It’s the first time I’ve posted on the forum and I’m just hoping to get some advice or insight on adjusting to life after my stroke.
My stroke was 5 months ago, came as a complete surprise as I’m 52 and fit & healthy and it’s forced me to reconsider everything. I won’t bore you with the hassle of benefits, I’ve read a lot of other peoples problems and I share their pain it’s the physical side that is the biggest challenge.
I’m getting used to fatigue being triggered by conversations with people. An hour chat can lead to two days wiped out. Headaches have been a major issue and most recently I’ve started to get hand tremors, has anyone else experienced this?
I know 5 months is a blink of an eye in stroke recovery but any reassurance you could give would be really appreciated.
Hope to hear back from someone.
Thanks Rob
Hi @RobD1 & welcome to the forum. Sorry you’ve had a stroke. I can identify with many of your symptoms. I’m 20 months on but still get wiped out by conversation. Although not to the same extent as I did. Who’d have thought a simple conversation could be so exhausting.
I had a permanent headache for the first 8 months or so. It did ease at that point but comes back from time to time.
I’ve never had tremors but hopefully someone else can help with that.
It’s important to get plenty of rest in the first 6 months as your brain is doing lots of it’s rewiring. Hopefully you’ll find your issues start to improve in time.
I hear you @RobD1 i too was very busy pre stroke. Never stopped. Not being able to do what I want when I want is so hard but in time I found it easier to rest and now I factor a rest into my day otherwise it becomes an enforced rest.
Hello @RobD1
I guess since you’ve been on the forum for a while & read a couple hundred posts you’re beginning to get the feel of the place? In any case let me add my welcome to those you’ve already received
You might already know that we have gathered together the repeating content of initial messages into a welcome post that is here Welcome - what we wish we'd heard at the start Just tap the blue text.
There are 44 posts on here that mention tremors the welcome post tell you how to search for them
At 5 months you’ve probably still got some physical recovery going on, some chemical changes to brain chemistry, climatizations to your medication, and other random “the gift that keeps giving” echoes.
As 44 posts would indicate tremors are a reasonably known hassle. They could be from neurological reconnection, they could be side effects of statins and a variety of other causes. A normal caveat of if they worry you talk to your GP stands. You haven’t said under what circumstances you get them like I get tremors in my right hand whenever I try and make it do something that’s just a little bit tough for it or when it’s tired or when I’m tired but I don’t have them constantly.
Hi @RobD1 and welcome to the forum
Post stroke I think we all have tendency to link new symptoms to our stroke but that’s not always wise. Your hand tremor could be linked to any number of other things…including your headaches! Don’t neglect your health by relating such symptoms to stroke effect. I suggest you see your GP about your hand tremors and getting your headaches under control. Why suffer in silence
In the meantime, consider why you are having these headaches, in other words, are you putting too much pressure on yourself in your haste to rapid recovery. Doing too much can be as detrimental as doing not enough in healing and rehabilitation of the mind. The pressure builds into a headache, the tremors start as the pressure mounts…don’t blow it See your doctor and the headaches under control.
Everyone here has such good advice. I will only address tremors, but remember what everyone has said, there are so many reasons that could be…related or unrelated to stroke…perhaps medicines or the headaches, plain healing, … My tremors started fairly late in my recovery…after the first year. I was told it was likely anxiety but I did not believe them. I didn’t feel anxious. But lo and behold, I now think they were correct. They are less often and of a shorter duration these days. They are in my hands and arms and occasionally my head. If I allow it to carry on, I get to the point of having to sit and rock back and forth, much like someone with autism. When they start now, I ‘slap’ my arm or leg and tell it to “stop.” And remind myself I don’t have to hurry as it generally happens when I am doing something I think I should be able to do more quickly. I think people are annoyed at my slow movements because I used to be so fast. I have vision issues as well, so if people are near me, I can’t guess well their distance from me. That makes me a bit nervous I will bump into them or come too close, so I stop my steps and often the tremors will start then, or in new situations since stroke. I am afraid to upset others and start a riot due to their impatience. One good thing about stroke…I will not be re-entering the rat race, again, job or no. It was a joyless trap that never got me ahead in anyway. I no longer even want to be who I was before. This is a chance to focus on you and your own values. What is truly important to you? Work on those things and trash the rest. Best wishes. Nice to meet you. Wish it had been in better circumstances, but at least here, people are more concerned about truly important things in life and are empathetic and helpful to others. The connections formed since stroke seem much less superficial.
Thanks to everyone for your replies, it has really helped. Just to be able to speak to other people with similar experiences who can empathise and not just say “ahh, you’ll get better soon” is such a relief. I’m going to see my GP about the tremors and see what guidance he can give.
Again, thank you all
Rob x
You’ll help your GP if you start to identify when the tremors occur.
For example can you link it to sleep exercise task diet?
To link to medication maybe harder because you’d probably have to take a holiday for one two or more weeks and that isn’t to be recommended without discussion
And in a complimentary vein when they don’t occur like the first thing in the morning or when exercising on a treadmill or etc
I’m glad you’re feeling supported here. It is the power of all communities like this that we actually viscerally understand and it’s a universal weakness of the medical professionals that they have no lived experience and that gives us a certain je ne c’est quoi
Hello @RobD1. Good plan and worth getting checked. I have tremors on my affected hand and sometimes leg, but I believe it’s just fatigue and weakness, definitely worse in first few months, and now a sure sign a rest is due. Hope it lessens for you, Julia
Hope you can get some support on here , it’s a great place and everyone is friendly, having read many posts , for me I find lots of tips and can be a comfort to know Iam not alone , for me fatigue is a big issue, like many it’s accepting life is different is the key x
Just to reassure you it does get better - at least for me. But I’m sorry to say there are ups and downs. Glad you’ve got all the benefits stuff in hand but please see this if you can be bothered with all the other stuff going on.
In 2 hours and 20 mins (as I type - will be 2 hours 18 by time i’m done) it will be my 10 month ‘strokeaversary’!
In that rime I have ups and downs and sideways.
But let e tell you that despite my visual, physical and mental issues combined with a very annoying high BP episode for a week or so now, I managed to go and see 1/2 of a west ham game today!!
3 - 1 including an own goal? Seems the goal scorers were very cosmopolitan I don’t suppose any of them know Wanstead Flats or Hackney Marshes (My old kite flying haunts)
Glad you had super time - You should tell JP to get an account on here and then we Can get the inside gen (I assume that’s JP in the selfie?)
Well we left at 1/2 time so missed all the goals live but got back one min after they scored so happily missed that and then saw all ours! Well the goal scorers don’t but I certainly do!!
Grew up in Hackney until about 12 near victoria park and until a few years ago I lived on Capel Road - right on the flats!!!
I have tried to encourage JP to get an account - I will keep nagging ha ha
That is certainly not JP in the pic!! That is my WH mate Chris! JP is a villa season ticket holder and does his own football with his brother - he rarely misses a game at villa park and I’m quite impressed with his endless travel to and from brum. Fortunately his mother and brother still live there so he can often combine two things - family and football when he goes up north!
Yes we have to look on the Bright side of Life. I’m coming up three years now, was told from the start of this unwanted journey. Accept, Adapt and Adjust. I think I’ve done pretty well, struggled for first eighteen months, best forgotten . Improvements still keep coming in dribs and drabs. An example today desperate to get out after several days of rain. No physical problems just some loss of peripheral from both eyes and the flipping head. Walked to v
Oooops fat fingers, village post office to buy stamps. On way back decided to risk going down uneven new footpath unknown to me.After a few yards the heavens opened, visibility difficult as no hat , glasses blurred over, floundering around for bit, panic and anxiety. Kept my head, “come o you can do it !” Turned round and took it slowly back to road. Rain stopped, few deep breaths and I was away.Home for a well earned rest . I have been out walking without adventure or mishap. But this episode taught me I can do more than I think, so adjusting all the time
Well I have it dissimilar similar experience today .
I had to walk away from a ‘teams meeting’ twice because of my emotional reaction to its content. Most of the meeting I couldn’t control my right hand side from trembling.
It was a new one on me. Definitely a ‘because of stroke’ change.
I get the same thing with my right hand, I thought it was med related but it’s definitely a ‘stroke change’. I tend to find it gets worse when I am either tired or getting stressed.
@SimonInEdinburgh I learnt to ride a bike on Wanstead Flats and went to many fairs there. Born in Plaistow Hospital and lived in Forest Gate, off of Green Street.
. Improvements still keep coming in dribs and drabs. An example today desperate to get out after several days of rain. No physical problems just some loss of peripheral from both eyes and the flipping head. Walked to v