Is this simp. part. sensory seizure?

[sbncmo]

Hi gang. I've figured out what type most of my seizures are. Those of you familiar with me know I have myoclonic, tonic, occasional complex partial, and several simple partial seizures - motor, sensory & psychic.

I keep having strange sensations on the right side of my head, sort of in the ear, but more extensive than just the ear. It's hard to describe - an odd feeling (not pain or pressure), odd sounds (like appliance motors), humming, etc. I feel like I want to reach in & pull that section of my brain & ear out. I know it is not ear related - ENT thouroughly checked it out.

I am assuming it is a simple partial sensory seizure. I can go for quite a spell without any of this particular type of "seizure" happening, then have them repeatedly for several days. It seems to be that way with some of the other seizures as well - nothing for a while, then multiple seizures lasting for days at a time. And then some of them are daily events, multiple times every day.

Anyway, I just wondered if I am correct in my assumption. Is it simple partial sensory seizure?onder:

Appreciate any help. :shake:

Shelia

 

[Nakamova]

There can definitely be simple partials that are sounds, or sound-related sensations. Since you got checked out by an ENT that seems the most likely diagnosis. Unless a bug crawled in your ear (Kidding! Just kidding!).

You might want to consider upping the magnesium in your diet. (Magnesium protects the nerves in the inner ear and is also a powerful glutamate inhibitor.)

 

[Literophile]

I keep having strange sensations on the right side of my head, sort of in the ear, but more extensive than just the ear. It's hard to describe - an odd feeling (not pain or pressure), odd sounds (like appliance motors), humming, etc. I feel like I want to reach in & pull that section of my brain & ear out. I know it is not ear related - ENT thouroughly checked it out.

:O I have the same kind of thing! Sometimes, it feels like my head suddenly explodes and there's weird feeling in my right ear with ringing/humming. Sometime this comes with an aura, sometimes with a headache. Don't know what it is, though... sorry.

 

[Endless]

The noises in the ear do happen, for sure. My ears ring and it usually happens around when I have an aura. My epi says it's not a seizure. I disagree.

On that bug in the head thing... here's a string on that. Don't read it unless you have a tough stomach. Helpful, though, if you are camping and days from medical care: http://forums.studentdoctor.net/archive/index.php/t-228221.html

 

[sandi]

Do you ever and somtimes the buzzing is there hear like other undecernable noises like a banging in the distant or wind chimey kinda sound?
You can't tell where it's coming from direction wise.

 

[sbncmo]

Thanks for all the input. I'm going to see my nuero in about an hour. I'm going to ask him about the head/ear thing. I had it last night - lasted a few hours. But no problem with it so far today. I also had the simp. part. psychic last night - could hardly get any words out, but it only last a minute or so. Had it the same time as the ear thing. The strange thing about the head/ear sensations is they are mostly on the right side, which is the side I am mostly deaf in. But I have had it one time on the left side. I'll let you know what my neuro says about it.

As for the magnesium - no can do - allergic to it in about any form - mag citrate, mag sulfate, mag caltrate, etc. I can't even drink bottles water that has magnesium added to it.

I've been going thru a difficult time emotionally with all of this again. I have bi-polar & that doesn't help the moods. Last week I must have been on a manic because I was saying things like "So what if the doctor can't find a medicine for me. I've lived with seizures all my life, I guess I can keep living that way. It's no big deal." Now I'm definitely on the down side. I'm so tired of this. I hate having seizures. Some are annoying, some are painful. I hate the restrictions it places on me. I hate not having medication to control it. And it's not just the epilepsy. I have excruciating pain from a number of other health issues & I'm tired of not having any relief from it.

Sorry - I know this isn't the place to talk about my other problems. Anyway, when I see my neuro, I'm going to ask him what I can expect with regard to the seizures since he says there are no other meds for me to take. Might the seizures lessen? Or will they get worse? Will I progress to the point of having grand mals like I had as a child? We'll see what he says & I'll keep you posted. Thanks again everyone.\

Shelia

 

[sbncmo]

Hi again. Just back from neuro's office. Found out there is a new med on the market - Vimpat - and he is trying me on it. He said I shouldn't have the side effects from it that I've had from all the others. One unfortunate effect of the Keppra, Topamax, & Lamictal I've taken for the last 3 months is that I've gained another 20 pounds. I took Seroquel 4 years ago & it made me gain 60 pounds in a month & I've never been able to lose that. Now I have another 20! It makes me sick! But, hopefully nothing like that this time.

I asked him my questions. Of course there is no predicting what direction my epilepsy will take, whether better or worse, if I end up not being able to take any medicine. So we are really hoping the Vimpat will work. I asked about the sensation in my ear/head & he believes it is a sensory seizure. I think I was having a sensory seizure while he was examining me, because he went to shine the light in my eye & I jumped back, couldn't take the light.

I also talked to him about the struggle I'm having with my emotions & he said it was totally understandable. I asked him about memory problems & he said they are from both the epilepsy & the bi-polar. I told him how yesterday my son was saying how he loved the blue jeep we used to have. I said we never had a blue jeep. He said we did, about 6 years ago - that I loved it because the engine sounded like my cat purring. I have no memory of that jeep. Or of a GREAT many other things my family talks about.

Anyway, just wanted to let you know about the ear/head thing, that it is a sensory seizure & let you know that I'm not giving up hope yet since there is another med to try.

Shelia

 

[neilB]

Hi Sheila,

Well hopefully your visit helped to answer some questions. Did the neurologist mention what the "potential" side effects of Vimpat are? I'm just curious as my neuro mentioned the possibility of changing from Keppra to something else, just not sure what yet. I also have a "ringing" in my ear, not sure if that is what you are experiencing.

 

[Endless]

I had ringing in my ears on Trileptal. It's much better now that I'm on Lamictal.

I gained a total of 30 lbs on the anti seizure meds, but it was UP down UP down UP down.

 

[sbncmo]

My neuro didn't mention any specific side effects, but said he didn't think I would have any trouble since it is different from other seizure meds. I did look up the side effects on rxlist.com & it stated this: "The adverse events most commonly ( > 1% in the VIMPAT total group and greater than placebo) leading to discontinuation were dizziness, ataxia (wobbliness, weakness of muscles), vomiting, diplopia (double vision), nausea, vertigo, and vision blurred." I also looked up the components of vimpat & one ingredient is magnesium stearate, which magnesium in about any form causes real problems for me. So I'm hoping that the magnesium stearate is in such a minute amount that it won't cause a problem. This is a new drug & is still being tested. I don't think many neuro's will prescribe it unless a patient has problems with medication, such as I have.

Neil, you mentioned your neuro wanting to take you off Keppra. Have you been having some problems with it? What other ep meds have you taken? Keppra, Topamax & Lyrica caused some serious problems for me - extreme anger (on a scale of 1-10, my anger was probably 15). Lamital made me very sick. Depakote caused me to have tremors for which I had to take Trileptal for 2 years to get it under control. Neurontin caused me to gain 60 pounds & didn't help to boot.

There are so many meds out there & everyone reacts differently to them. I know my neuro is starting to look at the ingredients of meds to try to find something that I might not react to. As frustrated as I feel with trying to cope with ep & med problems, I feel for my docs as well. Their hands are tied, they are so limited in what they can do to try to help me.

As far as the sound in my ear, it is very difficult to describe. It isn't exactly a ringing sound. It's more like a vibration on the right side of my head and sort of sounds like an appliance motor, like a refrigerator or vaccuum & sometimes the sensation is pulsating. For me it's more of a feeling than an actual sound. Like I said, it's difficult to explain. Sometimes I have it every day, lasting for 3-4 hours, then I can go for days without it. But the intensity of it makes me want to start hitting that side of my head, I want to reach inside & pull it out. I do notice that when I'm experiencing it, sounds are more distorted, which is normal for sensory seizures.

I will say I'm more comfortable with my neuro than I was a few months ago. He started out dismissing everything before he even ran any tests. Now he has the test results & has even seen me having a couple of seizures. And I think he respects me because I have educated myself on the types of seizures I have. I can talk about specific seizures, naming them. He knows I know what I'm talking about, what I'm dealing with. I think it makes a difference with some doctors.

Well, I hope this helps some. That's what we are all here for - to help each other, to learn about what we are dealing with, to ask questions. This is a great support system.

Shelia

 

[Endless]

Hi, Sheila,

I get a buzzing feeling in my head, and sometimes in my body. Like an electrical feeling. Sometimes it lasts a couple of minutes, sometime it lasts all day. My epi says it is not an aura, not a seizure. He's baffled. He said it must be psychogenic.

I got a key to my puzzle when I went off Trileptal. I went off a tad too fast (understatement!) and I got the buzzing feeling x 100. So I think it might be medication related. I don't know how or why. Maybe when I was still on Trileptal or the other drugs it happened when my dosage was wearing off, right before the next one? And it is actually drug withdrawl? I didn't record these as seizures in my diary so it's hard to tell. I haven't had the buzzing feeling so far on Lamictal.

Go figure.

Our disorder plus the meds is so confusing and interrelated sometimes it's hard to tell what causes what.

Anyway, my point is to be sure to record EVERYTHING in your seizure journal, no matter how trivial. Sometimes you begin to see a pattern. That's how I found out my migraines are postictal, not a chronic condition.

What you are experiencing is probably a seizure. But give it time and keep an open mind so you can see it if there is a pattern that says it is something else.

 

[neilB]

Hi Sheila,

The Neuro actually mentioned Neurontin (as a possible second medication or by itself, but she hasn't made a decision. I think the reasoniing she is using is that I have the ringing in the ears and tingling sensations and twice I had my left arm jerk uncontrollably but for only a few seconds. I had a 72 hour video eeg and waiting for the results. She also wants another MRI and an MRA, so I'm in a holding pattern.

 

[sbncmo]

Hi Endless. Now here's a problem - one neuro says it is a sensory seizure, another says it is psychogenic. How are we supposed to know what it is or how to treat it if the professionals don't even agree? I know I sure hate that feeling in my head! I've had it going on for a few months now - on and off ep meds.

You mentioned having them in your body sometimes. Now, this is weird, & all of you may laugh, but I get a vibration in my left leg a minute before I have a simp. part. psychic seizure. I can't figure out the connection, but once I have that vibration, a minute later I can't speak right or comprehend what others are saying. It's very consistent - always the same spot, always the same result.

Neil, I'm glad your neuro is weighing everything. Although I don't know why she would hold off changng meds because of the ringing & tingling sensations. But, she is the professional. My mom has been on Neurontin for years with no problem, but I couldn't take it. We are all different. My doctor also mentioned a video EEG as a possiblity if the Vimpat doesn't work. I qustioned him about the reliability of that - what if I don't have a seizure during that period - wouldn't it be a waste of time & money? But he said it would pick up seizures that I'm not consciously aware of having. But that is for future consideration. I know how frustrated you are being in a "holding pattern." It's so hard to deal with this every day & it's harder when the professionals we rely upon aren't able to help us as soon as we'd like, if at all. Hang in there. Hopefully we will all get the help we need.

Shelia

 

[desiderata]

Make the noises stop...


I also have a buzzing/humming noise in my head. I hear it when I am in a quiet environment...normally, that means when I am trying to sleep. I was diagnosed with a seizure disorder after a stroke in 2008. After trying a variety of medications, I am currently on 4000 mg. of Keppra XR. I have been to ENT several times. My neuro doesn't have an answer for me. All I know is that I am unable to sleep, and that stresses me out. Stress and sleep deprivation triggers my seizures...and so it goes. The noise, which I cannot pinpoint as being in my ear or in my head (left side,) began 2 years ago. It lasted for several months. Then it stopped. Now it's back again with a vengeance. I'm retired, not driving, and enjoying my life. I do, however, just want to get a good night's rest!

 

[Nakamova]

Maybe try adding a magnesium supp. to see if it helps? Not a big investment if it doesn't.

 

[sbncmo]

Thanks for the suggestion Nakamova, but I am highly allergic to magnesium supplements. However, since I first posted this, I have changed neuro's & he made adjustments in my meds, asking my opinion, & I went from having several seizures a week to one seizure a month. It's great! Catch you later.