Hi all,
I am 5 weeks post stroke and have been left with right facial bells palsy, loss of sensation down the whole of my left side of my body (cant distinguish hot/cold) balance problems and swallowing issues and fatigue. I was told this is a rare type of stroke but I should make a good recovery.
I would be interested in connecting with anyone else who has experienced this lind of stroke, for sharing information, mtual support and friendship.
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Stroke has so many forms. It is just a general term for a brain injury.
Dealing with the after effects can seem an insurmountable task.
It is all questions with no definite answers.
You will begin to find a way forward. Others here will listen with a sympathetic ear and you will likely get good advice.
Donāt expect too much too soon but over time you will achieve success and get back a feeling of normality.
Use this forum and get to know those here, we have things to tell you, you will discover you are not alone and answers will come.
keep on keepin on
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@Lizzie22 Hi & welcome to the community. Sorry to hear about your stroke but hope you find the forum a great place to be. I think everyone here will agree that whilst there are many different types of stroke there are many similarities in symptoms.
As @Bobbi says dealing with the aftermath of a stroke can seem insurmountable but with hard work, buckets of patience & plenty of rest you can and will make progress. It will take time though.
There are many friendly & helpful people here. Ask any questions you may have and someone will be along to help.
Best wishes
Ann
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Hi @Lizzie22
Welcome to the community, Iām sorry to hear about your stroke and the difficulties youāre facing at the moment.
Weāve got some information on our webpage which may help you on the physical effects of stroke which covers balance and swallowing. Weāve also got some information on fatigue. If youāve not read these already they may be helpful for your recovery.
I also hope youāll find this community helpful for your recovery, there is a wealth of knowledge here for you to tap into. If you need anything whilst youāre using the Online Community, please donāt hesitate to tag me using the @ symbol and my username.
Anna
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Hello @Lizzie22 - A warm welcome to this community where we hope you will find comfort, support, information and friendship in plenty 
Thank you for sharing with us your stroke experience. As you you been told, your particular āstrainā of stroke is of a rare type and you should make a good recovery, indeed, there are some on here who believe you may make a full recovery
I note you have had some welcome notes from our regular contributors and I hope you will get a chance to explore this forum and the Stroke Association where I am sure you will likely find much of interest, and not only about the subject of stroke, but many other things which go towards making life that much more happier as you recover from your stroke.
I note you have been left with right facial bells palsy and loss of sensation down the whole of the left side of your body, unable to distinguish hot/cold, balance problems and swallowing issues and fatigue. In the last few days we had another new member, @jolo join us who also mentioned Bells Palsy and we had a little discussion on that with contribution from various members. You may find that discussion of interest and I attach below a link to the same.
If there is anything you wish to ask, please feel free to post on this forum and I am sure someone will be able to enlighten you.
Wishing you a full recovery (yes, I am one of those who believes this is possible - it is my personal belief and you should not necessarily read too much into that )
Namaste|
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@ManjiB thank you so much for your warm welcome, I was really quite nervous using a forum for the first time, I am really looking forward to talking to other stroke survivors and becoming part of the community. It has felt very lonely since my stroke. I have a very supportive family and friends but it is not the same as speaking to someone who has been through what I am going through and it has been hard for me to explain to them what it is like for me now. I was pretty clueless about strokes other than what I had seen on TV adverts for the āFASTā response, which by the way led me to phoning the ambulance when my stroke happened and getting prompt treatment. I am looking forward to educating myself and taking better care of myself as a result.
Namaste 
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@Bobbi
Hi Bobbi, thank you for the encouragment and you are right I have so many questions! I feel quite clueless at this point and the information from the medical team has been very much about the immediate effect of the stroke. I look forward to learning from others on the forum and getting to know people and I hope in time to be able to contribute and help others in their stroke journey. I am tending towards feeling quite positive about the future. All the best
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@Mrs5K Thanks Ann really aprreciate your words. I am starting to learn that I need to slow down and allow myself to recover.
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You will learn that in time. I think we all tried to race out the starting blocks & were quickly put back in them again. I learnt patience along the way although at times I still struggle with patience i am better than i was.
Give yourself time & space to work through it all. You will get there.
Ann
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Hi - Iām new here myself. 3 months ago I had the same thing as you but left side. I realise that every stroke is different, but weāre at least members of the same club I reckon.
So, I had: dizziness and a left-leaning imbalance; loss of coordination on the left side; numbness/pins and needles in left arm and hand, and left side of face and scalp; nausea and vomiting; hiccoughs (really! now morphed into occasional coughing when I swallow āwrongā). My blood pressure was wildly high and fluctuated quite dramatically for the first few weeks, and even with meds was a bit flaky for quite a while. Oh, and vision difficulties in my left eye.
I just wanted to say to you that things can and will improve.
Iāve gone from being unable to sit up, far less stand, to walking freely (if a little clumsily at times) and am to great extent fully functional. Progress seems very slow sometimes, and I get a bit fed up (quite normal feelings, we all feel like that) but in fact with regular exercise and physio it is really pretty rapid. Iāve changed diet and lifestyle, lost weight, and this helps with blood pressure - which is fairly stable now. The sensations of numbness and discomfort havenāt changed at all for me - but Iām hoping that will come too. My vision is fine, though my left eye is still numb. Fatigue is still a challenge, but thatās not surprising I think.
Iām not banging on about my (relatively mild) symptoms just because I like moaningš But I thought describing my own progress, a couple of months further along the journey to recovery, might be interesting and perhaps help you develop a perspective on your own recovery. And I wanted to pass on the mantra: āKeep on keeping onā. Never give up. Hope this helps somehow.
Pat
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This is my biggest challenge! Very important to get that mindset though, I think.
Edit: ha, not as clever as I thought I wasā¦ this was supposed to be in response to the need to take things slowly and not get impatient.
Hi Pat - Welcome to the community.
What a great post
Thank you for sharing your experience of this not so common form of stroke.
The progress you have made is brilliant and I am sure that reading your post will help others like @Lizzie22.
Good to know there are others out there we can share our experiences with and it always helps us to come to terms with and plan our recovery.
Please do continue to share any titbits you have that you think might be useful to others
Namaste|
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@PatAtkins Hi & welcome to the community. Good to read your journey & I am sure it will give others plenty of hope. You sound like you have made some good progress in a relatively short space of time. I am sure it took a lot of hard work to get there though.
Look forward to hearing more of your journey.
Best wishes
Ann
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@PatAtkins
Hi Pat, thanks for your post, its really great to hear from someone who has experienced the same type of stroke. I am optimitic about how much recovery I will get and so is my stroke consultant who thinks I will make a good recovery.
I have gone from dizziness/ double vision and not being able to sit up or stand unaided in the first couple of days to being mostly mobile with like yourself some wobbly moments due to balance issues on my left side. I too had really high blood pressure initially but it has now come down to more normal levels with increased meds.
I am noticing some movement on the right side of my face and my eye is now blinking slightly and I can close it at night, which is a great improvement from having to tape it shut. Like you I am really struggling with fatigue, I am usually ok in the mornings but feel wiped out pretty quick with activity. Thankfully I dont have the hiccups but do still have some swallowing problems, although the SALT team believe this is more psychological than mechanical, but I am still on soft foods and it takes me ages to eat a meal and I find it very stressful and frustrating. I start sessions with a psychologist/clinical hynotherapist next week to see if she can help.
Its great to hear about your progress and I hope you continue to get improvements and I would love to keep in touch. My focus for the next wee while is on getting physically stronger and focussing on healthy eating (hopefully once swallowing sorted) as I am also a type 2 diabetic.
All the best
Liz
@PatAtkins
I know what you mean, I am a very practical person and I deal with challenges by making a plan and taking steps, but this is way out of my comfort zone and I have felt quite at sea with it. I should be more used to being patient, as I have been through cancer treatment twice in the last 6 years, but I can honestly say that nothing I have experienced so far in life has in any way prepared me for having a stroke.
Hi Liz,
Sounds like youāre on the way to recovery (good news about getting a bit of sensation and movement back in your face, thereās something particularly frustrating about looking like an idiotš At least, thatās been my experience).
For me, Iāve found the uncertainty of everything the most challenging of all, I think. Itās hard not to feel down sometimes when you donāt know to what extent youāll recover, what the timescale is, what the best way forward is. If you have access to psychological support thatās a good thing I think. I just try to measure progress on a big-picture scale (what I can do now that I couldnāt a fortnight, a month ago) and not sweat the stuff that canāt be known. Obviously itās not always that easy, as you know. But it sounds like your prognosis is pretty good, and we share a bunch of symptoms many of which have improved a lot for me in 3 months - thatās got to be a good sign too.
Keep in touch, let me/us know how it goes!
Pat
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@PatAtkins
Hi Pat,
Yes, I am finding it hard with people looking at me strangely when I smile at them too. But I am also grateful that so many people have been so kind and sending good wishes whilst I was in hospital and since I came home. I know my husband was touched by how caring people have been in our community.
I too find the uncertainty difficult to come to terms with and at the moment I feel like I have more questions than answers. I have been taking short videos of my face so that I can see the changes, it helps to remind me that its early days and I am getting improvements no matter how small.
I am so grateful that I havenāt lost the use of my arms and legs and can still enjoy walks with my dog every day and I am grateful that I am able to talk and communicate easily. I think having been through cancer twice has taught me that gratitude for the small things and just being alive help to remind me that life is always worth living.
I canāt say I always feel positive and some days have definately been harder than others, but I think that is also part of the healing process. In a way it feels like going through grief, first the shock, then the anger at what you have lost, then the depression and wondering how you will go on, but gradually acceptance of your new normal comes. Some days I feel all of them.
I will happily share with you and anyone else who is interested how I get on with the therapy, especially if it helps some one else on their healing journey.
Lizx
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Just a word of caution for you and @PatAtkins about blood pressure medications.
For some users, blood pressure medication has caused essential minerals to drop below safe levels In our case it was sodium., but for another member @Poncho it was potassium. It has come up on a couple of occasions and it has happened to my Mum, but at the same time many others are not affected by it.
We discussed it quite recently and there are other posts on this forum - you can search by key words such as sodium levels, blood pressure etc.
You may wish to read this as a forewarned forearmed informational.
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Liz, you sound like youāre well set up to deal with this!
Iām guessing getting through cancer twice has given you an insight into how to cope with serious stuff. Great idea to video your face - I really regret not recording, accurately, the extent of my numbness, etc. Instead I spent ages wondering if there had been any progress (there hasnāt, as yet) and it became quite demotivational so I quit wondering. Now, I just keep my fingers crossed, and hope for the best!
How does your husband deal with everything? My partner is resilient, but this has been very, very hard for her. In fact, I feel like I can cope with everything else (it is what it is, in the end) but I really struggle with how it hurts her. Also, as youād expect, itās put a bit of a strain on our relationship at times: Iām snappy and stressed sometimes and so is she, understandably. Weāve been together for 35 years so can weather most storms - but I do feel really sorry for her.
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ManjiB, thanks for the heads-up about sodium and potassium. I had a drop in potassium in hospital and they gave me some tablets for a day or two, and bananas, and it seemed to be ok.
Will check up, though.
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