I had a Thalamic stroke almost 2 years ago. It was undiagnosed for 3 months. At the time it happened, I had pins and needles all down one side, but it was missed in A&E because I was given a CT scan, which didn’t show anything. As the numbness, cold, and tingling increased I eventually got an MRI Scan, which revealed 2 bleeds in the Thalamus. I think that because I can walk and talk, swallow, and have a very strong grip, I have not had much support from anyone who knows about it. Everything I know, I have found on the internet.
When I first got the diagnosis, i was full of gratitude. I had a stroke and I appear to be normal with movement, cognitive functions, and general health. This was, in a way, my downfall, as I have received minimal support.
However, the symptoms are still increasing in intensity, and the left side of my body is becoming extremely stiff. I feel freezing cold most of the time. My left hand has movement, but minimal sense of touch. There are several other side effects.
I am 77, but I am a determined person, maintaining an active lifestyle, eating healthily, keeping my interests, social life, and being independent, and keep up the smile and the good cheer. I must appear to be “normal” to people, who always comment on how well I look. However I am beginning to struggle with an awful kind of lonely isolation. I feel as though I am sliding down a hill, and no one knows. Can anyone help, please?
There are all kinds of strokes, my husband looks fine, no droop except a barely perceptible one on the right hard side where he is more jowly. He can speak well. And not very mobile but getting around slowly with a stick. He had a front lobe stroke and a subarachnoid bleed on the brain which is quite rare.
People who see him keep saying how well he looks and he does but he is far from well.
Many assume that a stroke victim should have a pronounced droop and be paralysed down one side, like Andrew Marr. I suppose I thought this too but in the stroke ward my husband was on there were many variations on a theme.
You have real discomfort/pain caused by your stroke so do follow this up with your GP or stroke clinic.
You should not feel alone with this and am sure this forum will help or any stroke groups near you.
@1amBetter Hi & welcome to the community. Sorry that you are finding things difficult and have been lacking the support you need .
It is not too late to get that support so please do see your GP & push for it. And if you get no joy keep asking until they do something. Sometimes you have to make a fuss to get the help you need.
Also, give the Stroke Association helpline 0303 3033 100 a call as they can advise on other things you might be able to do too.
Best wishes
Ann
Hello 1amBetter,
You have described exactly my symptoms post a Thalamic stroke 8 months ago, I’m 76, I too have a strong grip have not lost strength in my arm or leg but my left side from head to toe remains numb, I have tingling sore and sometimes extreme pins and needles down my leg and arm. I have extreme pain from my pudendal nerve which affects me when walking and especially sitting….but… I look OK, so no one knows unless I tell them what this all feels like, I’m greeted with “you do look well”
I am taking Gabapentin for the pins and needles, so far it’s not working, it can be increased, I just hope it will eventually work…
I’m sorry you are feeling so helpless, are you getting any pain relief 1aBetter? Is your GP helpful? This Forum is a really good place for you to be, there is so much support and it really helps to know you aren’t alone with how you are feeling….. I had 6 weeks help initially from a physio team and an Occupational therapist, I had re sensitising therapy which has given me more feeling in my leg but like you my limbs are getting stiffer…I’ve recently seen a Neurophysio privately, she’s given me some balance exercises and some exercises to strengthen my core…So onwards and upwards! I’m still here!
Hi @1amBetter ive just seen your post.
I am just over 7 months from my thalamic stroke. I too like yourself had my symptoms missed as being a stroke, like you a ct scan didnt pick it up. It was only when id been asked to return to hospital 3 days later after a&e discharged me that i had an MRI and they found out id had a stroke.
I too like yourself received no support and was put eventually via the stroke nurse in Feb onto a waiting list for community stroke team as classed as not urgent. Ive still heard nothing.
Im now in lots of left hand discomfort and my left leg from knee down is still feels like a tight band round it once standing, my toes are tight my sole of foot burns when walking, to the point when out i cant walk far. I brought this up with my gp who said nothing much can be done and also during my final telephone app with stroke consultant (never been seen by anyone) and i was told its Thalamic Pain Syndrome, i too like yourself have read up so much about this type of stroke on the internet. I was told to try Pregabalin, but a prescription was only issued yesterday so cant say yet whether this will help or not. Though what i have read, these drugs only mask the pain and they eventually stop working.
I have little sense of touch in the tip of my thumb and index finger, part of my part of my palm feels so sore as they day wears on.
Friends think that because i’ve managed to return to attending craft fairs that im over the stroke, they dont see on days following when im suffering fatigue from the efforts, they have no idea what is going on inside my head, the struggles i still face. So when they questioned why im not replying to messages and i try to explain about fatigue. Im told im too young to be suffering still and must therefore be depressed as Im still in my 50’s .
Someone suggested a new stroke group that had started near me. Even though i said im trying to get on with life, they pointed out they are good for support and someone who has been through similar that understands. Maybe you can find a similar such group in your area.
Its maybe a starting point in helping you not feel alone
All the best
Hello Ann221, and others who have responded to my post. I can see that we all have parallel symptoms, and are coping with versions of the same symptoms. Recently, the stiffness and burning pain, and numbness have increased. I just wonder what is going on to cause this. On some days, for no apparent reason, there is disturbing left sided crushing, squeezing and burning as though a dial is being turned up to FULL ON! My foot feels so alien, like different parts of it, are not joined together properly.
Does that ring a bell with you. Over 2 years on, and it’s worsening. My left hand is now starting to wobble and shake. Sadly the synchronicity it had with the right hand, is now gone, which means that doing up buttons has become a challenge. Even using the left hand to put the key in the door is a challenge.
Sorry, to moan on, but I have never felt so isolated. It doesn’t seem right to tell people how I feel, so I just keep quiet.
I realise that it’s vital, do keep interested, and active, and try to do the things we love, but it’s a matter of balance, or the fatigue steps up.
I am feel for all you people, suffering in the same way, I wouldn’t wish this on anyone.
It’s just the feeling of living in a different world to everyone else, that creates the lonely isolation. So sending love and wishing the very best for all of you fellow folk on this blog.
Sorry to hear things seem to be getting worse for you. I have heard that this can happen. Given the time that has elapsed since your stroke I would suggest getting checked out by your GP as there may be something else causing it. We need to be careful not to put everything down to our strokes as we are still susceptible to other things too.
Hope things settle for you soon.
Ann
Hi @1amBetter i can relate to your point regards it’s a matter of balance or fatigue steps up. My hubby had his stroke over 3 years ago, and if he over does things in the garden fatigue will still effect him. I know what is wrong but he doesnt like saying anything to others.
Im only at nearly 8 months since mine, but i do find the following day after pushing myself the day before my foot will burn far much worse when trying to walk and the stiffness is far greater, but it means i can’t do what i want to do, ive put it down to fatigue after resting a day or so it eases down again.
Not that this effects myself but a friend who had a stroke over 10 years ago asked did i get a shaking hand as she started suffering it, so you are not alone in that happening. I would say that’s nerve related.
Maybe you should try speaking with your GP and asking their advice, as i was told no one should suffer in pain if there are options available to at least try.
All the best
emphasised textHello, all your experiences and consequential symptoms are very similar to mine. I feel as though i have a sister!
The stiffness, coldness/ and left sided burning, are ever increasing, i can hardly move when i get out of bed in the morning. I’m finding my lefthand fingers are not pressing the strings very well when I play music, and like another person on this blog has said, shake slightly.
I think because I look normal, move as normally as I can, and make enormous efforts to speak and behave normally, doctors don’t seem to understand at all, and are only there to ensure that you are taking your prescribed medication.
1amBetter I was interested to hear you talk about the vice squeezing feeling in your lower leg I feel that too also in my arm, they are also very sore to touch sometimes….I asked the Neuro Physio if it was my muscles contracting, she said there is nothing physical happening it’s all your brain working overtime.. I was kind of relieved to hear this? I had wondered whether I should be doing exercises to stop what ever this is happening, whilst exercises are good to keep you supple it won’t have any effect on these neurological sensations…I am considering having CBT (cognitive Behavioural Therapy ) I copied the following from my Google search…
Here’s how CBT can help with Thalamic Pain Syndrome:
- Changing Pain Perception:
CBT helps patients identify and challenge negative thoughts and beliefs about their pain, which can exacerbate suffering. By reframing these thoughts, individuals can learn to manage pain more effectively.
- Developing Coping Strategies:
CBT equips patients with practical techniques to cope with pain, such as relaxation exercises, mindfulness, and activity pacing.
- Improving Functional Abilities:
By addressing pain-related limitations and promoting a positive mindset, CBT can help individuals improve their participation in daily activities and enhance their overall quality of life.
- Managing Emotional Distress:
Thalamic pain can significantly impact mood and mental well-being.CBT can help patients manage anxiety, depression, and other emotional challenges associated with chronic pain.
I feel it has to be worth a go?
Thank you to Sunshine55, Anne22, BabsO3, and MrsK for your kind support and advice. Some of your symptoms sound identical to mine. How do you keep going? I feel still as though I am sliding downhill, all symptoms are worsening and still no help of any kind.
I keep reading on some of the blogs, stories of people’s recovery, and while I am happy for them, I just continue to decline, while not receiving any advice or support from anyone. I’m afraid I don’t seem to get anywhere with GP’s, perhaps because I have walked in, smiled and can speak, so they think I am normal. They have all said that they have never met anyone who has had a Thalamic stroke. I’ve been waiting for 11 months to see a physiotherapist, and that is pretty much it. In the meantime, the freezing, numbness, stiffness, and now shaking increases. I’m trying to keep my hope up. Apologies for the complaining, but with a lot of demanding and stressful things going on in my life for the past 2 years, I feel as though I am coming to the end of my tether. You are the only people in my life that understand.
I know you have already tried your GP but I think you should go back to them again and insist that they do something. You need to stress to them how much this is affecting your life and just because they haven’t come across anybody who’s had a thalmic stroke doesn’t mean that they shouldn’t help you. Sometimes you really do have to make a fuss before they will do anything and if your GP won’t do anything then insist on seeing a different GP to get a second opinion. At the very least I would try asking for a neurological referral so that you can be seen by a specialist.
I’m really sorry to hear that you’re suffering in this way and hope that you find a way forward soon.
Thank you. I need to brace myself and go in guns blazing.
@1amBetter , that’s the spirit. Go for it.
Hello 1am better,
My neurological signs are just like yours and I have had them for 1 year and 4 months now. I have severe cold, pressure, numbness and pain hypersensitivity of my left side which is relentless and similar signs but much less intense on my right side.
My initial thalamic stroke was on the right in January 2025 confirmed on MRI and then I had a second thalamic stroke on the left in March 2025 with the same signs but less intense.
There were no MRI changes on the second left thalamic stroke. At that time the emergency room neurologist said it was a TIA and I would completely recover. It has never recovered. Later a different neurologist called it a mini stroke and said they don’t always show up on MRI because of their size. On a follow up visit the same neurologist then told me it was psychosomatic. I felt so defeated like it was all my fault I was not getting better that I never went back to see him. I have no neurologist at the moment.
I did talk therapy, EMDR (eye movement therapy) and acupuncture but still all the signs on both sides persisted. I worked with a psychiatrist and my primary care physician and have tried 8 different antidepressants and pain meds. I could tolerate none of them.
I am usually a very upbeat optimistic person. I really try to focus on the fact that I can live independently, and take care of myself and my precious dog and drive on good days. My vision, cognitive function and ability to walk are pretty good too.
Yes I know I have much to be grateful for but the unrelenting discomfort and pain and fatigue make for some tough days and I just don’t want to go anywhere and be around a lot of people because I get easily overstimulated and exhausted.
I am religious about my daily exercises and PT and still do them most days. I am on Lorazepam and Trazodone to sleep and sometimes need 0.5 mg Lorazepam during the day when my anxiety gets bad. Yes even with all I have to be grateful for I get anxious and down.
I read that some people are getting relief of pain symptoms with a 1:1 oral spray of THC and CBD. I have a call in to get an appointment with a local MD who specializes in that. For all that I have shown subtle signs of improvement and I still have faith in the neuroplasticity of the brain.
I have accepted most days that I will never be normal again but I believe I will continue to improve and be able to lead a tolerably good life. My name is Cheryl and I live in Florida. I am an 81 year old retired veterinary neurologist never dreaming I would have a neurological disease. Stroke does run in my family so there is a likely genetic component. I am blessed to be in great physical shape otherwise.
If you want to hear my story, here is a detailed version below. I
I have always been a health nut, eaten well, exercised daily and been socially active. I retired at 63 and was living my best life. I have always been a car enthusiast and really wanted a Porsche 911 Carrera. My precious Whippet dog died of old age and I decided if I was going to do it, I might as well go for broke and get the car of my dreams before my 80th birthday. So I did and it’s beautiful. I always loved the lyric written by John Lennon “Life is what happens while you are busy making other plans”.
Five months after my car purchase I had weird numbness of my left index finger. Over the following days the numbness spread to my whole hand then a little on my lower lip and thigh on that side. Even with my knowledge of neurology I thought strokes had a sudden onset not a slowly progressive one. I did realize finally that something was up with my thalamus. When I saw my doctor she immediately sent me to the emergency room (ER) because she said I was having a right thalamic stroke.
This was in January 2025 and the diagnosis was confirmed on MRI. Because it had progressed over several days and I was able to walk, talk and see okay, the neurologist on duty said I didn’t need the usual clot busting therapy and just sent me home on blood pressure medication because my blood pressure was high.
By the next morning I was totally numb, cold and feeling like the left side of my body and face were held in a vice or a very strong girdle. The pressure on my chest was so severe I could hardly get a breath and worried I was having a heart attack. So back to the ER I went. I was hospitalized for a cardiac work up and that was okay.
While in the hospital I began having episodes where I would get hot, flushed and almost pass out. Then I would wake up feeling panicky. I asked if I could be having a panic attack but the doctor on duty said no since I never had panic before and sent me home undiagnosed. No one considered this could be associated with my stroke and the neurologist was never called.
These hot somnolent episodes progressed and became frequent. I now know they were from secondary brain swelling from the stroke. They were very scary to me and I really needed help. I went back to the emergency room. They asked me if I was suicidal. My answer was “well I can’t live like this” and I ended up in the locked down Psych Ward for 2 days.
I was on a walker at that point and the other “inmates” struggling with their own issues were so kind to me. They took me under their wing, telling me about the routine there, opening doors for me, taking me to activities and asking me to join them for meals. Overall it was a very loving supportive environment.
The psychiatrists there started me on Zoloft and sent me home. I tried Zoloft for the regulation 6 weeks and the side effects got worse and worse with severe night sweats and a cardiac arrhythmia. They switched me to Lexapro and I started shaking all over and had a major anxiety attack which was relieved by lorazepam. I tried mirtazapine and trazodone and even on the lowest dose I was semiconscious and felt horrible so quit everything.
I did pretty well for 6 weeks and then started have intense feelings of primal fear in the pit of the stomach. I tell you all this because part of the thalamus also affects mood and gets better but is really scary at the time. I confused hunger, anxiety and a primal fear.
In so many ways I have improved although subtly. I used to be so freezing cold it was unbearable and had to use heated socks, gloves and arm gear. I bought everything on Amazon that was heated. I no longer need any of it and can often go without a sweater in the house. Beta blockers for blood pressure control made my coldness worse so I switched to a different kind and that improved some.
My muscle strength is better as I eat lots of protein and weight train. I am still pretty stiff and walk like a penguin but am grateful I can walk. Today I was able to ride my ecco tad trike around the neighborhood. Getting outside is really important to my mental health.
I think we are suppose to learn and grow from each new experience we have. I have more moments of acceptance of what is, gratitude for what I do have and living in the moment finding meaning in little things. This is a journey and it is a comfort to know others understand my experience and that I am not alone
Hi @Cheryl5 just popping along to welcome you to the community. Thanks for sharing your story which will no doubt help many on here & any new people that will come along. It sounds like you are getting along ok although, as many of us know, the invisible effects are often the ones yhat cause thegreatest issues.
Improvement can and does continue for a very long time / for life if you work at it which you are doing.
Wishing you all the best.
Ann
Hello @Cheryl5 - what a wonderful post 
Thank you for taking time to write such a detailed account of the journey that has brought you here. I note you are 81 years old and from what you have written, it seems to me you are doing very well having overcome some obstacles and having dealt with varying degrees of help and information from the health professionals.
What I find very pleasing about your post is you mention that you retired at age 63 and were living the best life. This is not something that should be underestimated. You acknowledge that all things considered you have much to be grateful for and I am sure this is a factor in you being able to lead the life you are living.
So much positivity and acceptance of the circumstances and a desire to do things and get on with life. I don’t think this is down to chance alone and you deserve much credit for what you have done and achieved.
It is wonderful to read you post and there is so much others can take from this. Thank you for sharing and you are absolutely not alone in this and there are some who understand your experience, though I have to confess I cannot truly understand as I am only a stroke survivor by proxy. Anything that I can say about stroke survival is based on interpretation or second guessing what my Mum has been through and what I have seen whilst caring for her.
Namaste|
Thank you for your kind words. Your beautiful light shines through these pages. I know I am not my body but just have a body. At the same time my body discomfort has most of my attention these days. I believe everything happens for a reason to learn important life lessons. I am still in the process of grieving my losses and figuring out what I am suppose to be learning from all this. I am also still exploring my options to have better life quality now.
Thank you again for your uplifting words. I am wishing you and your stroke survivor a beautiful day. Hugs, Love and Light Cheryl5