i had a seizure today!! :/

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/19/2010 5:35 PM (GMT -7)   
So I start school today for this semester & im sitting at the computer lab killing time until class was supposed to start & i ended up having a seizure! I had 2 at 15 but have been off meds 4 that since march of 06. I just had my rheumy saying she didnt think i had cns lupus(even though i have burning pain & other symptoms of it) and how she didnt want to do a spinal tap and now she is saying she wants a repeat mri & spinal tap to see whats going on. She doesnt understand why the er sent me home especially only after getting a ct scan of the head & bloodwork which was normal. I did have a low grade fever of 99.3 before i left the hospital too. I have been getting them recently due to the lupus. I am very sensitive to the sun & fluorescent lights so im wondering if the lights caused the seizure?? Anyone have any input on any of this?
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.

Post Edited (Mommyof121) : 1/19/2010 5:43:03 PM (GMT-7)


jlb2
New Member


Date Joined Dec 2009
Total Posts : 7
   Posted 1/19/2010 6:43 PM (GMT -7)   
The first symptom of CNS lupus for me was a seizure.  I had several MRI's but it was actually the spinal tap which actually dx me 18 mths later.  I would definitely pursue both.  Good luck 

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/20/2010 5:37 AM (GMT -7)   
OH Britt!!! Bless your heart. I do not have sun issues so I do not have any input I just wanted you to know I was thinking about you and hope you get the answers you are looking for. about th low grade fever. For the last 2 months (since i had the H1N1) my temp has stayed at 99.5-100.4. I have chalked it up to being lupus.

Are yo going to do the Spinal tap? Keep us updated and I hope you have a break from all these symptoms soon!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/20/2010 8:02 AM (GMT -7)   
Lupie Britt, I hate to hear about your seizure but am glad it woke up your rheumy. Take good care of yourself girl! Hope all the tests don't drive you crazy and that you get good results.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/20/2010 8:20 AM (GMT -7)   
Hey there. Thank you all for the support. Honestly I dont even remember putting this post of from yesterday. I am still foggy from it too today even after sleeping 10 hours. My rheumy wants me to get in to see my neuro locally but the office there is being ridiculous saying theres no available appts and keep the one i already had for feb. 18th. my rheumy told me call and speak to your dr directly because that date is not acceptable. i am going to call him back after i finish this reply. Also I am going to get the mri & spinal tap done. I wanted to do it before this seizure ever happened. Can you have normal bloodwork and your lupus be active as well as have the cns lupus aspect too? I will keep everyone informed and I hope you are well! By the way..all my symptoms really started after my first seizures at 15 too so i wouldn't doubt it was my first lupus symptom. Ill post again soon! *hugs* -Lupie Britt
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/20/2010 2:25 PM (GMT -7)   
I hope you get answers. A siezure is serious stuff. I am glad your rheumy told you waiting until mid-feb to see the neuro is not right too. INSIST on speaking to the neuro directly.

Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/21/2010 10:29 AM (GMT -7)   
Thank you for the support. I am actually still very foggy from the seizure. I haven't felt this way before and im not sure if it is normal or not. The first day of school was when I had the seizure and Im also going to miss 3 days next week due to testing. Im seeing my local neuro monday, getting an mri/mra & another test monday morning & an eeg tuesday. Its like you try to get ahead but Lupus says no....im so upset :(
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


confusedinalabama
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/22/2010 10:03 AM (GMT -7)   
Hope you get better soon. I understand!!! I started having seizures in 2006 and just yesterday my rheumatologist after the last MRI said it is either M.S. or the lupus is now CNS. I'm scared and worried about the options but the lesions on my brain have incresased significantly since 2006. Anybody else having these problems?
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