Newbie Stroke recovery and hole in heart

I am not sure if this is the best place to post but I have has no replies in stroke

I am 5 months post stroke and feeling anxious at how slow recovery is. I am age 40 and the stroke 4 months after having a baby.From a medical point of view they consider me doing really well. The stroke mainly affected my vision (reduced colour and sharpness)and balance and I have also have fatigue with anxiety and general head fuzziness. What concerns me is that most doctors say 6 months is when most imrprovement takes place. I appreciate every stroke is different but I would like to know others experience, with 2 children to look after I need hope things can still improve

I know I am lucky to have full motor function but I cam find little information on the symptoms I have. Finally my stroke is due theythink to a pfo ( small hole in heart) which is due to be closed in a month,does anyone have experience of this?

thanks

CEREBROVASCULAR DISEASESTROKE

24 Replies

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  • Ring the helplinenuber at top of page.Fatuige can last years,nap with youre little ones and try to be paitent with youre reacovery,Oh and welcome

  • Thanks, think I've held things together so far, but just had a crappy teary day. People just assume I'm OK because I look OK x

  • hey dwood question for you.........how long after giving birth did you have your stroke ? and on a more personal basis have you had any miscarriages?

    steve

  • Hi Steve I will near that in mind 😀 it was 4 months after and yes I have had miscarriages, I have a blood clotting thing fvl. Wouldn't normally cause a stroke but with the hole in heart it has x

  • dwood you may have whats known as sticky blood or you may have some thing else. have you heard of hughes aps.

    look for their website and say george gave you the details

  • No its factor 5 leiden I have, but thanks for info x

  • just read your other post.......my new favourite saying, memorise it and quote it to people who piss you off........disable isnt always physical.

    asda actually have that on their disabled toilet

  • It can be so difficult coping with other people's assumptions that we're all better when we're struggling so hard just to get through each day.

    It does seem to get easier D, if only because we adjust to our new limitations and learn to expect less of ourselves. But if you want to persuade others to expect less of you, you have to keep reminding them 'til they finally get the message.

    Have you got hold of all the appropriate published information on Stroke from Headway ? If not, maybe you could phone the helpline and ask them to send it to you. The call and the leaflets are free and the helpline ( 0808 800 2244 ) is available during office hours.

    It might be useful to pass this printed information around family and friends so they have the official version of what life is now like for you since the stroke.

    6 months is early days ; I hope, with more time and practice, you'll start to adapt to the changes in your brain and the changes they inevitably bring to your daily life.

    And with 2 young children D, take all the help you can get !

    Best wishes, Cat xx

  • Thanks cat, I will contact them, I had heard of them by didn't realise they covered strokes. I know I need to be more patient.

  • Yes D, Headway cover any type of injury, whether physiological or traumatic.

    You'll find the person at the other end of the phone very easy to talk to, so don't hesitate to call. xx

  • Hi.

    I had my Stroke in 1998 at the age off 32, "yes yes" I was told the same.

    But belive me I have ticked every box 100+ Times overe & over !!!!

    It has been 18yrs now & yes I'm still making Improvements.

    The Improvements will only stop once we have finished looking.

    Please let me know if I can help you further.

    Steve.

  • Thanks Steve, I think I have focused too much on these timescales. I just need that hope that things can still improve to keep me going x

  • Hi.

    No probs, yes just keep positive & don't worry about what they have told you "belive me"

    Things may times but you will get there in the end !!!

    I had a very long list off "No's"

    But I did all off them !!!!!!

    This is the "Biggest" I was told that we would never have any more children ???

    But "Yes" We Did !!!!!

    Steve.

  • Think I'm definitely done with more children lol! But glad u managed to achieve this x

  • Hi.

    I don't blame you with the kids that was top off the list off Noooooooooooo's

    I did return to work.

    I also returned to driving as well.

    Please let me know if I can help you ???

    Steve.

  • Thanks again Steve. I do feel that it is helpful hearing over people's stories / recoveries especially if there is a positive outcome. X

  • Hi.

    No probs.

    Hearing others stories is the best "med" belive me

    Please let me know if I can help ???

    Steve.

  • I was experiencing visual improvement well past six months. My patch came off at about 7 months. It is still not bang on 6 years later though. The fatigue will get better but there is no gaurantee it will go completely.

    Cat is right, learning to be able to expect less of yourself will help enormously, and getting that acceptance from family/friends will be important. Particularly with babies to be looked after!

    The headway booklet on parenting with head injury and neuro fatigue/how to manage it are great. Do get them and show them to important people.

    I think the six month timescale doctors band about is somewhat out of date and is perpetuated by the fact that physio's have this call it a day because of budgets. It becomes a self fulfilling prophecy. Years on I was improving but I also know set backs are not uncommon and if I overdo it I waste myself for several days.

    The more you put in to improving the more you will improve but you need time and energy to do that so ensuring you have adequate support with childcare is vital. Rest and sleep are critical to help the brain re connect your skill pathways. No one would walk on a broken leg, it's just the same.

    Re the PFO: you could take a look at the different strokes group and the Somerville foundation. Lots of experience there with issues and closures. A PFO is congenital heart disease and the SF is a good group.

    C x

  • Thankyou so much for your response,it means alot. I have felt I have coped pretty well but have just felt so overwhelmed by it all the last few days. I know I need to be more patient. X

  • Hi D, there is no time limit with your recovery....it is a journey lasting much longer than six months for sure. I had a brain haemorrhage ten years ago, aged in my early forties. Like you I had vision impairment, balance and fatigue issues. The barrier to becoming well was dealing with others unrealistic expectations. Many times in my first year of recovery, I was reduced to silent tears through sheer frustration because I looked well but still had a foggy brain, depression and anxiety. It is the invisible symptoms that is overlooked by the general population which then becomes a real barrier to coping with the changes. But it does get better. When you learn that you cannot change people's perceptions, no matter how often you inform them of your current limitations. It won't change. In saying that, I am still getting better with each passing year. Sometimes it is protracted and have learnt to pace myself and be kind to myself and value the power of saying 'no' to unreasonable requests and accepting help with gratitude. You have made the most important step of your journey by reaching out to everyone here on this forum. A warm welcome to you....Claire

  • Thank you so much Claire. It means alot hearing from people who get it! Can I ask if the fatigue and anxiety improved over time?

  • Yes.. it is something that I have learned to manage through lots of counselling, daily walks, good nutrition and plenty of rest. However,sometimes the anxiety and fatigue will catch up on me if I do too much on any given day or if something is worrying me. The next couple of days will be spent feeling fatigued ++.

    D, do you have supports at home i.e family/friends? The good news is that there is absolutely no time limit on your improvement. How long is a piece of string?!! Claire

  • Thanks again Claire. I do have good family and friends but I feel it is hard for them to understand what I am going through although they do car. I think alot if the anxiety relates to the lingering symptoms that the docs are not to concerned with. I have tinnitus and buzzing in my arms and legs. A gp said to me they would go away if I stopped thinking about lol! I will take on board what you have said and I am glad u have improved. Did u mange to go back to work?

  • After 12 months, I returned to my previous job with reduced hours. Four years later, I ceased working. By then, increasing work load was unsustainable. It was my decision to stop work. Nowadays, I just take care of myself and my gorgeous pet dog. Hope your health improves with time. Your GP sounds rather clueless! Claire

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