Simple Parital Seizures with a speech/hearing focus

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Andy193
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Date Joined Jan 2007
Total Posts : 5
   Posted 1/16/2007 5:28 AM (GMT -7)   
Hi there.
This is my first post, but having read the supportive and wise help on this forum thought I'd tell you my situation.
I have simple partial siezures that are speech-related. I get tongue-tied, frustratingly so, and if I am listening to someone or to the TV, all I hear is meaningless syllables. I say meaningless, but what I mean is that it sounds meaningless but feels like it has its own meaning. In other words, it's like I'm hearing a different language that I partially understand. The sounds i hear are also the ones i want to say, and if I'm on my own I do say them just to hear myself, and boy it's ridiculous!! Sometimes even noises sound like semi-meaningful speech patterns, as though a running tap was trying to talk to me. Episodes usually last from between 10-20 seconds, but sometimes there can be several in a row.
I'm a teacher, and because the intensity and frequency of these SPSs has increased, I'm off work for the time being.
I tried keppra last year, (am on 450mg of phenytoin normally) and while it seemed to control the siezures, I got soooooo tired and weary I stopped after about 6 weeks. Am now wondering whether I should give it another go but pereservere with it for longer. Will be discussing this with my consultant soon.
If anyone has similar symptoms I'd be pleased to hear from you. It's so hard trying to describe what happens to people who haven't 'been there'.
Thanks.

Ducky
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   Posted 1/16/2007 6:41 AM (GMT -7)   
Hey there.. First off, welcome to Healing Well... it's great to have ya! Wow, Keppra seems to be causing problems for a lot of people lately.. What dose of Keppra were you on? Did you tell your neuro about the fatigue on Keppra? When you went off, did you wean off or did you quit cold turkey? Did your doc know that you went off the Keppra? Hang in there, and keep us posted!
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Andy193
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Date Joined Jan 2007
Total Posts : 5
   Posted 1/16/2007 7:06 AM (GMT -7)   
Hi Ducky and thanks for replying,

Came off Keppra gradually, but have had a few grand-mals over the last few months. tbh though, I find the simple partials the most difficult, as they interfere with conversations, work and even relaxing - like watching a movie or whatever. When I came off the keppra I thought I'd just try and live with the parital siezures but lately as I say they've been more intense and more frequent. My own doctor today has sent a fax to the neuro dept at the hospital saying that I need to be seen and have my medication reviewed. He said there are long term problems associated with phenytoin, which I've been on for years now, so I'm a bit in limbo at the moment. By the way, i'm in the UK, and my nearest hospital's neuro clinic is underfunded and waiting times are ridiculous, so I'm hoping my doc will make a good case for me. (yeah I know it's a crazy situation).

Ducky
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Date Joined Mar 2005
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   Posted 1/16/2007 7:31 AM (GMT -7)   
Wow, that's not good at all! Sorry you are going through all this, does your doc think that the prolonged exposure to the phenytoin is what is causing the problems? Maybe they can put you back on the Keppra, but at a lower dose and work your way up? Hopefully you'll hear something soon.. please keep us posted!
Moderator of Arthritis/Epilepsy Forums
Temp Moderator of Bi-Polar Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 1/16/2007 2:26 PM (GMT -7)   

Andy193,

I don't know if this will help you but this is my experience, I had a similar situation happen to me ~ usually brought on by stress,
I've had epilepsy since 1979, controlled by meds.
I get a form of petit mal seizures that my Dr. calls "speech arrest". It only lasts a few seconds, I am aware of what is going on around me but I can't respond.

When I try to talk, my speech is slurred (more than usual).
Most people have no problem speaking but I have to concentrate to form every word. (all the time but twice as hard during a speech arrest).
Everybody thinks I'm stoned all the time.

Boy, I didn't realize that we take our speech for granted so much.

Randy (Ontario) <!-- google_ad_section_end -->


Andy193
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Date Joined Jan 2007
Total Posts : 5
   Posted 1/16/2007 2:37 PM (GMT -7)   
Thanks for the empathy Randy,

It's good to know I'm not the only guy with such a strange experience. How often do you get your attacks and is your medication targeted at these attacks or is it just for grand mals?
Thanks again,

Andy

RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 1/16/2007 4:24 PM (GMT -7)   
Hi Andy,

I've had one seizure in 23 years. At the time (and every year after) my EEG's have shown epilectic activity in the lower left tempral lobe so as per the Ministry of Transportation, in order to keep my drivers licence, I had to be medicated and seizure free as sworn statement from my neurologist.
I'm currently on Dilantin 325mg
Pheonobarb 150mg

The Doctor says it's like an insurance policy, I have a 50/50 chance of having another gran-mal seizure. I didn't want to take the chance of having an accident and injuring myself or others.

My first attack was Oct/1979 ~ my next seizure was Dec,/2002, then Oct/2004. I take meds daily, same dosage of meds now as day one.

Randy

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/17/2007 5:43 PM (GMT -7)   
HI Andy,
 
I have simple partials too.  Left temporal lobe.  I had a stroke in 2002 (28 years old!), and the stroke left me with the seizures.  I don't get the speach issues that you do, but having conversations with people do seem to trigger mine to happen!  I get the awful smells, and a strong sense of deja-vu. I was also told that I tend to look up at the ceiling and I cover my mouth with my hand.  Weird eh...  I guess these seizures are different for everyone.
 
I'm having an issue with my medication right now too.  I'm on 30mg of Frisium (Clobazam. It's a benzodiazapine).  My body has built up a tollerance to it and no loger is controlling my seizures.  So I'm very slowly tapering off of it.  Not sure what they'll put me on once I'm done this stuff.  All I can say is be very careful when getting on a new drug.  I'd research it first.  A benzodiazapine is very addicting.  I'm having a heck of a time with the withdrawal symptoms.  Just something I thought I'd add on to the topic!
 
Thanks for telling us your issues.  I've posted a similar topic but haven't received much input.  It's nice to have another simple partial person to talk to!
 
Take care!
 
Ginny
 
"Thank you God for the storms that blow me right into your arms!"

Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, food allergies
Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, micronor, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Acidophilus


Andy193
New Member


Date Joined Jan 2007
Total Posts : 5
   Posted 1/19/2007 12:19 PM (GMT -7)   
Hi Ginny,

Sorry to hear about your symptoms and issues re meds. Thanks for the advice re researching medication. Will bear this in mind. The school I teach in are very understanding and I'm being given time off to re-adjust to whatever medication I'm put on. Thanks again for reply.

Take care,
Andy

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/19/2007 7:52 PM (GMT -7)   
Hi Andy,
 
That is wonderful that you get the support you need from the school you teach in.  It's so important to have others understand your plight!
 
Take care!
 
Ginny
"Thank you God for the storms that blow me right into your arms!"

Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, food allergies
Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, micronor, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Acidophilus


Rick OH
New Member


Date Joined Feb 2007
Total Posts : 2
   Posted 2/7/2007 11:11 AM (GMT -7)   

Hi all!

   This is my first time here & my first post.   I was amazed to find several people experiencing the same speach-related siezure activities.   I can relate to all here and greatly appreciate HealingWell giving us the opportunity to discuss and hopefully help all our situations.

   Most of my siezure activities have been of the grand-mal type (for which I am taking medication for), but have been experiencing more and more speach related episodes.   I have/am experiencing episodes much like Ginny, Andy193, and RanMan.   Lots of time lately, when I have these speach/hearing related episodes, I might see something and I will "hear" my brain processing what I see, and then "hear" my brain telling me what the item is.   Like Andy193, conversations and voices are like listening to someone speaking a language nobody can understand.   Most of these episodes last one to three minutes or so with varying degrees of intensity.   I can relate most of this to stress situations (mostly work - small wonder huh lol).

   I use to have deja-vue like episodes once in a while, but havent had one for about two years now.   I also experience tremors occosionally (again stress related) that were attributed to too high Dilantin level.   My last medication adjustment was for this and has helped, but I now have more of the hearing/speach episodes.

   My current medication dosage consists of 560mg. of Dilantin and 200mg. of Keppra daily.   I try to keep dosages as close to 12hrs apart as I can, but with my job and daily activities, sometimes take dosages as much as 3-4 hours past when i should.   I can usually relate any siezure activities to irregular (and sometimes missed) dosage times.

   One question I have centers around a TV show I saw recently concerning a child who experienced frequent and violent grand mal siezures.   He was put on a strict diet which reduced his siezures and allows him to lead a pretty much normal life.   Does anyone know of this diet and will it work for adults?

Thanks, and hope to hear from you soon!

Rick 


RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 2/7/2007 12:41 PM (GMT -7)   
Hi Rick
This might help to answer your questions about diets controlling seizures:
 
I've come across a natural healer for several medical problems.
The scientist (Tom Harper) that made this astonishing discovery was using this "UMAC-CORE (AKA phytoplankton) to grow his clams and when he noticed how great they were doing, he decided to try some himself (he was actually eating Algae).

He is a diabetic with cancer and after a few weeks of taking it daily, he found that he no longer needed to take his insulin and the cancer went into remission.
I have not seen any documented research re it's benefits for epileptics but maybe it's worth a try.

Web site attached:

http://www.umac-core.com/product_information.htm#sodium

Randy
 
 
                                  OR
 

 
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Rick OH
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Date Joined Feb 2007
Total Posts : 2
   Posted 2/7/2007 2:03 PM (GMT -7)   
Hi RanMan
Thanks for the Keto diet information. I will research this more and might see if it helps.

set74
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/9/2007 5:51 PM (GMT -7)   
Andy,

I too am new to this site and experience many of the same symptoms as you do. I have difficulty speaking once I begin to go into a simple partial seizure. I am aware of what is going on around me, but unable to respond during those 20 to 30 seconds while I am totally involved in the seizure. It feels as though someone has taken control of my voice for the time being.

As I noted in a previous post, I currently take 300 mg of lamictal and 175 mg of topamax a day. As of today, I will be increasing the lamictal in hopes of putting better control on the seizures. While they only seem to come in groups every other month, they are indeed a pain. Like you, I work in a school setting and work with very compassionate people. Nonetheless, I would like to be able to be completely seizure free if possible. I find the anticipation of waiting for the next one to appear very stressful.

Amanda S
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/16/2009 10:55 AM (GMT -7)   

Hi there,

 

This is my first time here. I found this thread on Google and it has given me a bit of comfort. I have had a range of symptoms for about 7 years now. I tried to talk to my parents when the symptoms first started happening, (i was in highschool at the time) but because I was a kid who lied to get out of homework, they just took is as I was trying to get attention and after a few weeks of them giving me crap I stopped talking about it.

            I am now married and my husband and I have started to talk about children. It was nerve racking after so many years of silence to talk about it (my husband didn’t know till about a month ago) but I went to my new doctor and though no one should get pregnant if they think something is wrong… I wish I didn’t ask.

            My symptoms include:

  • loss” of hearing. I don’t really loose hearing, I understand the person is saying something to me but I have NO idea what the heck they are saying. I hear the sound as mumbles, I understand that something is being said but I can’t figure out what.
  • Speech difficulties, I stutter or just can’t speak. I have to sit and wait for a few seconds to try again. Most of the time when that happens I feel like my head is going faster then my mouth.
  • Memory loss, that was the first symptom I noticed. There are just chunks of time I just don’t remember. When I “wake up” I feel slightly dizzy but in a non dizzy way – if that makes any sense.  
  • My balance sucks
  • I get dizzy while sitting down
  • I have weird headaches along with regular ones (not at the same time). It feels like tingles but not. When it happens I feel like the only way to make it stop would be to dig my fingers into my head, grab my brain and throw it across the room and smash it. It’s a very violent feeling, I don’t like it.
  • My forehead fell asleep a few weeks ago. Like when your foot or leg does, but it was my forehead – scary and not pleasant
  • My feet and index fingers move on their own. Sometimes my shoulders too

I don’t think it is just a seizer disorder. Though my general practitioner won’t give me specifics, he scheduled an MRI. It’s this Thursday and I am freaking out. I saw an ENT, because at the time I didn’t know they memory loss and the hearing issues may actually be connected. He said I might have a seizer disorder but if my general practitioner ordered an MRI then he is looking for a brain tumour. Waiting for tests and results is one of the worst things in the world. Has anyone else had a similar experience? Did you doctor think the worst but then it was only a seizer disorder? I am just hoping that all my years of waiting didn’t screw me over in the end.


McGoo
New Member


Date Joined Mar 2009
Total Posts : 12
   Posted 3/20/2009 5:54 PM (GMT -7)   
Hi there!  So sorry u are having difficulty with ur meds and controlling ur partial seizures.  I just want to let u know that u are not alone in having the speech difficulty with ur seizures.  I had a stroke about 6 mos. ago and now am having temprol lobe seizures (from where my stroke damaged my brain).  I haven't had a defenitive diagnoises yet..still waiting to get into the neuro.  But, this is what I experience..when I get stressed or if someone is questioning me where I really have to think...I start struggling for answers, word finding, my eyes go down and to the side and have been told that I have just stopped talking and look like "the lights are on but, noone is home" .  The more frusturated I get the worse it gets.  I have seen sounds as colors (only in my right eye).  And like u, when others are talking to me or when watching the tv..it's like I'm hearing a foreign language almost, I feel like my brain has slowed down and the voices have sped up to were I just can't keep up with what they say.  I also, have short term memory lose and can get very confused very easily.  My doc has me on tegratal and gabapentin, but I still seem to have these episoides many times a day. 
I'm sorry u are having a such a hard time and are having to take time off teaching.  I hope everything resolves for u soon and u are back in the classroom soon.  I have to say that I applude and admire u for ur choice in career, it takes a special person to teach and guide our children.
Take care of urself and know that ur in my prayers.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/26/2009 12:55 PM (GMT -7)   
i have that same problem too. Mostly when i am on the first few days of my period, or about 2 weeks before i get my period. Actually it just happened to me while i was typing this, lol. It usuallly happens when i am reading or listening intently. I can usually stop it within 5-10 seconds. And i have discovered that if i turn the noise off and concentrate on a sentence if i am reading and just read it over and over i can get out of it. Or if i am talkign to someone and i feel it coming on (this is stupid, i know go ahead and laugh!) i start reciting the pledge of alleginace in my head. Or outloud if i am like on the phone, i just cover the mouthpiece and say it! I think its because it forces my brain to concentrate it clears me up!

But its so annoying cause if i dont catch it sometimes i will type something that is totally crazy, or i will say something that makes NO sense at all, but to me makes perfect sense.
Its horribly annoying and i tried to tell my dr about it but cant explain it that well, so i just deal with it. It doesnt affect my motor skills or ability to do anything like that, so i dont worry too much about it.

amy234
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/7/2009 10:11 AM (GMT -7)   
Amanda S said...
</LI>
<LI>
Speech difficulties, I stutter or just can’t speak. I have to sit and wait for a few seconds to try again. Most of the time when that happens I feel like my head is going faster then my mouth.
</LI>

This is EXACTLY what happens to me. Had numerous MRI's done and I have multiple hemangiomas on the right temporal lobe which they suspect are causing the seizures. I would love to know what they said for you when you get your results....as I am confused because usually speech and hearing patterns come from the left side of the brain.
I am supposed to be undergoing brain surgery soon to correct the problem because years of medication therapy has failed to work for me.

Andy193
New Member


Date Joined Jan 2007
Total Posts : 5
   Posted 4/10/2009 2:37 PM (GMT -7)   
Well, its 2 years since I 1st posted about speech/hearing problems - it's reassuring to read that others have experienced very similar things. I would love to say everything's gone away, but they have carried on to varying degrees, and 2day was awful. I was singing a solo at my church's Good Friday service and I had an 'episode' and couldn't get the words out on the 2nd verse. It was sooo embarrassing and I had to go to a side room. I felt angry with myself and God for letting it happen. (please - no comments about belief/faith here though). Any comments or advice woulod be gratefully received. Many thanks.
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