My husband is 4 months post a major ischemic stroke (left side). He lost all movement in the right arm/hand, leg/foot and had severe swallowing difficulties. He just returned home after a 3 month plus rehab stay. He can now walk with a hemi-walker, his swallowing issues are completely resolved, and there is some limited movement back in the arm/hand.
Here's the issue: He suffers from severe pain in the affected side. He has been placed on Neurontin for this but this doesn't seem to offer much in the way of relief. This pain is tolerable during the day but at bedtime, it prevents him from sleeping at all. He hasn't had a true night's sleep since being home for the past 2 weeks. Instead, he naps during the morning and early afternoon hours. I've tried almost everything I can to help him obtain relief--his doctor placed him on Ultram in addition to the Neurontin but again--no relief.
Has anyone else experienced this? If so, can anyone give me an idea of how long this might continue and if there is any other recourse to help with the pain issues? He is doing so well with recovery in every other aspect but this is becoming a huge deal because it's affecting his overall mental health.
Post stroke pain is not understood all that well but from what I read, is probably the result of the brain injury messing up signals and making the nervous system detect pain where there shouldn't be any. Traditional pain killers seem to have no effect. For some patients it will clear up on it's own.
Go to Google and type in "Post stroke pain" without the quotation marks. The 2rd result down - "Pain Clinic - Nerve Pain - Central post stroke pain " has information that might interest you.
I hope your poor husband finds some relief soon!
The Following User Says Thank You to Chloe1252 For This Useful Post: dittokiwi (01-31-2011)
Hello dittokiwi and welcome,
I am sorry about your husband's stroke and I can see your concern which is understandable. I would like to give you my experience on my pain since my stroke.
First of all everyone's stroke is different and there is no rhyme or reason for a person's effects that happen after a stroke, but everyone that has had a stroke agree that "phantom" pains can happen to some people after a stroke. Asking a doctor does not help a lot of times, because as my doctor told me "a stroke is a mystery." A lot of my stroke recovery experience was trial and error and what works for me, and a lot of help from friends at this forum.
First understand that your husband is very young in his stroke recovery and he does sound going extremely well for 4 months since. I am glad his swallowing problems have gone away; I had that problem too and know how hard that is to deal with and mine too went away about 4 months so he looks on schedule (if there is such a thing )
As far as his pain, I also had that problem, especially trying to sleep at night in bed. I had a left shoulder pain that I could not sleep on and that is the side a usually sleep on. I never had a good nights sleep for over 6 months due to the pain and I also had nightmares that I never had before. All I can say is that the pain went away slowly but surely, as long with the nightmares. I am not sure how long it took, but it was a long time. The most important thing now is that he gets as much sleep as he needs. If he can't sleep at night, but sleeps in the day, let him sleep. That is the most important thing for his stroke recovery. Our own brains re-wire itself to get back to normal as it can and sleep is when all of these things happen.
For me, the pain eventually went away. I hope that is the case with your husband. I just want to let you both to know that there is no easy answer, but it does get better a little bit everyday. It may not seem like it but everyday is progress. I could not read or write after my stroke and I thought my life was gone, but it came back slowly. There is now way I could have written this 12 months ago, but I can now, so our hope gets better everyday. Hang in there I think your husband's pain will go away in time.
Last edited by Positive Cynic; 01-31-2011 at 09:05 AM.
The Following User Says Thank You to Positive Cynic For This Useful Post: dittokiwi (01-31-2011)
Mine started about a year after the actual stroke, and - fortunately - isn't that bad. Unlike a lot of survivors, I can sleep on the pain side, in fact it is more comforting to me if I do so. (Go figure!! )
There are entire websites that have support for the pain, (AKA "Thalamic Pain") and from what I gather, a lot of pain medication doesn't seem to work.
Know that we're here for you and your husband.
__________________ Subarachnoid Hemorrhage (SAH) 2/21/1996 Age 36
Life isn't about how to survive the storm, but how to dance in the rain.
Last edited by sue984; 02-22-2011 at 03:38 PM.
i had my stroke in 2003 still suffer from pain today my doctor prescribed cocodamol 30/500 hope this helps i sometimes use extra pillows for comfort i find i get hot due to my blood pressure up and down try a table top desk fan to cool down its relaxing i used to like spraying lavender and camomile oil on pillow before best to relax my body put pillows to support painful areas i hope my suggestions help let me know please all my best wishes in your husbands recoveryxxxxx
Hi Dittokiwi, and with the others, I welcome you to this forum.
I have not endured the pain you are speaking of following my strokes, but I do sympathize greatly. I just wanted to offer my support of the good work you are doing for you husband. We understand how difficult this can be on loved ones like yourself, and anything we can do to help we offer gladly.
We are here day and night, so as time passes, and you find other issues you would like to speak about, please feel free to do so. That is why we are here, knowing how difficult these earlier months of recovery can be.
I had a stroke back in 2003. I never suffered any pain, but I used to wake up gasping, like I couldn't breathe. It went away with time. I never did take any medication for it. It was probably very scary for my wife. I wish had the solution for you, but I don't. Sorry!
My husband suffered a stoke in Nov 2010. He had the same pains you are describing for months afterward. He still suffers from the pain mostly as you say at night BUT it has gotten better. Tell your husband it will get better over time. How much time..I wish I had an answer for that but everyone is different.
What seems to help my husband is doing some therapy and massaging the arm and shoulder before bed. I think it helps loosen up the muscles.
If you have gone to therapy with him or can go with him, they can show you some exercises and massage that might help.
He also finds that a heating pad on the shoulder provides some relief.
My husband still suffers from sometimes severe pain in his head on the left side where they performed a craniotomy. Sneezing or coughing is horrible. I was just about to ask if others here have had this problem and if so how long does it usually last and is there anything that may help relieve the pain?
I wish you and your husband the very best of luck. I know how had it is and what you are going through. Hang in there.
The following user gives a hug of support to kel61: nightingale00 (06-22-2011)
My mum lost alot of movement 1 year ago from a stroke and as some feeling and function has started to return she has had pain, jumping limbs, spasms, cramps. The brain is trying to heal itself, and atleast the receptors for those areas are awake enough to know something is wrong, its probly trying to figure out what the heck is going on..Alot of its signals will be jumbled and may be getting interpreted as pain...it is actually good as it means something is still switched on and connected, and WORKING..that means hope...my mum gets very excited when she has the pain, she hates it, but at least its not numb anymore, she can feel again, and believes the next step will be to move. and slowly she is.. try massage and some different excercises, does he pedal on a machine, slowly, it help to relax the muscles and stretches the limbs. also try some water therapy....
The following user gives a hug of support to nightingale00: sjb (06-13-2011)
The Following User Says Thank You to nightingale00 For This Useful Post: sjb (06-13-2011)