Hello Again

[crazybarbie]

Hi Everyone,

So I'm still here. Lots going on for me. Had an updated bloodwork test and my levels for Trileptal are still extremely low. Measuring at 2. Still having seizures. My Neurologist is away on vacation unfortunately. But he called in from wherever he is. He has me booked for another EEG for Sept and then a followup visit with him. But apparently he's a little put out with my family doc. because he had upped my dosage of Trileptal without his consent.

I ended up in the Emerg last Friday. Had another seizure at home but afterwards my hubbie said my eyes were very dilated and then the right side of my face was drooping. But after a CT and ruling out a stroke the hospital said I have yet another bout of Bell's Palsy. Third time in approx. ten years.

Does anyone else have reocurring (sp?) Bell's Palsy?

I've taken everyone's advise and have started a journal. I'm looking forward to my visit with my Neurlogist to get to the bottom of things.

I'm seriously not feeling well. My fam. doc has signed me off work until we can get myself under control. The extreme fatigue is the worst. Don't know whether to chalk it up to the seizures or the meds new dosage.

I'm starting to get worried that maybe between the white matter scarring, the unknown "artifact" on my spine, the seizures, and the twitching, the Bell's Palsy, the cognitive problems that maybe I'm dealing with something else other than Eplipsey.

 

[huskymom]

If you can, try to keep a positive outlook. Seems like when things look the worst or feel very scary, not falling into the trap is the most helpful. All of things that you have talked about are all things that you have virtually no control over (other than taking meds) so it is best to keep your best foot forward. I will be thinking of you and wishing you good things to come!!

 

[Nakamova]

Don't worry about your neuro being "put out" -- it's not your job to worry about his ego, and you did what you had to under the circumstances.

A lot of times, it can take a while for the body to adjust after a change in dosage, so I hope that's what's going on with you -- in your journal, make sure to note how the side effects are, and if they seem to be changing. This will be helpful for your neurologist when you see him in Sept. (it would be great if you could see him sooner...)

 

[Endless]

Barbie,

Everything is going to be okay. Your doc will be back soon and this will all get sorted out.

Write down all your concerns and questions, and make sure you have an appointment with your neuro right when he gets back. Asking whether the problem is something other than E is a very fair question. If you don't get a clear enough answer, then ask again, and again until you do.

Also make sure the records from the emergency room and your PCP are sent to your neuro, and are there with him when you go for your appointment. He needs full info to be able to make good decisions.

About the Bells Palsy... I have a mystery drooping eyelid from time to time. I don't have bells palsy, and MRI/CT didn't show any strokes, so I'm fine. I think there's some weird stuff I may never have an answer for. But my stuff is minor. I think your neuro will have answers for you.

 

[crazybarbie]

Thanks everyone.

Since I've posted, I've had a few more seizures. My family doc has signed me off work until we get all this sorted out. Probably a good idea as a safety measure. My family doc also got my neurlogist to see me sooner. I was supposed to see him in mid-September but I am now seeing him tomorrow straight after my EEG. He'll get a verbal report.

He also has taken me off one dose of Trileptal and is starting me one dose of Dilantin. (sp?) Does anyone here take that? Does it work for you? What are the sideaffects like?

 

[Nakamova]

I had no significant problems with Dilantin. It made me a little tired. It can affect teeth and gums, so it's important to see a dentist regularly. Long-term it can lead to issues with bone health since it interferes with calcium absorption, so my neuro switched me to Lamictal. (Not that Lamictal is free of long-term side effects. It's just that it's newer, so they don't know what all of them are.)

If you can, write down all your questions for the neurologist. And don't be afraid to ask more if something is unclear during your visit.

Keep us posted on how it goes.

 

[Rae1889]

Hi, about the Bell's Palsy.

Could it be that its Todd's Paralysis instead. this can happen after a seizure and usually only affects one side. I get it on my left, and it doesnt have to be specific to grand mal seizures. it can happen with complex partial and even slightly extreme simple partials.

 

[crazybarbie]

Hi. Thanks everyone. I'll look into that Todd's Paralysis. That's interesting.

My appointment went okay I guess. My EEG showed seizure activity in the left temporal lobe as it has all along so it hasn't changed. Doc wants me to have a MRI of my brain and then another of my neck and spine. Depending on what shows up on the MRI he may want to do a spinal tap. I'm NOT pleased with that prospect.

He also sent me for some bloodwork this morning testing for lyme disease and west nile disease.

So for now I'm going to continue with Trileptal and add in Dilantin and then add to the dosage until it's right.

 

[mel239]

I was reading about todds,but my paralysis only lasted 30 seconds tops so im not sure that applies to me.Probably just part of the seizure because I cant respond in any way although I do remember pursing my lips and trying to force a word out.Im on trileptal too and I like it

 

[crazybarbie]

I'm very excited about the idea of Todd's Paralysis. Will be speaking to Neurologist about that idea. I think it's a better prospect than whatever he's looking for.

So far Dilantin seems to be working pretty good. Still had two seizures since started but have been under extreme stress lately and that being one of my major triggers, I'm not overly concerned. Think once we get the right dosage it'll be better.

Question though, I've noticed over the last month a weird sensation and I don't know whether to chalk it up to stress, or to the new med side effects. I feel like a very strong sensation of goosebumps or tingling in my scalp.

Also sometimes I get the aura but the seizure doesn't take place. Or I feel off or spacy like on a day where I get a seizure but nothing happens. Perhaps this means the meds are keeping the seizure from taking place.onder:

Forgot to add that Neurologist said that the sypmtom I was having of knowing a word, seeing it and in a middle of a conversation no matter what I do it will constantly come out as a wrong word. Ie. saying microwave instead of alarm clock, saying Jane instead of Jenn. He said that this is another type of seizure.

I'm also having bouts where I'll be talking and all of a sudden my mouth feels thick. Takes effort to talk through. Words sound okay but it takes an effort. Wondering if this yet another med side effect.