Epilespy or something else?
 

Hi Everyone,

I havent been here in a while. Had all sorts of upheavals & diagnoses with major depressive disorder, agoraphobia, panic & generalised anxiety disorder.

My meds have been changing to hopefully treat & control those things, but I'm having a real problem with what I think may be epilepsy related symptoms, but not sure.

Any insight, advice and input is gratefully received.

I am hearing music in my left ear. Classical, opera, gregorian chant type stuff. When I was re-diagnosed with E I was given an auditory test and was told I have 30% loss of hearing on my right side.

This coupled with tinitus is driving me mad. I also speak different languages in my mind, and I can understand what I am saying. This is freaky. French, German, Italian, Greek and Gaelic. Only a few words at any given time, but it interlopes into my thoughts several times a day without warning.

Before I go to the GP to get referred to a new Neuro, I would appreciate reading about anyones experiences in this or a similar vein. If I can tell her "Hey others have had this", then it seems much less freaky.

I recently had my meds changed to Cymbalta (this was starting to happen before that though), and I was wondering if there could be something in Cymbalta that is interfering with my epilepsy meds?

I've also got a low grade permanent headache, not sure whether that is the cymbalta or the epilepsy either.

Will be grateful for all replies,

Thanks,
Rhiannon

Welcome back Rhiannon. :hug:

Hey R. I have actualy heard of this befor, where people could speak multi diffrent languages without ever even learning it. It has nothing to do with epilepsy though. I forget the name of it, its audio somthn, but im sure you can find it on the internet.

Hi Rhianoon,
I'm no neuro but after 37 yrs. of seizures it sounds like you are having audio sz. and that's when you hear sounds that are not really there it can happen to people who have complex partial sz. like I have. Often before the sz. starts I get a nervous feeling in my stomach and sometimes I will hear one word repeated over and over again. My best advice to you is to go to an Epilepsy Center and see an Epileptologist, Dr. specialzing in epilepsy.
Take my word headaches, depression and anxiety are all part of epilepsy. You need to have a e.e.g., MRI, CAT Scan, and try to start vitamin B12 1000 mcg once a day. Also take note if you have more headaches and possible sz. when there' s low pressure in the weather. Many people who have epilepsy are often effected by the weather and a low pressure will trigger sz. for many people. I've found taking mysoline and Diamox the best help for my complex partial sz. which are the hardest type of sz. to control. Here's wishing you well and May God Bless You!

Sue

Oh Sue you may not be a neuro but you sure are an earth angel!

I haven't seen a neuro for far too long. I've had the mri scans & eeg, all show epilepsy, which was lucky really as I'm told that often it doesn't show up on most tests.

I was taking B12 but it was interfering with the warfarin (I take 13mg daily). So rather than reduce the warfarin the doc siad to stop it. Though now I'm seeing a new doc she may reduce the warfarin (which I think is poison).

Thank you so very much Sue, you have no idea how much you have helped me. I honestly thought I was going insane. I'm going to print up your reply and take it with me to the gp and the neuro.

I'm very sensitive to drugs and am allergic to many epilepsy meds. I can't remember all I've had so far but have reacted to all but tegretol & Neurontin. But the neurontin dose was reduced a few months before this started to happen.

At first I thought I was just taking "music" out of every day noises. But when it escalated I knew it was more than that. I've been quiet about it because with the depression and anxiety I've been worried that the pdoc would toss me in a lockdown ward:eek:.

Sue you really are an angel, thank you so very very much :hug:

Oh I'm so sorry! I meant to thank everyone who responded. It feels so much better not feeling alone and lost.

Some of the "seizures" are so strange that most people don't even think they're seizures at all. So having here to come to does make a difference.

So a huge thanks to everyone

((((:hug:))))
Rhiannon

Hi Rhianoon,
I'm glad to of been of help to you! You mentioned that you have taken the drugs tegretol and neurontin. I've taken both of those drugs also. It's been proven that Neurontin can cause a persons seizures (sz.) to get worse in many cases so please be careful. I was on neurontin and it caused me to have absence status seizures where it led to more brain damage. The drug company that makes neurontin just had a 3.2 billion dollar lawsuit and this is the 4h lawsuit with this co. Tegretol worked good for me for many yrs. but then I started to break out with a rash. Stay away from Trileptal because Trileptal is like a 2nd cousin the tegretol they are so similar. I've learned over the yrs. to speak with my pharmacist they know much more about the drugs than Drs. do.
One other thing you might want to do is to take note if when you listen to music or hear certain sounds on tv or even a persons voice take note if it puts you into a sz. Sometimes a person is sensitive to sounds which can trigger sz. Here's wishing you well and May God Bless You!

Sue

Thanks Sue,

I am at present trying to get my gp to try me on Trazodone. That is apparently for everything but making breakfast in bed. So I'd like to give it a try to see how it goes.

I would like to stop the neurontin and my previous gp wanted to get me off tegretol, but that is the only thing that has worked without allergic reaction so far. But I'm happy to keep trying until we find one that suits me.

Funny you mention the sounds. We had a guy here yesterday installing a satellite dish and the drill was awful and put me out for the count. Apparently my partner started looking at me as soon as it started because he said he has seen things like that send me out before. I wasn't aware of it.

I slept for a fair while afterwards, and and still slept til 3am as usual so that was the best sleep I've had in a while. Got a rotter of a headache today though. And I feel a bit "spacey". All this stuff is tiring and draining,

Anyhoo thanks for your help. I'm very grateful, if you can add anything at any time I'd appreciate it,:hug:

Rhiannon

:grouphug:[jUST TO REITERATE WHAT i SAID ON ANOTHER POST,I dont have languages in my head but I have songs from my teenho0od and Christmas songs. They get so bad I sing them out loud with the addition of the last word spoken to me.I also cant hear awful news about children because it takes over my brain for days as I twist it into something even worse.on my other posts I listed some but not all recent symptoms.Also,Im completely alone family too busy have one friend left who takes me out occasionally but Im usually stuck here with 3 young kids and a boyfriend I dont share everything with him because my symptoms are not of this world.Thankseds have been changing to hopefully treat & control those things, but I'm having a real problem with what I think may be epilepsy related symptoms, but not sure.

Any insight, advice and input is gratefully received.

I am hearing music in my left ear. Classical, opera, gregorian chant type stuff. When I was re-diagnosed with E I was given an auditory test and was told I have 30% loss of hearing on my right side.

This coupled with tinitus is driving me mad. I also speak different languages in my mind, and I can understand what I am saying. This is freaky. French, German, Italian, Greek and Gaelic. Only a few words at any given time, but it interlopes into my thoughts several times a day without warning.

Before I go to the GP to get referred to a new Neuro, I would appreciate reading about anyones experiences in this or a similar vein. If I can tell her "Hey others have had this", then it seems much less freaky.

I recently had my meds changed to Cymbalta (this was starting to happen before that though), and I was wondering if there could be something in Cymbalta that is interfering with my epilepsy meds?

I've also got a low grade permanent headache, not sure whether that is the cymbalta or the epilepsy either.

Will be grateful for all replies,

Thanks,
Rhiannon[/QUOTE]

sorry,think i butchered your post-Im computer illiterate.Next time I wont try to delete a misspelled word!

just to get clear... before i assume you have not.

have you actually ever been exposed to these languages in your life? (even not for a long period... even perhaps during early infancy?)

~ waves ~

lol I wouldn't worry about it Mel. I do hope you don't feel too alone though, Pm me any time if you want to chat :hug:

Hi Waves (*Chuckles at High Waves*)

No, I can't say that I can ever remember anything like that. I do remember from a very young age. People don't believe me but I remember the frst time I opened my eyes after being born and seeing the midwife slapping the trainee midwife for doing something stupid (won't write what here). And I remember very clearly seeing, not in black & white, but grey, various shades of grey and some white, like the nurses caps & aprons were white.

I even remember my mum being gobsmacked when I asked her "why the lady hit the girl when I was borned?" To this day it freaks her that I saw it & that I remember it. off topic sorry...

I was never exposed to anything that could explain the types of conversations and words that come up...What thinketh ye?

well that blows that theory
 

Dear RhiannonsMoon,

what i was thinking was... if you had been exposed, but you haven't :confused: that you acquired some understanding of these languages - perhaps just phrases commonly heard combined with actions - a child's brain can hardwire that... in your linguistic centers which are in the temporal lobe(s) (different languages may be in different lobe) ... so i was thinking a temporal lobe sz could be "waking up buried languages."

but that doesn't fly if you haven't actually been exposed to the languages! :o

unless of course you are a believer in past lives, but i wasn't heading that direction, i was thinking on a pure neurological, this life basis. you could say i was moonstruck :p by your userid and the Gaelic... even though Welsh would have been a closer fit... there is that proximity, and you have spelling particularities common to my own early schooling. ;) (is that cryptic enough!)

i suppose it is possible you had visitors as a child that you don't recall because of being asleep by then... but perhaps not completely. now i'm really REALLY stretching it.

seriously, i will see what i can find out assuming you indeed had NO exposure, as it is we do have this input:
i'm into languages... so i'm... curiouser and curiouser!

must be awfully annoying though. i do actually speak several languages and when i dream sometimes my dreams contain "composite speech."

when i'm awake i can and do mishmash two languages with my family who also speak both, but that's different - not an intrusive thing. when i have hypomania.... yikes. then i have things like the typical "tune you can't get out of your head" - but i don't actually hear it as in a hallucination. the problem i have however is that, the phenomenon is multiplied... i might have 3 different songs overlaid all playing intertwined somehow (plus loose verbal nonsense on the side.) that gets awfully distracting and the songs have on occasion been in different languages which gets even more "interesting" :rolleyes: but this has nothing to do with epilepsy either, and is not remarkable insomuch as i do speak the languages.

i'll poke around and let you know when i find something. ;)

~ waves ~ from across the ocean

Thanks Waves,

I guess anything is possible. I must change my answer though. Because when I was a kid my parents took me on a cruise and the cruise ship was Greek and the crew were mostly Greek. How could I forget something like that?? Sorry. But the other languages apart from the Gaelic which was widespread where I lived as a child but I didn't think I had picked any of it up. Obviously my brain was working without my full understanding (typical Irish). My Mother is Welsh but I've never heard her actually speak the language, not that I can remember...Boy you've started an avalanche here lol...

Thanks for your help...I do have TL epilepsy, so maybe I'm having flash backs to every foreign film I ever saw that had subtitles (we have international free to air tv here and I like to watch that, always have done, as an adult)...Thank You for making me think

Aha!
 

Then it makes sense. A child will absorb language like a sponge, and if you do not use it, you might seem to have forgotten it as an adult ... or it might seem you never learned.

But with TLE, having had juvenile exposure to those languges, then yeah, i'd say it all adds up. Those auditory hallucinations do not surprise me at all, nor that you understand the phrases spoken.

Hang in there! I things can get under control soon. It does not sound like a picnic. :o

((( hugs )))

~ waves ~ glad to share a thinking cap any time :)

Hi Rhiannon,

I stumbled upon this post and must say it is intriguing... about hearing all the languages. I think I believe in genetic memory... that things learned by our ancestors are stored somewhere in our brains and may be recalled under some circumstances... so I guess that might sync with past life regressions. Except I don't know if I'd believe the past lives are personal ones or ones of my ancesters. Perhaps you should consider seeing someone for a past life regressions session... it might be interesting! I've not had it done, but I know of someone who did, and mostly found it entertaining.

Otherwise, in regard to history of seizures, major depressive disorder, agoraphobia, panic & generalised anxiety disorder..... I was wondering if you have ever heard about or been tested for Pyroluria? Check out the right bar for some symptoms and labs that do testing. We used BioCenter to test my daughter and she was positive. Her main symptoms included seizures, mood swings, depression, anxiety, brainfog, sensitivity to lights, sounds, and odors, freuqent general illness (throat infections, sinus infections, UTI's). Food sensitivity is not uncommon.
http://jccglutenfree.googlepages.com/pyroluria

whatdyaknow... even found a youtube video explaining it.
http://www.youtube.com/watch?v=o1OJ87eA0Lg

Hi JC,

Thanks for the information. There are a lot of symptoms there that I don't have though.

As far as the PLG..I'm a qualified PLG Therapist. I've been on many self guided journies, and journies guided by other therapists.

I'ts a fascinating thing to do, as long as one is guided through the levels only and then allowed to enter the experience on their own with nothing implanted into their mind.

Thanks again for the information though I really appreciate you going to all that trouble. I will mention it to my Dr. Maybe she will order some tests. I'll let you know,

Cheers,
Rhiannon

The list is of possible symptoms... nobody will have all of them. Lack of dream recall, one of the hallmark symptoms, is something my daughter didn't have (although she did sleep walk!). Anyway, just a thought... especially since treatment with B6 can resolve seizures when this is the problem.

I too have auditory seizures. Mine are very, very loud; steam locomotive sounds and helicopters like I'm standing right next to them. The likelihood of there being either in my living room is zero. Sometimes before I go to sleep, I hear a street sweeper; at 11pm, not in my burg!
Hearing music and voices that aren't there; that happens too. Used to drive my hubby crazy singing every song that just popped into my head unbidden; haven't done that in a very long time. I seem to have a detailed memory for music, with or without lyrics, and I think that's where the music thing comes from.

Hi again JC,
I've been on the B6 it didn't help the sz's. I still sleepwalk, have done since I could walk, my parents would find me outside the house even though I couldn't reach the door lock me being 2'6" and the lock being 5' off the ground (none of us ever could work that out).

Hi Ijp

It's madenning isn't it how they are right in your ears? I've noticed another one over the last few days. A clicking in my right ear. Not in the left. it is a low clicking sound as if there is a rattle in my ear.

I need a good sleep and a good neuro...not sure which one I need first

permanent headaches
 

Hi RhiannonsMoon,

I'm replying to your original post. I was diagnosed with TLE in September of this past year, after ten years of being treated for anxiety, depression, sleep disorders. I haven't experienced auditiory hallucinations of the musical type, but I seem to have a keen ear more than ever having the ability to hear music and all its parts in clear replay in my mind as well as reproducing it on guitar or keyboard. I do have the permanent headache, it is on the left side of my head and it seems to have a large impact on my moods and ability to think. I am now 26 and it seems I've had this headache since I was 14-15 years old.
What do your headaches feel like and how is your ability to think clearly affected by your TLE?

All us T.L.E need to pay more attention to the spiritual aspects of the illness/gift. Speaking in differant languages may only be you receiving spirits that dont speak English. I've seen this before when someone I met was speaking Aramaic or some such ancient language. Did you ever consider that your name came from Rhiana the godess of horses? Do you have a thing about horses by any chance? The Dove, Alan Donald Kennedy