Possible Partial Seizures?

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rosebud

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Hey I'm new to this forum. After many blank stares and confused looks about my symptoms I decided to turn to you to point me in the right direction.
So here's my story:

About a year ago, I went to the hospital for amnesia. Yes, I literally could not remember the day before. I had a 24 hour memory. About 4 days later, they did an 72 hour EEG to see if I was having seizures at night and it was causing amnesia, aka resetting my memory. Nothing came back. Later figured out that I had a severe b12 deficiency and attributed the memory loss to that. With the b12 injections I've been doing better, but I randomly still have periods where I completely lose my memory just like before. Only now, I've noticed something different that I didn't before my initial memory loss.

I think I've been having simple partial seizures, and here's why...(cue confused looks lol). Every now and then, I'll feel a strange feeling coming on. Kinda scary but I know its coming. Then it hits. I will have a sense of deja vu like its a reoccurring dream that I've seen before (its always one of the same 2 or 3 "dreams"). It lasts maybe 30 seconds and it seems SO real that its alarming. After I come out of it, I feel extremely confused, I can't remember the "dream" and I'll feel extremely nauseous. I may or may not get a headache, I usually don't. These tend to come in random episodes. I'll have up to 5 or 6 of these episodes in a day for like a week or two and then months with nothing. Also, these tend to be very brief, yet so strange.

Now if you haven't written me off as crazy and you're still reading this, thank you! lol. I haven't had another EEG done during one of these series of episodes because a) the glue took out a lot of my hair last time and b) the test is pricey and my doctor has decided that its probably a case of migraines and not worth running an EEG or other scan... From what I've read migraines (even without the headache) last for hours or days whereas these only last for a minute or less.

So I guess what I'm asking is, am I having partial seizures? What are the steps in getting a diagnosis and convincing my doctor to do the appropriate test? And, has anyone heard of memory loss with seizures? I'm assuming that when I have these random phases of amnesia it was triggered by some sort of nighttime seizure activity.

Thanks in advance for any advice. I'd like to gain enough info to confidently explain to a doctor and get past the are you crazy? looks lol
 
Hey Rosebud!

Welcome. =)

First off, you are not crazy. What you have described, I feel as well. Like down to the details I was nodding my head going, "Yup, I get the same feeling."
The dream recall / Deja vu feelings I get really mess me up for about a minute. Like my brain said, "Wait...we gotta reboot, cut to commercial." Then I'm back, but with a headache.

A next step you could take is talk with your Gen. Prac Doctor and see about getting a referral to an Epilepsy Specialist, or at least a Neurologist. Either one can help you with tests; usually EEG's, MRI's, CT scans...etc.

Since what you said resonated with me, I can tell you what Docs have said to me: Temporal Lobe Epilepsy. The scenes you described are commonly referred to as, "Auras." When you experience these, it's usually over stimulation or too much electrical activity in the Temporal Lobe of the brain. In the Temporal Lobe lives the Hippocampus. That lovely friend is the critical in the memory department. It helps with forming short-term memory and then transferring that data to your longer term memory. It's like the middle man for data transfer to your internal hard drive. =)

I have yet to have a positive EEG or MRI, which I'm then told is common. So when you get frustrated, feel free to vent it here. A lot of people will understand. I know I do.

Well I hope this helps get you going in a direction that's beneficial to you. If you get any data from an MRI scan, I would like to hear an update.

Take care and good luck..
Chris.
 
Hi rosebud, welcome to CWE!

I agree with Chris, what you describe sounds like Simple Partial seizures. They often start with a strange feeling -- it can be nausea, or anxiety, or some off kind of fear, things along those lines. Deja vu can be one of many kinds of simple partial symptoms. If you have moments have lost memory, they may also be progressing to Complex Partial seizures (where there is impaired awareness, but not full loss of consciousness). You can read more about partials here:
http://www.epilepsy.com/epilepsy/seizure_simplepartial
http://www.epilepsy.com/epilepsy/seizure_complexpartial

Be persistent about getting to see a neurologist who can properly evaluate your symptoms and discuss treatment options.

You might also try keeping a seizure/symptom diary -- this can help you (and a neurologist) get a handle on your symptoms, particularly how frequent they are, and whether they are changing in any way. It can also help you look for triggers -- they can be things like fatigue or infection, hormone fluctuations, food sensitivities, low blood sugar, etc. A B12 deficiency can also trigger seizures (though it's fairly rare), so that may well have been a contributing factor, and you should continue to have your nutrient levels monitored. You may want to have your iron levels checked as well, since iron deficiency and b12 deficiency often go hand in hand.

Best,
Nakamova
 
:agree: with everything Chris and Nak said.

They sound very similar to my partials (an aura is a simple partial seizure), esp. the part how they're always the same. S.P.'s usually work that way. And the memory loss? Could be progressing to a complex as Nak said.
Sounds like it's for a neurologist, not something a regular doc would have experience with. Good luck :)
 
Thank you all so much! It is very reassuring to have others say that they know exactly what I'm talking about. The links that you guys provided sound exactly like what I have experienced. My doctor made it seem like I'm losing my marbles. I was already seeing a psychiatrist for my ADHD medication, so I decided to ask her what the symptoms sounded like. She said that it definitely doesn't sound like some type of psychotic episode and it sounds more like a seizure. Especially since I know that the people that I see in these auras aren't really there. I'm wondering if my regular doc is thinking of generalized seizures and forgetting about the other forms.

Also, I like the idea of a symptom diary. This will be extremely important to work on with others around me since I don't always remember these episodes. I'll also pay special attention to my b12 levels. I felt like everything was connected, but I wasn't sure how.

I was curious to know how you guys were finally diagnosed with epilepsy, especially if you've had normal EEG readings? I understand that EEG's only capture a brief moment in time and its unlikely to catch any abnormal activity unless I have a seizure while I'm hooked up. These happen so sporadically that its hard to schedule the test and know I'll have one within that time. I've tried going to the ER right after I've had two in a day, but the docs wouldn't hook me up since the test wasn't ordered by a neurologist. Frustrating lol.
 
diagnosed after my second grand mal without cause. classic epilepsy diagnosis.
had been having partials for 9 years prior but they had been misdiagnosed as PTSD.
 
Wow, that's brutal. That's exactly what I was hoping to avoid. That is so frustrating!
 
to avoid having them and not knowing it's epilepsy?
oh don't beat yourself up at all about that, many things neurological carry the same symptoms, making E a hard diagnosis sometimes. E and PTSD are very similar, esp. when it comes to symptoms of partials.
it happened for me b/c a psychiatrist didn't take the extra step and refer me to a neuro when it started happening, it was diagnosis, meds, and 'best of luck.' so when the grand mals started 9 years later i didn't even mention my 'episodes,' like 'why? this is a different prob that was already diagnosed.' BIG mistake. and way later when my neuro found out i never told him HOLY SHIT was he pissed.
so, keep in mind at this point it's not necessarily E, but it could be, so just tell your docs everything, and keep that diary :)
 
I agree with the others, it definitely sounds like a partial seizure to me. I have partial seizures, but they present differently. Keeping a log of seizure activity is very useful.

When I started having seizures back in 1997, I had an MRI and three EEGs. My MRI showed some asymmetry in my hemispheres (don't remember what exactly it was), and two of three EEGs came back normal. The abnormal EEG that I had showed abnormalities during the hyperventilation exercise, which triggered a seizure, and I *think* during the sleeping phase I had some abnormal stuff as well? Been a long time! He basically used the reports of my episodes, the one abnormal EEG, and the asymmetry in the MRI to make a diagnosis of temporal lobe epilepsy.
 
qtowngirl said:
it happened for me b/c a psychiatrist didn't take the extra step and refer me to a neuro when it started happening, it was diagnosis, meds, and 'best of luck.'
Click to expand...

A similar thing happened to me--when I started having episodes, my doctor made a hasty diagnosis of depression and put me on Paxil. I didn't take it because I wasn't depressed. I was a teenager, so not really very good at being my own advocate, but thankfully my mom was, so she got me referred to a neurologist. If it wasn't for her insisting that there was more to this, who knows how long it would have taken before I was really diagnosed.
 
MY GP thought that I was having panic attacks. I see and hear people who aren't there. I also smell things that arent't there. The symptom that saved me from having a trip to the shrink and earned me ticket to the neurologist was that my hallucinations include smells. None of the psychiatrists that my GP spoke with wanted to see me because of that. I have had 2 normal EEGs and a normal Epilepsy protocol MRI. My partial seizures, so far, are few and far between and so far have been basically unwitnessed. It is a fairly frustrating process. I like and trust my neuro. I tell him everything, even if I think it isn't relevant, and let him decide. So far he has been really good about keeping my best interests first. He recently reduced my meds even though I thought I was fine. He was right.
 
not to scare you, but same as a normal eeg, a normal mri can be misleading as well.
i had a lesion that wasn't noticed for years b/c each year the radiologists in the same hospital kept doing the same slices. one new one came in two years ago from a big city and picked it up on her first one.
can't imagine how much better off i'd be if it was found years and years before.
just saying, anything's possible so if a lesion, scarring, anything is mentioned demand they look everywhere :)
 
Welcome,

I have simple to complex partials, but my are different from yours.

I have temple Lobe on the right side.

I take Dilantin and Clonazepam.

My start with déjà vu- where everything around me feels like it has happened before, I will think to myself - that person is going to say BABABABA
and that is what comes out of their mouth.

When this happens I know to get to safe place. then I stare straight ahead, I smack my lips, swallow hard for many times, and have lobster claw like movement in my hands.

When I come out of it, I am overcome with fear.

I will know who is talking, what they are saying, know where I'm at. I just can not respond to you.

It weird that I know where I'm at, who's talking so on, but I don't know the things I do, my husband told me what I do.

Hope this is of some help to you.
 
Hi guys!

It's about a half year later but I wanted to let you know that I was diagnosed with having complex partial seizures after my mom witnesses me having a grand mal on the kitchen floor. That trip to the er earned me a visit to an epileptologist who was very knowledgable. I'm on meds now. Trying to find the right conbo but I'm happy to get treatment. Thanks for everything! I was confident enough to tell him about my déjà vu spells without fearing he would think I was crazy. This plus two grand mals that were witnessed helped me get a diagnosis. Thank you so much for your support and knowledge!
 
Hi rosebud, sorry to hear about the grand mals, but it's great to hear that your treatment is on track and you have a good doc to help you. I think once you have grand mals your epilepsy diagnosis then includes both Complex Partials and Generalized Seizures.
 
I know, for me anyway--- to know what is going on. I hope this will give you peace of mind. I'm also glad to read you are on meds. It took my dr. several tries to find the combo that worked for me. I say that so you don't don't get don't worry.

You were lucky (I saying lucky) because someone witness your grand Mal.:woot:
 
Thank you, everyone. I do consider myself lucky to finally have a diagnosis. It's been years of knowing that something was "off" but not knowing exactly what. I live alone most of the time, so I was lucky to finally have a witness who could explain what happened in detail when I obviously couldn't. I'm thankful to have a diagnosis but more thankful that there is such a supportive community!
 
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