Memory still an unresolved issue

I have an acquired BI. Having had epilepsy all my life, finally diagnosed in late 90s with Complex Partial Seizures, it could not be controlled by meds. Therefore, in 2003 I underwent an Amygdalohippocampectomy which has helped in so far that this with meds now helps control my epilepsy, though still get auras and seizures if exhausted or very unwell, and have secondary generalised seizures now too. Though it has in all been an improvement from having 30+ complex partial seizures a day. The downsides are, memory loss for a ten year period, ongoing medium and long term memory problems, tiredness/fatigue, and anger/frustration problems, coupled with severe depression. Has anybody whose been in same position still having memory problems, that seem to never get better, and if so how do you and your partner / family cope with this? It has been 12 years since my op now and I am still struggling with this area of deficit in my life, and have coping strategies in place like digital reminders etc. But it still makes life so exhausting trying to hold down a full time job while struggling to remember what to do and so on. I am recently new to this site and have found the posts and advice from others on here a relegation.

7 Replies

  • It seems the 'norm' after any BI for short term memory to be severely impaired. I've been using a computer diary + alerts plus hand-written notes and phone alerts for appointments.

    But there's a lot of simply 'muddling through', and I still hate it when people finish my sentences for me when my word recall lets me down.

    Depression is understandable considering all the issues you have on a daily basis. Are you having treatment of any kind for this Martin ?

  • I am having treatment for depression etc but so many contradictions with meds. Am getting help for this , but the poor memory and bad long term memory are still big issues this long after my BI, and as you say muddling through life, but not really living. This is very noticeable to my wife and family. Hey ho, I've struggled this long must keep going.

  • Has anyone suggested a referral to a memory clinic ?

    My BI was caused by a brain haemorrhage which was stemmed by the use of a titanium coil and has left me with various after-effects, including the memory issue.

    But whereas short-term memory is almost always impaired by BI, it's less common for long-term memory to be affected. I've no problem remembering events from before my bleed and way back as far as childhood.

    I know there are memory clinics (NHS) nation-wide, so do you think it would be worth following up on the idea ?

    You could try phoning the Headway helpline for more detailed information. It's a free call and the number is 0808 800 2244.

    I hope you can find extra help Martin ; it sounds like your quality of life could use a really generous boost.

    All best wishes. Cat x

  • Thanks Cat. Unfortunately it seems that the brain does weird mostly and sometimes wonderful things. I have been advised that it is something that I will have to live with all my lift, but after all these years is still difficult to adjust to and exhausting living with. It seems my brain doesn't reference its memories properly, so then has trouble trying to find and recall them or can't find them at all. Just one of those joys having an Acquired BI. Neurologists always say it's an improvement on having 30+ complex partial seizures a day. Wish I could agree but don't remember, but may be that's a good thing, but doesn't help present. Am glad I have taken to this forum so can discuss, vent and advise others.

  • Well it's good to have you with us Martin. It can be a welcoming place to come when we're feeling like 'aliens' in the world outside !!

    Be patient with yourself (that's rich coming from me). :-/ x

  • martin3 would you explain what you mean by partial seizures please? i have a genuine reason for asking

  • Sorry for not getting back earlier Steve, a lot of shit happening in my life at moment. I have complex Partial seizures where I go into a state of trance for 10 secs or longest 2.5 hours. I can not be disturbed from state, and come round not knowing where I am or what's going on. Hope this helps.

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