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prothumos
09-13-2011, 07:21 PM
Greetings from Pass Christian, Mississippi!

I'm not newly diagnosed, I'm just........confused?! I thought I had a pretty good handle on this stuff - life is the pits during flares, but for the most part I was dealing with it. Then last Tuesday happened.......my husband and I drove over to Slidell, LA to go shopping and it all was going great until I had a seizure. Funny thing, none of my docs had ever mentioned seizures in conjunction with lupus or vasculitis - until it happened. It was a grand mal seizure and totally freaked my husband out. Me? I didn't remember anything about the seizure and it took over 24 hours for me to remember my husband/life.

Has anyone else ever dealt with grand mal seizures? Were you tired afterwards? I'm so tired and sleepy I feel like Rip Van Winkle! This is not the normal lupus fatigure (which is bad enough), this is like I don't even have the energy to brush my teeth.

I look forward to meeting everyone ~

Robin

Saysusie
09-13-2011, 07:55 PM
I have never had a seizure with my Lupus. However, in my research I found that seizures may be an indication of neurological (central nervous system) manifestations with your Lupus. People with Lupus often have CNS symptoms and seizures are, unfortunately, not uncommon in Lupus patients. In fact, seizures are one of the eleven criteria used when diagnosing Lupus.
Have your doctors run any tests to determine if there is CNS involvement with your Lupus? There are medications that are often used for persons with CNS involvement.
A period of confusion and extreme fatigue and sleepiness are common after a grand mal seizure, so your symptoms were not a rarity and, aside of the scariness of the seizure itself, should not cause you additional concern or fear.
I am including a website that provides information about grand mal seizures: http://www.mayoclinic.com/health/grand-mal-seizure/DS00222/DSECTION=symptoms. This site explains the two phases of seizures, what happens during those phases, what to expect after the seizure, and what to expect after the seizure. I hope that the site is helpful to you. Please let me know if you need anything further, we are all here to help you as much as we can.

Peace and Blessings
Namaste
Saysusie

tgal
09-14-2011, 07:26 AM
Hi and welcome to WHL!

I actually posted in the other thread you were in but I will post here as well. Like you I have seizures. I have several issues that led to my diagnosis of CNS Lupus. Looking back there were so many things that happened that, had I known more, I would have known were seizures. Sadly I didn't know and it took a long time to figure it out that what was going on were seizures.

I am glad that your doctors are working together on this and hopefully they will find the right meds for you soon! I really look forward to getting to know you and welcome to the WHL family!

steve.b
09-18-2011, 05:02 AM
hi robin, and welcome.
i have not had sezures, but i am having brain pauses.
my brain just switches off for a moment.
tgal, who has written above me, is unfortunatally diagnosed with them.
maybe you two might want to discuss things together.
she is a wise lady, who has learned a lot.

i also call her my friend, and know she will share what she has learnt.

prothumos
09-23-2011, 03:00 PM
Hey Tgal,
Thanks so much for responding and I'm so sorry it took me so long to reply. I've been kind of sick lately and today is the first time in days I've even logged on to the computer.

To be honest I feel like I'm in limbo....my neuro (who is just excellent & I'm so blessed to have him) has been treating me for 11 years. He was appalled at how the rheumy interns handled the seizure and hospitilization and called them all "idiots". I should note that my rheumy, who has treated me for 7+ years, didn't even bother to walk from the clinic to the hospital while I was there. Really disapppointed me. Anyway (lol)...my neuro wanted to rerun the EEG when I was NOT on anti-seizure meds and I have one more week to go before the test. I'm not allowed to drive, and my husband was so freaked out by the seizure that he has been lining people up to "sit" with me while he's at work. I feel like a 5-year old, lol. (And I know I'm being whiny.)

I'm two weeks out from the seizure and I'm still so tired that it's crazy. And I feel like my brain is not working properly: I hunt for words and my memory is just shot. I get up to go to the bathroom and as soon as I'm standing I forget why I'm standing up. Is this all normal? Will it go away?

Thanks so much for being here and responding ~ you'll never know how much I appreciate it!

Robin

prothumos
09-23-2011, 03:03 PM
Hey Steve and thanks so much for replying! Sorry it took me so long to answer back but as I told tgal, I've just been so out of it I haven't been on the computer at all. Brain pauses, huh? Is that where you find yourself staring blankly at nothing and don't know why? That's been happening a lot lately. My husband will call my name to get my attention and when I blink and look at him, he says I've just been staring at nothing. Do you have headaches too?

Thanks again for answering me, and i look forward to getting to know you! Hope you're having a great weekend!

Robin

tgal
09-23-2011, 03:06 PM
Robin,

I don't have the words to tell you how much I understand. Once seizures happen you are not allowed behind the week until you have gone 6 months (in most states but there are some more and less) without a seizure. Lupus itself has "brain fog" but on top of the I think those of us with seizures (well be at least) lose much of our cognitive function. There are a couple of questions I would like to ask you but I don't want to do it in here. Don't worry if it is months before you answer. There is no time table on responding

tgal
09-23-2011, 11:45 PM
I have never had a seizure with my Lupus. However, in my research I found that seizures may be an indication of neurological (central nervous system) manifestations with your Lupus. People with Lupus often have CNS symptoms and seizures are, unfortunately, not uncommon in Lupus patients. In fact, seizures are one of the eleven criteria used when diagnosing Lupus.
Have your doctors run any tests to determine if there is CNS involvement with your Lupus? There are medications that are often used for persons with CNS involvement.
A period of confusion and extreme fatigue and sleepiness are common after a grand mal seizure, so your symptoms were not a rarity and, aside of the scariness of the seizure itself, should not cause you additional concern or fear.
I am including a website that provides information about grand mal seizures: http://www.mayoclinic.com/health/grand-mal-seizure/DS00222/DSECTION=symptoms. This site explains the two phases of seizures, what happens during those phases, what to expect after the seizure, and what to expect after the seizure. I hope that the site is helpful to you. Please let me know if you need anything further, we are all here to help you as much as we can.

Peace and Blessings
Namaste
Saysusie

Excellent post Susie. I would like to add one thing. When my seizures first started, ok not when they started but when we figured out I was having them (after the tonic clonic which were previously known as grand mal) I had test after test trying to "see the seizure". I had a seizure sitting on the chair as they glued the electrode's in place but NOT A ONE while i wore the thing for the 3 days.

Anyway, my point is, after moths of having people look at me like I was faking it or that I was bringing them on myself (IE not real) I finally had a doctor in the ER that had Lupus himself. After going through my history he dropped the chart and said matter of factly " I am not surprised in the least that nothing showed on the EEG's. Lupus seizures are often times cause by inflammation of the vessels carrying blood into the brain. If the brain gets hit with a lack of blood flow it effects the brain the same way as the electrical charge in Epilepsy. The problem with this is that the chance of being able to catch this on a test is often slim" He went on to explain that this type of seizure could be seen if one happened to be having an MRI at that time because the lack of blood flow would show up then where it won't during regular EEG testing. This description really hit home to me because on my last MRI they noticed a lack of blood flow at the base of my head, right where the head and neck attach. So it made completely sense that if the vessels inflamed anymore it could cause trouble.

I want to say how sorry I am about my grammar, spelling and even mixing up words in posts. I have having some strong CNS issues right now and I try to catch them but my brain is only half working (LOL I was talking in chat to red the other night and all of a sudden she said "tgal? Are you not feeling well?" I had no idea why she asked that until I looked down and part of my sentence read as follows "hjheo eyeenb woob". Wow... it was time for bed LOL. I know that people here don't care but it bothers me. If I say something that isn't clear feel free to ask.

prothumos
09-24-2011, 11:11 AM
Tgal,
Oh my GOSH!!!!! I love what you said in your post to Suzie.....about people looking at you like you were faking it. When they got me to the ER, the MRI showed no evidence of brain bleed, so the ER doc (who was awesome, or at least I think I remember him being awesome, lol) said it was "over his pay grade" and transferred me to the main hospital in New Orleans. That's when I got hit with the roving bands of interns. They put me on anti-seizure meds and THEN did the EEG 2 days later, and ran the CAT scans. On discharge day they blithely looked at me and said, "oh well, we can't find anything, go in peace, yada yada yada....." I should mention that the last thing they did was to run a drug/alcohol chemistry on me and you know what, that really upset me. Like they couldn't figure it out so they were going to assume that I must be doing drugs or drinking (in the hospital???) and that's what brought the seizure on. It must be MY fault somehow. This is the same thing that happened when I first started throwing clots and the local docs said, "oh well, sometimes women your age throw clots". ????? Turned out I had APS. It's just frustrating! But I know you know that. The best hting that has happened to me in the last year is that a little walk-in clinic opened about a mile from our house and I ran down there several months ago when I got the flu; turned out the doc had lupus herself and oh my gosh, it was like heaven. No having to convince anyone of the seriousness of the flu for me, no having to explain, just understanding and a course of meds designed to help me. I'd give my right arm if she'd open up a regular practice, lol.
Would love to talk with you about all this...how do I send my email to you?
Hope you're having a great weekend...think I'm going to sign on now as my eyesight is going spotty which is never a good sign. Thanks for listenging and for all help your.
Robin

Elo
09-24-2011, 11:51 AM
Hey prothumos!
Just a quick note since you asked how to message someone. Click on the persons name in the forum. A little menu will appear and give you a few options - add to contacts, view forum posts, etc. Click on "private message" and it will bring you to another window where you can message them.

If you don't want to go to that specific person, or want to send it to more than one person, go to the very top of the forum (on any page you're on), and on the upper right hand corner, next to where it says Welcome, and your username, it will say notifications. Click on that, and a little menu will drop, giving you the option to click on "Inbox". Click on that. From here, you can see your inbox, sent and received messages, and send a new message from here. On the left side, pick the link that says "send new message" and go from there! :)

tgal
09-24-2011, 01:46 PM
Tgal,
Oh my GOSH!!!!! I love what you said in your post to Suzie.....about people looking at you like you were faking it. When they got me to the ER, the MRI showed no evidence of brain bleed, so the ER doc (who was awesome, or at least I think I remember him being awesome, lol) said it was "over his pay grade" and transferred me to the main hospital in New Orleans. That's when I got hit with the roving bands of interns. They put me on anti-seizure meds and THEN did the EEG 2 days later, and ran the CAT scans. On discharge day they blithely looked at me and said, "oh well, we can't find anything, go in peace, yada yada yada....." I should mention that the last thing they did was to run a drug/alcohol chemistry on me and you know what, that really upset me. Like they couldn't figure it out so they were going to assume that I must be doing drugs or drinking (in the hospital???) and that's what brought the seizure on. It must be MY fault somehow. This is the same thing that happened when I first started throwing clots and the local docs said, "oh well, sometimes women your age throw clots". ????? Turned out I had APS. It's just frustrating! But I know you know that. The best hting that has happened to me in the last year is that a little walk-in clinic opened about a mile from our house and I ran down there several months ago when I got the flu; turned out the doc had lupus herself and oh my gosh, it was like heaven. No having to convince anyone of the seriousness of the flu for me, no having to explain, just understanding and a course of meds designed to help me. I'd give my right arm if she'd open up a regular practice, lol.
Would love to talk with you about all this...how do I send my email to you?
Hope you're having a great weekend...think I'm going to sign on now as my eyesight is going spotty which is never a good sign. Thanks for listenging and for all help your.
Robin

I understand completely! I actually sent you a PM last night. If you look on the top right of your page you should see a a red "1" on notifications. Click on that and it will open a box that says "In Box" click on it and you can read my mail about finding an ER Doc with Lupus... was wonderful!

Elo gave you great instructions too!