Anyone have "somato-sensory" partials or parietal lobe epilepsy?

[Matthew74]

Does anyone have seizures that are just sensations? I think that I have "parietal lobe epilepsy", and "somato-sensory" simple partials.

Basically I have several kinds of seizrues:

1. A "weak" feeling on my right side.
2. A "fuzzy" feeling in my right cheek and face.
3. A "tingly" feeling on my scalp, that can spread to my left arm, both arms, and my left leg.
4. "Shocks" in my right arm which lead to a simple partial or complex partial that is mostly feeling funny in my arm and head, and uncontrolled salivation. Sometimes I start to loose awareness of what is going on around me. I can see and hear, but can't talk. I have been told that my right arm and right leg shake somewhat, but I haven't noticed it and it must only be with bad ones.
5. Very rarely, a secondarily generalized seizure following #4.

The main thing is that they are sensory experiences, things I feel. I don't have visions, or hear things, or have deja vu. No stomach issues. I just feel funny stuff, mostly in my skin. #4 can be quite painful. The feeling of the seizure itself is painful.

I didn't realize it, but apparently my symptoms are unusual. Some doctor's aren't even sure they are seizures. I looked up frontal and temporal lobe epilepsy in a medical text and almost none of it sounded familiar. I then read about parietal lobe epilepsy and it fits me to a T. Unfortunately it's very rare. The only EEG I ever had with a full-on seizure showed activity in my parietal lobe.

Should I just tell the doctor what I think? I'd like them to come to this conclusion themselves, but so far no one has. The thing is, I think they're so focused on my frontal / temoporal lobe tumor, and my normal EEG that they don't know what to think of it. I was hoping they would take me off meds and get some good seizures on VEEG, but they didn't do that.

:comp:

- Matthew

 

[Bidwell]

YES! Tell them what you think. Bidwell

 

[epileric]

You described the same & similar sensations that I get yet my seizures were caused by a lesion on the hypothalamus far away from the parietal lobe. What happens is that the seizure can originate anywhere in the brain but they can spread & because the parietal lobe is rather central it is very likely the seizure will spread there causing various sensations.

I do think that if you do have such questions you should see someone that specializes in epilepsy, especially if it hasn't been confirmed that you have it. Then,if it is epilepsy I think you should tell the specialist what you think & ask if that is likely (or possible). If not does it not what else might cause those sensations. I feel that is the best way to learn.

 

[Matthew74]

I'm seeing an epileptologist. I will try the questioning route first, and if that doesn't get me anywhere, then go to something like, "Could it be...?" Good call.

No one has ever disputed I have epilepsy, on account of my other seizures, but at least one seemed to deny I was having sensory partials. Most don't deny it, but I don't think they quite believe it either, because they don't have an EEG to prove it. I was hoping they would take me off my meds this time to prove it. The biggest thing is that they don't seem to think it's very important. I don't know how to convince them otherwise.

I gave them a very detailed written description of my seizures. I have also tried to make clear the impact the condition has on my life. I just feel like what I say is irrelevant to them. It's terribly frustrating.

This guy however, is working with me in a couple other directions that I hope will be helpful for everything.

 

[Matthew74]

Eric,

Did you have these as simple partials, and if so, did they show up on EEG?

 

[epileric]

I used to have both simple & complex partials but neither showed up on an EEG.

I even had one neurologist tell me that I didn't have epilepsy.

 

[Niftwhich]

Matthew,

I have had the first three sensations during what my neurologist suggested might be dysautonomia episodes; and, in line with your #4, a couple of episodes of paralysis that docs thought might be narcolepsy but naysaid once I didn't fall asleep in a daytime hospital study. C'mon! I wasn't tired that day! Hospital tests are so exciting!

I'm writing because one thing that one doctor finally recommended was to get my MTHFR gene tested. With a mutation of that gene, you can wind up unable to methylate (i.e., make bioavailable) B12 and Folate. Without adequate B12, you can wind up with all kinds of signaling problems. The dysautonomia periods were so disabling and long: I would get those fuzzy, face-melting leading to leg and arm twitching feelings when I so much as sat up too long; my blood pressure was at 50 for awhile, and I don't think I was getting enough oxygen unless I was laying down. Anyway, by taking premethylated B12 and methylfolate, I've had over a year without an episode. Most docs don't test for MTHFR unless they're concerned about homocysteine levels and heart disease--but if you have one, or, like me, two mutations, you really need that methylated B to get to healing. Last Octtober was spent horizontal; this October I was dancing! If the patterns of your epilepsy don't follow an immediately recognizable pattern, perhaps it's a general signaling problem from a lack of B12. I had had my B12 tested so many times--always with high level results: but none of the doctors knew that I couldn't use what was in my bloodstream, couldn't repair neurons, until I got that test.

Best of luck!

 

[mporter]

Matthew,
I have sensory simple partials, based on the descriptions I've found of such seizures. Mine are usually limited to my left arm. I describe it as a mild electrical shock moving from above my elbow to my fingers and a feeling that my arm is too weak to use. Sometimes, they are stronger and I have an anxious feeling and a tightening of muscles on the left side of my neck as well. And they can be quite uncomfortable.
I faced extreme doubt from my first epileptologist who was convinced that what I was feeling was caused by nerves being compressed in my neck or some other nerve issue. At her request I went through a cervical spine MRI and an EMG/nerve conduction test -- both negative for any nerve issues. Making her and others doubt me even more was the fact that the only epileptiform activity ever captured on an EEG showed up on my left side, and seizure activity is almost always contralateral to the seizure focus. It was very frustrating to be told that what I was feeling every single day, all day long, couldn't be related to epilepsy (which all doctors agreed I did have.) A second opinion concluded that I did have epilepsy and that my sensory spells might be simple partials but the video EEG wasn't helpful. I now have a new epileptologist and she believes me and was receptive when I sent her research material showing that parietal lobe symptoms can be ipsilateral to the focus. But even now, no one can determine the exact focus except that, based on symptoms I had when I had a complex partial that generalized, the focus is somewhere near my language center. So, I don't know whether these are parietal lobe seizures or whether they are originating somewhere else and spreading there. Like you, I feel that some doctors don't see how this is impacting my life. My new doctor is a better listener and treats my thoughts with more respect, however.

 

[Matthew74]

"every single day, all day long"

That's awesome. I'm not alone! :bjump:

I'm pretty sure there are times when I'm not having them, but they happen so often, and come and go so subtly, not to mention I'm so used to them, that unless they are kind of strong, or moving from one place to another, I don't really pay attention. I wonder if it's a stressor having these things all the time, always being somewhat uncomfortable or distracted. I've been having them fairly constantly for almost 10 years. I wonder what that's doing to my neurons. The doctor's ask me when I had my last one, and I'm always like, "I'm having one now."

Eric, were your's frequent, or did each one go on for a long time?

I spoke with my doctor and she said she agreed they were seizures, and also about the parietal lobe.

 

[Matthew74]

Niftwich, It's great you mention that. I'm sure they are seizures because they can develop into my larger ones. You never know about stuff like that though. For example, why did I start getting these when I did? What set them off? I don't believe the nonsense about people being "over-tested". Over diagnosed or over treated sure, but I think it's good to know as much as possible. Sometimes people suffer needlessly for years because doctors don't order tests.

 

[epileric]

Eric, were your's frequent, or did each one go on for a long time?

I spoke with my doctor and she said she agreed they were seizures, and also about the parietal lobe.

Both, they were frequent & they seemed to go on a long time. I used to have at least one seizure a day with a day off every 7-10 days. The seizures felt like they went on forever but I got a stopwatch to time them & they averaged only 40-50 seconds with the odd exception that went on for over 90 seconds.

Cool that at you now know what is causing the physical sensations during a seizure. All you need to figure out is what's causing the seizures.

 

[Matthew74]

In all likelihood it's my tumor. It's pretty big and multi-located though. Mostly it's in my frontal lobe, and somewhat in my temporal. They think it's a "DNET".

We are going to try doing a diet first, and then cutting me back to one med. I'd really like to know where they're coming from, but if this stuff works I will be immensely improved. If it doesn't work, and we are looking further into surgery my doctors are going to take me off my meds with an VEEG to see if they can locate the focus, or foci. I'm ok with that.

 

[masterjen]

I have a diagnosis of frontal lobe seizures but signs of parietal-lobe/sensory seizures as well.
For me this indescribable sensation starts in my right lower ribcage area and can spread up and into my right armpit; it isn't painful but uncomfortable in that I don't like the feeling of anything touching me where the sensation is present, although moving a piece of clothing that is touching me in those areas does not make the sensation go away. The feeling can go on for several minutes or even a couple of hours. If the sensation wakes me at night, about 80% of the time a full seizure typically follows at some point in the night. The odd part to me is that my seizures mainly left-sided, although can progress to full body tonic.

 

[MAB]

Does anyone have seizures that are just sensations? I think that I have "parietal lobe epilepsy", and "somato-sensory" simple partials.

Basically I have several kinds of seizrues:

1. A "weak" feeling on my right side.
2. A "fuzzy" feeling in my right cheek and face.
3. A "tingly" feeling on my scalp, that can spread to my left arm, both arms, and my left leg.
4. "Shocks" in my right arm which lead to a simple partial or complex partial that is mostly feeling funny in my arm and head, and uncontrolled salivation. Sometimes I start to loose awareness of what is going on around me. I can see and hear, but can't talk. I have been told that my right arm and right leg shake somewhat, but I haven't noticed it and it must only be with bad ones.
5. Very rarely, a secondarily generalized seizure following #4.

The main thing is that they are sensory experiences, things I feel. I don't have visions, or hear things, or have deja vu. No stomach issues. I just feel funny stuff, mostly in my skin. #4 can be quite painful. The feeling of the seizure itself is painful.

I didn't realize it, but apparently my symptoms are unusual. Some doctor's aren't even sure they are seizures. I looked up frontal and temporal lobe epilepsy in a medical text and almost none of it sounded familiar. I then read about parietal lobe epilepsy and it fits me to a T. Unfortunately it's very rare. The only EEG I ever had with a full-on seizure showed activity in my parietal lobe.

Should I just tell the doctor what I think? I'd like them to come to this conclusion themselves, but so far no one has. The thing is, I think they're so focused on my frontal / temoporal lobe tumor, and my normal EEG that they don't know what to think of it. I was hoping they would take me off meds and get some good seizures on VEEG, but they didn't do that.

:comp:

- Matthew

I want to reply to this, in depth, as soon as my 4 yo grandson goes home. If I fall asleep I will try to respond tomorrow.

 

[MAB]

Does anyone have seizures that are just sensations? I think that I have "parietal lobe epilepsy", and "somato-sensory" simple partials.

Basically I have several kinds of seizrues:

1. A "weak" feeling on my right side.
2. A "fuzzy" feeling in my right cheek and face.
3. A "tingly" feeling on my scalp, that can spread to my left arm, both arms, and my left leg.
4. "Shocks" in my right arm which lead to a simple partial or complex partial that is mostly feeling funny in my arm and head, and uncontrolled salivation. Sometimes I start to loose awareness of what is going on around me. I can see and hear, but can't talk. I have been told that my right arm and right leg shake somewhat, but I haven't noticed it and it must only be with bad ones.
5. Very rarely, a secondarily generalized seizure following #4.

The main thing is that they are sensory experiences, things I feel. I don't have visions, or hear things, or have deja vu. No stomach issues. I just feel funny stuff, mostly in my skin. #4 can be quite painful. The feeling of the seizure itself is painful.

I didn't realize it, but apparently my symptoms are unusual. Some doctor's aren't even sure they are seizures. I looked up frontal and temporal lobe epilepsy in a medical text and almost none of it sounded familiar. I then read about parietal lobe epilepsy and it fits me to a T. Unfortunately it's very rare. The only EEG I ever had with a full-on seizure showed activity in my parietal lobe.

Should I just tell the doctor what I think? I'd like them to come to this conclusion themselves, but so far no one has. The thing is, I think they're so focused on my frontal / temoporal lobe tumor, and my normal EEG that they don't know what to think of it. I was hoping they would take me off meds and get some good seizures on VEEG, but they didn't do that.

:comp:

- Matthew

I had a very small stroke that damaged the right side of my parietal lobe . The stroke symptoms were all just perceived sensations. I called 911 and calmly told them I had a stroke. I woke my husband and told him to get dressed and I took an aspirin and waited for the life squad. They did their stroke assessment and thought I was fine. I had to insist they take me to the hospital. The ER doctor examined me and said I was probably just having TIA's but he ordered a CAT scan probably CYA. He came back in and told me I was being admitted. The next day before I could be discharged they sent a neuro in to see me. He examined me before looking at my CAT scan and told me that it was just TIA's but he was going to look at my records. He came back in the room and told me what I knew, I actually did have a stroke. He continued to get a weak feeling in my left arm and/or leg. I would constantly complain to the doctors about this weakness and exhaustion. They treated me for TIA's and constantly suggested that maybe I was depressed.

Finally I developed another symptom, phantom odors. They drove me nuts, they were so unpleasant and lasted so long. I was completely exhausted. I didn't want to tell my doctor about the odors because I thought she would think I was mentally ill. When I did tell her she immediately knew there was something going on a sent me to a new neuro.

Turns out I have been having simple partials from the day I had the stroke in July 2010. I wasn't diagnosed until Oct 2014. During that time I had 100's maybe a 1000 partials, many of them in waves, one after another.

My seizures are all sensory experiences too. My EEG didn't show anything but the parietal lobe is the part of the brain that will cause sensory feelings.

Please tell your doctor what you think. You live with your body and know what is and isn't right. Tell them exactly what part of the brain you thin is affected. If the doctor is offended, it's time to find another doctor.

The last time i saw my regular doctor she told me how great I looked even though I was complaining about severe feet and leg cramps to the point that I was afraid to drive. She did some tests and called me to say had a severe low sodium level. She told me I am very in turn with my body and should always trust myself.

I guess what I am trying to say is insist that your doctors listen to you. Hope I haven't rambled to much, my sleeping pill is tking effect.

 

[daisy.girl]

My EEG showed spikes in my left parietal lobe.
I have complex partials and one generalized seizure.