Epilepsy and Lupus

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/19/2008 1:27 PM (GMT -7)   
Hi. Im a 20 yr old mother of a 15 month old little boy. I started having seizures at the age of 15. The first came after maybe 2 hrs of sleep, being on the computer all night and waking up for school the next morning. I was looking up at the sky and boom I was out. I had a grand mal seizure. I was admitted to the hospital for 3 days and they ran tests. The only thing found was that I had an abnormal EEG scan. That all happened in Oct. of 2003. I was sent to a local neurologist and put on carbatrol for 2 years. February of the same year I had my 2nd seizure which was due to lack of sleep again and not taking my meds correctly. After that I took my meds like I was supposed to and came off of them in March of 2006. I still have abnormal brain waves to this day. I spoke with my neurologist last month about the possibility of lupus and seizures because of my joint pain and many other symptoms and he said they did not test for lupus because they usually associate epilepsy with psychosis as well when concerning lupus. I guess my question here is...is there anyone here that has epilepsy with lupus and had that as the start of their disease? If so how did you come to find out you had lupus etc? Hope all is well and God Bless you all! -Brit
*Wifey & Mommy*


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 10/19/2008 5:06 PM (GMT -7)   
Hi. I have read your post and can sympathize on some levels with you. I am a 27 year old female. I too have epilepsy and I have lupus as well. I was diagnosed with Epilepsy about 6 years ago. I was attending college and inbetween a class break when I collapsed in the stairwell on campus with a grand mal seizure. I had been experiencing "weird" things like occasional hearing loss (non-permanent), dyslexia that would come and go, speech problems from time to time over the previous several months, before that happened. I hadn't come anywhere to a diagnosis of epilepsy before that day. I went to the hospital in an ambulance and had another seizure once in the E.R. Since then, I have been on Tegretol, and it has controlled my seizures. This was in Jan of 2002, and now last summer ('07) I was diagnosed with the lupus. How it came about for me, was that from late November 2006 - Mar 2007 I had a cold that would not go away. I was feeling tired all the time. At one time, my hand turned red at a certain part and puffed up 1/2" with inflammation...my fingers felt like they had arthritis in them, as well as my ankles at times. They did blood tests galore, and found a whole lotta things out of wack. I had almost dangerously low neutrophil count at one point of 0.8 a really high GGT 105 (don't know what that is), 2.3 WBC count etc...also have slight anemia. What finally did it was in mid spring when I started to see a dermatologist for my hands. They had inflammed at parts, and were red, and puffy, and not at all like they were months ago. He took a skin biopsy and from the results, that was the last piece of the puzzle needed for diagnoses. He talked with my other specialists and GP and they decided together...for me it was being totally persistent. I think that I had my blood taken within those few months like at least 30times. For one month, once a week I went every to get it taken, plus all the tests in the interim. I'm sure we all have our stories. All I can say to you, is be persistent. Don't let the symptoms that you're experiencing by pushed away, or minimized in any way. You're the one that has to live with them. I hope that you do find a diagnosis with the help of your doctors. Just don't give up. Sometimes it takes the right piece of the puzzle for it all to click together.

I too asked my neurologist if he thought my seizures could be lupus related, or my lupus medicine related, and it was looked into, but I had to push to get him to do it. They don't really was to entertain that option. God bless you too. Write me back if you want to talk more.

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/20/2008 7:56 AM (GMT -7)   
Hey again. Thanks so much for the reply and Im sorry for the things you have had to go through as well. It is not fun or easy for any of us. The only thing my neurologist said to me when I told him about my joint pain was there was a rheumatologist locally I should see. So thats what Im doing. Im so excited yet so nervous because just recently I noticed a sunburn like rash on my face and arms...sometimes my neck and ears when its real bad accompanied with a burning feeling similar to sunburn. Only it feels like its on the inside and isnt painful in any other way. Anyhow, it was then that I realized myself it had to be lupus. That felt like the last piece of the puzzle for me personally but I am praying that the drs will figure it out because this week has been a hard one feeling bad once at least everyday. I wish you the best too and hope you are feeling alright. *hugs* and God Bless :) -Brit

P. S. I would love to stay friends and keep in touch if you like :)
*Wifey & Mommy*


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 10/20/2008 2:01 PM (GMT -7)   
Hi Again!:) This is just a quick reply, as I'm waiting for a car ride, but I would love to stay in touch. I'm looking to make a few new friends that have lupus/ or something else equally as difficult to go through. Illnesses are a hard thing to go through, and I find that sometimes people who don't have it as rough, just can't relate, ya know? My close friends, family and husband are great at trying and listening though:) I'd love to hear how it goes with your new rheumatologist. I'm sorry to hear that you're having a bad week. Me too! I'm in the middle of a flare up. Not fun at all...however, I just had a really encouraging appointment with my GP and she's going to see me again in 2days for more help. YEAH! I'm having trouble walking right now. My quads are really badly inflammed. Anyways, my rides here, and I'd best go, but write me again soon. Is there any way to give you my email?

-Ellie 27

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 10/20/2008 3:18 PM (GMT -7)   
Hey there :) I am starting to feel bad myself. My thighs are burning and I have a headache and have had leg/joint pain on and off like I do what seems everyday. I am also looking to make some new friends and agree with you about the ppl who arent as bad off. Sometimes they either forget how bad off they were or havent been there and really dont know what it feels like. Im glad you are getting help to feel better :) I think this is a flare up for me too. I just dont know when it stopped and when it began again...or if it ever went totally dormant. Im just not sure. Anyhow, what does the inflammation feel like for you? Is it pain with a warm/burning sensation that feels really hot on the inside and warm when you touch it? Thats what it feels like for me and sometimes sharp pain along with a deep ache. Well I hope you have a good night! My email is mommaof1lilboy@yahoo.com Just send me an email and put the subject as this site or something Ill know what you mean..or you can post it here if you dont mind other ppl seeing it. Take care and ttys! *hugs* -Brit
*Wifey & Mommy*


Monte
Regular Member


Date Joined Sep 2006
Total Posts : 159
   Posted 11/3/2008 6:47 PM (GMT -7)   
Hi,
I have lupus and epilepsy also. I was diagnosed with both about 7 and 61/2 years ago. Lupus first then epilepsy. My rhuemy kept thinking I was crazy when I was telling him these symptoms that I was having, strange vision,twitching hands and arms. He finally sent me to a neuro pshyciatrist. I knew I wasnt crazy so I went happily. She did some tests on me and told me she thought I was having seizures and that I needed to go back to my rhuemy and tell him to order a EEGfor me. He did with a sour look on his face, and low and behold I was having seizures. At least he had the good grace to apologize. I found another Rhuemy, life is too short, you know? It is good to find others that have lupus and epilepsy well if you can say that. Manthe

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 11/8/2008 1:09 PM (GMT -7)   
Hey. Thanks for sharing your story :) I know its hard for all of us. Its nice to know there are others out there with similar situations :) I wish you well. I have my Rheumy appt this wednesday coming up so im eager to go and get things figured out. I just hope and pray I dont get a "I dont know whats wrong with you" response ya know? Well take care and God Bless :) -Brit
*Wifey & Mommy*


Nibbor
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/10/2008 3:20 PM (GMT -7)   
Hi, I'm new here. I have been having seizures for a little over two years. I have mostly grand mal, but also petit-mal and psuedo seizures. It's like getting in a severe car accident sometimes, waking up and having amnesia. I have many scary side effects from my seizures including, taste of blood, smell of blood, hallucinations, disorientation, and forgetfulness; not to mention the MASSIVE bruising and pain I go through. I've been without a seizure for about 2 and a half months, I am starting to have deja-vu, and I know when that happens I'm getting ready for a bad one. They, (neurologists and doctors), do not know why I am having seizures, they have put me on all kinds of medications, most made the seizures and my awareness worse. I have been prescribed amitriptiline, in hopes of some help, but alas, I am too afraid to take it. Does anyone else have the intensity of negative side-effects I am having, and have you ever gotten any answers as to why and how to help it get better. This disease, (epilepsy), has torn my world apart. I didn't even know who my husband and kids were after one of my last bad ones this last spring. I KNEW that they were my family, they just weren't familiar to me, and most of my 4 year old daughter's infancy is lost to me, I don't remember it. . . Some things come back and some things don't. Any feedback will be greatly appreciated, I feel so lost. .

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 11/12/2008 1:47 PM (GMT -7)   
Hey. Im so sorry to hear of your rough time. I myself have not had any but the 2 seizures I mentioned. My meds seemed to help me but lack of sleep is what really causes mine. I would seek a 2nd opinion just so the dr could possibly find something the other missed. Were you ever prescribed Carbamazepine? aka Carbatrol? That is what I was put on and it helped. It does not have as many side effects as most like Depakote which causes the unwanted weight gain. As far as the memory issues, after mine I had them too. Id be in and out of conciousness and couldnt remember how old I was or what day it was. Its like I was talking to ppl and didnt even know it and I was in the ambulance talking and then blacked out again. That was a grand mal seizure. The 2nd was petit-mal. I know some of what you are going through and have 16 month old so i know its hard. I will keep you in my prayers and please keep us posted! *hugs* God Bless -Brit my email is mommaof1lilboy@yahoo.com if you need to talk :)
*Wifey & Mommy*


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/29/2008 7:57 PM (GMT -7)   
I have Lupus and non-epileptic seizures (simple partial).  My seizures were caused by a stroke that I had in 2002.  I have the antiphospholipid syndrome.  Thick sticky blood, and that caused my stroke.  I'm very fortunate to not have suffered any other problems.
 
Seizures are quite common for people who have CNS Lupus (central nervous system). It's lupus in the brain that causes them.  To know if you have CNS Lupus you need a spinal tap and MRI done.  Paranoia is another common symptoms of CNS Lupus. 
 
If you ever want to join us in the Lupus forum, please stop by! 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/22/2009 4:51 PM (GMT -7)   
ty ginny. i am seeing my neurologist feb 29th i will mention it.
*Wifey & Mommy*


daking769
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/1/2009 8:25 PM (GMT -7)   
Hello, I have been diagnosed with Lupus for 10 years now (diagnosed when I was 12 y.o.), and I have been epileptic for 7 years. I have had one major petit mal seizure and one grand mal seizure where taking to the hospital in an ambulance, and various experiences in between. Being a college grad student, my past seizures have been due to high level of stress, lack of sleep, and not taking my Tegretol properly. I tend to experience a sense of deja vu or like a "Wow, hit" sometimes when I feel I've seen or been through things before. My doctor tells me I tend to go into a 'dream phase' while still conscious. My dreams at night are phenomenal and embracing-- I LOVE to sleep for that fact. My girlfriend has told me I tend to twitch and my body jumps a lot when I sleep so Im not sure if Im having petit mal seizures or dreams. To be honest, it bothers me but its also very interesting to me. I have now learned to embrace it more or less, but I feel it is something to not be played with. I'm now living alone and a little scared...

I'm 22 and I'm curious if anyone has any comments or suggestions....

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/4/2009 8:48 AM (GMT -7)   
daking769,

I experience similar things as well. I have not been diagnosed with Lupus as of yet, but it is suspected. My PCP is sending me to a neurologist because she is concerned that I might be having seizures and not realizing it. I too experience a lot of deja vu and have since I was very young. My dreams are phenomenal ((great word)) as well. They are so real. In my dreams, I feel like I can really reach out and touch people. It's insane and I almost always remember them. I twitch a lot in my sleep as well. ((I've been told)) I have considered doing an overnight EEG. Maybe you should too?
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