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