New to group

hello, i am new to the group, just had my 3rd TIA SINCE LAST AUGUST, TIA WAS CAUSED BY ARTERIAL FIBRILLATION LAST TIA WAS YESTERDAY17/8/19. BEEN PUT ON APIXYBAN,I STILL HAVE ARTERIAL FIBRILLATION AND  I FEEL SCARED AND ALONE. I AM AN AGENCY WORKER AND I HAVE TO RETURN TO WORK TOMORROW 20/8/19. THOUGH I HAVE BEEN LUCKY AND HAVE NO PHYSICAL  SIGNS OF A STROKE I CAN'T TELL THEM I HAVE HAD A STROKE THEY WOULD DISMISS ME AS I AM AGENCY AND HAVE NO CONTRACT OF EMPLOYMENT AS I AM A TEMP I HAVE BEEN A TEMP WITH THE SAME COMPANY FOR 18 MONTHS,THEY ARE STILL UNAWARE THAT I HAD A TIA LAST AUGUSTI ONLY HAD 1 WEEK OF WORK, I WAS OF WORK ON FRIDAY  WEN I HAD A TIA AND WENT TO, A AND E ,I WILL BE IN TOMORROW BUT CAN'T TELL THEM THE REAL REASON I WAS OF,I HAVE TO DO 9 HOUR SHIFTS 5 DAYS A WEEK.I AM FINE PHYSICALLY APART FROM THE ARTERIAL FIBRILLATION BUT I DONT FEEL WELL MENTALLY

Hi james, i really think you need some time off to recover and deal with how you are feeling. Do u not have any hols you can take just till you get your head around what has happened. We are all here when ever you need to talk. Ayisha.

I just want to be positive and get on with my life. The stroke has really affected me in all aspect.

I would like more positive signs. I am an intelligent man and know what is required I need motivation but struggle badly with fatigue.Constantly tired and permanently frustrated with this bloody stroke .

Any suggestions I haven't tried.

 

 

Hi Vince,

Sorry to hear you're struggling with fatigue. Not sure what you've tried so far but I've found that going to bed between 10-10.30pm way earlier than I used to has really helped, also I do this 7 days a week and get up at the same time every day 6.45 - 7.30am definitely feel much better for this. I also found "A letter from my Brain" really good,( Google). Best wishes, Katy

Hi I too feel that you need to take some time off, going back to work so quickly is really not a good idea, especially with the way you are feeling.  I know that there are financial implications but youre health must come first. I would get advice as to whether you can be dismissed after a stroke even by an agency.  Also consider others who you may work with and what would happen if you had another one, would you be putting yourself or them at risk.

 I had a year off after my stroke and have only been able to return to work 2 mornings a week, and I still get stroke fatigue etc.  Even though you are on agency, you can ask your doctor for a sick note and claim ESA,  I was put in the 'Support group' so will get this until I retire, and you can do up to 16 hrs a week without it being effected.  You can also apply for PIP, this together with the ESA covered the loss of my wages.  It takes time but it is worth it.  You can get a stroke councillor to help you with the forms as they know exactly what to put.  Ring the stroke helpline and ask to be put in contact with you local one.  
Stroke has long term effects, you are different now and have to learn how to deal with it not just physically but mentally.

Please don't rush back too soon you could be making things worse.  Keep us posted. Wendy

Being positive is the main thing. And smiling a lot.

Our brain needs rest whilst it mends the pathways. And plenty of water.

We arent going to "get better" so I like to major on how to live a satisfactory life. We are new people and that is very hard to accept.

I have reduced the stroke fatigue by ensuring I get a good nights sleep (for me this is 7.5 hours). Then I let my brain rest several times during the day. This does limit my activity and for me that means just 45 minutes then rest. The best tip for me was to have a rest shortly after getting up. I wash dress make bed (struggle struggle) have breakfast then I sit in a quiet place and relax for thirty minutes.

I accept I am not going to return to pre stroke. But I have some life as the new me. Yes it is hugely frustrating. 

I am an FCA so I did plenty of tax, pensions, investment and estate work. I am still an FCA but I cant do any of the professional work. So I make tea, clear tables and do the tiniest voluntary admin job. At least I am being useful to society.

It has taken a long time to explain that I cant do what I used to do. I think I am there now, with new friends (very few) and a totally different life. I potter around the garden, i make a huge fuss of my cat and watch a lot of TV.

I keep a diary to monitor the level of SF. It is easing, but very very slowly. 

Medical science is making some forward strides so maybe one day there will be a breakthrough.

best wishes

Colin

 

Hi Vince

Don't know what you have already tried but I found it frustrating after mine so I work on the principle that my brain is busy building pathways to replace the ones I lost.  That is one reason I am tired, I suspect another reason is that my blood pressure is down which my body also has to adjust to.  I have worked hard on the pathways, the things I couldn't do I have kept on trying and they seem to be getting better.  It isn't as quick as I like but definitely better.  If I get tired I stop and rest for a while and then go back to it.  I have used all sorts of things to help like using an app for anagrams which is helping with word skills and touch screen things, using a roller to help the pins and needles in my feet, using a squeeze ball to help with grip etc.  I suspect we all have very different experiences and needs.  I think you need a little patience and time but I am sure you will get there.

hi thanks for your response I had my first TIA last august I returned to work after 1 week, and have been working 9 hours a day 5 days a week since then, I felt unwell last Friday and after going to the stroke unit was told I have hade a further 2 tia,s one last Thursday and 1 on Friday   .i was off work on Friday and I stayed off today Monday. I have to go back to work on Tuesday, I have no signs of any type of stroke BUT am soo tired. and do feel ill mentally  I feel like a fraud really as i have not had a REAL STROKE (Thankfully).Allso my partner works so we would not get any benefits we have tried to claim housing benefit in the past but it was rejected even though we are both on minimum wage, Also as a temp I have zero employment rights and I know if the company knew they would just tell the agency not to send me back even though I have been with the same company for 18 months  I know for a fact the agency I work for will be totally UNSYMPATHETIC their loyalties are with their clients, not THE WORKER.   Jimmy

Dear Jimmy

OK you didnt have a "full" stroke, thank goodness. But that doesnt make you a fraud. TIAs are just as variable as other types of stroke. Some are bad and some not so bad. 

I understand the big difference is that a full stroke leaves part of the brain killed off whereas the TIA doesnt. 

I also understand that TIAs can be a warning. You really, really do not want a full stroke, so please take your bodies warning. Get some relaxation, reduce your stress. Adjust your diet a little, get sensible exercise and make sure you get a good nights sleep every night. Watch your BP.

We really should have a section for TIA sufferers so that your issues can be raised and discussed. I believe the definition of a TIA varies from hospital to hospital, or at least it did three years ago.

best wishes

Colin

 

 

hi  thanks  tia do cause  some damage to parts of the brain NOT as much as a full-blown stroke i saw this after my ct scan  and i have had 3 tia,s my tia,s were caused by arterial fribulation which i still have so my risk is still high,I am now on apixaban and ramipril 

Hi Vince. How you feel is common to most of us and being positive and intelligent will help you no end. I am now three and a half years post stroke and have learnt a lot. Firstly fatigue....in the beginning it was dreadful and I had to sleep and rest a lot. I learnt that I had to listen to my body and not try to work my way through it. Fatigue is little understood and probably under researched. I suspect it is the brain’s response to over stimulus. That said, mine comes on every day about 11.30 am, when I have only been up four hours. I last till about 1pm then rest in bed for an hour. I can then last till 11.30 pm. Stress seems to make fatigue worse. The best advice I had was to rest for no more than an hour and try not to go into a deep sleep.

Positive signs often go unnoticed until spotted by others. I always try to remember that my starting point was being hoisted in and out of bed and having to learn to walk again and tie my own shoelaces. Every small step forward required all my grit and positivity. I still go to three exercise classses a week whether in the mood for exercise or not. I am now going to physio for my weak left shoulder and have to exercise that three times a day.

Today, I do not have life I had, but I do have a life. I cook and bake, go out sometimes and go on short break holidays. I do have down days and bouts of anger and frustration, but I can also laugh at myself and my ‘accidents’ when I break cups, bowls and glasses or throw frozen peas over the floor by accident.

You will improve and you will see improvement, but it will be much slower than you imagine and others do not always help. They will tell you you look well, when that is the last thing you feel. They are also surprisingly uninformed abou Stroke, But then so was I before I had one. Just keep working at it and good luck to you!

 

Dear James

Thanks for your reply. I am interested to hear that there is a visible damage after your multiple TIAs. It seems the definition of a TIA is vague and varies from hospital to hospital. Was your damage on the surface of the brain ? And did it show up as a white area ?

There is no doubt that you could be at risk and so you need to watch your BP etc. Please dont become another stroke victim. You have suffered enough.

Best wishes

Colin

Hi , I had my stroke in march this year so still early days .I wrote a journal and every step of progressed I took down . Which I find helps a lot for the times I see no end and feel like I'm trying to get up a flight of stairs that will never end. Looking back from being hoisted and now taking steps with no stick at home . I feel like the journal shows me my progress . You could ask the hospital for your notes . Have somebody go through and pick dates of your progress   like my first movement was the 18th a flicker in my thumb . Just keep at it . I hope this helps 

hi yes  it did show white areas on right side of the brain, not as severe as a full-on stroke and recovery is quicker  the brain finds new pathways faster than with a full-on stroke  a TIA is a mini-stroke and they always know if you have had a tia by doing the ct scan it shows any changes to the brain as with a full-on strokes.I am just home after a 9 hour shift 3 more days then a long weekend YAYYY, PS I Don't subscribe to the people who always blame stokes on lifestyle.mine was caused by arterial fribulation i eat healthily I am a vegetarian I cycle to work etc,I just lost my cat to a stroke he had the same condition as my self the erratic heartbeat etc he got a clot in is spine so was paralyzed in both back legs I don't think he ate unhealthy or smoked etc..Jimmy

HI again as far as i am aware the brain damage or cell damage in both tia and full-on stroke is irreversible but  is more severe and recovery is much longer with a full-on stroke  I have post-stroke fatigue even though I only had TIA   Thankfully no disabilities through after my first TIA on my left side I could not fasten buttons etc unlike a full-on stroke  my arm returned to normal over a few days as the brain found new pathways as with a full-on stroke it takes longer after a full-on stroke as the brain or cells damage is a LOT more severe  this is all new to me but i think this is right and is what the stroke specialist explained to me.      Jimmy

I had my stroke in 2017 with more than one cardiac arrest 50 minutes later. The stroke caused a hypoxic brain injury and I was on life support for nealry 72 hrs. I am the only person known at the hospital that has survived this event and I walked out 10 days later on my own with family. I have to this day no recollection of the events at all. I returned to work nearly 5months later. I am still seeing a clinical psychologist and will be doing so for awhile. I have attended official stroke research seminars and events and have met what are now firm friends. I am currently doing professional educational courses involving neurology and dementia. I am extremly lucky and have since found out that I have had many strokes in the past. As a former elite athlete in my sport of choice I have used the resilience to survive and overcome many obstacles. My heart rehabilitation has been an excellent progression to being now 13 minutes on a treadmill and the next stress test on my anniversary month for which I will push to the magical 15 minute mark. I do still have emotional issues which I am addressing positively. 

I am an extremly lucky and resilient person.

 

 

Hi and welcome - nice photo too! You are indeed an extremely lucky person to have come through all you have and returning to work. As a former athelete, this will have had an impact on your recovery. I was also told that because I was 3 times a week at the gym and weightlifting prior to stroke,  this would  aid my recovery too.  I have no doubt that you will achieve you 15 min treadmill walk - well done 

You're spot on!  A diary/journal/log of any achievements is vital.  I kept one for my husband, even though I'm the one who uses it for reference.  It's so easy to forget things, but the journal doesn't lie!!  Lots of phones/computers have a voice recorder function if typing is too challenging.  Many SSs would recommend keeping some kind of record - and as you've discovered it's an invaluable tool ?

Good luck xx 

Hi, well done for all you have achived since your stroke. Good luck with your 15 min tredmill walk. You will have to let us know how it goes. We are always here if you need to talk. Ayisha. 

Dear Jimmy

I totally agree about the lifestyle. Most of the survivors I write to were fit and healthy before stroke. Perhaps its a case of only us fit ones are likely to survive a stroke.

I am surprised that your diagnosis is  a TIA when you have the white area indicating dead brain cells. I believe that different hospitals diagnose TIAs in different ways. Maybe your recovery is exceptionally fast and thats a very good thing.

I never had any pets. But about 20 months after stroke, a big black cat adopted us. I now love that cat to pieces. He comes to us each day and he likes to nuzzle up for a while. He asks if he can have food and we feed him the best we can. The great thing is that he accepts me stroke and all. Humans dont seem able to do that ! I am truly sad that your cat has passed on.

When I awake I often have creaky joints and muscles. It is hard to motivate when so many bits of me hurt. However, I dont think of myself, I think of my cat coming home for food and sleep after a night roaming. This motivates me and I am keen to get up and see him. 

Perhaps you can allow another cat to adopt you. They are amazing creatures arent they.

Best wishes

Colin