Exactly 5 months post stroke today. Still waiting on pfo closure but plenty of improvement, less anxiety too up until this week. Not to sure what has triggered it. No appetite, weird feelings in my head such as ‘zapping’ or ‘glitching’ sensations that I thought had healed. And tiredness is back that I haven’t had in a few months.
Also ever since stroke I seem to have ent infections every couple of weeks which I never had before which I found quite odd as of my knowledge I didn’t think a stroke could have that sort of effect when it comes to that.
@orla3333 I can sympathise with the anxiety and long wait for PFO closure. I too am waiting, 7 months on (I only just received the letter confirming I have met the guidelines for the procedure 3 weeks ago!). I am sure all of those in our position could do with just one thing less to worry about. I definitely feel as though I have hit a brick wall, both physically and mentally, perhaps it is doing too much but I too have begun to feel more tired and quite frankly, feel like I have less fight in me. Hopefully you can stay strong and the op will happen soon, and another milestone will have been passed.
At 5 months You’re ripe for some of the emergent secondary compensations that can happen. We’re told that typically they start 3 to 6 months after (and can happen at any time even years after) - so that’s one possibility
On the ENT front do you have any swallowing difficulties? That can lead to various infections relating to the airways and it’s all connected. Also energy will be being consumed clearing up your head so are you having a good diet or are you a little rundown? Or Might be your meds? Could be anything and it could be unrelated to the stroke!
Post stroke really is like buying a £100 car full of rattles and no manuals and no way of knowing if it’s significant
Can you explain your glitching zapping head further?
I get Spacey moments all the time and I found out this week by seeing a consultant in the hospital that I have progressive infarcts & bleeds that are in my medical records but I was never told before (they’ve been going on for maybe 10 years ) So I get a feeling and it’s now I know that it’s something but for a long time I had got no useful information from the GP probably because it beyond their a level of knowledge/interest
The tired / fight could again be many things. There are expected to be different mechanisms involved in fatigue initially and long-term. That could be something that is emerging. I too suffer around this and I’m going to talk to the GP about an SSRI - I’ve been a very anti considering them because of their folklore but I’ve seen several posts on here saying that they help - so time to investigate for me… I’ll let you know… Maybe something for you and @Rufus to consider too
Hi @Rufus thanks for your reply! The waiting for the closure is the worst. I was told I’d be on the urgent list due to my age as I was due to start university in September but now have to repeat year 14 instead. It was meant to be sometime in March but there was no word of it. Feels like once I do get it it’ll just be a relapse and having to take further time off from school then being in a worse position. Hopefully now that you’ve met the guidelines you will get it soon and that will be another thing ticket of the list in recovery! Take care and keep us informed!
Hi @SimonInEdinburgh should I be worried about the emergent secondary compensations? I only ever had a slight discomfort when swallowing around the time of the stroke but it only lasted short term. Not gonna lie my diet could definitely be better it’s quite hard when I’ve got no appetite but I could definitely try to improve it.
The zapping and glitching in the head I feel is quite hard to describe. It’s usually one sensation at a time then it seems to signal sort of a warm tingle around my head specifically behind ears and back of head around neck. The first time I had ever experienced it was in a nightclub about a month after the stroke (probably wasn’t the best place to be). At that time I think the orb lights added to it and made my vision quite blurry, very nauseous and shaky and I nearly passed out but was fit to get a seat and calm myself it was quite scary.
Since then I have been to specsavers and to the nhs orthoptics who have both said my vision is perfect and not effected my the stroke. Therefore I’m still unsure of what it was and it puts me off going out which isn’t the best feeling at the age of 18😅.
I’ve also got a taylor swift concert coming up at the end of June although I’m excited I always have the thought of what happened in the night club stuck in my head. We are seated at the concert which is helpful but earplugs and sunglasses might have to be considered for that over 3 hour long concert😅.
I’ve never heard of SSRI but I may read up about it. Thanks for your reply and I hope all goes well for you with your gp while trying to manage fatigue.
The secondary impacts that can occur basically at any time but have a more common onset from about 3 months can be quite severe and I think stroke thrivers should be advised about the possibilities. One of the worst is central post stroke pain and I’m sure everyone here would join in praying that CPSP does not affect you.
So yes you should be aware as being unaware can be much more scary and you should not expect to have them.
If you can handle nightclubs and concerts then you are lucky / doing well.
I wouldn’t worry about repeating years of school Indeed I would make the most of it there will be plenty in time yet to do all the things you imply being impatient for as you progress through your 30s 40s 50s 60s etc
SSRI stands for selective serotonin reabsorption inhibitors. They maintain a higher level of serotonin in the brain one of the labels used for the metre antidepressants which is a bogeyman terminology for many folk.
@orla3333 as Simon has said you can get some re-emergence of your stroke symptoms after time quite possibly because we all start to dona little more & our brain has to adjust to this again.
I’m not sure if it’s the same thing but I get what I describe as brain zaps. It’s almost like an electrical impulse that goes from one side of my head to the other. Sometimes accompanied by a pressure feeling & a involuntary head movement. I tend to get them at night mainly. I did mwntion them to my stroke consultant & he looked at me like I had gone mad. I guess i’m sort of used to them now.
@Mrs5K yeah I think that’s the same sort of pains I get in my head. I’m awaiting an appointment in a few weeks to talk to my go about all these symptoms but I’ve got a feeling I’ll just be told that it’s the healing process which in some cases it probably is.
I had thought that at 5/6 months post stroke that improvement would be slower but wouldn’t get as bad again. I may read into this central post stroke pain and hope that i don’t receive it
I was told I was not allowed PFO closure until a minimum of 6 months after my stroke but more likely 9 months due to the risk of a second stroke and having to stop blood thinners before operation but I also have 2 AVMs that need treatment too xx
I was doing ok in the first six months but keep having decompensations whenever I am tired. Im waiting for various appointments as well which causes us all anxiety… everything takes so long! I also have been having alot of problems with my right ear (my stroke has affected my right side). I think everyone will agree that worry/anxiety causes alot of our problems as it uses alot of energy reserves. Hope you start to feel better soon, be kind to yourself and rest when you need to.
) So I get a feeling and it’s now I know that it’s something but for a long time I had got no useful information from the GP probably because it beyond their a level of knowledge/interest
as you progress through your 30s 40s 50s 60s etc