Hi there
One of my co-lupus friends has been diagnosed with epilepsy. She's having seizures quite often and also diagnosed with Diabetes.
Is this also part of lupus?
I have had epilepsy since I was about 11. While it is difficult to find a drug protocol once you do you can be relatively seizure free. The thing is to get the right medication in the right dosage. And since seizures are a symptom of the central nervous system, if a flare is bad enough it can cause an increase in seizure activity. Hope that helps. God Bless
Hello Susan,
Sorry to hear you friends got seizures now..i do feel for her besides Lupus.
I have two forms of seizures they first started at 14 but really came out at 18 and i also suffer with low sugar which is as damgerous as high.
Everything in life covering all illnesses epilepsy/strokes/diabetes/ heart trouble the list goes on...can come on anyone naturally without Lupus but Lupus also causes all these illnesses besides...so there's a good 99% Lupus as caused her epilepsy...as Lupus caused mine besides other issues.
Like "Julie" said the correct medicine needs to be found to control the electrodes in the pain that trigger seizures...some specialist can do it straight away with luck and the right amount but with myself it's all chronic i'm highly drugged and my seizures still happen, on the correct meds alot of people recover ok and the seizures stop and with other's they don't with epilepsy it's always 50/50 on how well they can be controlled.
This link below explains about seizures and diabetes with Lupus.
http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/28080.html
Love Terri :) xxx
Yes maam, due to the medication, getting diateses is a side effect of taking prednisone, and some of the other medications, and the seizure activity comes with the territory too for some of us. Many blessings and hugs.
Hi Susan, hope that your friend gets better soon !!! I've had some seizures (2) , a while back and the doctors told me that they could happen since i have LUPUS . Along with everything else that goes on with this illness makes a person want to give up - BUT we can't . So hope that the doctors get the serizures under control , take care ... Beverly L.
to answer your question from what i have read the answer is NO, epilepsy and SLE do not have any direct connections. Up until a few years ago though, they did not see or know what to look for at least to how SLE affects the brain. Now they are realizing it can and does affect the brain.
I know it took me a least 3-4 years not to blame or think every illness i got was somehow tied in to the sle. Nope we just get sick like reg people. Remember this, SLE is connective tissue disease...which is about everywhere in your body. It is in your brain but I believe not in the all of it just the connective areas like to skull etc.
Plus how i read it is coming out is more through inflammation just like other areas affected by lupus but it can show up as one having a more outbursts or emotional break down looking like symptoms...just where you feel you might need help with your brain was how some patients described it.
As to diabetes sure it depends on if it is type 1 or 2. My great first lupus doctor told me that he noticed that most of his sle patients once getting up in age, 50's on up, almost all did come down with type 2. That is completely controllable by diet so no reason to not get it under control.
what others are telling you about getting right medication is the answer to controlling seizures. But! do not be alarmed if they are not sure what kind or what is causing your seizures. That is very normal from friends I have known with seizure issues also including my dogs.
One it was her liver has less than half the size....other dog (both labs) they never knew but her thankfully were far and few between. Here is weird part...which i would be interesting to see if human people with seizures had this also happen. Both my dogs seemed to sense that seizure was coming and would come wake me up when i was even in deep sleep. It was like the electrical feeling that came off them as they seizured..would wake me up..i just feel it actually while in it and sense it if i was awake or woke up before they started.
People i have known who had /have seizures knew exactly what i was speaking about but their husbands did not wake up nor felt it how i did. My husband did feel it coming off both dogs so men can.
Get best neuro you can find...and do not let them over drug you. Less is better...easier also to rule out problems. So remember that always.
I just would like to add this. My cousin who was about 15 or more years older than I had seizures, epilepsy When she went to College they would Not let her room with anyone because of it. She died eventually because she had a seizure all alone and smothered herself since her face fell face first into her pillow. They did not find her body until my Aunt insisted they search her room since she had been calling and no one was in her room as she was told.
My aunt and uncle did sue the University Systems here in California because of how they would not let her room in a dorm with a roommate like every other student did in the early 1960's. They took no money they just wanted the rules changed so this would not happen to another person who had seizures or was sick in other ways. Back than it was looked at like lepers were during Biblical times. Saddest part, is she was very intelligent and who knows what she might have discovered in Medical Research or as a Doctor which were her plans.
I hope you find the right dosage and your life can just be normal..as is possible!
Hello siskiyousis,
SLE is connected to causing seizures besides coming on naturally without suffering with Lupus.
I was born with Lupus and inherited it off my parent/s and at 14 had autisum's and at 18 full blown seizures which Lupus besides hearing voices and bad behaviour besides paralasis and also my neuro told me if you carry certain autoimmune diseases these can also trigger epilepsy.
With Lupus it can be through nerve damage which affects the brain also through accidents which can also lead to strokes plus the foggyness of the brain which we suffer...it manifestates itself and can lead to furthur issues.
Vasculitis alone of the brain can cause epilepsy besides damaging cells of the brain and leaving leisons...plus if the electric nodes are active and lying low...stress alone of Lupus can fire the electric nodes off.
Regarding humans knowing if they have seizures coming or are due to have one...in certain cases they can and myself for one...by either smelling stale urine or motion, the seizure can happen either the same day or days later but that's my warning signs besides it sending me high rated than normal and feel pressure in the brain than normal...all this was expressed to my brain surgeon which he stated was 100% correct in alot of seizure patients...i can also be watching the tele and know i'm watching it but the sounds all over the place, that's also another seizure.
I'm sorry to hear about the loss of your cousin and how you mention lepers (Stigmatized) and today it's still known as that but like you mentioned Susan's friend does need a good neuro for tests to be run for proper diagnosis.
This link below for members and yourself explains a great deal about SLE & Lupus.
http://www.neurology-asia.org/articles/19971_025.pdf
Terri :)
Hi,
I have Lupus and Epilepsy but they are not caused by each other. I do not have CNS lupus, so the seizures are not caused by that. I’m just one of the “lucky” people who happen to have to major diseases.
Hello Scottieintx,
I do feel for you because Lupus alone id enough to deal with besides epeilepsy ontop...i've had my epilepsy for years and now the Lupus which is another added bonus...when does it end. :)
Scottieintx said:
Hi,
I have Lupus and Epilepsy but they are not caused by each other. I do not have CNS lupus, so the seizures are not caused by that. I'm just one of the "lucky" people who happen to have to major diseases.
CNS which is pretty rare in SLE but does happen and can cause seizures so i stand corrected. But for the most part...seizures normally will be independent of SLE. I should also point out that CNS can be independant of lupus but more often than not if you have SLE kind of lupus and show CNS symptoms than usually it is connected.
Epilepsy is distinct types of seizures. Just like most kinds of health issues, seizures is area where often doctors just do not know what is causing them.
I am sorry Scottie that you are one of unfortunate ones to have more extreme case of SLE. Most of us can count our lucky stars that we do not have as severe. I know, i saw how much more severe my brother was sick compared to me...so much more that i felt i was healthy. Now some 20 plus years after he died, i am understanding more about how poorly he must have felt on daily basis.
Yes i have had kidney involvement and other major organ involvement due to SLE but compared to my brother...i still feel i have been very lucky. I just know that when most of us are told we have SLE we begin to think every time we get sick it is part of it...which mainly is not true in most SLE patients. It takes a few years to really understand what is SLE and what is something else or just pneumonia like my healthy husband would get. So I hope to calm people down...take a breath and think positive.
Plus..from Geneticist they still have not proven that lupus is inherited. It is like RA they think it is possible but they have not pin pointed this fact.
Hi siskiyousis, Hope things get better for you and your family . Sorry about your loss !!! Time heals all things - with PRAYER. I've had two serizures this year and both were related to the LUPUS . But my oldest brother( whom is deceased now ), he died from being TOTALLY epliepsic, which runs on my mother father side of the family ( which my grandfather was the only child and there is NOONE else left on that side of the family - they were know to have serizures from what my grandmother said B4 she died of a massive heartattack in 2000. Well just hope things get better for you and yours..... Beverly L.
Tez_20 said:
Hello siskiyousis,
SLE is connected to causing seizures besides coming on naturally without suffering with Lupus.
I was born with Lupus and inherited it off my parent/s and at 14 had autisum's and at 18 full blown seizures which Lupus besides hearing voices and bad behaviour besides paralasis and also my neuro told me if you carry certain autoimmune diseases these can also trigger epilepsy.
With Lupus it can be through nerve damage which affects the brain also through accidents which can also lead to strokes plus the foggyness of the brain which we suffer...it manifestates itself and can lead to furthur issues.
Vasculitis alone of the brain can cause epilepsy besides damaging cells of the brain and leaving leisons...plus if the electric nodes are active and lying low...stress alone of Lupus can fire the electric nodes off.
Regarding humans knowing if they have seizures coming or are due to have one...in certain cases they can and myself for one...by either smelling stale urine or motion, the seizure can happen either the same day or days later but that's my warning signs besides it sending me high rated than normal and feel pressure in the brain than normal...all this was expressed to my brain surgeon which he stated was 100% correct in alot of seizure patients...i can also be watching the tele and know i'm watching it but the sounds all over the place, that's also another seizure.
I'm sorry to hear about the loss of your cousin and how you mention lepers (Stigmatized) and today it's still known as that but like you mentioned Susan's friend does need a good neuro for tests to be run for proper diagnosis.
This link below for members and yourself explains a great deal about SLE & Lupus.
http://www.neurology-asia.org/articles/19971_025.pdf
Terri :)
i only am going to point this out because i do not want people panicking in thinking that seizures are common in SLE...or even epilepsy is something you can get from lupus.
I sent your link to a good friend who has worked for MIT, Harvard and now Stanford on medical research for SLE , autoimmune diseases as well as arthritis.
He said this is one of those examples that can needlessly frighten people. Lupus and epilepsy are their own separate issues. He said this is good example of information out on internet that is flawed and needlessly frighten people.
Internet is great source for gathering information but we really need to be careful not to just believe anything we read. I go to places like Lupus foundation of America plus some technical journals that he directed me too. But in all honesty much of it is over my head...i check it out for actual information on how lupus has affected me such as kidney information.
Lupus foundation has place to go ask Experts..they say very clearly that epilepsy and lupus are two separate issues. That people who have lupus do not have epilepsy from their lupus.
I justs really want people to understand that SLE is like being diabetic...it is chronic condition but with right doctor and treatment you can live a fairly normal life. I do not want to scare people. This is type of topic one should have with rheum doctor or go to authentic sites like lupus foundation. It was one of few...think i found two back in early 80's that was out there for information on SLE. I use to have to go to hospital libraries and read for information.
So internet is great and know we all mean well and just want to help. Just not everything on internet is reliable source.
Yes you are so right ! The best way is to ask your doctors and get information from the LUPUS Foundation of America. That's were i've been getting my information since Feb. 2011....Beverly L.
Hello Scottieintx,
Thank you for your imput and i am pleased your sizures are'nt through your lupus.
Love Terri :) xxx
Scottieintx said:
Hi,
I have Lupus and Epilepsy but they are not caused by each other. I do not have CNS lupus, so the seizures are not caused by that. I'm just one of the "lucky" people who happen to have to major diseases.
Hello siskiyousis,
I'm not out to frighten members and all doctor's have there own fields of work they train in besides knowledge.
I have an excellent Dermo who told me Lupus had caused my seizures as there's no history of it on boths sides of my family, then my rheumo confirmed it besides the interitence of Lupus off my parents...and if your parents carry autoimmune diseases their genes can pass on to their children, just the same as RA/Diabetes plus strokes th list can go on but genes can pass alot on through generation which as been a known fact with members besides life in general, that's why doctor's keep regular checks on patients with their family history.
Also i was treated by one of the 6 top brain surgeons in the UK...all this as been confirmed plus i do know that all degrees of illness can come on naturaly without being linked to anything.
Lupus and epilepsy can become seperate issues besides being combined...i've had Lupus all my life for 44yrs and seizures 28yrs and suffered from a child with different issues.
Your friend does research which goes on in a good many countries...top surgeons and doctor's can't state these point of issues unless they want law suites galore thrown at them and regarding links for information on the internet which is surposed to help people...then google and other sites should be shut down.
Like i said i'm not frightening anyone or members...just stating facts which can happen with people.
siskiyousis said:
i only am going to point this out because i do not want people panicking in thinking that seizures are common in SLE...or even epilepsy is something you can get from lupus.
I sent your link to a good friend who has worked for MIT, Harvard and now Stanford on medical research for SLE , autoimmune diseases as well as arthritis.
He said this is one of those examples that can needlessly frighten people. Lupus and epilepsy are their own separate issues. He said this is good example of information out on internet that is flawed and needlessly frighten people.
Internet is great source for gathering information but we really need to be careful not to just believe anything we read. I go to places like Lupus foundation of America plus some technical journals that he directed me too. But in all honesty much of it is over my head...i check it out for actual information on how lupus has affected me such as kidney information.
Lupus foundation has place to go ask Experts..they say very clearly that epilepsy and lupus are two separate issues. That people who have lupus do not have epilepsy from their lupus.
I justs really want people to understand that SLE is like being diabetic...it is chronic condition but with right doctor and treatment you can live a fairly normal life. I do not want to scare people. This is type of topic one should have with rheum doctor or go to authentic sites like lupus foundation. It was one of few...think i found two back in early 80's that was out there for information on SLE. I use to have to go to hospital libraries and read for information.
So internet is great and know we all mean well and just want to help. Just not everything on internet is reliable source.
Hello Beverly,
Like you've stated i have confirmed letters from specialist's besides doctor's on my conditions..the only Lupus site i turn to is LWL ad that's to help members with what i've gone through and suffered besides knowledge on the conditions like yourself.
Love Terri xxx
Beverly L. said:
Yes you are so right ! The best way is to ask your doctors and get information from the LUPUS Foundation of America. That's were i've been getting my information since Feb. 2011....Beverly L.
Hi Tez, how are you doing ? Am okay just resting - the weather here is cold for 2-3 days and it very cold for me so am just resting and staying in the bed on the heating pad . LWL is a good site...Beverly L.
Hello Beverly,
Smashing to hear from you and i don't blame you just resting it does we all good...don't mention cold mate we had it at -3 and 2 last week it was freezing, we've got the rads on all day making no difference and at night i still pop and hot water bottle in with me, mind you it don't half help me hands.LOL
Well Bevrly i'm recovering from a cold that hit my chest and lungs bad...it's slowly moving but my right lung aches a fare bit, my legs with pain do ache besides cracking of my toes and ankles but i'll find out on the 30th of this month what's going on as the rheumo took x-rays last time.
I know as much as you that LWL is a brilliant site besides the members with it and you've all come dear to me.
Keep warm and takecare of yourself...Hugs Terri xxx
Beverly L. said:
Hi Tez, how are you doing ? Am okay just resting - the weather here is cold for 2-3 days and it very cold for me so am just resting and staying in the bed on the heating pad . LWL is a good site...Beverly L.
My rheumy told me that being on high doses of prednisone for a long time can cause to have physchosis which involves seizures, so I agree with Tez_20, lupus can difinitely lead to seizures, also remember lupus SLE attacks the organs in your body including the brain.
Tez_20 said:
Hello Scottieintx,
Thank you for your imput and i am pleased your sizures are'nt through your lupus.
Love Terri :) xxx
Scottieintx said:Hi,
I have Lupus and Epilepsy but they are not caused by each other. I do not have CNS lupus, so the seizures are not caused by that. I'm just one of the "lucky" people who happen to have to major diseases.
Hello Fighter,
I hope your doing ok mate as you've been through such alot...let me know when you can how your keeping as i've not heard off you in abit.
Love & kisses Terri xxx