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Central Pain Syndrome/ Post Thalamic Pain Sydrome
I was 30 years old when I had my thalamic stroke. Doctors have different theories on what caused but nothing definitive. All we know for sure is that I do have a PFO and that played a role. I’m now in the process of deciding on whether or not it needs to be closed.
This has been a long tumultuous journey, especially being so young. While my friends are still out partying and enjoying life, I’m at home suffering. The damage from the stroke has left me with central pain syndrome or post thalamic pain syndrome. I have experimented with different awful meds and finally found a combination that works. But I still have excruciating episodes that come out of nowhere that can last for up 2 days. My skin becomes so sensitive it can’t be touched, I feel like my insides are experiencing the same sensitivity it makes me want to throw up. My body becomes so weak I can hardly walk or speak. My vision is blurred. I’m basically paralyzed and can’t function, can’t go to work. When it’s over I feel guilty for the people that have to take care of me or pick up my slack at work.
Does anyone else experience this and if so how are you managing it?
AHAASAKatie, May 13, 2019 10:52am EST
I am so sorry that you are having to manage this. I am sharing what we have regarding Central Pain Syndrome for you. I hope this is helpful. Best Katie
Flygirl, May 15, 2019 7:45pm EST
I had tears while reading your story. To suffer a stroke at any age is devastating let alone when you are so young. I am so very sorry. I wish I could give you a hug. Please do not feel guilty about love ones helping you. You would do the same for them!
I had a severe stroke over two years ago. I had a cryptogenic stroke; no known cause. I did not have any of the known risks for stroke. The doctor surmised it could have been long time stress. I was completely paralyzed on my left side. I have since recovered about 80%. I also had an accident when I was 10 yrs. old. Ran through a sliding glass door and severed the sciatic nerve. My right foot is paralyzed and I have severe nerve damage. I am telling you this because I have severe nerve damage pain. My pain is different than yours but I understand how hard it is to live with severe pain. I wish I had an answer to help you with your pain.
May I ask you how much movement have you gotten back? Are you able to exercisise? I have some suggestions, but I don't know your mobility.
I hope to hear back from you.
My arms are wrapped around you, Cindy