Nearly a year after a stroke

Hi all.
I had a stroke 4th December last year and was only diagnosed after an MRI on Christmas Eve.
Reading all your forums, I thank myself lucky as I had little symptoms such as distorted vision in my right eye, some aches and pains in arm, but did have anxiety bad which I am now on antidepressants for.
During this year I’ve had, all tests on my heart, head and lots of medication which my doctor is still trying different tablets due to dizziness I’ve been suffering.
Recently I’ve developed dull head aches and aches in my neck, had these for three weeks now, although my doctor seems to think it’s tension, blood pressure monitored regularly.
Ive been asked if I’ve had acupuncture, which I have booked myself into, anyone had this experience

Hi Mich @Mich welcome to the forum. Pleased to hear you’re doing well a year on following your stroke.

My stroke was in September this year, so still relatively new to all this and I think my brain still adjusting and trying to ‘rewire’, so I still get pins and needles and odd sensations and bouts of dizziness.

Hopefully someone on the forum will have experience of acupuncture to share with you.

Stay strong and take care.

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Before I had my stroke I had accupunture, for constant headaches and migraines, and must admit it did help. I had mine through the NHS…I don’t know if they do that now. But obviousely this was before my stroke, so am not sure what to say about that now. Think you had better check with the Stroke Organisation or your G.P if you can get to speak to one!!! I like you suffer with headaches and pressure in my head after my stroke, which I have had no answers to. I also get the frequent dizziness. So can’t be of any more help to you. Let me know how you get on? It’s a pain this stroke thing!!!
Regards, Jane.

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Hi I’m the same. I had severe migraines all my life, then had acupuncture through nhs physiotherapist, it helped for about a year then the pattern of 2 migraines with aura (hemapligic similar to stroke symptoms) would start all over again. It’s really worth asking your GP. Since my stroke 7 months ago I suffer pressure in my head especially when I lie on my pillow and a constant dull headache most of the day too. Though since the cerebellar lacuna infarct back in March I have never had another migraine. It’s odd but I’m grateful. Hope you receive the acupuncture on nhs. Good luck

Hello good to hear from you. I too suffered pins and needles, chest and arm pain, it worried me so much I thought I was having a heart attack, after visiting A&E, they reassured me I was ok but the saga continues with new side effects, whilst I’m on the mend, guess I’ve got to learn to live with it and take every day as a positive that it could have been much worse
All the very best

Hi loshy
I had the same stroke as you and have problems laying on my pillow, this has only come on in the last 3 weeks I was fine upto then, strange it’s just now come on
All the very best to you and glad your migraines have gone

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I feel your stress and symptoms. I have started to feel pins and needles in both my hands when I wake up and it takes me ages to get my circulation going. When did you have your stroke? I’ve not had a very good start with rubbish consultants. But I have a new one now. My GP is really great too. Onwards and upwards keep going. Loshy

Hello Mich (@Mich), well done on your first year milestone. I went through a patch with neck ache but it seemed to come and go. I bought a neck travel cushion made from that memory foam stuff to take the strain off my neck when sitting for periods. The clots I had were at the back of my neck, so it is possible that bruising has occurred, and that area will still be sore at times. This is only a hypothesis but it stems from having a sore elbow that lasted for over six months from where I had a seven inch thrombosis in my arm. My elbow would get sore at certain times but that has resolved itself now. So, welcome to the forum, and hope that it can provide a good amount of support for you.

Hi Mich,I had my stroke 2 years ago and still suffering with pins and needles in my hand and also pain in my arm elbow and shoulder but I think to myself that I’m lucky to be alive my friend had a stroke 2 weeks before me and he wasn’t so lucky he passed away. My GP keeps trying me on different medication but nothing seems to take the pain away. Oh well let’s all live our lives as best as we can.

Hello Mich (@Mich), I noticed that you had a cerebellar lacuna, the stroke I had was a cerebellar stroke, so this is in the same area, lacuna determines whether it was the large arteries or small blood vessels (lacuna is the small vessels). In your original post you mention your doctor trying meds for dizziness. I’m not a medical professional, but cerebellar stroke syndrome affects the vestibular system and the oculomotor function, so you will experience “dizziness” (I call it giddiness because dizziness, for me, is the room spinning, whereas, giddiness is more the head swimming). I don’t know if any medication helps relieve this (if you find some, let me know!) Essentially, exercises to improve visual tracking and exercises to help limb coordination will assist in rehabilitation. There are recent studies that suggest cerebellar lesions affect visual attention, so moving our eyes from one area to another causes a disruption in our visual focus which can lead to “dizziness”, or disorientation.

I also have nystagmus and get blurred vision when fatigued, this does not help the giddy feeling. If you do have nystagmus there is medication that can be taken, and some people wear prism glasses which I am to believe helps. There is a recent research study on cerebellar stroke syndrome at MacEwan University in Canada, cerebellar stroke syndrome is little understood because research into the cerebellum is a little behind research of the cerebrum. It is only now that academics and medical professionals are working on understanding the cerebellum’s other functions aside from motor control.

Hope you are doing okay this week.

Thank you for your post, very interesting the more I hear the more I feel I can understand. I must admit, you’ve hit the nail on the head, it is giddiness, that’s the way I need to explain to doctor.
All the best for your recovery

Very interesting to read all your stories. I had a bilateral cerebellar stroke in June this year during a cerebral angiogram to check that my AVM had been completely removed. Prior to June I’d made a full recovery from the brain haemorrhage I’d suffered in Feb 2020 followed by craniotomy in Aug 2020. I’ve been making slow progress and can certainly agree with comments about dizziness and giddiness! I have had both - in the first couple of months following the cerebellar stroke I had constant dizziness and felt like I was on board a ship in a strong gale. Now I think I’m suffering more from giddiness but today, whilst on a walk, a stream of traffic came up the road and I felt the world spinning round me. I think it was a combination of the motion of the traffic and the bright lights on a dull day! But for my sanity I try and go for a mile -2 mile walk - using a stick for support and balance. It’s only been the last couple of weeks that I’ve been able to cope with reading and so I’ve found this forum and look at My Stroke Guide for short 20 minute bursts. Sometimes I do get down, but I am thankful that the stroke wasn’t worse. Good to read all your stories.

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Hello @Steve50 - the stroke I had was also bilateral cerebellar but also multifocal. They didn’t pin a cause on it, but I suspect it was trauma induced. As it is unusual for a stroke to be bilateral. Sometimes, I feel as if I live on a houseboat. Your walk does sound like an overload for the poor cerebellum, I have oculomotor dysfunction which is a fancy way of saying that the vestibular system (movement), the oculomotor system (eye sight), photoreceptors (light), and the cerebellum all have difficulty calibrating. The best exercises we can do are visual tracking, focus, and limb-to-limb exercises. As we both share a bilateral injury, the right side of the cerebellum has some responsibility for language. Possibly, why reading is trying for you, combine that with visual disturbance, and it makes things very taxing indeed. It’s the most under-researched part of the brain, and although they know it has motor control function, there is a lot they don’t know as to what it affects, that’s why they call our condition, cerebellar stroke syndrome. Hope you are going well with recovery. What are your most challenging aspects of cerebellar stroke?

Hi @Rups I am making slow progress but felt quite reassured when I saw my stroke consultant at the end of October. He was pleased with my progress and felt that despite all the difficulties I was doing very well. I think the most challenging things are balancing/ standing but also being able to move my head up and down, eyes side to side. I’m at my worst going downstairs or moving up and down the curb on a walk. Add in doing movements quickly or having a conversation and its hard work. Just simple tasks like loading the dishwasher or making the bed are so hard at the moment. Also, I can’t drive at the moment which is so annoying!

@Steve50 Wonderful to hear your getting positive reports from the Stroke Consultant and making progress, albeit slow, progress is progress :+1:. It’s hard work, we all know this, but we’re here is you need a chat and encouragement. Being able to use your laptop,even for short bursts, will keep you in contact with others for support.

Wishing you all the very best

Hello @Steve50 - I remember when bed making was a real challenge, it’s lovely when it becomes easier to do, and it will. I can’t believe I have just written that making the bed is now lovely to do :laughing: I used to find it a bore, now I actually look forward to doing it. You’re only five months down the track, I had to overcome hypometria (shuffling) before I could begin to concentrate on walking proper. I am not too bad on my feet but I get a lot of visual disturbance which is highly uncomfortable. If I close my eyes, I can feel my vestibular system wobbling. What I have noticed which is interesting, is when I see a picture, say on television, and I close my eyes. It takes much longer for the image to fade away. I suspect this may be why looking from one thing to another causes a delay that makes adjusting to the new sight difficult and that, combined with nystagmus and blurred vision, all leads to giddiness, and then nausea.

You will get back to driving, and that should come soon as it is a procedural memory task. After the stroke, I could hardly walk, but was able to ride a bicycle, no problem. Unfortunately, symptoms such as not being able to multitask, recognise patterns in things, oculomotor dysfunction, and lack of short-term recall gets in the way, but the core motor function of these activities should not be affected as that all comes from the hippocampus which is a pretty hardy piece of grey matter kit.

There are lots of visual exercises we can do, I think they are essential to a speedier recovery, but strangely I am of the opinion that the cerebellum should recover naturally over time because we can’t help but exercise it. It is part of everything we do just to move and see. So, even blowing one’s nose or sitting down in a chair and watching television is a cerebellar exercise. We are all different, however, and recovery time will differ for each individual. Mine has been rather drawn out I feel, but I suspect much of that has to do with my own neurosis.