Memory problems!!!!!!!

[Cetacean]

Our neurofeedback experience cost about $2000. Not cheap, however much more has been spent by the insurance company in one trip to the ER.

That's a far sight from the $5000 I'd thought I was looking at. I'm much encouraged Robin. Thank you.

Mine is Temporal Lobe Epilepsy. Complex-partial only, (maybe some undiagnosed absence and drop seizures). Anyway, no grand mals and trips to the ER for me.

TLE is the genteel epilepsy. It debilitates invisibly.

op:

 

[Cerindipiti]

Hi Cetacean and Friends-
Homeless for 10 years? Did you ever pick up that you thought something was wrong? How did you come to end up at a Neurologist's office? How did your symptoms progress? I'm soooo glad you were able to come across an answer. Did the meds change your life at all and if so, how?
As for me....how much time do you have? lol. At birth I had a coarctation of the aorta that my parents refused to have repaired. I also had a patent ductus. First year of life I had heart disease. At 6 weeks old I had spinal meningitis. My parents would also ask if I was deaf cause I never listened. Ended up I had adhd and a hearing disorder called Central Auditory Processing Disorder. My levels are fine but I miscomprehend auditory language. Life goes on. They put me on Ritalin and it changed my life but at the end of each dosage I would stare off into space and it was such a relief to my mind. I noticed one other girl at my boarding school stared off like I did. She had a cleft palet.
Several years later, of which I will save you from the endless horror of misdiagnosis of bipolar and getting out of school and then becoming homeless.... My memory was getting significantly worse. I couldn't take it anymore. My grandpa died of a brain tumor so I went the neurologist route. My first one at age 18 said nothing was wrong with me. My second at 25 acknowledged my memory problems. He said it's understandable because I used to horseback ride and I've had at least 5 concussions. One of which I got knocked out for 45 minutes. Third neurologist confirmed I didn't have a tumor and sent me to my second neuropsych for testing to see if my memory was getting worse. That "doctor" wrote in his report that I'm psychizoaffective.... even my psychiatrist was pissed about that..... next! I went to a restaurant with a friend and I told him I was glad we got to try this place because I've never had their milkshake before.... he says to me... "Um Dorian... we've been here 3 times..." Definately time to look into things. The neurologist who diagnosed me said that his worries were that recent research has indicated that brain injury from concusssions have been found that they can heal over time...He was wondering why I wasn't healing... He was astonished that No One had ever given me EEG (and my neurologist is totally emotion free, well revealing at least, iv learned now over time). I am completely grateful to him. They've added Keppra to my meds because I am beyond dead certain I have Absence too. The medicine helps me focus so much more than even the Dilantin did. For the first time in my life I feel like I have a chance. I have to be careful with being on enough antidepressants though because on my seizure meds I am ready to die on a moments notice, if one little thing goes wrong... that's not my usual nature.

Anyone else have stories?

 

[Cerindipiti]

Omg, I lie all the time now too.... yeah just to look like I know what I'm talking about. Sometimes memories, like language I was going to use will come back a few minutes later. Above all else I'm learning that if I educate people on my condition and they are genuinely good people they take me in stride. More often than not these days I help myself and others to laugh about it. I'm trying to think of an example but I can't think of one. lol. I had other things to say but now I can't remember. Eh, whatever. Life goes on. lol.

 

[Cerindipiti]

What if we did have that neurofeedback and our seizures, which many of us have grown up with, were suddenly gone? Would we know who we are? Would we be comfortable with the presssures of who we are expected to become? Perhaps we would be able to be more than we ever thought? Would our family recognize us? Everything with time I suppose. Just an interesting thought. I definately have an epileptic personality and I wouldn't be me without them. Without my natural spontaineity and goofy-forgetfulness that I've worked so hard to accept about myself and by which people enjoy about me and which we joke about.

Mike - while I appreciate you being a spokesperson I find that the way you chose to express it is rude and thoughtless. For me at least, meds save my life everyday. I am glad it is working for you. Perhaps you could become more humble about it though.

 

[Mike]

I am soooo sorry if I seemed rude or insensitive. I just want to help, maybe I try too hard. Ill try to be more aware of my feelings while Im giving important information to others.Peace to you.

 

[Rae1889]

i'm happy to say that I have a great memory. Photographic and I'm great with numbers and names and patterns etc.
But its actions that I forget, like getting up to go get something and not remembering what i needed to get, or printing soemthing off the computer and getting it, then sitting back down only to get back up thinking that i hadn't picked up what i printed. or those presque-vu moments *tip of the tounge*

I forget things after I had a t/c too. Like where I am, who my fiance is. what my cats are and why they look the way they do.

Once I woke up on the bed after a t/c and my fiance had been looking over top of me and all the lights were off and it was really dark. Ididnt remember him or where i was and I was begging him not to hurt me and to let me go I thought he was going to kill me. that he kidnapped me.

 

[occb]

i'm happy to say that I have a great memory. Photographic and I'm great with numbers and names and patterns etc.
But its actions that I forget, like getting up to go get something and not remembering what i needed to get, or printing soemthing off the computer and getting it, then sitting back down only to get back up thinking that i hadn't picked up what i printed. or those presque-vu moments *tip of the tounge*

I forget things after I had a t/c too. Like where I am, who my fiance is. what my cats are and why they look the way they do.

Once I woke up on the bed after a t/c and my fiance had been looking over top of me and all the lights were off and it was really dark. Ididnt remember him or where i was and I was begging him not to hurt me and to let me go I thought he was going to kill me. that he kidnapped me.

My god -- that must be a terrifying experience! I can't even fathom the trauma of going through something like that.

 

[Mike]

Not even once did I think that my good fortune(seizurefreedom) would offend anyone. Im not proud,Im the most humble person you will meet. I know that without GOD, Im nothing! I thought that by shareing this experince I could help.

 

[gigi]

nerofeedback

Ok this is the first time I have actually taken notice of the above discussion. Again, I have been fed the old medicate or nothin' line since 1969 (i was 11). Just to scratch the surface (my brain!) I started listening to relaxation tapes some years back, now my mp3 or blackberry at bedtime, when I was stressed or anxious-which can constitute a large portion of my time. So, there must be something to the aforementioned. I notice when I blow off my routine, my body and brain shifts into the stressed to the marrow mode. The brain is trainable - that I truly believe first hand. It takes time to alter the way the brain reacts to certain stress, but will happen. It is like going to a exercise class, and expecting instant results! After a few months you will visibly see the difference. The brain, on the other hand, is covert. It takes patience to change it, as I surmise in this discussion. Our insurance is so-so, and my seizures at the moment are "controlled" according to the archaic medical community. My dilantin level was just below theraputic recently, increase! is their response. Now I am TIRED - but would rather walk across broken glass than have a T/C, my seizure of choice. Thanks for all the research and ongoing support you fine people provide. HUGS, and more HUGS.:bigsmile:

 

[Elaine H]

Ok guys, how about this then? Today, I have started to experience looking around me, and not recognising where I am, what I'm doing there, where the road outside the front of our house is going or coming from, and it is terrifying! I just want to know if anyone else has been through this? As I sit here typing, I am feeling it now, just very quickly, I lose track of what I'm doing, where I am, I just forgot where Mark, my partner was, and what time he would be home, in fact I was so freaked out, I just rang my Dad, so that I had someone to talk to for a minute.
I have to say, I don't think I've ever experienced this before, and I hope I don't again, it is very frightening, I walked up to the local shop, and momentarily, I couldn't think where I was going, I didn't recognise the front of our house when I got back, and I keep looking around the living room, and not recognising it for a split second, it is literally that quick, but very frightening!
Has anyone else been through this? I hope you are all ok and looking forward to Xmas?

Love

Lainey xxxx

 

[Rae1889]

well those might be quick simple partials or uber 1 second long absences where you just lose a blip of time and then your slightly confused for a second.

Or it could be post-ictal psychosis *i just learned about this* where after a seizure *complex partial or t/c* you can experience the post-ictal state at, what seems like, random moments days after the seizure itself.

I get them, but mine are from absences. I'll zone for a second or two, then get slightly confused on where i am or what I was doing.

 

[gigi]

brain farts

sometimes, I can not decipher if it is my seizure brain doing the disorientation act on me, plain anxiety, or if they are double teaming me. I do get flustered, and confused easily. I particularly get nervous when I have an audience waiting for me to consolidate my feces, and make a decision. I feel like stupid is written all over me, since it takes time for me to do a thought process. So, does that help you out? I must appear to be completely out to lunch, but I just process info slower, and if pressured, my circuits get over loaded. Perhaps that is what you experience. Yes?

 

[Mike]

Postical psysosis for me is better defined as postical confusion. It a 45 minute period of terror for everyone around me. Im not fully awake trying to walk around, even get out of the house. When I wake up Im usually pretty beat up.

 

[Meetz1064]

Elaine, that

sounds like jamais vu.......

 

[flinnigan]

I've been feeling very confused recently and finally have decided its due to doing too much. I hadn't driven for a year and a half. Then in a matter of two weeks I drove, ran my schools book fair and started Christmas shopping. No wonder I was confused and had memory issues again. I simply had more to remember. It was easy laying around the house for six months post op.

My husband kids and friends are just as forgetful. I think we just get more upset about it and assume its due to Epilepsy when maybe a lot of it is just real life. Lets stop beating ourselves up about it. Not to diminish those times when we flat out don't know whats going on and jamais vu is very frightening, but lets not sweat the small stuff OK guys. Now hopefully I'll practice what I just preached.

Bless you all and well if we forget a gift this Xmas well screw it.

 

[Mike]

These periods follow a noturnal seizure, the reason that Im so aware of all that happens is because my wife and son are good to me. They try to keep me from hurting myself and call for help when they cant control me. They have had to call for help on a few occasions.

 

[gigi]

Flinnigan:

Bless you all and well if we forget a gift this Xmas well screw it.[/QUOTE]

I am in full agreement!! You said it.:bigsmile:

 

[Cerindipiti]

Mike-
Its no biggie. Just a little open about my own feelings. Everyone has their opinions. Nothing was personal. And I'm so grateful for you that things are generally going well. Have a wonderful holiday!
Dorian

 

[Elaine H]

Hi Mike

Thanks for writing back about a possible solution/description of my weirdo moments!! Wow, how complex is the human brain huh? I am sitting here now typing this, and I am plucking up the courage to get on a bus, and go into town to meet a friend of mine, and do some last minute shopping, and maybe go for a beer, I am bloody terrified!! Why oh why can't I just get myself together, take a few breaths and get out there into the real world??!! It's pretty scary sometimes isn't it? I don't think people realise or understand, how disorientating it can be when we guys have a "wobbler" I am getting absolutely NO WARNING whatsoever these days!! It is bloody terrifying, so I am not sure if I can walk out to get the bus, there is a lot of snow out there, it is very slippy, and I guess I'll need a glass of red wine to chill me out! So what, it's my only vice, I don't smoke or do drugs, I'm a good gal!! It's just that sometimes, I need a drink to get my "Dutch courage" out, I'll let you know how it goes mate.
Hope all is good with you, and I hope you are looking forward to Xmas?! Talk again soon.

Lol

Lainey xx

 

[Mike]

Sounds like nightmare to me. Ill pray that it changes and gets better. If I were you I would research Nerofeedback and memory loss, I think that you can find help and regain your confidence. Be very focused and less forgetfull. Christmas is soon, our redemtion is at hand. Lets pray for miracles for each other! Peace to you!