Hello All,

I am here in search of help for my husband. He had a massive stroke January 1st of this year, he has survived two brain surgeries as well as the swine flu/double bi-lateral pneuminia (broken glass syndrome) that caused the stroke in the first place. Some would say he is lucky to be alive, he would say the opposite.

He is learning to walk and finally starting t get some movement in his left arm (very little but its a start). However his rehab has been compromised by severe post stroke pain. It keeps him from daily PT, most days he cant get out of bed the pain is so bad. This is a man that had not missed a day of work in 20 years, that wouldn't even take a Tylenol for a headache. He has without a doubt the highest pain tolerance I have ever seen in a human being. So when he is crying that it hurts, I know he is not BS'ing.

We have been going to pain management for 4 months and still his pain level is at or over a 10 at all times. He cant sleep, he cant go out (as the summer heat makes it worse), he wishes he were dead every second of the day all because the pain is so bad. If we could get this pain in control, he would have a fighting chance. I am sure he would be much further along if only this pain could be managed. He would be happy if the pain was even dulled to a tolerable level.

He is currently taking 2600mg of Gabapentin, 7.5 Norco (3x a day), 10mg Baclofen 2 times a day, 15mg of Morphine twice a day as well as antidepressants and vitamins. Nothing is working, not even a little. Medicinal Marijuana helps take the edge off and the baclofen helps with some of the spasticity, but for the most part he is at a level 10 pain round the clock. Has anyone experienced this issue and if so did you find relief from the pain and with what? I am desperate for help, his suffering has to end. I am terrified I am going to wake up one morning and find that he has killed himself. I fear he is heading in that direction and I cant seem to get anywhere with this PM doc. He is so arrogant. I know if the pain can be eased he will get better.

Thank you and I look forward to hearing from you soon.

All the Best
AJ

My pain is not nearly as severe from my stroke, but if your husband's pain is a 10 all the time, some hospitals are offering deep brain stimulation as a treatment. I know Very Little about the procedure, I just know about it and decided my pain wasn't bad enough to warrant it. Feel free to research it.

I am sorry to hear about your husband. I can only share my experience with my dad. There is some pain phenomenon called Thalamic pain which can be caused by a stroke. My dad had a big stroke 14 years ago. His pain eventually subsided it just took a long time. He also made a full recovery. His right side is weaker than his left but he has learned to compensate. You would never know he had his stroke if he did not tell anyone. He went to a rehab facility to basically learn to walk again. The pain killers they gave him were centrally acting to quiet his brain down. I believe he was put on seizure meds, klonopin and had a morphine pump. My dad had a pain specialist manage him. It was not his PCP. This type of pain is beyond PCP. I strongly urge you to demand a referral to a pain clinic ASAP. They are more adapt to dealing with intolerable pain.

I am sorry I can not be of any more help but I just wanted to assure you that he made a Full recovery so there is always hope. Back when it happened he was very upset and cried a lot but that was part of the symptoms is stroke (emotional liability).That too subsided.

I wish you the best of luck.

Aussie

Welcome EarlsWife.

Hi AJ,

Welcome to the NeuroTalk Support Groups.

I just wanted to leave a couple of sites regarding central pain syndrome - post stroke pain, that Aussie mentioned above (sorry your father went through this too, Aussie).

Central Pain Syndrome
NINDS Central Pain Syndrome

Also wanted to let you know there is a Stroke Forum here at NeuroTalk. It is a very quiet forum, but you may find information in the older posts by using the Search feature.

--set up originally by people who have experienced this:

http://centralpain.com

And, there is the Central Pain Syndrome Foundation, raising fund for more research into prevention and relief:

http://centralpainsyndromefoundation.com/