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lovedbyHim
06-07-2011, 02:55 AM
I would really like to know if any of you experience, during a flair, mental confusion, anxity, depression, and even mild paranoia. Last Winter I had a bad flair and had these symptoms but was on a lot of lyrica at the time, so it was hard to tell if it was the meds or the lupus. It scared the crap out of me. What is even harder is that all day long I work in the mental health field and must be very alert and clear headed. I hope I never go through that again. I know this is a touchy subject. But it happened to me. If you are too uncomfortable expressing this openly, please will you send me a personal note? Also, what did you do to manage the symptoms? Thanks gang.

tgal
06-07-2011, 03:06 AM
Hi Loved,

This is a wonderful topic and the answer is yes, most of us do to some extent or another. On the lower end we have "brain fog" where many of us just get confused and our memory is bad. On the other end of that are ones of us that have CNS involvement (Central Nervous System). CNS involvement can cause paranoia, seizures and a host of other issues. So the answer to your question is yes, and it can range from very slight to severe.

There is a thread that was started and that we use for a chuckle and it is examples of all of things we do because of our fog. It can be found here (http://forum.wehavelupus.com/showthread.php?7214-You-Know-You-Have-Brain-Fog-When...&highlight=brainfog)

I can tell you that I have CNS involvement and when I am in a major flare like I have been for awhile now, I have to fight paranoia. I become a tad bit OCD (coming home to make sure the iron is turned off even though I checked it twice before I left) although nothing out of control. Remember that SLE is a difficult disease that can attack the organs and the brain is an organ. On top of that there is so much going on in our lives, so many medicines that I don't know of anyone with this disease that doesn't have some form of confusion or anxiety.

So to sum it up.. you are simply normal. Well, the new normal that we have come to know

lovedbyHim
06-07-2011, 05:08 AM
The new normal. I like that. My Rhumey answered a question i had, "What can I expect?" and her reply was, "Expect that you will never be the person you were before. " I cried and then have tried to accept it. Thank you so much. I read about the cns involvement, but never met anyone else who had it happen, so I thought it was rare. I was jumping out of my skin with anxiety and unrealistic fears. On a good note, I now have a greater understanding of how my clients feel when they are not doing well. This just makes me want to love on them even more.Thanks again for your honesty. I hope this helps others who read your reply ((hugs)).

giggle
06-07-2011, 05:51 AM
Hi Loved,

I have always had brain fog and memory difficulty. But recently I got very scared when I got tremors and devastating cognitive dysfunction : (
Its getting to the point now where I am really recognizing some serious mental problems and this is scaring me even more. I guess you would call it paranoia... I see things, think something has happened when it hasnt. For example, I will swear I see lightening, or that something has walked past in the corner of my vision. Its like a part of my brain knows it isnt real, but another part accepts it as fact. I forget where I am or what I am doing. Or go to do or say something completely illogical. Sometimes, I can not speak, I have to stop myself and try again. My partner and I laugh it off, but in reality, deep down I am terrified. Its getting worse... and where will I be in 10 more years?

I wish there was something that could stop this... but right now, I would settle for something that will slow the effects. My doctor says I need to be patient, nothing showed on my CT or MRI... so we need to find the problem through elimination.
next tuesday I have a psych appointment to help deal with what is happening to me and hopefully, according to my GP, learn how to remain calm in the meantime until we can begin treatment. I am a reasonably proud and stubborn person and going to a psych is a bit of a blow to the ego. I dont like people to think I am sick... even less so to think I am having mental health issues.

In my mind, dying of an incurable disease is preferable to any kind of dementia or progressive cognitive dysfunction that may render me as a child : ( But here I am, possibly experiencing the early effects of my worst fear. Even more so, I can't believe I have uttered the thought to anyone but myself and my GP. I still havent had the guts to speak to my partner.

giggle
06-07-2011, 05:58 AM
tgal... I can relate to the OCD thing! My hand writing became very bad for a while there, it is better now... but I developed a terrible OCD habit... Im a receptionist and at work I need to send out bunches of letters, all hand written address. I rewrite every single envelope at least three times, screwing up the first one, get out another finish it and then screw it up and get another... sometimes I have made a genuine mistake, but about 90% of the time there is no real reason to do it.
Also, when I can feel a terrible episode of cognitive difficulty coming on, I will get really paranoid about what I am doing. I may every few seconds check on something I just did to make sure I did it. Very time consuming.

kim,l
06-07-2011, 06:26 AM
yes i have experienced memory loss such as brain fog but i also had severe flair which made me forget my childrens names and the fact that my father was dead this was extreme flair and i have also suffered depression this disease can manifest it self in different ways for all of us

ruziska
06-07-2011, 09:48 AM
I'm in with you all on this one. My regular doc wanted to put me on antidepressants because I appeared "depressed". I told her to get me out of the flare and I wouldn't be depressed! I did eventually try antidepressants just to see if they would do anything positive for me. Nope. Just made my restless leg syndrome worse. I'm learning to deal with Lupus, not medicate myself into oblivion. Paranoia? Nope, but I do have anxiety attacks now and again, when I am flaring. I could medicate them away but for me, I've decided to face them, deal with them and live with them. I, and this is strictly my personal way of dealing with it, is to treat lupus like a living breathing entity. Like my siamese twin per se. Like a room mate. It is working for me. Lupus is my life, my life is lupus. Just like my husband and children are my life. I deal with my lupus like I deal with my family and like family, my lupus and I have our good days and our bad days. May sound corny, but it is what is working for me (at the moment at least).

lovedbyHim
06-07-2011, 12:02 PM
Hi Giggle, What a blessing this was for me! Thank you so much! Yes I heard a man say, "Hey." when I was entering my house at night. I heard bells ringing and music that was not there. I started reading all I could and then it just lifted and never returned. I read that anti psychotics can help. Believe me if it happens again I will be at a psychiatrists office. I also read that steroids in higher doses can do that.

Yes it seems it's always better to have a medical problem than a mental health issue. In my field of work it is called stigma. My folks are treated really badly in the ER why they have a physical problem because noone believes them. Imagine that?

Thank you again for your forthright responce. I love ya for it!!!

lovedbyHim
06-07-2011, 12:04 PM
Thanks tgal this was perfect for what I needed! ((hugs))

lovedbyHim
06-07-2011, 12:07 PM
Bless you for your honesty kim,l !

ritzbit
06-07-2011, 01:27 PM
I've had mental issues for years. I really think it was probably one of my first real signs something was going on with me when I was in middle school. Majorly depressed and crazy anxiety, with basically no reason. Some days were good some were bad and because it was so up and down up and down I was convinced I was bipolar. Went to therapy. And now after my episode recently Im back at my psycho again. Im hoping to learn how to better manage my stress because it makes everything worse.


Lupus is my life, my life is lupus. Just like my husband and children are my life. I deal with my lupus like I deal with my family and like family, my lupus and I have our good days and our bad days. May sound corny, but it is what is working for me (at the moment at least).

I was thinking about this the other day. I was thinking about what my friend with a baby has to do and lupus is like my baby. It keeps me up all night, I have to take it to the doctor, I have to feed it (pills lol), And I can sadly never get rid of it no matter how much I dislike it lol

steve.b
06-07-2011, 11:09 PM
i also had memory and cognative problems.
i found stress was a very big trigger.

i now rent on a quiet farm, no longer work, and have no money problems - i have no money to worry about.

at its worse, my mind would switch off, (or pause), every so often.
very scarey when you are driving a truck down the freeway.
i would stop mid sentance, and continue a few seconds later, as if nothing happenned.
and headaches..........................

it is much better now, without the stress.
not cured, just better.

giggle
06-07-2011, 11:22 PM
Loved... I am glad it helped : ) it is surprising how much of a difference it makes to know you aren't the only one. Its as scary as heck, once being a rather bright person with a clear head and strong logical streak. I used to have an IQ of 150... I wonder what it is now LOL

Steve... thats how I started out and thats about how I thought it would be forever. I never in my wildest dreams imagined it would get worse. But I havent been able to take the steps towards minimising my stress just yet. I dont think I am as strong as you, because I can not pull myself away from work, it is like a safety blanket.

Love your comment on having no money problems because you have no money to worry about, classic.

lovedbyHim
06-08-2011, 03:23 AM
I had a farm and was doing great for awhile. Goats, chickens, etc. I'm so happy for you! Yes stress is worse than UV for me. Have a wonderful time on your farm!

steve.b
06-08-2011, 04:46 AM
i actually only rent a house and a few paddocks.
the farm works around us, so we see the cattle atc. without the work.
we have a few (11) horses. cats dogs and chooks
life is as stress free as we can make it.

i live in the valley of the local hills.
green all year round, a big lake, lovely views and a beautiful seasonal waterfall.

life is good !!!!!!!!!!!!!!!!!!!!!!!!!

Peridot20_Gem
06-08-2011, 06:52 AM
I would really like to know if any of you experience, during a flair, mental confusion, anxity, depression, and even mild paranoia. Last Winter I had a bad flair and had these symptoms but was on a lot of lyrica at the time, so it was hard to tell if it was the meds or the lupus. It scared the crap out of me. What is even harder is that all day long I work in the mental health field and must be very alert and clear headed. I hope I never go through that again. I know this is a touchy subject. But it happened to me. If you are too uncomfortable expressing this openly, please will you send me a personal note? Also, what did you do to manage the symptoms? Thanks gang.
Hello LovedbyHim,

I don't have to have a flaire to get these condition's besides, as i'm a manic depressive and suffer with two forms of epilepsy and the one causes mental confusion and paranoia and i've been like that for years and my epilepsy only came on through Lupus.

You do have to be clear headed to be working in mental health as i've been under several different teams over the years.

I don't think this is a touchy subject and besides what i have, when the depression comes on that does give a boat load extra to cope with.

The only way i was managed was locked in asylums and drugged up well and that's how my life is now still drugged up but no asylums thank goodness, as being in those places used to send me out of my mind and being on supervision constantley.

tgal
06-08-2011, 10:33 AM
\. I used to have an IQ of 150... I wonder what it is now LOL



You don't want to know. As I became more and more ill and it became more and more apparent that this disease had infected my brain the doctors began sending me for tests. Like you my IQ score had been very high. While there was a drop at my first test when I took the last neuro pych exam there was a drop of 40 points. I will say that putting a number on my current IQ was one of harder times during this journey.

lovedbyHim
06-08-2011, 10:42 AM
OKay here's the hard part for me. My IQ was barely above 130. Now I am so ADD I must structure my day so I can remember my meds! I am counting on you bright folks to make sure I remember my name!

Gosh I am about to be relocated to better help folks in the mountains where GPS gets lost. Won't this be fun. I will need to stop and ask the Amish, "Can you tell me where Wolk Holler is?" LOL

Nonna
06-08-2011, 10:51 AM
OKay here's the hard part for me. My IQ was barely above 130. Now I am so ADD I must structure my day so I can remember my meds! I am counting on you bright folks to make sure I remember my name!

Gosh I am about to be relocated to better help folks in the mountains where GPS gets lost. Won't this be fun. I will need to stop and ask the Amish, "Can you tell me where Wolk Holler is?" LOL


I have had to set reminders in my itouch and carry it with me constantly to remember my meds and appointments or everything else. So when you asked the Amish man about Wolk Holler asked him why....... "the hurrieder I go the behinder I get" .............. my family is from Lancaster County.

lovedbyHim
06-08-2011, 12:10 PM
Ahahahaha...Love it Nonna! I love Amish country and i presently live near many. I buy all my produce and flowers from them. Each morning I see about 20-30 Amish, many children going to school or in the fields. They help me to remember the good stuff. The other day I saw 4 little Amish girls playing in their bare feet. I often think I wish I could just farm like them (smile). Do you know any lonely farmers in PA. Just kidding...just kidding. Thanks for the giggle. I am now planning to use my droid alarm for reminders.

serand4
06-08-2011, 03:52 PM
I can't believe I found this thread just when I needed it!! The man saying "hey!" happened last night. Things like ghosts seem to be just out of sight (I know they're not there). I told several staff people in the hospital this last stay that I see little groups of three bugs on my hands on and off through the days or tiny drops of water. And paranoia! I forget so much, I never know if people are messing with me when I remember something differently or if I'm genuinely right. I'm rarely right. I feel like I'm in a go cart at the top the tallest hill in San Franscico on my way down! Between my chemestry changing (at least some numbers are changing!), my appetite disappearing, and fun little episodes like believing I still live with my parents (I've been in my own home for 20 years), I'm destined for assisted care far sooner than later!! Thank you for starting this topic. I don't want anyone to experience this but I thank the Lord I'm not alone!

tgal
06-08-2011, 04:20 PM
Just remember everyone. Just because it may be coming from the Lupus that does not mean that it shouldn't be dealt with by medical professionals. I get seizures from Lupus but I go to the doctor to help stop them. Same can be said about this

lovedbyHim
06-08-2011, 07:42 PM
Hello serand, I have read lots concerning lupus psychosis and they say it can be treated. My rheumy at the time it happened to me, just looked at me oddly and said to see a psychiatrist if it continued. Then it lifted. If it happens to me again you can bet I will see one. I know certain meds can cause it too. Severe depression can cause it. Menapause can too. Gosh, life can cause it! I hope you call your doctor about this.

Please try not to think too far ahead and fear assisted living as end result. Gosh there are thousands of psych meds out there. I have helped catatonic people stay in their homes.

Send me a personal message if you want to talk more. I would be glad to talk more until this lifts for you ((hugs)).

tgal
06-08-2011, 09:28 PM
Loved, the "try not to think too are ahead comment" is absolutely correct. With the advances in medicines we have no idea where we will be down the road. As most have heard me say (over and over I know) there is no need to "borrow trouble". We have enough to deal with day to day without adding on some that may never come to pass!

steve.b
06-08-2011, 09:50 PM
there was a thread on here a little while ago, telling how researches mapping the brain, found that stress caused brain fog. remove the stress and the fog clears.

Linda From Australia
06-09-2011, 02:30 AM
Ok Steve, please can I come and move in with your family on your paradise farm. You said there is no stress, and after today - I NEED SOMEWHERE TO HIDE!!!

lovedbyHim
06-09-2011, 02:59 AM
Can I come too??? I'm great with animals. I can even give injections! we can go for hikes and breath fresh air!

serand4
06-14-2011, 05:48 PM
Wow - reading this is like grabbing my entire last week and putting it into words!! It's almost frighteningly too familiar. The man's voice came at me in the middle of the night and I was entirely unable to figure out how to find a light or door or even figure out if I was at my home or my parents' home to get out of the room. I finally calmed down enough to get a light on and realize it was just a hallucination. I've had the singing and the bells but at night when I wake up suddenly, I'll be confused as to whether I'm an adult or child and if I live in my own home or my parent's. I get straightened out quickly but I HATE feeling so out of control.

I met with my primary care physician as a follow up to my recent hospital stay (where I had numerous hallucinations) and kind of as an after thought, I mentioned the things I'd seen. He explained the CNS had to do with my steriod levels. I did quite understand it all but I felt a little less crazy. And reading all the things that happen to others on our board that also happen to me gives me a lot of peace. It's always nice to know you're not alone.

Take care all, you're in my prayers!

lovedbyHim
06-15-2011, 02:23 AM
Hi serand, oh yes it is nice. I am so grateful others validate my experiences. This is a hard rough road sometimes. It's nice to know we are not alone on it.

Peridot20_Gem
06-15-2011, 09:17 AM
Can I come too??? I'm great with animals. I can even give injections! we can go for hikes and breath fresh air!Tammy, we'd both be ok on steve's farm where the jabbing is concerned done myself enough over the years.lol

lovedbyHim
06-15-2011, 09:41 AM
Well if you can jab yourself you can jab an animal. I kind of miss it. My kids thought I enjoyed treating the animals just a little to much. Hmmmm?

kim,l
06-18-2011, 08:51 PM
many a time i have had dreams of packing up and running away from the stress unfortunetly they invented mobile phones so it always finds me i know this is terrible but i found the only time i was less stressed was when i phycosis with severe flare because i could not remember the things that caused me stress i often tell my husband stephen how nice it would be if they locked me up in the mental ward at least i would get some rest and no mobile phones stephen said as long as they could give us a double room that would be our dream getaway, brain fog has its perks sometimes hugs kim l

steve.b
06-18-2011, 09:10 PM
another good thing about our farm ..........................

we live in the shadow of hills.
no mobile phone without plugging it into the aerial.
no tv without satalite. (i have not bought one)
no internet without satalite. (the government bought it for me)

less stress, more enjoyment

lovedbyHim
06-19-2011, 02:08 AM
I used to leave my phone in the house and go up in the pasture and sit with my goats. They would jump all over me and nibble my ears. It was bliss! As for TV I have not had one in 6 yrs. My daughters call me the Amish Nun because I read the bible and don't have TV. It is a good way to live and it keeps me sane for my work in mental health. It also keeps me from losing hope when I feel so sick. For the I MISS MY GOATS! Goal, to someday get another little farm and retire from work and milk my goats. BLISS.

Peridot20_Gem
06-19-2011, 05:37 PM
Well Tammy,

As long as you live for your dream mate that will keep you going alone.

My hubby watches the Tele but as soon as he moves out the room the volume goes low for me to read and concentrate because to much noise and i get no where, I just adore my reading and it's just totally relaxing. xxx

lovedbyHim
06-19-2011, 05:46 PM
Oh my books. How I love to read. I get lost in them. So glad you do to. Thanks for encouraging me concerning my goats. I lived on a farm with a steep hill up to the barn. I carried water every day and night up that hill. In the winter an ice storm came and I fell and slid down that hill! I was sore for quite some time. Lol

Peridot20_Gem
06-19-2011, 05:57 PM
Actually people like yourself and other member's who have owned farms are so lucky seeing a different experience to someone such as myself, born in a small locksmith town and everywhere surrounded by factories shut down and old properties but since we've moved here and more in the country, it's so peaceful and such a luxury.

Oh i do love my books from the 1800 to 1940s when the wars was on but they do have to have love story's involved and the poor library over the road i've out done them. lol

smartgirlsnow
09-11-2012, 04:23 PM
Thank you everyone for your comments. I realize now the confusion, fog, inability to speak at times, forgetting my beloved grandchildren's names, forgetting briefly how to stop at a 4 way stop intersection, hearing a loud noise that wasn't there or a flash of light, I have even screamed when my son walked in the room because I feel so jumpy, my hands are so trembly right now it is difficult to type. To hear that others are suffering these sypmtoms strange as it may sound was reassuring to me that I am not "mental" I am sick and that is a big difference. When these "fog" flaires first started I would self medicate with alcohol I was so scared I couldn't think or talk or most importantly express what was happening inside me.
To manage as best I can I have to write copious lists--I will forget everything if I don't. I take deep breaths and think to myself this to shall pass..eventually. And then I wait and hope it lifts soon. I eat healthy and always have and I wish I could slay I sleep but when this type of flaire is in progress I really don't get much rest. But just knowing others are suffering with this lets me know I am not alone.
Cindy