hi has anybody had a thalamus stroke? I've never found anyone with this kind.
I woke up 3 years ago with what appeared to be intense pins and needles right down my right side but my face, speech, and ability to move were not affected.
After phoning 'NHS after hours' I was told to go into A and E. My local hospital's scanner wasn't working so I was ambulances to city hospital where I was asked all the usual; stick tongue out lift arms etc. I could do it all! ( this happened to me at local at least twice by different doctors) So after MRI I was sent home and told to take aspirin. The consultant phoned me a couple of days later to say 'yes I'd had a left thalamic stroke' had 1 appt and told symptoms may go or stay. 3 years later they are still with me! Frustrated!
I am responding this late because I found this after searching for thalimic. Please let me know if you are still on here and deal with any kind of movement/sensory issues as the professionals say they only see with this type of stroke.
I get frustrated too because every time I ask a Dr, pt/ot therapist a question I get, “we don’t get a lot of people w thalimic strokes”. Anyway, how are you making out? I’m not doing well as I developed post thalimic stroke pain which presents as extreme stiffness but I do drive and walk just hit my plateaue at 5 months.
Hi I still suffer from numbness, stiffness and sore. Strange to describe as how can numbness be sore? I also have fibromyalgia which makes it hard to distinguish. I recently got a steroid injection for my arthritic knee which has really helped the knee but made me more aware of stroke symptoms.
My poor husband must get so fed up of my moaning, I know I do.
Anyhow how are you?
You are right about finding joy in what I can do. I find watercolour painting really helpful, takes my mind off everything.
I have tried many meds but they do nothing for the stiffness unfortunately. And it is hard to explain to people that when the stiffness gets really bad,that turns into pain. I’ve been following a couple of other people on here who got this type of pain but not everyone has had a thalimic stroke.
Addition to add, I am now testing positive for autoimmune, possibly lupus disease. Prednisone did take away some slight pain but it’s not something I would want to take really long term. Seems strange to me that suddenly autoimmune issues are popping up.
Sorry to hear this. I was given Pregabalin then Nortritiptilin. So many drugs don’t know which ones give side effects.
Nortriptiline was increased to 4 tablets but I became so sleepy I wasn’t functioning. So was decreased to 3 and was fine. Had now been decreased to 2 and although my brain is slightly cleared am feeling symptoms more.
I was diagnosed with left thalamic ischemic stroke 2 months ago. I didnt have the typical FAST symptoms but pins and needles in right hand, which i mistook for Carpul Tunnel Syndrome. I also had a “funny” sensation on right side of face especially my lips.
Walking and talking, home after 4 days in hospital thinking I will be back at work after a couple of weeks!!
Then fatigue hit. I did not know the true meaning of the word till now. Waking up after a good nights sleep to feel tired is so fustrating. I have a very supportive family but now I am beginning to feel like a burden. I look ok and sound ok but inside im not ok. I miss the odd word sometimes but otherwise to look at me im “normal”. I have struggled with today because couldnt figure out why I was so tired and then that made me more anxious. Only to finally remember the pile of ironing I completed and put away because some of the clothes had been in the pile pre stroke. Maybe that is why i feel exhausted. Im not sure if any of this makes sense but that is my thalamic stroke so far
@MrsAli hello, welcome, though sorry you’ve had cause to join us.
It’s only been a couple of months, we all repair at differing rates post stroke, though fatigue seems a common factor for us all, whilst the brain is working to repair/make new connections. Be patient with yourself.
Pace yourself, plan more time to complete tasks and take regular rest breaks, pushing too far too quickly at the beginning can be counterproductive.
I’m sure your family don’t think of you as a burden, be kind to yourself, a brain injury is traumatic, so feeling anxious is understandable.
You’re amongst friends here, we understand the frustrations you feel.
Hello Mrs Ali
I too had a thalamic stroke and it is very frustrating that nobody sees the struggle you have inside.
Pacing is the hardest thing. Sometimes you feel you have energy ( eg able to do ironing) and then that fatigue hits. People who say they are tired have not experienced fatigue when everything, your body and your brain gets tired.
I am retired and sometimes my husband says you are doing too much as he knows I will crash.
You are not a burden, you are a stroke survivor who will continue to experience symptoms and you need to explain this to your family.
There are documents you can print out for them to read as sometimes it is difficult to put into words.
Have you been assigned a stroke nurse?
Always here if you want to talk
@Mahoney@Loshy@Tricia_60, thank you for your words of support and encouragement. This forum has helped me so much since my stroke, would be lost without it.
I havent had my 8 week check yet and the Stroke Association Nurse has been in touch…
Forgot to mention im 46 which according to the professionals makes me a “young” survivor.