Husband's new brain bleed made him regress :(, severe anxiety, fear of heights... anyone else?

[CassandraDee]

My husband's anoxic brain injury from cardiac arrest happened 11 months ago. He's 69, living at home with me and our adult daughter. In some ways his recovery has been remarkable (he can walk, his speech and personality are intact, he even retained his musical gifts), but he still has very severe memory and cognitive deficits. His short term memory is about 2 minutes long, he has lots of crazy beliefs, he needs supervision 24/7 and lots of help with self care. His mood is generally positive, grateful, funny, sweet. We were getting used to our new normal with this husband/father who seemed relatively content with his disabilities and still continuing to improve. But then...

The latest heartbreak is that after a period of doing very well in his physical recovery, able to walk with no rolling walker, take the bus and subway with me, enjoy museums and restaurants... he had a fall a month ago. The blood thinners he was on made this really dangerous for him, we were in the ER and then an observation unit for 48 hrs until he could finally return home. (Damn blood thinners! His cardiologist finally said he could stop taking them.)

His CT scans revealed a couple of brain bleeds that have stabilized, but in the past few weeks the setback has been severe. He has increasingly extreme, panicky anxiety about being near any window above street level. If there's even any scene on TV involving a rooftop, an aerial view, a mountain, he is gripped with fear and has to look away. He's agoraphobic about going out at all, and is a nervous wreck whenever we go out to slowly walk even a few blocks in our city neighborhood with his walker.

Have any of you or your family members with TBI experienced increasingly intense anxiety almost a full year after the original injury? If so, what helped? And was it a phase that resolved on its own with time, and with (gentle) exposure to the feared situations? So many other things with TBI seem to occur in phases, I'm desperately hoping this is just another.

We do not want to treat it with anxiety meds because of the possible negative impacts on his moods, behaviors. (His neurologist agrees it would be risky for him.)

I feel so sorry for him :(. For both of us, as it has now severely restricted the things we can do together.

Thanks so much for any advice or support!

[cat3]

Hi Cassandra. I was housebound with panic attacks long before my brain injury ; they're truly terrifying and unresponsive to self discipline or reassurance. It wasn't 'til a friend took me to my GP and I collapsed in the carpark that my doctor got onboard.

I was referred for CBT which required weekly 12 mile journeys and, sounds silly now, but I couldn't cope with the journey. However, with the aid of Diazepam and antidepressants which target panic disorder, I muddled through and by the end of the 12 months was confidently driving myself to the sessions.

Those same meds saw me through loss of loved ones, breast cancer and the brain haemorrhage, all within 5years but with no panic issues. Sometimes, no matter how much counselling, support or common-sense is applied, it still isn't enough.

So maybe a low dosage of anti-anxiety meds would give your man the confidence to make those first tentative moves to prove his fears unfounded, and when he's stronger he can start regaining control.

Whichever course you choose.....wishing you both MUCH better days ahead.

Cat x

[CassandraDee in reply to cat3]

Thankyou, cat3! If this continues much longer, I’ll discuss this with his neuro. The thing that makes me scared is that in rehab when he was given ativan to calm down agitation, it had a horribly opposite effect, which I was told can happen with some people. He became extremely aggressive/restless. I wouldn’t be able to safely deal with that.

I’m so glad it gave you the freedom it did! Panic/anxiety are so cruel, the worst. ❤️

[Marnie22]

Hi. I am so sorry to hear about this setback. I don't claim to have any special knowledge but I wondered if the fall was so traumatic that it triggered these problems. I wondered if exploring this angle might be helpful.

I wish you both all the best.

[CassandraDee in reply to Marnie22]

Thanks for the thoughtful reply Marnie. It’s possible that’s a factor!

[WinB in reply to CassandraDee]

I had an SAH 4 and then 10 years later I had a bad seizure/fit not the ordinary one a strong one, so saw my Epilepsy Doc and told him I had a different seizure to any before and it was another bleed. Well to be honest I was like out of my mind Me/I had a chronic brain bleed I was dying I knew this for sure and I worried my self sick. Eventually I looked it up Chronic, a mild bleed~Acute a Major bleed..I told my Brother he did not help bless him he said "Well Win Chronic doesn't sound to good" Cheers Bruv..I worried myself silly until I read the above I was at the end of my life in Wins mind sorry but I know it isn't funny but I think of my behaviour at that time and can now look back and laugh. Well as long as I do not have another one !!! Good luck to your Hubs and if anything like me he thinks he is on his last legs. I wish him well and he gets back to his normal self. I cannot walk for long just enough to get dignity back ..Wishing you both well and it makes you realise we are mortal not immortal and it is scary ..Keep him singing or doing what he likes doing happiness and music helped me get better, did nothing for my poor family though ...Good Luck Both xxxxx Head up and Shoulder back Team work you can get him better xxxxxx We rely on our Family xxxx

[Pairofboots]

These are sadly relitively common symptoms following BI. Depression is also common. A neuro-psychologist and a Neuro-Psychiatriist may be able to help your husband.

I know in my case these symptoms crept up on me, would have thought a RNMH would have seen them coming. I have had a number of crisis, but luckily each time I have been caught, and am now relitively stable.

For your husband, these anxieties are very real, and as much as you try to help, this is one for the professionals.