New Member, shelly-jayne, Pain & Seizures

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Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 5/13/2013 2:16 PM (GMT -6)   
Please welcome our new member shelly-jayne.

shelly-jayne said...
Hello Everyone
I'm new to the forum and the site and wanted to ask some advice. I'm a 27 year old female, diagnosed with epilepsy but have been having a lot of symptoms lately that are looking more like auto-immune. My doctor added an additional diagnosis of lupus last month. I work for the northern california epilepsy foundation and was pretty confident in my diagnosis but now my world has been turned upside down when I found out that lupus causes seizures. Have I been on the wrong medication this whole time. My seizures occur daily so now doctors want to put me on medications for both... I am having a hard time accepting the diagnosis of both being epileptic and having lupus. I have grand and petite mal seizures, migraines every morning, and more symptoms than I like writing out in between. Most friends have no idea what's going on because I'm not ready to open up to everyone until I have a final diagnosis but I'm feeling pretty alone in the meantime. Is it truly possible that I can have both of these diseases or should I have another doctor's opinion. I've been with my doctor now for two years but I feel like I'm on too many medications, my boyfriend finally confronted me last night that he feels like he's sitting by while doctors slowly kill me with medications without even knowing what they're treating me for. With the seizures, I'm no longer having a period, I have lesions on my ovaries and down my ear canals, severe vertigo, migraines in the morning along with vision loss, and then seizures to boot. I'm only 27 and don't look sick but am now permanently disabled because noone knows what else to do. I'm still in school and summing up another degree while waiting to be healthy enough to work, but am afraid that that day will never come. My boyfriend wants me to be hospitalized while they take me on and off each medication to see if they're all really necessary because he's afraid that I won't be able to have children one day if I continue on the heavy anti-seizure medicines, a lot of them have led to problems with childbirth later. I don't know what to do. If the drugs aren't controlling the seizures and the lupus flare ups are causing seizures, then isn't there a chance that it is all due to lupus? Everyone has been too scared to change my seizure meds to know. I'm willing to do anything at this point, if someone has advice please pass it on.
Lonely and Confused Nor Cal Gal
p.s. How do you all handle the pain? All of the pain meds are making me sick, But are hard to live without these days....

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/13/2013 9:35 PM (GMT -6)   
Sorry you're having to face this diagnosis too.
I don't know much about seizures except my niece suffered from petite mal ones as a little girl but grew out of them.

Your boyfriend might have a point about being hospitalized to see what meds you could do without.

It may be the lupus causing the seizure or may not. I'm not a doctor.

I'm trying to get used to the pain because I have Lupus and Fibro. With fibro you will always have pain also. I try to find ways to distract myself with relaxation therapy, heating pads, muscle rubs, and hot showers. I don't start taking pain medicine until it stays at a constant level 5 (annoying and hard to ignore). Then I reach for the tylenol first. If the tylenol doesn't calm it then I move on to the tramadol. At night to help me sleep easier I take gabapentin.

Please keep coming back here for any questions.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Jan 2013
Total Posts : 1038
   Posted 5/27/2013 6:48 PM (GMT -6)   
Hey Shelly. I too am young and just got dx. It is very scary. I was batted around for months before a dx came in. In the process I got dx with several other illnesses. I also still have another illness to be tested for because the preliminary test came back abnormal. It is hard to believe so ,any things could go wrong. For you maybe they aren't. You have to do what you believe in. In you do t have faith in your doctor anymore get a second opinion. It couldn't hurt anything. Good luck
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31
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