New Member - Possible Simple Partial

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Cassqueen

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Hi, My name is Cassie. I'm new to this community. I have a new neurologist who thinks I might have simple partials but is not sure and does not want to jump to conclusions. I went to see him because of longterm left-sided pain in my leg and arm with minor weakness previously attributed to a presumed blood clot during pregnancy and migraines that recently have gotten to be every day. Every day around 2 p.m. my head starts to hurt and keeps hurting until I fall asleep. I have tried abortives, OTC painkillers, percocet, topomax, even botox injections. Nothing helped. Pain pain pain. I had accepted the left-sided pain was my "new" baseline and asked him to just focus on the headaches. He said let's try Zonegran. Within days of being on just 100 mg, the headaches stopped. Then the left-sided arm and leg pain stopped. Even left-sided TMJ symptoms stopped that had long since preceded my son's birth by 10 years or so. Since the headaches stopped, I have continued on the Zonegran, but clearly feel what I believe are obvious simple textbook partial seizures. I feel a nervous feeling in my stomach, a rising feeling, a tingling/burning in my scalp, and as it dissipates an overwhelming tiredness, but all in just a moment - I think 30 seconds or so.

I had an EEG since starting the meds and thought I had a spell during the EEG when they did the hyperventilation. I asked the Dr. specifically what did you see after the hyperventilation. He said - "It was weird, you had left temporal lobe slowing, but no spike." He wants a 72 hour in home test, which is fine. MRI was fine.

My questions:

1. Has anyone had this kind of pain associated with untreated seizure activity before they were diagnosed? Everything on the left, headaches, arm, leg, jaw, back, all left-and quite severe some days.

2. Is it possible to just miss the spike on the EEG and only catch the slowing?

3. Since I did live with all that pain for so long - I feel free - even cured. Even though these spells (possible seizures) are frequent - Do I need to go through the work of more tests and meds changes trying to figure out specifics? Or do simple partials progress?

I look forward to hearing from you all. I've ready many of your posts and hope to get to many of you soon.

Thanks,

Cassie
 
Hi Cassqueen, welcome to CWE!

Congrats on getting relief from the pain! I hope the Zonegran continues to do the trick for you.

I haven't had the kind of pain you describe, but my seizures are only the tonic-clonic variety.

As for the EEG, it's odd that the slowing would be on the left temporal lobe. Most seizures that primarily affect only one side of the body originate in the opposite side of the brain, so any seizure activity would tend to show up in the right lobe rather than the left. But EEGs aren't perfect, especially with partial seizures, so it may well be that this particular one wasn't able to register anything significant. Being on meds during the test may also have suppressed seizure activity.

Partial seizures can potentially progress if left untreated, so its worth getting a handle on what's been going on. Maybe adjusting the Zonegran dose will take care of the partials. Do you keep a seizure/symptom diary? That can help monitor any seizure activity so that you can tell if it's escalating in any way. the diary may also reveal any triggers that are playing a role.

Best,
Nakamova
 
Thanks Nakamova! I have always thought it was weird that everything was on the left. I started keeping notes for this Dr. I was so impressed with the positive changes I wanted to get it all.

I was worried about things progressing because my memory has been worsening over the last year and especially the last month before seeing this Dr. I locked my keys in the car twice. I have forgotten where I parked to where I could not find my car at all. Driving has gotten more and more difficult - I get lost; I miss turns all the time even with gps. I feel ditzy, though I am not really a ditzy person. It all seemed like little stuff until the Zonegran got on board and the spells became clear with a beginning and an end. Now it just makes sense and I feel less crazy - though I'm not sure the Dr. doesn't think I'm crazy. Oh well, at least he's still working on figuring it out.

I think my arm and leg must have hurt from the muscles stiffening all night or part of the night. My husband doesn't remember jerking or movement per se, but I have bitten my cheek many days over the years. I just haven't heard of stiffening muscles and not every day and no one figuring it out for 8 years. As the Zonegran kicked in I could feel a beginning and end to the nocturnal spells with the stiffening - just at first, then I went out. Now, I don't have any nocturnal spells that I'm aware of.

I will take your advice and get this into a diary for the Dr. - though the nurse acted as if she had never seen a patient bring notes! :)

I'm happy to have found this forum while I sort it all out. Thanks again!

Cassie
 
I always keep a diary of my seizures - when they happened, what type, how long they happened, anything that I did during them and if I had any side effects afterwards.

I will take in a list to give to my neuro telling him these things. I don't make it quite as detailed as the one that I keep for myself. Usually just when, what type, if I did anything out of the ordinary during it and if I had any type of side effect after. If you make things too long for a dr to read it won't get read. They like to more or less just scan things over during the visit and read them later.

It sounds like you are having seizures. After a lot of my seizures I'll have headaches and depending on how bad my seizure was the worse the headache was.

I very rarely have tonic clonic seizures but when I do have them I will shake and will freeze up. I'm guessing that you and your husband sleep in the same bed together. If he's a heavy sleeper or the things that you might not be that bad it may not be waking him up.

My memory is pretty bad from the epilepsy. I've found that I've got to write down notes for almost everything or I won't get it right or forget it.

It sounds like you could be having simple partial seizures when you were saying about the things that you do when you are driving. I won't black out during these but I get pretty confused when I'm doing things and really can't think strait. I'd be careful about driving, you don't want to get into an accident.
 
Valeriedl - Thanks for your advice. I really appreciate it. I have been keeping the notes, but I like the idea of giving the Dr. the shorthand version.

I am a little worried about the driving. I asked the Dr. and he said in FL he just stays out of it. Which I'm not really sure what that means. I've always been afraid of driving - afraid I'd fall asleep, get lost, not see how far away a car is, - all before I ever thought of the idea of seizures, but now it seems clear to me I'm likely justifiably scared. I don't think I have blacked out, but I guess it's all new and I am just not sure since the Dr. had the position that he was not going to declare the label of epilepsy without seeing a spike.

Followup question: Do you or anyone else know a good list of symptoms to help a newbie sort things out. The last 3 days I've noticed muscle "twinges" not the whole biceps or calf, but just a piece will quiver for a few seconds. I don't want to read into things and think everything and anything could be part of a seizure, but a good list of commonalities might help if someone's already got one.

Thanks for your help - Cassie
 
Update: The 72-hour EEG is coming up this Tuesday at home. I've been doing the diary and it helps - at least I feel more in control I guess. With as many as spells as I am feeling, I think he will catch something in 72 hours - especially on falling asleep and waking up. Those are much different than the day time ones. Some are so mild I hardly notice them. Others leave me confused and lost for a moment and exhausted. The only way I can think to describe the difference is the small ones come in a wave rising up and then flowing down by body. The wave of the small ones reminds me of a thunderstorm off in the distance - where you think, "Did I hear thunder?" Then the more intense ones seem to last the same amount of time to me, but are more like the thunder that is right on top of you that jolts your head to attention, and I can feel the thunder roll down my body. I wish there was more public awareness about things like this. I've felt these spells my whole life, but never knew about seizures you could be awake throughout the entire time. I wish the teachers would have complained to my parents that I slept all the time in school. I guess worse things could have happened! I'll post an update after the results of the 72-hr. Cassie
 
The 72 hour EEG can be really good for gathering information. In my case, whatever was tagged was reviewed without video. It was only after mentioning my night-time-thrashing that the doctor reviewed the video. That was how the doc new how to get me on more medicine.

If there are any portions that bug you more than others, I urge you to write it down and specifically let the doc know what and how it bugged you. It can make a big difference.
 
Thanks NSperlo - thanks for that feedback. I would have assumed they would review the whole thing, but I guess that's wishful thinking and a little unrealistic. I'll be sure to mention the waking/sleeping pattern and the daytime is more random. I suppose the goal right now is to just catch 1, it doesn't sound difficult, but so many people have posted about having never captured one. I guess we'll see. Thanks again!
 
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