seizures with Lupus??

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kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 9/22/2010 10:33 PM (GMT -6)   
HELP! Has anyone had seizures with Lupus? I just landed myself in the hospital today with a seizure, I have an appt with my rhumy tomarrow, dont know if its conected.
 
Kat10

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted Yesterday 9:09 AM (GMT -6)   
Hi Kat. Your seizure is a lupus symptom. It's actually one of the 11 criteria to diagnose lupus. Seizures are part of lupus nervous system involvement. I've never had a seizure, but I have CNS symptoms. I take Cellcept to help keep my symptoms under control. I hope your rheumy appt goes well! Love, Butterflake

kat10
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Date Joined Aug 2010
Total Posts : 112
   Posted Yesterday 3:57 PM (GMT -6)   
Thanks Butterflake, I did not know that was a symptom, Thanks for the info :) I told my Rheumy and He said he wants me to see a nuro because he knows nothing about seizures.
I am on Neuroton for them right now but I havent had one in a while and this one was worse I has uncontoled body movements which I had never had before. so I dont think the meds are working, my girlfriend is a pharmacy tech and told me that paqunil can effect of cause seizures so I am going to check into that too beccause I have been on paqunil for about 4 months. Butterflake what is CNS symptoms? thanks for responing to me.

Love
Kat10 :)

Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted Today 8:38 AM (GMT -6)   
Hi Kat. My rheumy also referred me to a neuro. The work-up I had was normal, but I still have Central Nervous System (CNS) involvement. Be sure to see the neuro cause the seizures you describe can be serious. 
 
My CNS problems include difficulty speaking- it's a kind of stutter that my rheumy says sounds like a record skipping with almost every word. He gets very worried when my speach gets bad. I frequently fall so I use a cane or walker. I can get double vision and/or trouble judging space (just yesterday I ran my truck up on a curb and got a flat tire). I often get tremmors and/or jerking movements. Like many lupies I have cognitive problems which is called Lupus Fog. We've actually had some good laughs on the forum talking about the crazy things that happen with Lupus Fog.  
 
Let me know how your neuro appt goes, ok? Love, Butterflake

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted Today 9:12 AM (GMT -6)   
Hi! Kat,
It certainly could be connected, and I hope you are feeling better. CNS SLE can cause seizures, and my neurologist sent me for an MRI/MRA that was 'normal', but screens me for any seizure type activity every time I see him. It is one of the big things I worry about, as I, like Butterflake, have cns involvement. I fall, I can't think straight, I sometimes don't have the muscle strength to even hold up my arms. The next time I crash neurologically, I have agreed to have the spinal tap I have declined to date. (I know... mad ) It is a good plan to see a neurologist, I admire your dr. for admitting she/he isn't experienced in seizure tx. Plaquenil and Neurontin have helped me immensely for over 5 yrs.  The plaquenil has helped my joint pain, and the neurontin lessens the terrible burning, numbness and tingling in my extremities that I live with most of the time. Lupus is an autoimmune disease that causes nerve inflammation, and is considered and taught as "a target organ" disease. So some people have skin symptoms, some kidney, some nerves, some all, and as we here know too well, the signs and symptoms, the antibody markers, they come and go. I questioned my sanity and my first symptoms were antiphospholipid antibodies, and then I started falling.
hugs and keep us posted,
suetoo
ps. I am absolutely certain I saw the bunny that Butterflake swerved to miss..... tongue

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted Today 2:30 PM (GMT -6)   
Oh mY gosh! THANK YOU! Buterflake and Suetoo I am reading you post and saying yup thats me, I fractures 2 of my toes 6 months ago having a seizure. I have the same problems with speach and forming words basically everything you said. I was diagnosed with a seizure disorded a year ago , I have been good for a while untill recently and now my body is twiching, convulsing or spazaming whatever you want to call it and I t scares the hell out of me. I am new to this Lupus but not to the symtoms so I am still learing thanks again for all the info :) And boy do I feel dumb I did not know what CNS stood for, thank you, I sould have been able to figure that one out. I will let you both know when I see a Nuro.

Ps. about that Bunny I swerved to miss that same Bunny except it was in my house.LOL!

Big hugs to you both :)

kat10

Catlady4520
New Member


Date Joined Jun 2006
Total Posts : 14
   Posted 10/12/2010 12:00 AM (GMT -6)   
Actually I was diagnosed with lupus of the brain in 2005 and the first sign of this was the seizures - my rheumatologist was out of town so I was sent to a neurologist who ordered an MRI. When she got back she ordered a lumbar puncture and confirmed the lupus diagnosis. Up to that point, I only had a diagnosis of Raynaud's and UCTD. I went through 6 mos of chemo and then I'm permanently on Cellcept, Plaquenil and am going to have to talk to her about my Raynaud's as it's getting much worse. I had been on several different seizure medications but haven't had a seizure in several years now especially since the chemo treatments.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 10/16/2010 11:38 PM (GMT -6)   
Catlady Thanks for your replay, did the Mri show anything concerning seizure activity? Or is that why they did the lumbar puncture? How dose that show in the spine?
Are you able to work? because right now Icant and I have no income, soon to apply for dissability, but I am not very hopefull. I cant drive. What type of chemo are you on?
I am on Methotrexate and taking Neuroton for the seizures but apparently its not working. I am glad you are seizure free for now thats great!

Thanks

Kat10

Catlady3
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 10/17/2010 11:10 PM (GMT -6)   
I was on Keppra for the seizures but haven't had to take it now for almost 4 years. The best lupus book I ever found is called the Lupus book. I will see if I can find the name of the chemotherapy drug. It was not as strong as what they give say breast cancer or lung cancer patients but it still makes your scalp itch and makes you sick. The MRI showed white spots on one side of my brain which indicated lesions and so my rheumatologist ordered the lumbar puncture. In the spinal fluid they found the presence of the cells that showed the lupus was eating away at the coating of the nerves in my brain which is what cinched the diagnosis for lupus and not for instance MS. She told me I was lucky it was not MS as lupus is more treatable. If you don't have insurance, please apply for government aid and as for medication once you get your diagnosis, there are several aid programs and some of the drug manufacturers who will help. There is also a program called RX Outreach who may be able to help with rx costs. I'm just now struggling with Raynauds which makes my hands, feet and ears turn red, white and blue and I'm constantly cold. It's not fun at all and is related to lupus so she tells me. She gave me Norvasc but it I started it but getting severe headaches so may not be able to take it. Good luck but I would check that book out of the library.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 10/19/2010 10:56 PM (GMT -6)   
Thanks catlady3 I am going to check out that book. Yes you are lucky its Lupus and not MS. I have a friend who has Ms and she is having a really hard time right now. I know we all go through our own hard times but when you see someone suffering worse than you it kinda puts things in perspective, and gives me the strenght to go on if she can. My sistuation is complicated my husband and I are seperated we live appert and he has promised to keep me on his insurance as long as I need it. but I am woundering if I might be better of without it and apply for some sort of assistance, because I am not working and its getting harder and harder to keep up on my copay and medications, I am living off the money I saved and dont have a whole lot left, pretty soon that will be gone too. I will check out those programs and appreciate the advice, thank you so much.

Kat10

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 10/27/2010 10:50 PM (GMT -6)   
Well my neuro put me on Keppra, apparently the Neuroton is not working and diagnosed me with temporal lobe epilspy, I just started taking the Keppra hope it works!

dani0827
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/3/2010 9:28 PM (GMT -6)   
Hi,
I have been diagnosed with lupus since 1994. It started with the malar rash and joint pain and then has slowly progressed to a positive spect test and a class 4 kidney infection in 2000 to now having seizures which landed me in the hospital for 4 days. I am told that I have lupus cerebritis and I am now currently taking; prednisone-40mg, plaquenil-400mg, prozac-20mg,xanax-4mg, dilaudid-4mg prn, dilantin-300mg, ambien-10mg. Since 1997 I have suffered from severe depression and anxiety and have even been through bouts of agarophopbia. I am very irritable, depressed, racing thoughts, anxious, no short term memory( and I mean totally gone,) and just a bad overall feeling of well being. I am allergic to penicillin and sulfa drugs and I was doing very well until a recent cruise that I took in which I developed an infection from a tick bite. On the cruise line I was given IV anti-biotics and I believe that I was allergic to the medication that I was given. My thoughts are racing like crazy and my family members are telling me that I am acting nuts. The doctors have tried me on seroquel and risperdal for racing thoughts but I had to stop them because of negative side effects. Can anyone please give me some advice because my panic is out of control. I have been told that is what cerebritis does to you and and will get better as the lupus does?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 11/3/2010 10:51 PM (GMT -6)   
Welcome to the forum, Dani. We also have a forum called "Anxiety - Panic Disorders" which might more directly address your panic issues.

I also have some anxiety/panic - either as part of the disease or as a reaction to disease-controlling medications. I have xanax available but don't use it unless I have an issue, and even then use less that you do.

The only other thought I have is this: Have you had one single doctor review all your medications? Sometimes there are drug interactions or side effects we aren't aware of that can make these kinds of feelings much worse.

Wishing you calm days ahead,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

countryboy
New Member


Date Joined Jun 2009
Total Posts : 18
   Posted 11/6/2010 3:41 PM (GMT -6)   
for my wife when the seizures started, she took topamax to help with the seizures. Methotrexate helped a lot until her liver started acting up. She did high dose prednisone for years but is now finally down to 15mgs a day which is the lowest ever.
Cellcept has been miracle drug. We use the name neuropsychiatric lupus as opposed to cns lupus. Her headaches continue to require constant medication.
The neurontin helps a lot to keep the peripheral nerve pain manageable, but it doesn't help the headache.
Additionally she has a monthly infusion of IVIG at the hospital and this has been very helpful.

Good luck

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 11/6/2010 11:57 PM (GMT -6)   
Thanks Countryboy, I  am sorry to hear your wife has had such a rough time with it. Jus curious how long was she on the methotrexate befor she started to have problems with  her liver function? I have only been on the methotrexate for about 5 months but my doctors keeps upping my dosage now I am up to 2.5 mg  and 6 pills a week, and just put me back on the pred, Lyrica, and keppra I have never been one to take pills and now I have to take an arsenal of them and I know it can effect your liver but at what point is enough? ya know. I have been hearing more  and more about that monthy infusion, I think I will ask my doctor about that I know not all meds work for of everyone, but I am willing to try anything to get this under control along with these dang migraines that are becoming more frequent.
 
Good luck to you both, I know how tought it can get.
 
Kat

countryboy
New Member


Date Joined Jun 2009
Total Posts : 18
   Posted 11/8/2010 8:51 AM (GMT -6)   
Kat--I tried to think about the Methotrexate but am just not sure. I think it was a couple of years and as I remember it her dose was just below 20 mgs but she took it as a shot as it was too hard on her system. Although we never were sure whether it was the methotrexate or the 30-40 mgs of prednisone she was on at the time that was causing her to bleed internally.

She has switched to cellcept now as an immunosuppressant instead of the methotrexate.

The cellcept has worked quite well for her to slow the progression but remission just isn't going to happen for her

It is harder to mess with her now though--(you get a pretty warped sense of humor after a few years I think)

I used to be able to say--not only is she addicted to coke--(diet coke actually) she was also a Meth head
she saw the humor although i am not sure others did

Also like you she didn't used to be able to take pills-but now she is happy to be down to around 20 a day from her old days of around 30.

IVIG infusion is not easy for most people. It can cause a couple days of brutal headache as well as 2-3 days of flulike symptoms but it also gives my wife about a week of feeling more like her old self than she can any other way. It is also gastly expensive. For us though it takes the combo of "the big 3" cellcept, prednisone, IVIG to keep her from hallucinating, crying in pain and living on narcotics for the pain, so it is worth it.

Good luck

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 11/9/2010 1:02 AM (GMT -6)   
Countryboy, Thanks! I like your sense of humor I might have to use that one Meth head, too funny! Wow she was on a high dose of Pred, well its high to me anyways I am only taking ...I think 6 mgs very low dose. I have heard of so many people that have had issues with taking the Methotrexate, I guess I am one of the fortunet ones that It never bothered me ( as far as bad side effects) Hopefully someday she will be able to get that 20 pills a day down to 10 and feel good, thats all we ever hope for, feel good and not have to choke down 30 pills wow that is alot. Funny story Iwent to a craft fair over the weekend and bought a small medicine bowl for 2 pills I have to take that always get stuck in my throat and I need to crush them to take them I ussually use a spoon and paper towell but somehow they allways shoot across the kitchen and I loose them somewhere or crush my thumb,( hench the medicine bow)l I was so happy to finally have one I could not wait to use it, my family thought I was nuts they never seen someone get so excited over a medicine bowl, its the small things right.

My prayers are with you both and keep up your sense of humor, god knows when we dont have our health a sense of humor is all we got, sometimes we have to laugh or we will cry.

Good Luck to you too!

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/26/2010 7:42 PM (GMT -6)   
Hi Kat. I also have temporal Lobe Epilepsy. I have been on Keppra for about 3 years now. It's about the 5th anti seizure drug I've taken. It has worked great for me, so hope you also have good luck with it. I was diagnosed with epilepsy about 15 years ago and just Lupus this year. Although I have had many symptoms for years. Did he diagnose you from your EEG or from your MRI? My Neuro has always said my MRI looked good (thank goodness) but now have to wonder if the Lupus and Epilepsy aren't related. I don't have uncontrolled body movements but so many other bizarre seizures. I have no long-term memory. Including kids births, my wedding, ect... During seizure activity I also stutter quite a bit and live in a fog. Also have a type of Hallucination. (kind of cool for all of about 2 seconds). I have been seizure free for about 1 1/2 years. I hope the Keppra works well for you. If not there are soooo many other Anti seizure drugs. Good luck~~

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 11/27/2010 5:09 AM (GMT -6)   
Hi Slm6, Thank you for your feed back on the Keppra. I am glad to hear you have been seizure free for 1 1/2 years thats great! It gives me hope, When he first put me on the Keppra I did still have seizures so he just upped my dosage and so far so good,( its only been a couple of day on the upped dose) I am keeping my fingers crossed.As you know after you have a seizure you cant drive for 6 months, and its hard, I feel helpless having people to have to drive me everywhere. I had am Mri done in 2005 and it was normal, so was my EEG. but my new nuro is having me have them done again, due to the frequency of the seizures. he said you can have normal tests and still have them due to the classic seizure activity and symtoms. I can relate with the memory thing, its very frusterating. (and I also stutter with them). I was also diagnosed with Lupus this year so I know how you feel, and if you ask me I do think there is a connection, with the Lupus and the seizures. as I am new to this I am finding out that the Lupus effects so much. I am glad you found this site, its great and has really helped me. good luck to you with the Lupus and remaining seizure free. Be well! and welcome! :)

Kat

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/27/2010 5:43 PM (GMT -6)   
Ok I saw the title of this post after I signed in to the forum and I automatically had to click it and read it. I didn't even read all the posting in this forum but enough to know all you guys are generally on the same path as far as symptoms with your CNS involvement.....I wanted to share my story and get an opinion from you all because as of yet I have not been dxd with CNS involvement but have thought ive had it since the beginning.
In 2003 at 15 I had my first seizure. No warning, just happened while I was waiting for the bus outside of my house before school one morning and just fell. It was grand mal like the other 2 ive had. I was put on carbatrol for 2 yrs and as a rebellious teenager(because no one was listening to what i had to say about my symptoms being anything serious)didn't take my meds right and had another seizure a few months after. I came off carbatrol in march of 2006. I was seizure free until this past january. However, at 15 along with my seizures I also had a very severe 2 yr depression which my parents and everyone blamed on my negative attitude towards everyone and being a teenager etc etc. There were times I would wake up so pale and weak I couldn't move. I would ache(ive had a leg ache that woke me up some nights since I was 7 yrs old). My hands and feet would always turn purple and in the heat I would always get this redness across my chest,nose & cheeks and arms. People chalked that up to embarrassment and just getting flushed. In 2007 I gave birth to my son at 34 weeks(after my water broke for no reason at 27 weeks & I carried him till then)he was in the hospital 3 weeks after birth. I pumped breastmilk for him and once he came home everything seemed to dry up so I stopped and switched to formula. After that I noticed that weakness/etc i described earlier when I was younger...except it got worse. There were times i HAD to lay down and sleep or I was going to fall in the floor. My son being premature didn't sleep well and was also on a heart monitor for the first 6 months of his life and had reflux etc so it def took a toll and even then everyone said it was because things were so hard on me having a preemie. In 2008 I started noticing this burning in my thighs. I had thought it was stemming from the ache I always got in my legs but one day I just noticed the burning in the middle of the day and was like something isnt right. I went to my PCP and she did tests all of which were normal besides being anemic due to severe iron deficiency...why...we dont know. I did end up asking her what could cause this pain? And one thing she mentioned was lupus..I looked it up and low and behold, a disease that fit every little single thing in my life from birth that could explain why I felt the way(s) I felt. I was convinced. So I went to a few drs locally who dismissed me as "normal" even after my ana's and cpk's started coming back elevated. Finally went to Johns Hopkins and received a diagnosis of UCTD w/SLE features. I was put on Naproxen, then plaquenil, then Neurontin, tried Cymbalta, was on allergy meds etc etc. I was a walking zombie due to the disease itself and the meds made it worse..nothing was better. ...Here's where the CNS comes in...I had an episode at school(college)one day last year where my tongue mouth and head/neck tensed up and went tingly. I had had the tingling in my hands/arms and feet/legs before but nothing like this. I had severe fogginess and it seemed like the room was closing in or something(very hard to describe). I couldn't speak but was texting a friend at the time and that was all I could concentrate on. I started having anxiety and I couldn't move. I finally did get up and ended up getting a friend to come by and take me to the ER. They tried to say it was angioedema(allergic reaction). I had a severe malar rash(im sensitive to flourescents which are everywhere, as well as the sun and even sunscreen..makes it worse). They gave me an iv shot of benadryl and prednisone and it made things better until the next day when it wore off and I had another episode sitting in the living room watching tv. It wasn't quite as bad which I figured was due to the prednisone Id had...so I filled my prescrip for the pred for the next 2 days and took that and it went away. I was due to get an MRI/MRA w/dye & an EEG(the er never did any testing for lupus involvement of anything and never did any tests for stroke, seizure,etc even given my history.)but then this past january I found out I was pregnant after having my 3rd seizure a week before. I still have yet to get the tests done. I have to set up the appointments. But everytime I talk to my rheumy or neuro about these things they go by tests and say since theyve been normal before basically "you dont have cns involvement." I have been on Keppra since I had the seizure. My daughter is now 9 weeks old and I stopped breastfeeding her around 6 weeks. Since then my symptoms are starting to come back slowly. Raynauds, rashes, fatigue, weakness, bruising,pain,etc. I am due to get a workup but what I need to know is this, if I get all these tests done and they dont show anything significant according to my drs, what then? How can I convince them of the CNS aspect? I know I have it, Ive heard so many ppl describe it and it fits me to a t. I am also being evaluated for possible IBD which can also cause CNS symptoms if it is involved with other autoimmune diseases...I am frustrated because I feel like Im not going to get the proper treatment if people wont believe me. Ive had the problem my whole life and cant take it. Plaquenil still isn't working and the only thing that ever put me into remission was being pregnant and I have 2 kids and I cant stay pregnant forever lol Any advice/suggestions?? Help! :/...Im sorry I rambled so much but I really want ppl to know my story and relate and feel comforted they're not alone as well try and find a way to convince the people that dont get it that it's real. I have been seizure free since being put on the Keppra but I still have nystagmus/eye twitching. I hope you all are well and thanks again. -Lupie Britt
*Lupie Britt*- Epilepsy Dx: 2003 & SLE Dx: 2009-Expecting Baby # 2! :)-Current Meds:Plaquenil-200mg 2x/day, Keppra-500mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day
*Due September 25th 2010*

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/28/2010 8:10 PM (GMT -6)   
Brit I'm not sure what to say about the docs. My EEG's have always come back with seizure activity. Of course you are on the Keppra now so I have to wonder if it will show Seizure activity or not. I also had all three of my children premature and experienced many of the same things. It is nice to know there is a reason for it all yet discouraging at the same time. At the height of my seizures I would have about 5 to 10 a day. They are so unlike Grand mals that they go unnoticed by others. My husband is the only one who can tell when I am having them. Of course I know, especially afterwards when it's everything I can do not to throw up and am not too sure where I am or how I got there. Stay positive and keep on fighting. Only you know your own body!!
Kat, it took me some time to become seizure free even with the Keppra. I know for me taking it at the same time everyday and not missing a dose helps. Now if only we can get this Lupus thing under control life would be great!! I just turned 40 this year and what a year it's been. Not what I expected for sure. Oh well life goes on and you have to make the best of it and count your blessings. Good luck to you both!
Stacy

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/29/2010 1:26 PM (GMT -6)   
Hi again. Thanks for the reply Stacy. I had abnormal EEG's for years after my first seizure(mine are all grand mals). After I came off the meds (Carbatrol) in 06 and was seizure free for 7 yrs I had a normal EEG. Then I had the seizure this past january and never got another EEG but was put on the Keppra. Why would the brain wave patterns change and yet Id still experience the nystagmus i never had until i had my first seizure? Weird...
*Lupie Britt*- Epilepsy Dx: 2003 & SLE Dx: 2009-Expecting Baby # 2! :)-Current Meds:Plaquenil-200mg 2x/day, Keppra-500mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day
*Due September 25th 2010*

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 12/2/2010 12:29 AM (GMT -6)   
Sorry to hear your having such a hard time forever-his-ladybug. I am with Stacy on this one. I know how frusterating it can be, dont loose hope and if you have to get second opinions, I did and I am glad I did it. you have to push for yourself to get the answers because no one else will, there were times I just wanted to give up and stop going to all my appts and just be like the hell with it, but I found the streaght to push through it and I am so glad I did because It got me my answers and I beveive I am benefiting myself by doing this, it took me 10 years to get where I am at today and I know what is wrong with me, but hey at least I know, because its a hell of alot worse not knowing. Hang in there you are not alone. Thanks for the feed back Stacy, good luck to you both
god bless
Kat

shelly-jayne
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/13/2013 1:58 PM (GMT -6)   
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.
Sincerely,
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....

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/13/2013 2:21 PM (GMT -6)   
Welcome to the Forum!

I have moved your post to it's own new member thread so everyone can welcome you! It's at www.healingwell.com/community/default.aspx?f=29&m=2729342&g=2729342#m2729342.

In my experience, seizures are not common with Lupus, however that doesn't mean they couldn't be caused by Lupus in some patients. You might want to check out our Chronic Pain forum -- there are many people there dealing with all different kinds of pain management situations.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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