TOTALY CONFUSED..... CAN SOMEONE GIVE ME INFO ON SEIZURES WITH SLE PLEASE.

[Hester]

hi all. ive got sle and raynauds. diagnosis confirmed yesterday. about 8 years ago i started a hell of a headache and with landing in hospital and clear rmi's and hell knows what they couldnt understand it. my left leg started dragging and the neurologist wrote it off as spycological. he sent me to the looney bin for a month. there i had about 6 shock therapys. the numbness went away but my short term memory as just gotten worse. can it be cause i had lupus already but they didnt pick it up? my rheumi said my tests indicates that ive had lupus for more than ten years. i would really like to go and try and kick this neurologists *ss!!!!! some doctors want to check the obvious and alot couldve been done earlier if they just beleived me. it makes me angry. my temper is realy violently short and i dnt know why. ive been reading alot since yeaterday and sooooo much of the symptoms everybody has ive experienced in the past couple of years. extreme tiredness, memory loss, speech problems, difficulty walking without looking drunk, but most of all what scares the heebie jeebys out of me is the seizures so many talk about..... please can anyone give me info on that, how it starts, feels and so on. please....

[Hidden]

Lupus Foundation of America is a good resource for information.

The link below is for nervous system involvement with SLE (includes information about seizures).

lupus.org/webmodules/webart...

FYI : Out of character uncontrolled violent temper can be a pharmaceutical side effect. It is a well known side effect of Plaquenil. As with all medications each individual reacts differently. Trial and error.

[nanny4]

Hi there,my daughter had about 8 plus ,what appeared to be seizures in a year,she would get stomach pains,then go hot and sweaty,end up on the toilet,or on the floor having a bowel movement,I would have to help her to a safe comfortable place,get a cold flannel,and a fan if possible,and it was as if she was going to pass out. for at least 20 mins until she cooled down and things passed.

She had a brain scan which showed nothing but 2 years on she was found to have swelling on the brain and spinal cord.It was thought that she possibly had m.s,cut as she became pregnant,she could not have to many scans.

Then the seizures stopped and the skin sores started,she was dxd with sle a few months ago,now she has been told her dx may change as her bloodshed are not showing the improvements expected considering all the meds she is on.

Steroids definatley help but she is now waiting to see another consultant.

Basically she had all those seizures which no one has ever been able to explain,now she has none,which is great! But who knows if they will ever return.

Hope you get some answers,Sandy.

[Sylve in reply to nanny4]

Hi there, I found ur post really interesting as what u described is exactly what I have been suffering from. Though I have always described the episodes as fainting. Please could you tell me what makes these episodes seizures? Sorry if it sounds like a silly question! Thanks for your time! Sylve

[nanny4 in reply to Sylve]

Hi there,my daughter doesn't actually faint,may have done on an occasion,but she losses control of her own body,legs,on an occasion bowels,she knew where she was but could not do anything but lay down until the episode was over,maybe to call it a seizure is confusing but to be honest,we don't really know what they were,when they were over,she would feel much better,but would feel physically drain for 48 hours.

Hope this helps,it confuses us as well.

Sandy

[Sylve in reply to nanny4]

Thanks Sandy, this has been really helpful. I've suffered exactly the same symptoms and in the end connected it to some of the foods I used to eat. I have since cut out a lot of foods with the help of the Lupus recovery diet book and I haven't had an episode for months now! Touch wood! I hope your daughter continues to not have any more of these! Thanks for your reply! Sylve

[Hidden in reply to Sylve]

There are no silly questions.

Link to Mayo Clinic Seizure Symptoms in answer to your question:

mayoclinic.com/health/epile...

Orthostatic hypo-tension (low BP upon standing from a seated position) is common as is Hypo-tension (low BP).

What are the symptoms of your 'fainting'? AM or PM? with movement? is there a change in your vision? are you dizzy or light headed? are you confused? stare off into space? lose time?

Best and easiest to check your BP to determine if your BP is too low.

It is possible your adrenal glands are not working up to speed.

Also possible that you are dehydrated and or require electrolytes to re-balance mineral content.

Be well. Carry on.

[Hester]

thanx so much sandy. every little bit helps. good luck and all the best for you guys. i am really scared that ill get seizures.

[MaryF in reply to Hester]

Hello, you need to have a look at Hughes Syndrome Foundation, who also have a forum on this platform of HealthUnlocked. As at times people have Hughes Syndrome as well as Lupus, a small group of us overlap. I am one of those, sometimes it is because your blood is too sticky and many doctors do not understand this condition: Mary F x

[katerowley]

ive had lupus 19 years and seizures about as long, first of all i wouldnt panic too much yet, there are over 300 forms of seizures, i have black out seizures every 3-6 months, but the more stressed people make me the more of them i have.

i've only really had one bad episode, where i lost control of everything woke up in a mess with blood pouring out my head and mouth where i hit a radiator and bit my tongue and mouth.

[Clairebear]

Hey Hester. So sorry to hear that you've had a tuff time getting diagnosed. I think i spoke to you yesterday about how i have suffered seizures. i had some in 2005 when i was really ill from a bad infection. Then some again in 2010 again the doctors think from an infection. The last one was two weeks ago but i was feeling fine at the time so it really scared me. Ive been to the hospital today and they have taken my bloods so I'm just waiting to hear from them, hopefully this afternoon. When talking to the doctor she said that you can have seizures for no one reason. Stressed, tired, infection, flare up. If you are still worried maybe you could go and have a chat with your gp or consultant. Try not to get yourself to stressed out. I know thats easy to say and hard to do as I'm off work myself at the mo suffering from panic attacks and depression. Take care and keep strong. Claire bear xx

[Hester]

thanx you all. i find more answers from you then anywhere else. i was a master stylist for 17 years and taught many people. i even worked for the Gary rohm group. he is internationally known. i miss my work. i try to stay calm. im freesing my ass of at night so my darling hubby took me this morning and bought me the most luxuries electric blanket that covers my whole king size bed. shame it was a small fortune but he said he would pay and do anything to make thing more comfertable. he is my gaurdian angel and my solid rock. i wouldnt have survived this without him.. i started my meds this morning and it makes me so nausious. i drank some chocolate milk, and it helped. i got the hint from someone. have a awsome day everyone.

[millyrose7]

Hi i have just read all the comments about seizures and the fact that your really scared i just want to make you aware i suffered seizures for ten years and i was having a between 10 to 20 a day i was also taking anticonvulsant med approx 15 a day in 1990 i was told the drugs had caused the fits if i can help anyone i will just send me message i survived all this so try not to be scared i know it difficult .

[a_Scot]

[quote=" Hester"] ... it makes me angry. my temper is realy violently short and i dnt know why. [/quote]

You should be justifiably livid at the mistreatment you have suffered at the hands of neurologists..

However if you get very angry at the slightest annoyance it could be a symptom of brain involvement called "emotional incontinence" ... en.wikipedia.org/wiki/Emoti... which can make people inappropriately very angry, ( although it's not limited to aggression : all emotions are easily evoked, e.g. laughter , crying ). The seizure medicine carbamazepine is also used to treat emotional incontinence.