Hi, I’m new on here and not sure at all of what im doing here, but im hoping to find some more people who have suffered this rare type of stroke. Last August, a week after returning from holiday, i suffered a Cerebral Venous Sinus Thrombus (CVST). My first feeling was a sharp pain in the back of my head, closely followed by severe headache, sickness, dizziness and feeling completely disconnected. I talked myself out of the idea of it being a Stroke because i didnt get the one sided weakness. I took myself off to bed and stayed there all weekend. I rang my gp on Monday morning aftrr having the most ill weekend i have ever had. I was immediately admitted to hospital and a scan confirmed the diagnosis. I was admitted to the Stroke Ward and in the next coming days i became more ill, suffering other symptoms such as difficulties with speech, balance, mobility issues, extreme fatigue, memory loss, concentration difficulties and a feeling that my brains on a complete go slow. I still, 1 year on, suffer with all of these. I lost my ability to drive and I’ve been off work sick ever since. I have 3 partially disolved clots left on the left side of my brain (sigmoid, left transverse and internal jugular). I still have pressure headaches and struggle when im laid down to sleep as it makes the pressure worse.
I would really love to hear from anyone who has had or has the same condition, or anyone that can give advice i would really like to know how long i will be like this and if i will ever get back to normal. My employer is applying a bit of pressure now too which doesnt help. I have no answer as to how much longer im going to take to recover.
Medication includes Rivaroxaban 10mg,
Nortryptaline 10mg daily for pain ( but not working)
Hi @smeadows1975
Sorry you’ve had cause to join us all but welcome now you’re here .
Nothing you say in your post will be a surprise to most of us and I hope you take that as comforting. Also pretty much all of us are seeing improvements but those come with time scales measured in months quarters and years
The welcome post links to other sources of help and advice
You’ll find the crew here empathetic knowledgeable willing to help and wise. Although none of us are medically trained and therefore you should never rely entirely on our opinions We probably unofficially know more that is useful than the medics.
You’re also find the culture here is totally tolerant when you want to share your wins, your despairs, your questions, your need for support or your offers of support for others
One thing I think I should say is that most of us have found that a stroke is not a detour from the path you were on but the relocation to the new path.
you may be spared that dimension but that will put you in a minority and it doesn’t seem likely if you’re a year past stroke with the symptoms you describe but to reiterate I’m not medically trained
I’m pretty new here too but just voicing my frustrations I have found a level of empathy that I cannot believe!!
It will get better I promise. I was chatting with a couple of other forum members earlier and we all agreed that whilst hard - recovery can and will happen despite the ups and downs.
Keep posting and talking.
I’m afraid I have not had that kind of stroke - none of my 3 were!!
But stay cool and ask and rant and
I honestly would just tell them that you have no idea it could be years so they will have to deal with it and park that one in their court so you can stop bothering yourself about effing work when you need to focus on YOU
Thanks for the advice, Kieran, you’re absolutely right. Im just not sure what my rights are with regards to being off sick. I’ve never been ill so never been off long term before. 2 sicknotes in 30 years before this mad crazy road i find myself on. Sounds like you’ve had a tough time with 3 strokes, bless you. I’m worried sick I’m going to have another and won’t recover.
I wish you well and the best of health in your journey also.
@smeadows1975 There are various laws concerning disability and employment - I can’t help with them at the mo I’m afraid but I will add them to the list
Thanks for your reply, mine was ischaemic. I’ve always eaten well and continue to trycto but my appetite has dropped off a bit. Never smoked or drink other than the odd glass during usual birthdays, Christmas and special occasions.
@smeadows1975 just popping by to say hi & welcome to the forum. Sorry you’ve had cause to join us.
I haven’t had your type of stroke but can say that recovery really is measured in months & years. In relation to your employer can they get an occupational health report done for you? If so that would give them an idea on how long it might be before you can consider returning. You could also try ACAS for advice & if you have a TU Rep speak to them too.
Most employers have an absence policy in place & i would ask them for a copy. Where I work for example they will tolerate you being off sick for a while (time varies depending on why you’re off & how proactive your manager is). Then if it is looking unlikely that a return to work will happen soon they then look at medical retirement followed by medical dismissal. This may be different for other emoloyers. I would definitely get advice so you know where you stand with them.
But most importantly your health has to come first & returning too soon coukd be detrimental to your health.
I am in US and things are quite different here regarding employment, as well as names of medicines, healthcare access, and programs. I am not much help in those areas. However, stress and worry are things that will not be helpful for any of us. Anything you can do or get help with to lessen those will be very helpful to you. The other thing is stressing that this will happen again. No one can tell you it won’t. The thing we can all tell you, though, is thinking about that won’t help you recover, or help you live a good life. Do what you can to work toward recovery and take care of yourself, accept and even ask for help when you need it, and enjoy everything you can…your family, your friends, the things you can still do and other things you can try that are new but help you relax and smile. Easier said than done at first but then it becomes second nature after awhile. Being here, with support from others who know has helped tremendously, whether something they say resonates with me or they make me reconsider something bothering me, or I am supporting someone else, makes my world better on an almost daily basis. I am sorry you have need to look for this group, but hope you will stick around and find it as helpful and caring as I do.
I’d love to speak to you sometime about the differnces in things between UK and US…
I’m slowly trying to do my thing about stuff people here can get and try and make it as useful as possible but will take some doing. Stroke brain works in mysterious ways!!
But I would love to add an international section.
If you don’t mind I’ll get back to you on this in a week or so…
In the meantime stay cool
Here is a picture of a polar bear in alaska, USA to cheer you up
Anytime! I have no appointments until mid November. I don’t know what I will do with myself, LOL. I have had at least weekly but usually thrice weekly appointments for the year and a half I have been out of hospital. A change I should be happy for but am tearful over, since I have become fairly close acquaintance with my therapists and doctors…my social life outside of here. It is like saying good bye to family and best friends! I am terrible at good bye’s!
Hi DeAnne, thank you so much for your kind reply. I completely relate to what you say about feeling tearful when easing back from the therapy. I too, l13 months in, have been told by all of the therapists, physiotherapist etc that i now have to focus on rest and learning to manage the fatigue. There comes a time when all of the appointments can have a negative affect kn fatigue. Like you, i too had two or three appointments weekly. I cried when they said it was time to take s step back. You do feel scared and alone. They were the only people that i felt truly understood what i was feeling and experiencing. Have they told you that you can be referred back to them later if you need more help? This is what theyve told me. From my experience, i felt that the therapy concentrates on getting you up and moving a little, learning strategies for being able to manage the small things like setting alarms to remind you to take meds if you’re having memory troubles, learning how to manage loss of concentration and all things that affect daily living. Then comes the oeriod of rest and recuperation before you can even think of preparing to go back to work. I think this is when you can go back to therapy to help with that. I’m not there yet so can’t comment much on that. You are here now, with like minded people and i hope you find comfort in this. I’ve only just joined this week, but i already wish I’d found this sooner. Take care and reach out when you need to.
@smeadows1975@DeAnn i too felt a bit sad when i was let go by physios etc. Although I was a bit fed up of appointments all the time. @smeadows1975 i was told I could be referred back if necessary too which was explained to me as a significant improvement or a deterioration. I had reached a plateau & as I wasn’t progressing they said they could do no more.
There does come a point where rehab & exercises have to become a part of your daily activities rather than something you specificly do. Well that’s how I thought of it at least. I didn’t want to spend the rest of my time doing exercises, exercises & exercises. For example I exercise my arm doing housework or typing, my leg when i’m moving around etc etc.
It’s also good to see it as a sign of progress that they believe you have reached the required level to be able to manage the rest yourself.
In my case having a stroke during lockdown with virtually no PT or OT I’ve done that from the very beginning.
However I’m not with this message; I think that’s a self-serving let’s get the person discharged and off our books. Every so-called plateau is the launch pad for new capabilities. Anytime I stop improving I set the exercises aside that have ceased to return a benefit and adopt a new ones until some later time normally 3 or month more months away when I pick them up again I see progress - - like my elbow improves once my shoulder has gained more range and strength so elbow exercises may appear plateaued shoulder exercises then build something that more elbow exercises can take advantage of.
I’m now at the stage of wrist and fingers get the specific focus and the shoulder and elbow get the daily living use like washing the car or carrying the basket in the farmers market like I did this morning where I held it out to my side - which was a little inconvenient for the crowded market - and put proved that my strength is growing except in my fingers where try as I might I couldn’t get them to curl up around the handle even though I could hold the weight of the basket in the claw like hand!
They say every stroke is different, but that’s because out of 20 (or 50) individual changes and challenges that match another 18 people. to match all 20 things takes 20 or 30 people. No one thing is unique It’s just the combinations.
Totally with you @SimonInEdinburgh but sadly that doesn’t mean the physios are but in their defence i guess they have a long waiting list & others may be more in need.
I have sympathy for the frontline staff who are under unreasonable pressure.
I have none for the service that I have paid my entire adult life for and is not fit for purpose when called upon to serve it’s sponsors ie me and you. I also think that while the front lines staff have tremendous empathy and personal commitment their training and visceral understanding is lacking.
That I also put down to failings in management to understand how to do continual service improvement - a very basic capability of management of any service delivery organisation
I’ve seen statistics that say there are 29,000 members of my stroke guide - I don’t think that’s actually a reliable statistic - but it might make us as a group a voice of influence if we got ‘our shiite’ together…
but in their defence i guess they have a long waiting list & others may be more in need.