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Post stroke central pain

Posted by bestofthebest @bestofthebest, Apr 19 10:51am

I just recently started lamotrigine for all descriptors of pain on my whole left side. My pain is now 50% better and that’s good. . For 10+ years I’ve took lyrica and don’t want to stop it. Savella helped tone down severe hand and foot burning that kept me awake at night. Can the latter be stopped. I want to minimize my meds if I can.

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poststrokepain | @poststrokepain | Apr 23 9:26am

What is the strength of the Lamotrigine are you taking?

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bestofthebest | @bestofthebest | Apr 23 10:30am

I’m so glad you’re interested in it. I have been taking 75mg twice daily (150 daily). I’m going to take 200 daily as of now because shooting pains and burning on movement remains. That makes 100mg, morning and afternoon.
I had to ask for it. I have to check in with the psychologist who I talked to about it. They can prescribe it because they can use it for psy. Conditions. Pain management doesn’t know sh— about post stroke central pain!

Good luck! Q: did you have a stroke?

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1 reply
poststrokepain | @poststrokepain | Apr 23 9:11pm
In reply to @bestofthebest "I’m so glad you’re interested in it. I have been taking 75mg twice daily (150 daily)...." + (show)
@bestofthebest

I’m so glad you’re interested in it. I have been taking 75mg twice daily (150 daily). I’m going to take 200 daily as of now because shooting pains and burning on movement remains. That makes 100mg, morning and afternoon.
I had to ask for it. I have to check in with the psychologist who I talked to about it. They can prescribe it because they can use it for psy. Conditions. Pain management doesn’t know sh— about post stroke central pain!

Good luck! Q: did you have a stroke?

Jump to this post

Yes, 10 years ago. Right side affected. CRPS started about a year after the stroke. It gradually moved ito the right side of my face a couple of years ago. If you can tolerate 200 mg a day, that should keep you very comfortable. I take 25 mg Lamotrigine twice a day. It helps some but I found that when I built up to 100 mg a day it was helping a lot with the pain but was also causing a reaction (itching) so I backed off to the dosage I take now. There was a trial several years ago which showed Lamotrigine to be very effective for CRPS at the 200 mg level. You are lucky that you found out about it. It is off label for CRPS and maybe that is why doctors don't prescribe it. You are right about the pain...most doctors are no help at all. It's like they never heard of it and have no interest in finding out. They just nod sympathetically (sort of) and prescribe gabapentin and a host of others which just knocked me out.

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san72 | @san72 | Apr 24 7:46am

I had a hemorrhagic stroke in my right thalamus 22 years ago! I tried to return to work as a paralegal. I had worked for over 35 years and was 53 years old at the time. I was unable to multitask or do any of tbe work I had done for so many years. Depression set in also. I was in such pain. My dad had a stroke, but no pain. But it was the area of the thalamus my sttoke hit that causes the constant pain. I finally found a physician who diagnosed me with what they then called "Thalamic Pain Syndrome." The pain never goes away. The stroke was on my right side so my left side was in pain constantly. I now am in pain all over!.

I've taken Neurontin for years. It's the only medication thst helps the pain, especially on left side of my face that feels numb, cold, and in which i have other sensations. I also had Scoliosis that progressed so fast I had to have a Fusion from my T3 to my L5-S1.....during testing for the surgery, they found I had a 90% blockage in my right coronary
artery. So I had a stent put in and the Scoliosis surgery was done a few months later.

My pain never stops. I've continued my life because I've had to, but my two neurologists who knew what Central Pain was retired and all the pain clinics, which never helped me anyway have mostly closed. In fact, they gave me so many injections that only.made me worse. Now my primary care doctor has taken over, she didnt want to, but I needed my medications and was desperate. I've been going to her over 25 years....she doesn't know anything about this condition but took over my medications. She knows me and that I've never abused any medication. In fact, I wish I never had to take another pill and have actually been cutting back on them since i wasn't getting the relief i need. I have to go see her every 3 months since I take a very small mg. Pain pill. I take anywhere from 400 to 800 mg. Of Neuuontin, depending on what I do during the day.

My husband had a stroke two years ago and has bladder problems and has a Foley leg catheter that is causing him such pain and he's unable to do the things he once did since the stroke. So, I'm taking care of him now, where he once did the grocery shopping and helped me. Now, I have everything to do. In fact I need to give him his medication now and take mine too. I have Afib and have just started medication for that. I take a muscle relaxer, BP medication and some Supplements. I can't tell I'm getting much relief from anything. I saw where someone was taking Lamotrogine and getting some relief. I think I took that medication years ago, but I tried so many the first 4-5 years, and have just stayed with my regular medications since. I'm wondering if I could try something else in place of some of my medications because caring for my husband has taken a toll on me and i love him but there's much more for me to take care of now, as far as his doctor appointments and he may be having surgery where they will go into his abdomen?, make a small incisionn and place the catheter there.

I am seeing a Neurologist, however, the past two years I've really not seen him much due to being so busy with 911 ER visits with my husband.

I hope those of you suffering in pain are having some low pain days, but I understand the difficulty of those. I just wanted to pop in and see how everyone is doing. I was on here several years ago, but of course, havent had much time. God Bless all of You! Take care!
Sandy

REPLY
1 reply
irishnanny3 | @irishnanny3 | Apr 24 3:44pm
In reply to @san72 "I had a hemorrhagic stroke in my right thalamus 22 years ago! I tried to return..." + (show)
@san72

I had a hemorrhagic stroke in my right thalamus 22 years ago! I tried to return to work as a paralegal. I had worked for over 35 years and was 53 years old at the time. I was unable to multitask or do any of tbe work I had done for so many years. Depression set in also. I was in such pain. My dad had a stroke, but no pain. But it was the area of the thalamus my sttoke hit that causes the constant pain. I finally found a physician who diagnosed me with what they then called "Thalamic Pain Syndrome." The pain never goes away. The stroke was on my right side so my left side was in pain constantly. I now am in pain all over!.

I've taken Neurontin for years. It's the only medication thst helps the pain, especially on left side of my face that feels numb, cold, and in which i have other sensations. I also had Scoliosis that progressed so fast I had to have a Fusion from my T3 to my L5-S1.....during testing for the surgery, they found I had a 90% blockage in my right coronary
artery. So I had a stent put in and the Scoliosis surgery was done a few months later.

My pain never stops. I've continued my life because I've had to, but my two neurologists who knew what Central Pain was retired and all the pain clinics, which never helped me anyway have mostly closed. In fact, they gave me so many injections that only.made me worse. Now my primary care doctor has taken over, she didnt want to, but I needed my medications and was desperate. I've been going to her over 25 years....she doesn't know anything about this condition but took over my medications. She knows me and that I've never abused any medication. In fact, I wish I never had to take another pill and have actually been cutting back on them since i wasn't getting the relief i need. I have to go see her every 3 months since I take a very small mg. Pain pill. I take anywhere from 400 to 800 mg. Of Neuuontin, depending on what I do during the day.

My husband had a stroke two years ago and has bladder problems and has a Foley leg catheter that is causing him such pain and he's unable to do the things he once did since the stroke. So, I'm taking care of him now, where he once did the grocery shopping and helped me. Now, I have everything to do. In fact I need to give him his medication now and take mine too. I have Afib and have just started medication for that. I take a muscle relaxer, BP medication and some Supplements. I can't tell I'm getting much relief from anything. I saw where someone was taking Lamotrogine and getting some relief. I think I took that medication years ago, but I tried so many the first 4-5 years, and have just stayed with my regular medications since. I'm wondering if I could try something else in place of some of my medications because caring for my husband has taken a toll on me and i love him but there's much more for me to take care of now, as far as his doctor appointments and he may be having surgery where they will go into his abdomen?, make a small incisionn and place the catheter there.

I am seeing a Neurologist, however, the past two years I've really not seen him much due to being so busy with 911 ER visits with my husband.

I hope those of you suffering in pain are having some low pain days, but I understand the difficulty of those. I just wanted to pop in and see how everyone is doing. I was on here several years ago, but of course, havent had much time. God Bless all of You! Take care!
Sandy

Jump to this post

Hi Sandy
I’m happy to read you have found some relief. My stroke was in 2018, also
in thalamus , but ischemic
The same pain you describe
started about six months post stroke and has never lessened. Tried everything
my wonderful neurologist
Could think of ( including your med) to no avail
Also done acupuncture,
Medical marijuana, seen
pain management specialists .. no results.. not even slightest change
So frustrating My oncologist, who treats me for my PV which caused my stroke, has no idea what to do and my wonderful
rheumatologist who treats my osteoporosis, is always trying to find help for me
I’m almost 78; so I guess I’m lucky it didn’t happen when I was younger and affect
my life with my family then
Bless you and I wish you well

REPLY
1 reply
poststrokepain | @poststrokepain | Apr 25 9:34am
In reply to @irishnanny3 "Hi Sandy I’m happy to read you have found some relief. My stroke was in 2018,..." + (show)
@irishnanny3

Hi Sandy
I’m happy to read you have found some relief. My stroke was in 2018, also
in thalamus , but ischemic
The same pain you describe
started about six months post stroke and has never lessened. Tried everything
my wonderful neurologist
Could think of ( including your med) to no avail
Also done acupuncture,
Medical marijuana, seen
pain management specialists .. no results.. not even slightest change
So frustrating My oncologist, who treats me for my PV which caused my stroke, has no idea what to do and my wonderful
rheumatologist who treats my osteoporosis, is always trying to find help for me
I’m almost 78; so I guess I’m lucky it didn’t happen when I was younger and affect
my life with my family then
Bless you and I wish you well

Jump to this post

I could have written your account. Your dfiagnosis and experiences fit my own. I am 85.

REPLY
1 reply
irishnanny3 | @irishnanny3 | Apr 25 9:46am
In reply to @poststrokepain "I could have written your account. Your dfiagnosis and experiences fit my own. I am 85." + (show)
@poststrokepain

I could have written your account. Your dfiagnosis and experiences fit my own. I am 85.

Jump to this post

I’m sorry to read that
Always hoping for people like us that there is a
discovery of something that is effective
Hope we both find relief

REPLY
poststrokepain | @poststrokepain | Apr 25 10:29am

This information about a Limotrigine trial over 10 years ago was encouraging for reducing somewhat the discomfort of post-stroke pain. I tried it years ago and seemed to be helping. But at 100mg I was having a reaction (itching) so backed off to 50 mg. For those who tolerate the higher strength, 200 mg, it surely would be worth the try. Using it for post stroke pain is off label, but it has been around a long time and doctors are generally comfortable with it.
https://www.neurology.org/doi/10.1212/wnl.56.2.184

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