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rockstar!
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Discussion Starter · #1 ·
Oh, I am so happy! After my AWFUL experience with the last neuro who wanted to take me off my seizure medication immediately because he was positive I was having migraines...I was really scared to see another neuro out here. After I told him my experience with the last neuro, my rheumy gave me a recommendation for one to see at another hospital. I had to wait a long time for my appointment and the rheumy gave me refills in the mean time, but the wait was well worth it!

This new neuro is AWESOME! He is one of those doctors that is very professional, but still such a normal human being. Has a sense of humor and everything :) He did all the normal neuro stuff and went over my history of seizures and connective tissue disease and whatnot. I told him about the previous neuro I saw in order to be honest and give him the chance to agree with that guy, but he didn't. He definitely sided with my old neuro back at home in that the other guy was out of line to suggest taking me off medication immediately (amongst other things).

He taught me some things about my seizures that I didn't really know and he seemed very well-versed on seizures in terms of autoimmune connective tissue disease. He told me that seizure disorders are actually relatively common amongst people who have CTD and he agrees with the Mayo Clinic when they said that my seizure disorder showing up out of nowhere is likely stemming from the CTD itself. He said that any kind of seizure is possible in CTD patients, not just convulsive ones. I thought mine were all non-convulsive seizures, but he did tell me that there is one instance in my history that seems pretty textbook for a nocturnal tonic clonic seizure. Bummer! He told me I need to be aware of that for my own good and to let him know if any other events happen that are like that past one, suggestive of tonic clonic seizures. Oh, the bad neuro also had told me it wasn't possible for me to have seizures related to lupus because the only people that do have severely out of control disease activity and I would have crazy amounts of antibodies showing up or something. This neuro said that is very incorrect and that they've found seizures in all levels of disease...its just that some respond to anti-convulsant therapy while others do not. And those that do not tend to spiral out of control sometimes.

In the mean time, he is keeping me on all the same medication and just wants me to be aware of any auras that show up randomly. He explained to me that my auras are not just a random smell, but are actually a simple seizure within itself...so I need to tell him immediately if I start getting clusters of auras like I did in the late summer/early fall this past year. He wants to try and prevent anything from getting worse and sounds fairly proactive. He also gave me his email address, explaining that if I have any questions that aren't emergencies, I can always email him and he usually gets back to patients on the same day. Then he goes --

"But um...I mean, if its an emergency then you really need to call, okay? I don't want any of this 'Dr. _______, I think I'm having a seiz...iz...zzzzttt!!'" And then he proceeds to make a buzz jokingly like he's having an electrical short. Some might find that offensive or weird, but I found that it made me relate to him better because I like using humor more than anything else :)

Now the plan is that I get to wait 6 months for a follow-up unless my auras show up or I have any breakthrough seizures. Whee! He also gave me a ton of samples of my medication, which is awesome since it is expensive. Anyway...it was a good visit. So if anyone happens to need a great neuro in Seattle that is knowledgeable about seizures and lupus...let me know!

-kit
 

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That is great news that you have found a Keeper for a docotor.:bigsmile:

I am very happy for you.:)

:rose:
Lyn
 

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Hi Kit,

Wonderful news. I am so happy you found somebody that you like and think you can trust.

Take care,
Lazylegs
 

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Jen
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Hello,

If you get a chance can you explain what your seizures are like. I have atypical seizure like migraines that my 'new' neruo says are not seizures or migraines but they are their own atypical brain behavior directly realted to my lupus. I'm on my 4th neuro in 3 years as I keep getting referred to more specialized neurologists.

I do take anti seizure med.

Just wondering what your episodes are like and they type of aura you get.

Thanks, Jen
 

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:) :) Congrats kit finding a good doctor . i got to go iam falling asleep at the computer.take care. email me any time eagle sue
 

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rockstar!
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Discussion Starter · #8 ·
Jen --

I apparently have had every kind of seizure at this point (I was unaware of this before today) -- simple partial, complex partial, generalized absence, and tonic clonic. My seizure disorder seemingly came out of nowhere 2.5 years ago. Looking back, it developed immediately after I had an incident with the sun...the first time I had issues develop after being in remission for a year or maybe more. I was NOT diagnosed with lupus at this point.

My seizures started out with simple partials...aka the aura. My aura includes a very strong olfactory hallucination (it smells very strongly of rubbing alcohol) -- this happens EVERY time before any seizures occur...it is the one thing I can count on. It does not necessarily mean the seizures will progress, although they have sometimes. If the seizures are to progress, I start getting other symptoms -- a very distinct type of nausea...I can't really explain it, but it doesn't feel like normal nausea.

As it starts changing into a complex partial seizure, it messes with emotions somehow and causes a sense of extreme fear. This fear isn't just a scared feeling or the dread of knowing I'm going to have an episode. It is the type of fear I imagine would happen if I was being chased by a serial killer or rabid dog or something. It is completely irrational because at the time, I KNOW that I'm not being chased...but I can't get the feeling to go away. I lose consciousness at this point, but continue to seem "awake," if that makes sense (the hallmark of complex partials). According to those who have witnessed my seizures, I have a pattern at this point of walking to a wall or corner (I seem to favor bathrooms!) and I sit down. I do NOT usually have the typical complex partial movements (smacking lips, trying to button buttons that aren't there, etc.). I am told that I seem awake, but if anyone talks to me or I look at them, it is clear that I am not aware of their presence and I am simply looking THROUGH them. They have said it is a very eerie feeling for them. At this point is likely when some of the seizures generalize to absence seizures, which typically only last for a few seconds. This whole process (from the end of the aura to end of seizure) takes maybe a minute or two at the most.

Afterward, I have a wicked headache by my left temple (part of the reason these are similar to migraines...the headache, aura, nausea) and I am completely exhausted. I HAVE to sleep for a minimum of 2-3 hours afterward, but often sleep for more. I remember having one at a friend's house and I slept from about 7pm until 2am...then again from 3am until 12pm the next day. It makes me 100% exhausted and unable to function.

As for the tonic clonic...my supposed experience with that was during the night when I was asleep. I woke up the next morning and my sheets were completely off my bed (unusual for me since I usually "mummy" myself), my dog was awake and laying in his kennel (VERY unusual for him as he is obsessive about sleeping right next to me under the covers), and I had that same headache on my left temple. I woke up and felt completely exhausted...the same type of exhaustion I feel after an episode. I also had bitten up the inside of my cheek and it was bleeding slightly. I thought the occurrence was weird, but never really thought I had a tonic clonic -- I figured that'd be something I would have KNOWN by now. Apparently not! Haha.

Anyway, that's most of the details. What are yours like, if you don't mind me asking? I've found that mine can definitely be triggered by infections, flare-ups, or not getting enough sleep -- all of these things add up to being worn out and exhausted, which doesn't bode well for someone with a tendency toward seizures (or so I'm told..)





Thank you all for the notes! I am so thrilled to have found this doctor :) I suppose there was a silver lining in going through that terrible doc...it brought me to look for a new one and got me this recommendation! Yay!

-kit
 

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That's fantastic Kit - He sounds great and I would like the humour too - If we've got to suffer with this lot we may as well laugh as much as we can when we can :)

Katharine
 

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Jen
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Hi Kit,

Thanks for your response. There are definately some similarities but differences too, here is a list of what happens to me, sometimes I'll get everything on the list and other times it is just some of what is on the list.

• Increased cognitive dysfunction (sometimes couple of days prior) including cognitive absence
• Ringing in ears, facial pins/needles/numbness, also other parts of body
• Blurred vision, aura (sparks, shapes: have these all the time but they increase)
• Vertigo, nausea, hearing changes (on left), disturbed balance
• Significant loss of motor coordination on right, both arm and leg (unable to walk or use right arm correctly)
• Inability to speak or slurred speech, difficulty swallowing, tongue paralysis
• Significant head pressure and pressure in upper jaw
• Fading in and out of varying levels of consciousness where I am often unable to communicate, eyes close, can’t hold head up, then after a couple of minutes I rapidly come to clear consciousness for 10-20 seconds then fade back out, this continues typically for 1-2 hours and on occasion much longer (24 hrs)
• Sometimes breathing is very shallow when fading out, entire body functions seem to slow
• Rapid change from sweating to chills and noticeable palsy on right side of body during more severe episodes
• Feeling of electrical shock where body/heart seems to stop for a second

Episodes are followed by extreme fatigue and weakness and are often but not always followed by severe migraine headache. Episodes vary in length from several hours to a couple of days

I've had many, many of these over the past two years and have been admitted to the hospital for high dose depakote to break the cycle. I'm on 500 er depakote now and was on higher which helped but too many side effects (also tried other drugs but not much seems to work). I go see my new neuro again next week. Long slow process to figure out what is going on and what will help. And this neuro definately explained things differently than the last, they all have a different take on it.
 

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Jen
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Hi Kit,

If you are around can you let me know what meds you take for your seizures, my doc was just curious when I saw her today.
 

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rockstar!
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Discussion Starter · #12 ·
I originally took Depakote ER, but had too many problems with side effects. The Depakote ER helped to control my seizures, but I would have needed a second medication because it wasn't working 100%. I have taken Keppra for the past 2 1/2 years (approximately) and it has been awesome for me. No side effects and it controls my seizures really well. I only have breakthrough seizures if I am sick with a really bad flare or infection pretty much. I take 2500 mg per day (I think I was originally on 2000 mg and they bumped me up after I had a breakthrough seizure in 2006). The neuro said we possibly would bump it up more in the future if my auras continue, but for now that's where it will stay.
 

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Ladies,
I would like to join in on this because I am seeing a neuro for the tia and seizures I had in the hospital. I am still struggling with severe left eye pain and then major visual disturbances. I too have "auras" . I have been okay for the most part. My question is for kit-I don't understand if it isn't lupus that causes these tia's or seizures then what it is? Does the rheumy have thoughts on if it is lupus related. What is the utcd you are talking about?


I know I have asked a lot of questions-sorry it is just I am right in the mix of it too.:)


Hugs,
Becca
 

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rockstar!
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Discussion Starter · #15 ·
Jen -- My seizures were diagnosed based on symptoms that I reported and that witnesses reported. My EEGs have never shown epileptiform activity, so I do not show the patterns that epileptics typically might...but my first neuro started treatment immediately despite this. He said that there are a few areas of the brain that don't show up on basic EEG and so it was still possibly epilepsy. Then when I went to the Mayo Clinic, they told me that I might never show abnormal results on EEG since I do not have epilepsy itself. They said that people with connective tissue diseases and seizures sometimes have abnormal EEGs and sometimes have completely normal ones. Anyway, they based their diagnosis on my reporting and other peoples' reporting (people who have witnessed "episodes") and also on the success of the medications.

Becca -- The doctor DOES think it is lupus related. I was just typing CTD because he said that seizures are often found with any autoimmune connective tissue disease, not just lupus. My seizures showed up when I was in a flare, but I didn't relate the two AT ALL because I went into remission shortly after. So originally I was told I had developed epilepsy and that this was possibly up until you turn 25, then it becomes MUCH less common to spontaneously develop it. So from 21-23 I believed I had epilepsy....and then the Mayo Clinic corrected that diagnosis and said I had seizures secondary to a connective tissue disease (and the new neuro seems to strongly support this as well). Like I said earlier, this new neuro said it is actually pretty common to find seizures in people with any of these types of disorders!
 
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