One of the hazards of living alone. My social life is the grocery store-thankful for those whom did notice I was not my usual smiling, singing self.
Some meds can drastically change a person's personality. Comical to tell about, but not funny at the time. Once that had cleared my system I then remembered-thankfully I was not around many people. Doctor's thought it was my age...numnuts as some of them can be!!! I could have been locked up some where! They even knew I was taking this med. Want to know about a med ask a pharmacist as this is their area of expertise...
@ujeeniack Not wanting to frighten you as all people do not have such extreme reactions to these meds. Be sure someone knows you are taking the Lyrica and to notice any changes in your behavior. Hope it does help you.

I'm suffering from Ulnar Neuropathy & Small vessel Brain disease. For the past few days my body rests but brain works. Taking Clonazepam & Elesert which makes me drowsy. Changes in behaviour & personality. Talking during sleep.Which medicine will work to cure my brain changes. Painful walking. Both leg & hand pain.