Memory loss, how to spell and what words to use....

[Nicole1]

I'm new to the site and have about 100 questions bottled up that I want answered 😂 does anybody else have trouble remebering how words are spelled? Or what words they are looking for when having a conversation with someone??? And you spend half the time going 'eh um, whats the word?? Do you know what i'm talking about?' And the person just looks at you like 😯 it's sooo frustrating!!! It's all down to the memory loss side of things to do with epilepsy, but I just find words are a huge part of my memory problem and it's getting worse... wondering if anyone else if the same... thanks in advance xxx

[6002athome]

Hi Nicole1, I know of three people locally who had problems with word recall amongst other symptoms on medication. For all of us the best option has been to take the medication and work on the word problem.

It took 3-4 years for me to regain a satisfactory level of word competence. At the beginning (when I first began taking medication) I lost the ability to spell. I couldn't even spell "on" or "the" and yes word recall was a problem. Never mind coping with all the other problems that come with starting AEDs: nausea, headaches, inability to focus or concentrate for more than 2 seconds on anything, a sudden inability to multitask. The feeling that you are constantly walking around in a grey fuzz. Grinning and smiling at everyone hoping they haven't noticed that you can't keep pace with their thoughts etc etc.

Re words the answer for me was to go back to all those early childhood games that teach you to spell. Over time words have been re-implanted in my brain. They have even just popped into my consciousness ( one of the funniest ones was "alopecia" meaning hair loss. It reappeared in my brain whilst I was talking to my neurologist. His hair is thinning).

Five years after those first tablets, I joined a word game my husband and seventeen year old son were playing. They had already played two sets and had notable scores. I joined the game and beat them easily.

It's been a long, hard, demoralising road but I'm a fighter and on this issue I have refused to give up.

You have my sympathy. I know how hard the journey was for me. These days my seizures are a rarity and I am still here.

I still use a spell checker. My neurologist is still losing his hair.

I send you my very best wishes.

[Nicole1 in reply to 6002athome]

That last part about your neurologist gave me a giggle, thankyou 😂 it's been 7 years since I was diagnosed and my meds r still changing in tablets and doses... nightmare. Seizures are very often. I google how to spell almost everything it's so embaressing (didnt check that one, don't care atm 🙊) it's the forgetting of words that's getting worse... honestly... just glad i'm not alone... thankyou x

[Slothlike]

Depending upon what aed you are taking, but many (Epilim carbamazepine etc) deplete folate, B12 and b6 over time. Symptoms of these deficiencies are short term memory loss, difficulty concentrating, peripheral neuropathy in hands and feet, nausea, headaches, fatigue. Long term depletion of these can also affect a whole load of other things in the body as well. Deficiency can be avoided by taking supplements. There are quite a few published papers on the subject. I've only discovered this after 40 years on aeds. When I first started supplementing the brain fog lifted almost immediately. Might be worth considering?

[Nicole1 in reply to Slothlike]

I'm currently on 2 doses of keppra, 2 doses of zonisamide, lamotrogine, fycompa and clobazam... I was prescribed vitamin b12 supplements for a deficiency but to be honest don't take them 🙈 my bad... I hate taking all these tablets! Maybe I should be taking them. Thankyou 👍 x

[Slothlike in reply to Nicole1]

Your welcome I would recommend taking a strong B complex once or twice daily and if this isn't doing the trick look at topping up your B12 with sublinguals or transdermal oils (the latter is expensive). Its important to take folic acid with the B12 otherwise you will feel awful. I have no feeling in my hands or feet as a result of this so it definitely is worth taking.

[6002athome]

Hi Nicole 1, I hated the idea of taking tablets too but eventually got over that one. I ate marmite daily for B12 and folic acid. I guess I got bored with eating it and stopped without realising it. I began to fall asleep all the time and eventually went to the GP as my husband was complaining about my lethargy. It's true, I'm not a good conversationalist when fast asleep. I didn't mind falling asleep at home but it was becoming problematic on buses.

My red blood cells were suffering and so I'm back to eating marmite or as a backup I now have B12 pills in a jar standing on the side as an alternative. The husband has stopped complaining and between emails does talk to me. Best of all I stay awake and can get off the bus at the right stop.

[meckford]

Hi Nicole, For me it seems the poor long-term memory was due to the seizures and the short-term 'cos of the carbamazepine. After 25 years I eventually stopped the meds. as my seizures are not helped by it. And then I noticed my brain fog lifted and short-term memory improved and I can add numbers and spell words.

[Cavallo]

Short term memory appears to be getting worse. Also find it hard to focus and concentrate.

[Lj08]

same thing happens to me I have started doubting my intelligence and keep thinking it's because I don't know as much as everyone else or I just can't hold a conversation like everyone because of my lack of knowledge, I know it's my memory but epilepsy is also stripping my self esteem

[Nicole1 in reply to Lj08]

That's exactly how I feel. It's so hard. Bloody horrible.