Hi all! Input much appreciated!

travel bug

travel bug

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Hello everyone!

I‘ve been lurking here for about a week and love all the input, diversity of posters, and variety of topics. I thought I’d finally come out of the shadows and introduce myself.:girl:

I’ve had epilepsy since early in 2007 when a seizure sent me to the ER where I was diagnosed with a brain tumor. The seizure was (as far as I can figure from what I’ve read) simple partial motor onset, secondarily generalized. I was put on Dilantin which didn’t work well for me as I couldn’t maintain a steady level. I had a couple more simple partial motors which knocked me to the ground and left me helpless though aware of my surroundings. Switched to Keppra, 1000mg/day, which worked well until the fall of 2008 when I had episodes of a strange short circuit feeling in my head with phantom burning tire smell. I wasn’t sure if they were seizures, but went to my GP just in case. He increased my Keppra to 1500mg/day and sent me for an MRI a few months before I was scheduled to have one. It showed some new tumor growth and I was finally scheduled for surgery. My doctors were hesitant before due to the tumor’s location near the motor cortex. After surgery, I had frequent simple partial motor seizures, but they were far, far less severe and were preceded by auras which helped a lot because previous ones struck like lightning. Anyway, seizures were not only less severe, but steadily became less frequent. I’ve been doing well seizure-wise (knock wood) except…argh! I’ve had spasms in the leg that was affected by surgery. Immediately after surgery, my leg was completely limp and I had to have physical therapy to walk again. Also after surgery I had all kinds of spasms, but they all went away long ago. So I wonder if the spasms are in fact focal seizures or something. I asked my neuro, he says maybe and suggested adding Tegretol(spelling?), but I don’t want to add meds willy-nilly. I was advised by some very nice, knowledgeable ladies on another epilepsy board to keep a journal to find any possible triggers, but I’ve not been able to find any correlations. Sometimes I think I’ve found a link and go a night without incident, only to have it return the next. Oh, by the way, they occur when I’m tired or trying to sleep. The spasms take the form of my foot flapping up and down and sometimes end with my foot pulled up towards the shin with my toes splayed out, and can happen 2-3 times per minute and continue for hours. I wouldn’t worry about it except I’m exhausted! I would like to have an EEG to try to see for sure if these are seizures (I know they aren’t always helpful) but my doctor doesn’t seem inclined. Am I wrong to think it would be better to know what we're dealing with before I have to risk possibly icky side-effects?:dontknow:

I’m so sorry for rattling on so long:oops:, but I would appreciate any input about what focal seizures are like, Tegretol, or any input at all.

Thanks!:)
 
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Hi travel bug, welcome!

Does your surgeon think the leg spasms are related to the surgery? It would make sense for them to be a result of scarring around the surgery site, since it was near the motor cortex.
 
Welcome Travel Bug.
You have been on quite a journey, but you seem to have quite the positive attitude. I admire that.

I would take magnesium to see if it improves. This mineral has made a dramatic change in my life, and it is reported that many of us are deficient. Easy enough to see if it improves your situation.

I am glad that you decided to join the conversation here at CWE
 
Thanks everyone! I think I got fixated on the idea that these were some sort of seizure because all my muscle spasms-and I had a lot right after surgery-went away within a couple of weeks. But these may well be spasms after all.

Nakamova, thanks for the input:) Yes, I think you are right that these are related directly to the surgery, but I don’t think it’s the sole cause…at least I really hope not!:) These particular spasms (or whatever) started several months after surgery, and at first weren’t so persistent, but have become progressively worse.

Bernard, thanks for the welcome to your excellent forum! The article about the possible causes of spasms was very interesting. Low potassium is a definite possibility. I vaguely remember being told that my potassium was low just before surgery; they gave me a drip or something. (All that time is a bit of a haze) But also, at my last check-up after finishing chemo (yea!) my oncologist told me that my potassium levels had been trending down over the course of my chemo treatments. My last blood check showed them to be just high enough to avoid having to take a prescription supplement if I promised to eat plenty of bananas, etc. I have bananas and blueberries coming out my ears:p but maybe it hasn’t been enough.

Robin, thanks for the kind words:) After reading Bernard’s article, I think you’re right about trying magnesium. It couldn’t hurt, and if it helped I’d be sooo happy!

Thanks again!:)
 
Welcome

Welcome , as I read your post I wondered if they had done a scan recently to make sure there wasn't any regrowth of the tumor or scar tissue.
 
Hi Sandy,:)

Yes, I just had an MRI in June and was discussing the results with my local neurosurgeon (I had the surgery in another state) when I brought up the spasms and the possibility they may be focal seizures. Well the good news-really good news in fact-is that the MRI looked better than anticipated!, but I think my doctor was so jazzed about the results that he was a little thrown by the question and didn't give it his full attention. I think I'll talk to my GP and get checked for low potassium, magnesium or thyroid problems before I hound my neuro.
 
Well, I went to my GP last Thursday and discussed my spasm/seizure problem. He's much easier to talk to than my neurosurgeon:) He tested me for potassium etc. levels plus thyroid problems. Everything came back normal. :tup: I guess that's good, but now I feel like I'm back to square one trying to figure out the cause:ponder: However, I haven't had much problem with it the last week :bjump:

Which brings me to another possible cause if they are seizures: This last week I've been more active on this board as well as downloading and tinkering with pictures etc. before going to bed. Before, I used to listen to music on my computer while playing games, not anything with flashing lights, just things like solitare. I had thought maybe the games might be a culprit so I quit playing them with no effect on the foot flaps...:piano:so, has anyone ever heard of music causing seizure activity???:huh: I would hate to think so because I love my music! I could understand having a seizure while listening, but not all through the night after listening. But it just seems like perfect timing between when I stopped listening to music and when I started having fewer problems with my flapping.

I know if it's not bothering me now I shouldn't worry about it. Plus I know there are people here with far worse problems. But I'm a curious and stubborn person and I want to figure this out.

Again, any input would be appreciated:rose:
 
Not having or changing ones proper sleep patterns can actually cause seizures throughout the night. When one uses a computer time can fly by much quicker but in reality it's not. You just have to get that one game out or finish the job required. It's exactly like my behaviours with a computer and I suffer the consequences of having a seizure throughout the night especially early in the morning.
Music being a culprit or a trigger for seizure activity. I hope not. I have had training in music and have told people for the ultimate relaxation put a pair of headphones and listen to their favorite music in a dark place.
Perhaps the combination of any things happening at one time - concentration on the computer, music entering in you're eyes at a time where one should be winding down into a good nights sleep is not helping at all.
 
travel bug said:
has anyone ever heard of music causing seizure activity???
Click to expand...

PhylisFeinerJohnson posted something about that:

Musicogenic Epilepsy
This is a form of reflexive epilepsy in which a seizure is triggered by music or specific frequencies. Sensitivity to music varies from person to person. Some people are sensitive to a particular tone from a voice or instrument. Others are sensitive to a particular musical style or rhythm. Still others are sensitive to a range of noises.
Click to expand...

http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-3240/
 
seizures

I have sometimes a delayed reaction -not immediate -almost cummulative effect sometimes.
It's not just the computer,but the lighting conditions, timing ect.
It's a shame that music can be a trigger, but I would just test the theory before, losing something you enjoy -maybe even then it's worth it sometimes.
 
Thanks Aussie! Thanks epileric! Thanks sandi!

I think you've all hit on something. It really could be a combination of time spent at the computer, plus the kind of music I listen to-I tend to like more uptempo music to cheer me up, and how long I listen. I guess I could test the theory tonight, but I've enjoyed being able to sleep:) I don't plan on giving up music, it means too much to me! But I'll just have to listen earlier in the day. Maybe later I'll experiment with different types of music at bedtime.

Thanks again:)
 
Hello Travel Bug!...

I'm sorry to be quick...but I'm headed out the door unfortunately!

Check out the links to the Music/Epilepsy connection threads in my signature!

I personally can vouch for music being a POSITIVE influence on my epilepsy experience after finding some specific tunes that help me 'feel better' when I need it. I also think it's possible there are some NEGATIVE influences musically out there for me. I can't recall any resulting in a seizure, but this could be because the stuff that annoys me so much gets avoided quickly enough to dissuade an episode.

There is DEFINITELY a connection with some folks!

Peace,
Speber
:rock:
 
Hello speber:)

WOW! Thanks for all the great information! It's going to take a while to go through it all:einstein:, but it looks like fascinating reading whether my seizures(if they are in fact seizures) are triggered by music or not. From what I've been experiencing lately, and from the little bit I've read so far, it seems a distinct possibility that they are. Now if I can narrow it down to music type. I have some suspicions, but I'll try the process of elimination. I love all sorts of music - my music library is like the Monty Python bit," ...and now for something completely different.":p - so I'll have to find what works for me and when.

Again, Thanks for your help:D
 
A question I'd like to pose to consider (or maybe test on ourselves) is:

If a certain type of music triggers a seizure in someone, would it not make sense that one or more other types of music would lessen the possibility of seizures & increase our seizure threshold?

This thread brought that question to mind.
 
epileric said:
A question I'd like to pose to consider (or maybe test on ourselves) is:

If a certain type of music triggers a seizure in someone, would it not make sense that one or more other types of music would lessen the possibility of seizures & increase our seizure threshold?

This thread brought that question to mind.
Click to expand...

My own experiences have shown ME that I can:

  1. Stave off seizures with certain music
  2. Lessen duration and severity of the post-ictal period with music.
HOWEVER...and this is the big catch...I believe my brain is 'molten'/'gelatenous'/'ever-evolving' and will NOT be content with specific 'audio choices' for long. While they DO appear to work (THANK GOD!)...they lessen in worthiness just as drugs do over time! I have likened this to the brain becoming 'bored' with the piece as well...needing something fresh and new.

Because of all this, I keep on the lookout for any audio that 'grabs' me in a really calming, nice way...and makes me want to hear it again. That piece goes on my list for stuff for me to try in emergency situations.

:twocents:
Speber

:rock:
 
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Speber, that's so great you can stave off seizures with music. I wish I could too just so that I could get a doctors note to listen to music wherever I am.

But seriously... I think I need to rephrase my question. What I was wondering is if someones seizures are triggered by a specific music, could that same persons seizures be lessened by another type of music? If a seizure is triggered when a specific part of the brain is stimulated (the part that we use to listen to music), wouldn't calming that same part of the brain with other music help the seizures?
 
I see what you're getting at Eric. It would have to be a very personalized kind of experiment, with someone who has plenty of music-triggered seizures and has lots of different kinds of music ready to go on their iPod.

I have a half hour recording called "Falling Water". That's all it is, the sound of a babbling brook. It's supposed to stimulate "good" brain waves. I have no idea if it works (although it makes a great background sound), but it would be interesting to see if listening to it a few times a day made a difference for someone with aural seizures. Another thought would be to pipe sounds into only the left ear (for seizures that start on the right side of the brain) and vice versa -- in order to "distract" the part of the brain that tends to get into trouble.
 
Nakamova said:
I have a half hour recording called "Falling Water". That's all it is, the sound of a babbling brook. It's supposed to stimulate "good" brain waves. I have no idea if it works (although it makes a great background sound), but it would be interesting to see if listening to it a few times a day made a difference for someone with aural seizures. Another thought would be to pipe sounds into only the left ear (for seizures that start on the right side of the brain) and vice versa -- in order to "distract" the part of the brain that tends to get into trouble.
Click to expand...

Years ago I left the city to live in the woods near the ocean. At night it was quiet enough that I went to sleep of the rhythm of the waves. The first 2 or 3 nights it drove me nuts but after that I found I not only slept deeply & heavily but that I woke up feeling rested, alive & alert so I do believe water does have some sort of healing properties, even if science hasn't discovered them yet. I have a water fountain over 3 feet high that is like a giant washboard that the water runs down. I occasionally keep it on all day but I usually go to sleep with it on, especially when I'm stressed of have insomnia.

I do like your idea of listening to music with only 1 ear but doesn't one side of the brain control the opposite side of the body & if so, what would that mean in how the experiment is set up?
 
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