Advice please

[LLWins]

Hi,

This is my first time here. My story is rather long so I will try to condense it.

So about a year and a half ago I had this series of 'events'..... It was heart, blood pressure etc etc, also memory troubles. They tested everything heart related, and all ended up testing fine. Memory stuff they attributed to my ADD.

Over time I got used to the heart stuff, but the memory stuff got worse, among other symptoms. Went back to the doctor, did blood tests and all fine.

So now I'm feeling a bit frustrated because I feel like there is something wrong, but everyone is telling me I'm okay. So I go along and carry on.

The memory problems really stand out as a problem. There are, obviously, other symptoms, but that is the one that is interfering with my life. Then one day, I forgot to pick my 5 year old up from school. I know some people tell me that 'that happens sometimes' and such, but I have never in my LIFE forgotten to pick up one of my kids from school. To me, that was the icing on the cake and I went back to the doctor who referred me to a neurologist. He did an MRI and when we went back last week, he told, and showed me that the MRI shows that I'm having seizures in my temporal lobe that are affecting the memory part of my brain.

So he goes on to explain a teeny tiny about epelipsy, and says that he's not going to take my license yet, and then it was kind of 'blah blah blah' as far as what I remember. He mentioned an antibody blood test (which I wrote down but can't find LOL. Starts wtih a P and something about neoplasm maybe?) I asked if he could fix the memory problems and he said there are medicines that I can take to help.

Anyhow, I'm also to go do an EEG and go back in 6 weeks. Though if the blood work comes back horrid I assume they'll let me know sooner.

So now I come to my questions. First off, I'm relieved to finally 'know' what's been causing all my problems and memory loss!! THEN I am terrified because if it IS that, then I'm afraid of the medicines and the side effects, and I'm terrified that my memory won't get better, and worse..... get worse!!! THEN I worry that, what if he's way off the mark!!! I mean, he is at one of the top neurology facilites, but still..... it seems, to me, to come out of nowhere!!!!!

I am so confused, scared, and worried. I don't know what to think or believe. I would so appreciate any advice.........

Kim

 

[ashmstng]

Hello LLWinston44!
Welcome to this forum. I am pretty sure you figure what is wrong. I am sorry for what you have been going through. I have that same issue. My seizures are located in my temporal lobe and is effecting my memory. I cant remember much of my childhood. Which sucks. I want to remember all of the stories my parents tell me. I try to anyways. I am not sure what they paln on doing to you. Just take it one day at a time. Just like me I have been on every seizure medicine and have the Vagus nerve stimulator implant and neither are helping me. I am having 8 to 10 seizures a month. So, next month I am having brain surgery. Your in my prayers and I hope you get everything figured out. God Bless!

 

[Bernard]

Hi Kim, welcome to the forum. :hello:

If you are new to epilepsy, I'd suggest reading this thread: epilepsy 101

 

[RobinN]

Hi Kim, Welcome to CWE!
Sorry that you are having to deal with this, but you have come to a great place.

Curious though you say:

He did an MRI and when we went back last week, he told, and showed me that the MRI shows that I'm having seizures in my temporal lobe that are affecting the memory part of my brain.

What shows up on your MRI? Did your neurologist explain?

 

[LLWins]

Hi Kim, Welcome to CWE!
Sorry that you are having to deal with this, but you have come to a great place.

Curious though you say:



What shows up on your MRI? Did your neurologist explain?

Well, what he showed me was an area that 'glowed' from the stuff they used to enhance the MRI? (Please bear with my lack of words..... Part of the whole problem..) So apparently this area showed seizure activity in the anatomy of the area???
Sorry for the lack of a better explanation..... The words escape me.

 

[LLWins]

Hi,

Thanks for the replies! I used to be very much a word person. I've been an avid book reader since I was littler than I can remember. I LOVE words. I always have a very specific word and know when and where I want to use it. I've always spoken, and written very well. Not snobby, but in ways I just enjoyed. That was the first thing that I noticed with the memory stuff. I couldn't 'find' my words. Also, spelling.... I've been a phenominal speller! Can't spell now worth beans! I'm not sure how much the memory affects things like childhood memories...... I'm not sure I wouldn't mind losing some of those! LOL Mostly it's the 'today' memories. I am always messing up things I have to do, I've cost us $250 in bank charges this month in overdrafts, as well as being behind on bills. I just can't keep track!!!

It's driving me crazy, and I'm so lucky to have a wonderful husband that is totally supportive and understanding. But I am not so much so. I want it to stop and go away.

Hello LLWinston44!
Welcome to this forum. I am pretty sure you figure what is wrong. I am sorry for what you have been going through. I have that same issue. My seizures are located in my temporal lobe and is effecting my memory. I cant remember much of my childhood. Which sucks. I want to remember all of the stories my parents tell me. I try to anyways. I am not sure what they paln on doing to you. Just take it one day at a time. Just like me I have been on every seizure medicine and have the Vagus nerve stimulator implant and neither are helping me. I am having 8 to 10 seizures a month. So, next month I am having brain surgery. Your in my prayers and I hope you get everything figured out. God Bless!

 

[paradise survivor]

Hello LL, and welcome to my world! I too suffer memory loss. One time my husband asked for a orange, I apparently got one and started to cut it up but then walked away with the knife still sticking out of it with absolutely no idea who did it! My husband was kinda giving me a hard time about it so when he came back in the door, I yelled at him saying "who are you and what are you doing in my house" we both had a real good laugh at that one! Yes I also lost money, about two grand for the same memory problem, mqy I recommend carbon checks! I know how you feel when thoughts and memories are no where to be found- I have had trouble finding my way out of a room I just walked into...it sucks! try to keep a small notebook in your pocket and feel free to hop on this site for moral support - it helps to know that it is not only you that experiances these things and I still get validation from the folks here. Remember an upright day is a good day, if I remember right.lol

 

[RobinN]

I don't remember Rebecca drinking anything before her MRI that is why I asked. Her scans don't show seizure activity, only the structure of the brain. I am curious how your scan is different.

Rebecca had amnesia for two months. She lost all memory. She did not know her family, her house, what she was good at. She knew how to read, how to do math, but she did not know how she learned it. It was a scary time for all of us. I do know that memory is there, it just is being to access it.

Neurofeedback can help you access it.

 

[speber]

Welcome LLWinston!...

In the early stages of finding out about it, epilepsy will scare you and piss you off...

I'm leaning towards RobinN's advice here. The stories I've seen seem to indicate neurofeedback might help your case.

This forum IN PARTICULAR is a treasure trove of neurofeedback information! check out the alternative therapy links for the thread or link to threads aboutit in Bernard or RobinN's signature lines!

Again, welcome!
Speber
:rock:

 

[LLWins]

I don't remember Rebecca drinking anything before her MRI that is why I asked. Her scans don't show seizure activity, only the structure of the brain. I am curious how your scan is different.

I'm sorry........ I didn't mean to say I drank something..... I meant to say that it was an IV. I'll look it up...... Oh yeah, it was called MRI with contrast. Sheesh that was hard to get! LOL!!!!!!

It was the contrast part that showed the seizure activity.

 

[RobinN]

Rebecca had two MRIs, both without contrast. One just was using a larger magnet (I think that is what they told me). I wonder what makes them use one over the other. I have heard of another test too, that shows the brain function. I believe that it is quite expensive, so this is why they do not offer it with certain insurance plans. (I forget the name of it because I know it is out of the question for us). Would rather they pay for another round of neurofeedback.

 

[skillefer]

Welcome LL! I hope you find this site informative. Trust me, I understand the memory issues....( I have grand mals, and my memory has been effected by the seizures.) Read the epilepsy 101 thread. Also, since you have memory issues, try to schedule your appointments so that your husband can go with you. My hubby ( God bless him..) goes to all my doctor's appointments with me so that he can remind me of stuff I wanted to ask the doctor as well as what the doctor said. As for meds....they work great for some people. Some people take them and never have seizures again. For others, they don't work as well, and for yet others, they don't work at all. There's a wealth of info here about alternative methods of treatment. Just remember to keep an open dialogue with your doctor. If your hubby can't go with you to the doctor's appt., then make sure you take a noteboook, and write down what the doctor says.

And try...try ...to have a sense of humor....I think of it this way. I can watch movies or read books several times and enjoy it each time as if it was the first time. My hubby grumbles about my flawed memory at times...and is amazed that I can remember little details from years ago, but not a conversation we had last week.

As for banking issues....well, you might want to have your hubby in charge of the checkbook and debit card until you get everything settled with your doctor. I know it's irritating (I had to do the same thing last year...) but it's just temporary. Think of it as a vacation from worrying about bills..

Anyway, welcome to the site. Feel free to ask any questions. And when you just feel like you need to rant to someone...check out the Padded Room.

 

[paradise survivor]

If I remember correctly (and that is asking a lot ) I think one of my credit card companies actually accepted a letter from my doctor (at that time) and reversed some of the charges. Can't say it worked with all but it is worth a try--Just some food for thought from one who lives in the memory abyss. Side note- Topamax was very hard on me for memory, it kinda of ereased my brain and took along time to get back half way. I still have trouble spelling (used to be a spelling bee) and I too see movies for the first time every time.LOL

 

[brain]

:hello: Kim!

Welcome to CWE, as others have posted! They've
provided you a great start! Feel free to browse
around and make yourself a home!

 

[Elaine H]

Hi LL

I was so sorry to hear about your troubles, and because I can relate to them fully, I thought I'd drop you a line.

I got diagnosed in 1986, aged 23 with Right Temporal Lobe Epilepsy, and my first seizure was a Tonic Clonic seizure. After all the tests and MRI scans, EEGs etc, and after a lot of shouting at specialists, and after years of being passed from pillar to post with different drugs, I was told I could have brain surgery. My memory, like yours is absolutely dreadful, I have an incredible long term memory but that's a different part of the brain that deals with long term memory, but with short term memory, it's the Temporal Lobe that deals with this. I had a scar on my right temporal lobe, this was caused by being a forceps delivery, I had surgery in Sept 2000, and was seizure free for 5 years. My epilepsy came back in July 2005, and I am waiting to have my right Hippocampus removed, this is part of the brain responsible for the laying down of new memories, and I have sclerosis of it, so the doctors told me that they may aswell remove it, it doesn't work anyway, and that's why my memory is so bad.

There are so many things you can do to help yourself, I keep a diary I write it up every night, and I record the whole day's events, I record any seizures I might have to see if there is any pattern to them, I take a lot of photos, I write evrything down, when I was at work, I kept a record of every telephone call I made and received, and what the outcome was, I found this so helpful. I never forget a face, but I can't always put the face into the right part of my life, I bumped into an old freind the other day, I knew his face, and was a little embarrassed to have to ask him, he looked a bit shocked but I explained why.

There are methods for helping remember things, using images and rhymes or stories to help link ideas together, for example, I was telling someone the other day when my birthday is, and I said remember it as Star Wars day,.... May the 4th be with you, I know I won't forget when my birthday is, but it's a good example of how to remember a specific date.

I am guilty of putting things "somewhere safe" and that's fatal, I have to tell my partner wher I put it otherwise it's gone forever. You must concentrate while you put things away, this will help, take a few seconds to make a mental picture of the object in the place you are putting it, another thing to do is to go over in your mind what you were doing the last time you had the missing item, this is called mental retracing. It is also helpful to have a filing system, a standard routine, or particular places to put things. Hang your keys up in the same place when you come home means you will always know they are there.

I always have to picture people or places before I can fully remember them, I always tell people about The Eagles concert that I went to in 1996, I can honestly say, that I have absolutely no memory of going there, being there, or coming back, I had a seizure on the way out in the loos, and I hit my head on a sink, all my life I had wanted to see this band, and I have no memory of it at all, I don't even know who I went with, I have the ticket in my purse, but that's it.

You can ask your doctor for a memory test, this is done on the NHS in the UK, and is done by a psychologist who can also advise on ways to manage memory problems.

You will find this website both fascinating , reassuring, comforting and extremely helpful, I know I have, it's brilliant to get people from around the world to talk about their experiences with epilepsy, and as I am writing a book on my experiences, I have found it very helpful. Please don't think you are all alone with your memory problems, it is so common and I know it can be very annoying.

I hope to hear from you, and I hope you feel a wee bit better, do what I do and stick your fingers up to epilepsy, we just can't let it get the better of us can we?

Best Wishes

Elaine x

 

[Necie]

Elaine, My seizures started just out of the blue 5 years ago. Im 41 now. Alot of the thing you metioned to do I already, but there are also things that I am going to start to do. My memory is totally out of wack. I found a handful of silverware in my fridge the other day. I am sure that I ment to put it in the silverware drawer. I do little dumb things like that. So I am going to try a few things that you mentioned. It cant hurt right?
Necie

 

[Elaine H]

Hi Mate

No, it can't hurt to try, I've found so many useful things to try myself since joining this wonderful website, it's just so good to know that we aren't alone eh? Let me know how you get on, I would love to hear how you are doing. Keep smiling, and keep positive, my memory is totally knackered aswell, I write everything down, I love getting diaries out, and looking back to what I was doing this time last year, or five years ago, it's so strange to see it written down on paper, written by me, but I have no memory of it whatsoever!
I'd love to hear how you are doing, you may be able to help me, I want to put a photo of me on here, but I have no idea how to do it, any ideas/
Keep me posted, I'm 45 by the way, and very happy being me most of the time.

Loadsalove

Elaine x

 

[paradise survivor]

Hey all, I...never mind thought gone....

 

[minnbikergirl]

welcome to this sight !! I am sorry to hear about your issues.. We can all relate in some way or another. The memory is a precious thing, and when its not working we realize how much we depend on it.. My memory sucks !!!My kids understand because they have lived with it their whole lives. This sight has helped me so much !!! Its a support group to me...
Good luck and keep us informed of how things are going...take one day at a time, and a good sense of humor helps...

 

[Elaine H]

Hi Necie

I haven't heard from you for a while so I thought I'd drop you a line. I've got a date for my brain surgery, June 26th, I am absolutely terrified!! I know I've already had one lot of surgery, but I think it's worse when you know what to expect, and they are gonna shave off a strip of my newly hi-lighted blonde hair! That's what gets me the most, stupid I know, but if your hair isn't right, then nothing is eh?

I just had an aura while I was writing this, I've had some really frightening seizures since I last wrote, I had a tonic clonic last week, and bashed my legs up, loosened a tooth, and bit my tongue, oh deep joy! Please keep everything crossed for me that this operation works, it did for five years last time, but I would love to know why it came back again!

I hope you are ok, and I hope you are managing to remember things a bit more easily, I just hope that when I have this op, I can still recognise people and places, and have memories of events and stuff from the past, the part of the brain they are removing is the Hippocampus, and it's responsible for the laying down of short term memories.

I'll let you know how it all goes, and I hope to hear from you soon.

Cheers

Elaine x