not sure how to title this

[msuder0583]

thanks i will follow those links when it's not almost midnight

 

[NeuroNotes]

thanks i will follow those links when it's not almost midnight

:roflmao: ...and you're most welcome.

 

[NeuroNotes]

ooops, I called you Mike. I got you mixed up with another member here. My bad. :embarrassed:

Thank you for being so gracious (even around midnight) and not correcting me. You rock. :rock: Rest well.

 

[msuder0583]

my name is mike too so its ok. =)

that's probably why i didn't correct you, and yes i do rock

 

[NeuroNotes]

:roflmao: I'm going to bed!

 

[msuder0583]

g'night sweet dreams

 

[NeuroNotes]

You too, Mike. =)

 

[qtowngirl]

Psychic seizures:

>These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).



This happens to me ALL the time

Msuder:
If this is really what happens to you all the time, you're right that's not the meds, that's the hell of a simple partial. Now I'm no neuro, so can't say for sure, but like I had said before he's got you on too many damn meds anyway, so maybe he just likes the med thing. Any chance you can get a referral to someone else? Cuz if they're simple partials they have to be addressed now (please trust me on that one).
Do you get an uncomfortable 'rising' feeling in your stomach? Face get warm or flush? Breathing feel a little off? And does it feel the same every time you experience it? If any/all of these are happening as well, make another appt. asap k? (((HUGS)))

 

[bazpa]

I don't know what it is, but since I really started having a lot of these seizures, before I knew what they were, and started taking any medication, I had this happen several times. I would totally miss my turn. The next thing I knew, I was driving off some where I did not want to be. This is not a good feeling. I thought I was really losing my mind when this was happening. I kind of think in my situation, that I was having small seizures, but who knows. I'm sorry that you are having this.

 

[Cint]

Gosh, you've been here since Feb, and you are just finding out about this now? I've not checked your profile to see when and/or if you were diagnosed, and what seizure disorder(s) you were diagnosed with. I apologize if I came across as too assuming in my posts. I'm just a little surprised that you are just now learning that these symptoms are seizure related, and that your neurologist wasn't aware either. It's rather sad when we are the ones who have to educate the doctors about seizure disorders, but that seems to be par for the course, as I have read so many with similar experiences. Usually, during an evaluation, you fill out an extensive questionnaire.

Possible Temporal Lobe Symptoms

-->
With regard to your fear of dementia...don't be. Brain plasticity! If you don't use it, you'll lose it, and that's with anybody. You can do brain exercises to prevent dementia, keep your head in the books...just keep your brain active.

Not all neuros specialize in epilepsy, so many doctors don't know about the many types of seizures. That is why, IMO, it is best to go to an epileptologist at a major university for someone who is still having seizures that are difficult to control, along with any difficulty with meds, etc. And many aren't educated enough about the neuropsychiatric effects of epilepsy. I've discussed
this http://www.pni.org/neuropsychiatry/seizures/ptls.html before, as this dr. worked with the neuropsychiatrist who used to treat me. He has since retired. And brain plasticity has been discussed before also. Use it or lose it!

 

[msuder0583]

Msuder:
If this is really what happens to you all the time, you're right that's not the meds, that's the hell of a simple partial. Now I'm no neuro, so can't say for sure, but like I had said before he's got you on too many damn meds anyway, so maybe he just likes the med thing. Any chance you can get a referral to someone else? Cuz if they're simple partials they have to be addressed now (please trust me on that one).
Do you get an uncomfortable 'rising' feeling in your stomach? Face get warm or flush? Breathing feel a little off? And does it feel the same every time you experience it? If any/all of these are happening as well, make another appt. asap k? (((HUGS)))

Yeah maybe you're right. Thanks for the hugs. I'm just so confused right. =( with school, and disability and my love life and family, it always seems you gotta put yourself on the backburner. Thank God for you guys

 

[qtowngirl]

Msuder:
I hear you on that... what to do with too many things on the plate.
I got a 'medical leave' from my studies from my doctor, gave it to the school and they said no problem, no questions asked. Any chance you can do that, or something similar? Just a few months off to breathe and get things where they need to be? It's done wonders for me.
As for the love life and everything else, I think the answer is the same. My relationship is not on very stable grounds and in a recent tearful conversation with my dad he said, "Your health comes first kiddo." And he's right. If my relationship is stressing me to the point I'm having more partials which could cause more tonic clonics, well...
We can't put ourselves on the back burner. I think that time came and went when we got diagnosed.

 

[msuder0583]

qtowngirk

Yeah i have had a doctor's note for the last 2 semsters to allow me to get writeoffs for each semster which helps me because it doesn't affect my GPA but then again it holds me back cause I am stuck going on longer, so I know exactly what you mean. and you are exactly right.....the last thing we need is stress, it has got to be one of th bigeest seizures triggers there is and your dad is also right that our health does first. I can't exactly say the reltionshipp is stressful but the uncessary fights and such can be,,,

 

[NeuroNotes]

Not all neuros specialize in epilepsy, so many doctors don't know about the many types of seizures.

Very true. Since many neuros are aware that they are not specialists, they should, in good conscience, refer their patients to one who does. Sadly, that is generally not the case in the US, unlike Europe who makes immediate referrals to Epileptologist and epilepsy centers as standard protocol.

That is why, IMO, it is best to go to an epileptologist at a major university for someone who is still having seizures that are difficult to control, along with any difficulty with meds, etc. And many aren't educated enough about the neuropsychiatric effects of epilepsy.

I couldn't agree more. I posted this data below in another thread when I first joined. I was unable to find the post in my search to link it here, as I could only retrieve the my last 100 posts.

MRIs Done at Epilepsy Centers More Accurate Than Standard MRI
Laurie Barclay, MD

The investigators compared results of standard MRI reported by "non-expert" radiologists, standard MRI evaluated by epilepsy "expert" radiologists, and epilepsy-specific MRI read by "expert" radiologists...]

Sensitivity in detecting focal lesions was 39% for "non-expert" reports of standard MRI, 50% for "expert" reports of standard MRI, and 91% for epilepsy-specific MRI, which showed focal lesions in 85% of patients who had no focal lesions on standard MRI.

Although the technical quality of standard MRI improved during the study period, accuracy of "non-expert" reporting did not. Standard MRI interpreted by "non-experts" correctly predicted neuropathological diagnoses in only 22% of cases compared with 89% of dedicated MRI reports, and it missed the diagnosis of hippocampal sclerosis in 86% and of focal epileptogenic lesions in 57%.

"Patients without MRI lesion are less likely to be considered candidates for epilepsy surgery," the authors write. "Patients with refractory epilepsy should be referred to an MRI unit with epileptological experience at an early point."

cont.

"There is a clear need for an increased number of trained neuroradiologists to direct image acquisition and to report on MRI scans," he writes. "In the meantime, current resources could be used more efficiently by the increased use of standardized acquisition protocols and effective telereporting in the managed clinical networks of community hospitals and regional specialist centers." Source

J Neurol Neurosurg Psychiatry
Gary D. Vogin, MD

At present, over 100 epilepsy centers exist in the United States. Unfortunately, it often takes 20 years before patients are referred for an epilepsy surgery evaluation. Medscape

According to recent studies, those stats have changed very little in the last 10 years.

I've discussed this http://www.pni.org/neuropsychiatry/seizures/ptls.html before, as this dr. worked with the neuropsychiatrist who used to treat me. He has since retired.

That's awesome. His work was leading-edge.

And brain plasticity has been discussed before also. Use it or lose it!

I was addressing Mike, personally. He was very concerned about dementia, and I was only trying to give him a little hope. I was not making the assumption that brain plasticity had not already been discussed on CWE before now. Cint, based on a few of your comments addressed to me, I sense that my texts have been misinterpreted by you, and perhaps others. I had to go back and reread my posts because your post seemed curt in nature. It should be OK to repeat data here (on an individual basis) without being called out on it. So I went through this thread to find out what I might have said to trigger such a response from you. The confusion on my end was that I was addressing Mike, one on one.

I found this:

I wrote:

"Gosh, you've been here since Feb, and you are just finding out about this now?"

It was late for me and I was tired when I posted about being surprised. My text could have been worded better. I can understand how that might have been misunderstood. It was not meant to be perceived as the fault of the members of CWE for not recognizing his symptoms by now. We were all trying to do our part in assisting Mike, yesterday. My comment was in reference to the fact that CWE is saturated with a lot of educational posts, with many sharing information about simple partials. My surprise was that Mike had not yet noticed similar symptoms until yesterday. The comment was directed at him, which is why I also thanked him for putting up with my forthrightness ("putting up with me"). I also apologized for assuming that he already knew he had this particular seizure disorder.

Please accept my sincere apologies for any misunderstanding.

We are all in this together. Each of us have something to contribute from our own personal experiences, which is why I thanked you yesterday for the valuable data you posted in this thread. I appreciate your feedback and for bringing to my attention that my posts needed clarification. I hope we can be friends or at least cordial. I admire your strength and courage regarding your own personal challenges, and enjoy reading your educational posts. I'm still new here and would greatly appreciate your patience and support as we get to know each other better, while learning to cope with epilepsy.

Kindest thoughts,

Victoria

 

[qtowngirl]

Msuder:
Oh the unecessary fights, my god. I wonder if I could get a 6-month medical leave from my boyfriend?

(lol and thank you for the 'girk'... that was definately the laugh I needed today-now I can't get it out of my head).

 

[msuder0583]

qtowngirl

Take it easy one me. Every since the increase in meds, my spelling,memory,cognitive and recognitive abilities have sucked. But I'm glad you enjoyed the girk anyways. i don't think your doctor will write you off from yourpartner. That's more the cops =) In fact, my abiities my have gotten so bad, I went to a psychologist today formy disability they had me doing these tests, like a monkey would do and I was failing them. lol

 

[qtowngirl]

Actually I thought it sounded really cute.
(that's why I was laughing, hopefully you didn't think I meant at you). Never.

 

[msuder0583]

oh ok well that's ok then. i didn't mean to misspell it. just alof or problems. looking a future teacher of america here. if i ever can stay in school cause of my condition. when you turn in your doctors' notes, do you turn them in for HS or college?

 

[qtowngirl]

Glad you realize I wasn't making fun of you. Ever since they doubled the topamax I miss entire words when I type, and the only reason it's not noticeable-most of the time I hope!! is because I proofread everything I do before entering (was part of my job growing up so it's like second nature). Here's another (((HUG))) though so we're all good.
As for school it's college, they're great.
And don't worry you... determination means everything.

 

[msuder0583]

yeah same here. how much topamax you on? i'm on 400 milligrams. it's such a pain in the ass. not only do i miss extra words but i will combine words that aren't supposed to be combined, but then again i'm from the south so we are used to doing that anyways...i'm trying to think of one i did recently...um....sort of like instead of "so how are you doing?" i will say "sour you doing?". =) thanks for the hug. *hug back*
yeah i'm determined....its just hard because topamax kills your motivation, and i'm on keppra too which pretty much does the same thing