Question about partial seizure diagnosis?

[sarahkay03]

Hi everyone. I have been spending some time reading through these boards after being diagnosed with partial seizures two days ago. Primarily, I am reading because I am confused about my diagnosis, confused about what type of seizures I am supposedly having, confused about the medication . . . pretty much confused in general. My neurologist is not chatty at all, and basically all he said to me on Monday was "your EEG was abnormal, you are having partial seizures." That's it. And because I was dumbfounded by the word "epilepsy", I didn't ask any questions.

If you'll humor me, here's why I went to a neuro doc in the first place. For about eight months, I have been having motor control issues with my hands (dropping things, knocking things over, etc, about 10 times a day). Also, I had been seeing what I affectionately refer to as my "ghost" in my room most nights: a black mass that I see by the bed, moving around. Honestly, it was to the point where I was convinced I had a brain tumor. So I went to a doctor. He did an MRI and EEG, and partial seizures is what he came back with.

He put me on Keppra, starting with 500mg for two days, then 1000 for the next seven, then 1500 after that. I am on day two.

I'm not exactly sure what my question is, but after reading a bunch of posts on partial seizures, mine don't sound anything like others. I have, to this point, never had what I would consider a 'real' seizure. In fact, other than the annoyance of dropping things and losing sleep, I don't feel anything to speak of.

Can I just ask, generally, what you all think? Do you think it's possible to be misdiagnosed? Do these sound like symptoms of partial seizures? I realize there are different types, but he didn't tell me which type I have.

I really don't want to be on medication my whole life if this doctor is wrong. I have already considered getting a second opinion, but wanted to get some community feedback as well. Thank you!

 

[Nakamova]

Hi sarahkay03, welcome to CWE!

Partial seizures come in two varieties, Simple and Complex. Simple Partials don't involve any loss of consciousness or awareness, so I suspect that that's what you are having. They can take a wide variety of forms, but there are four broad categories:

Motor – jerking movements of the foot, face, arm, or another part of the body. (These sound like what you are experiencing during the day)
Sensory – Unusual sensations: phantom sounds/smells, distortions in vision (like with migraine aura), hallucinations, etc.
Autonomic – affects involuntary functions, so things like changes in blood pressure, heart rhythm, sense of nausea, etc.
Psychic – affects parts of the brain that trigger emotions or previous experiences: feelings of fear, anxiety, déjà vu, jamais vu, etc.

When someone has simple partials when they are sleeping, they can have hallucinations or delusions -- they may seem similar to dreams, but the person is semi-conscious in this case. So these may be what you are experiencing at night.

If you aren't sure about your diagnosis, it can't hurt to get a second opinion. I recommend that you ask the first neurologist what about EEG or your clinical symptoms led him to the diagnosis of simple partials.

I also recommend that you keep a seizure/symptom journal to look for patterns or triggers for your symptoms. Also keep track of how you feel on the Keppra as you are ramping up. (All the anti-seizure meds can have side effects. Keppra is particularly known to cause crankiness and emotional isssues). If you find that your symptoms are improving, that may be a confirmation of the neurologist's diagnosis. Though if the symptoms persist, that doesn't necessarily rule out a seizure disorder, since not all meds work for all people.

BTW, partial seizures are definitely "real seizures" -- and they are a much more common form of epilepsy than the kind that involves convulsions and loss of consciousness.

Best,
Nakamova

 

[sarahkay03]

Thanks!

Wow, thank you for all that great info!

 

[SassySarah]

Thank you SarahKay! I was going to ask a very similar question. My neuro is aweskme but he just uses the term seizure. I am always curious what kind because I seem to be all over the map. My major "worst" seizures I am not sure if they complex partial or tonic clonic. My major confusion is because my seizures don't end without an ativan injection - the only exception would be the few absence seizures (if that's the right term). They are the only time I know I lose consciousness. My worst-assume tonic clonic seizures initially I stayed consciousness and progressively I am losing it more and more as well as I always lose speech now but not in the beginning.

Not understanding what I am looking for aside from- I didn't feel right this or that day and a few examples in my journal are frustrating. I think I end up calling everything but a major seizure "an aura". Its so confusing!

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[AngelwithDentedHalo]

Does anyone's hands shake all the time or sometimes since you started having seizures? I've got a very noticeable hand tremor in both hands since I've had the Grand Mal, sometimes I don't have any at all but other times it's very shaky

 

[SassySarah]

I do. Sometimes horrible! I think for me the Dr has said it is part of my myoclonus. That was diagnosed very quickly but again- I am SO confused about all these terms! I do know my body is something of its own for the first 48 hrs after a major seizure.

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[AngelwithDentedHalo]

Did your doctor say your myoclonus is from epilepsy or something else? I was just reading about it and it says it can be part of epilepsy but also kidney failure can cause it, which I've had three times.

 

[SassySarah]

At that point it was its "own" thing because I am just now being diagnosed with epilepsy. I have had a horrible time with diagnosis of both. That being said- I just know I have had kidney infections but never failure....

So much of it is a big confusing mess.

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[AngelwithDentedHalo]

It's no fun trust me. All three times were due to severe dehydration & second time I had a potassium of 9.4 & normal is only up to 5. Nearly killed me. I don't have a colon anymore due to Ulcerative Colitis so I get dehydrated faster. Luckily the last time I knew the warning signs and went to the ER & had to stay the night in the hospital but caught it before it was a complete kidney failure.

I get another EEG in November so I'll hopefully have something to go on. Records say Epilepsy with Complex Partial Seizures but I've only had one Grand Mal, Neurologist says the results could change from the first one, we'll have to see

 

[no.guru]

BTW, partial seizures are definitely "real seizures" ...

They are, and it's important to distinguish between ill-informed opinions and establish facts.

 

[sarahkay03]

Perhaps you could forgive me for having an "ill-informed opinion" since it's been a whole THREE DAYS since I got this diagnosis? Thanks.

 

[no.guru]

Perhaps you could forgive me for having an "ill-informed opinion" since it's been a whole THREE DAYS since I got this diagnosis? Thanks.

I should be more clear. The opinion I mean is at the link I posted. I just didn't want you running across that or a similar post (here or elsewhere) and being misled.

 

[sarahkay03]

I understand, thanks.

 

[Cint]

Did your doctor say your myoclonus is from epilepsy or something else? I was just reading about it and it says it can be part of epilepsy but also kidney failure can cause it, which I've had three times.

One can have myoclonic seizures. Here is a list of types of seizures:

http://www.epilepsy.com/EPILEPSY/types_seizures

Primary Generalized Seizures

Absence seizures
Atypical absence seizures
Myoclonic seizures
Atonic seizures
Tonic seizures
Clonic seizures
Tonic-clonic seizures


Partial Seizures

Simple partial seizures
Complex partial seizures
Secondarily generalized seizures

Believe me, I've had SP, CP, and TC's, too. No fun