Hi, I'm new here

[Dory2016]

This forum was suggested by the headway site but I am unsure how it works 😕, advice welcomed. Thanks D

[cat3]

Hi Dory & welcome. Can you tell us a little bit about the nature of your brain injury and when it happened. Also, what after effects do you have, e.g. memory problems, headaches etc..... ?

Regards Cat x

[janb777 in reply to cat3]

Cat, You always give good advice to everyone. You are a very kind, lovely and a very special person. I thank you for your replies to me, it's made me not so alone. Thank You JanB xxx

[cat3 in reply to janb777]

Oh, I was just about to close the lid & turn out the light when I saw your comments Jan. How lovely that you should interject with such kind remarks............................thank you so much ; they're really touching.

Sending you a great big cyber-hug ! Cat xxx

[Dory2016]

Hi Cat, thank you. I was trying to work out how this site works...I think I've got it lol. Ok I sustained brain injury in a car accident (double shunt). It has taken quite a few years to obtain the correct diagnosis as my original lead doctor was inclined to out everything down as anxiety -even though I wasn't feeling anxious at the time. Since then I've been referred to some helpful doctors. I just had neuro cognitive testing due to short term memory problems etc. I am struggling to manage pots-postural tachycardia that came on after the accident. Fatigue is my biggest battle. I sleep well. 7-8hours a night. However any day activity triggers the need to sleep an extra 3-5 hours depending on intensity. If I fight to stay awake my vestibular system goes hay wire, I get sick and feel hungover the next day. I'm just looking for tips to improve pacing/fatigue. I've accepted everyone is different and my body still needs more time. Feel sad sometime as I've lost much of my former life.

[cat3 in reply to Dory2016]

Can I ask whether you got a definitive diagnosis I.e. Coup/ContraCoup injury or concussion ? I ask because so many people feel a sense of relief just knowing the exact nature of their injury.

Mine was simple to understand ; a bleed on the brain, otherwise referred to as a Subarachnoid Haemorrhage.

But most brain injuries bring about the same sort of after effects so you'll find loads of empathy & support here. I can tell you that fatigue/exhaustion/sleeping lots are right at the top of the symptoms list !

It's good to know you're getting the appropriate testing at last, hopefully leading to further therapeutic treatment in the future.

I haven't heard of post-postural tachycardia ( assume it's a result of your accident ?) but I suffer from Super-ventricular tachycardia which is now controlled by medication............ after many years !

Anything you want to ask, ask away. See you later.

Best wishes, Cat xx

[Dory2016 in reply to cat3]

HI Cat

Thank you, yes my initial consultant explained Coup/ContraCoup injury and felt I had diffused axonal injury although no bleed on mri my symptoms were severe. he hoped i would fully heal but recently another neurologist has confirmed my ongoing cognitive deficits are due to a subtle brain injury. We are waiting for his report and recommendation. The head injury triggered vestibular dysfunction (balance etc) and visual vertigo (meaning my brain assumed my spatial orientation mapped to what ever I was looking at). I have a year of physio and it improved but the increased activity highlighted the limitations caused by postural orthostatic tachycardia - also caused by the accident. Basically my heart is running too fast. I can get it as low as 75-100 beat per minute sitting but when I stand it can shoot to 155 beats per minute standing still. In the shower after the pool it hit 198bpm and walking up a hill 200bpm. I've has a rough time trying to manage all 3 for several years without diagnosis and now the treatment appears to have been not in sync with the combination i have. Recovery has been 1 step forward, 4 back, try to shuffle sideways and keep going! phew.

Your bleed on the brain sounds scary, glad you seem to have recovered (?). Is your tachycardia related to your brain haemorrhage? How is your medication working - do you have side affects? I hope you feel much better.

Dx

[cat3 in reply to Dory2016]

No Dory, a brain haemorrhage isn't something you recover from ; more a case of managing the after effects and adapting to the changes such as short term memory loss, mobility & balance issues etc. ..................not complaining though ; it's the same for most of us.

The tachycardia started over 20 years ago, so long before the bleed. No one knows the cause, just that it's a sort of short circuit in the heart which sets it racing (for hours) to150+ beats per min. I was initially told that ablation was the only option (cauterisation of the affected area) but after asking for a second opinion I was prescribed Flecainide, which has worked like a magic potion !

I'm pleased to hear that you're being taken seriously at last and having the investigations you need. It would be interesting to hear what the neurologist has to say ; please keep us updated Dory. xx

[Dory2016 in reply to cat3]

Hi Cat,

Thank you for taking the time to explain this. I'm starting to see how although the diagnosis may be different , some of the symptoms are effectively the same (in some ways). Ie fatigue etc. I nevee people's hearts could beat so fast without a known cause 😔 but I'm glad your medication is working.

All this is helping me to see my condition differently. I was so adamant that I would fully recover because the initial feedback was that I would. It's been painful gearing myself up for different therapies , exercises etc only to relapse and deteriorate. I'll wait for the new report but judging by his demeaner I may well have to learn to adjust. That is something my family and friends will struggle with too. We'll see.

[cat3 in reply to Dory2016]

Dory, the fall-out from our brain injury affects everyone connected to us ; family, friends, work colleagues, employers etc.,etc......

And often these people refuse to accept there are issues as, unlike in many other conditions, most of our disabilities are invisible.

But here we only have to look at ourselves to know what our friends on this forum go through on a daily basis ; it's a safe place to come.

Night, night Dory. xx

[Dory2016 in reply to cat3]

Many thanks again Cat, much appreciated.

Night night xxx

[Hidden]

Hiya welcome dory,

I just joined last week and am figuring out as I go, but so far a warm welcome and easier to use than my online banking system that's for sure! Invaluable for me so far to have somewhere to 'go' for friendly audience who want to help.

Also a fellow fatigue sufferer and I'm sure many in the group will relate to a lot of what you've shared with cat. I can have 1 hr sleep and feel great or 16 hours and feel awful. After a lot of experimentation I like mindfulness meditation to relax and try and pace as much as possible. i dip badly after lunch and lie down for an hour or so whether I manage to sleep or not. I've recently found sugar and caffeine are not my friends although I don't exclude anything entirely from my diet for my mental health (plus I'm a chocoholic!) except alcohol.

Find gentle exercise helps and very short bursts of aerobic when I can manage started at just minute or two and building up gradually.

Patience really is a very hard virtue to come to grips with I find!

Warmest wishes,

Fiona

[Dory2016 in reply to Hidden]

Thank you kindly Fiona. Yes, as you mention it I think i need to include more gentle exercises. The POTS doesn't tolerate aerobics at the moment. Mindfulness is great plus a nice salt bath before bed. Speaking of which I'm heading off now. Hope you have a refreshing night's rest.

kr

Dx

[cat3 in reply to Dory2016]

Night night both of you ; sleep well. xx

[Elenor3]

Hi Dory,

Welcome you've come to the right place. As previous replies have said......everyone here understands fatigue and all the rest of the various symptoms of brain injury. The forum has also been a life line for me, particularly at darker moments. However isolated you may feel, even if surrounded by a supportive family, someone here will have first hand experience of what you're going through and will offer advice. I'm so thank ful that it was recommended by my neuro team (even if it took me four months to understand what it was about and how it worked before I managed to make a post!) . Wishing you success with your new doctor

[Dory2016 in reply to Elenor3]

Ah, many thanks. I had no clue and yes can definitely use the support. Feeling a bit lost, confused and isolated with condition note above to Cat.

Hope you're feeling much better

Dx

[MXman]

Morning Dory & Welcome.

Fantastic forum with like minded (literally) people who you can share your problems with. Have a fantastic Monday. Nick XX

[Dory2016 in reply to MXman]

Cheers Nick, great to hear that 😊