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I have had four EEG's all positive for epilepsy, but have never had a seizure. Im wondering if this is another POTS thing. Do any of you have this issue?

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I don't know if it is the same thing but mine have just recently shown "seizure activity". I have not had a seizure either, but I don't know if this means one is coming and my doctor is saying that I need to take meds for it.

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My EEG's were spread over at least 8 years, all positive like yours, I was put on meds for two months, and there were no changses in my EEG's so I stopped taking the meds and still have not had anything that I thought was a seizure. So maybe this is another POTS things. thanks for the reply.

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I've had an EEG that was labeled " suspicious for seizure activity" by 2 neurologists. I have also had several myoclonus episodes but don't suspect they are real epilepsy. My neuro doc who is an epilepsy specialist said the waves on the EEG were just slightly rounded instead of severly pointed which means there is something abnormal going on but may not be true epileptic seizures. We have not done a video EEG because it seems like a waste of resources as this is not my biggest prob.

Also, are you familiar w abnormal seizures? Non-epilptic? I know one other POtS Pt who gets them regularly.

Have you seen the EEgs? Or can you get them? It be interesting to see if there was some small curvature indicating a trend with our abnormal EEGs.

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Im unable to get them, but that would be interesting to look at. I have not heard about the epilepsy your talking about but I will research it. I just moved here and have not gotten a new neurologist yet, but will keep this in mind when I go and talk to him about it. Thanks

Loulou

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Potluck

What are TLE's. I'm just learning how to post, sorry, I may be doing it wrong. It's curious. Do you have a lot of brain fog(too much), like me. I wonder if this may be causing some of it???

Loulou

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I am in the medical field and this is not the first time I have abreviated something people do not catch so I apologize.

TLE is Temporal Lobe Epilepsy. this is a type of Partial Seizure. Partial Seizures can be simple or complex. The difference is complex has the automatism's I believe, which are like lip smacking etc.

The poor man's EEG might be asking if anyone has had smell, taste hallucinations, deja vu ( or similar Deja Vecu, Jamais Vu, Jamais Vecu - things like being in a place that you have been but it feels unfamiliar that are similar to deja vu ) smell hallucinations are nearly pathognmonic for seizure activity ( meaning nearly 100% ) These episodes, if seizures last 30 seconds to 2 minutes with a max of 30 minutes.

One of the EEG's I had that was positve was an extended inpatient EEG, with video monitoring. The thing is with simple partial seizures nothing should show up on video, but I do have positve seizure activity, with multiple episodes while I was their.

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Hmmm several weeks ago I was having a bad day, didn't feel right and had many episodes of smelling smoke that my husband did not, over like a 4 hour period. I even ended up going to the ER because I was feeling so bad. They did nothing of course. Wondering if I should have an EEG done...

Very interesting.

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Hi, I was on meds for two months and it made no change in my EEG's nor my symptoms

Loulou

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Potluck,

This is so interesting. I have had times where I smell smoke & blood, even taste blood. And lots of deja vu. I wonder just how much it has too do with my severe brain fog or if it does. And if so what can be done

Thanks for all the info

Loulou

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Are all of you having issue with severe brain fog? If not are you have issues with things that are not POTS symptoms

Loulou

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Lisa: yes, I have horrible brain fog at times. I think most of us do. I will walk into a room and not remember why I went in. I lose my phone about 10 times a day, and the other day I put the remote in the freezer. It's horrible. It sounds funny, but some days I just lose my stuff and cry for like 20 minutes over it. It's also very hard to explain to other people. I just say "I'm stupid" and they shut up. I'm not stupid, so I'm cool with that. :)

I also taste blood in my mouth. I have tried to explain this to the doctors but they look at me like I'm crazy. It happens at least once or twice a week, out of nowhere. Potluck, any ideas?

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This is really interesting to me. I have horrible brain fog and my vision gets funky. I also get an overall clumsiness. It is hard to know if that is a POTS thing or it has to do with the EEG. I am going to be starting Keppra so from what has been said here, maybe it will help some of my symptoms?

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WOW, You have described things I just thought were odd sensations that I imagine. I have also smelled smoke, blood and tasted blood. I have cleared mucus out of my throat certain there would be blood and there was not. Unbelievable to me how we experience things that we don't even address because we know doctors will think we are ......fill in the blank.....crazy, imagining it, making it up ....

Angelloz

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Angeloz- I think if you speak to a physician knowledgable on epilepsy they will tell you you have Temporal Lobe Epilepsy. The smell of "smoke" or particularly burning rubber is the one nearly pathognmonic. It is more diagnostic than an EEG, as EEG is not 100% by any means.

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Which symptoms have changed and are you taking meds for pots too, if so are you extremely fatigued with all the meds? Do you have a neuro and a pots doctor? Do you mind me asking what meds your taking? This post is so helpful I thought I was really losing it.

Thanks for the info

Loulou

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Lisa,

Not sure who the question was for,

I take VPA, levothyroxine, propranolol. I have a seen neuro and cardio and endocrine ( diabetes and thyroid plus they thought I had a pheo before ) and mito geneticist along with several others like primary care, and been to many top places in the country.

I am not sure what I have or how POTS and seizure activity go together. Does one cause the other? Which causes which? Which causes symptoms? Do I have 2 seperate disorders? Are they both caused by the Mito disorder? And most importantly HOW DO I GET WELL?

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  • 2 weeks later...

I had eeg showing left front lobe brain waive slowing, 1st neuro put me on 2000 mg keppra he thought it could be focal siezures however had 2 other neuros including epilepsy specialist from mayo review the eeg and they decided there was brain slowing but not siezure or epilepsy and took me off the keppra. I couldn't really say if the keppra helped with the pots.

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NMPotsie- sorry I missed your question earlier. Yes, the taste of blood can be a "seizure" caused by a Simple Partial Seizure.

Gackeko- That is great that treating the epilepsy helped with the POTS.

I just responded to PuppyLoves post "Lights Triggering Symptoms" with some more information on epilpsy, and some people were posting about lights effecting their POTS which it seems could be epilepsy.

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  • 2 weeks later...

I tried to just post something but my internet connection messed up so I will try again......I just got copies of my 2011 and 2012 MRI's. The second MRI noted developmental venous anomaly within the interior left frontal lobe. Just wondering how this could tie in to my eeg also done in 2012 which showed left frontal brain slowing.....hmmm. Does anyone else have DVA's noted on MRI's?

http://emedicine.medscape.com/article/338641-overview

I posted a link that explains a little about DVA's. I guess the term is congenital anatomically variant pathways in the normal venous drainage of an area of the brain. I'll have to do some more research after work (yes, I am playing at work).

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I had an EEG done once that showed slow activity enhanced on hyperventilation. They said it was of unclear insignificance. They never did get to the bottom of why I have violent muscle spasms when there is a change of temperature in the room.

Clair

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