ever feel like you are going crazy??

[Spriggy]

I am wondering if anyone else battles with feeling like they could be losing their mind??

I don't know how to describe it, but there are times I find that I am having to absolutely convince myself that I am not going crazy. My mind just feels strange- I feel "strange." It's too weird to describe. Thankfully it doesn't happen all the time.

I just wonder if it's associated with lupus- this started the same time as all my other symptoms.

I don't hallucinate or hear voices or anything, I just feel like my mind won't stop racing and like my head is heavy or something (yeah I know, it's strange).

I'd just feel better if somebody else felt this way too-- misery does love company, ya know? LOL

[alobreto]

Hi, Spriggy! ;)
I can't say that I've felt the way you describe, but I have wondered from time-to-time if my faculties are all intact! :unsure:

With this diagnosis, we experience such strange sensations it really is no wonder we might begin to question our sanity. :blink:

I'm sorry :( you're not feeling exactly right and hope that it doesn't last too long or come back too often!

Sending gentle hugs your way: :hugbetter:
Angela :flowers:

[busylizzie]

Hi Spriggy :wave:

Don't worry, you're not on your own! :wacko: Apart from the 'brain fog' that most of us get, I find my head 'races' during the night. Hard to describe but it's driving me round the bend! :cry: Every morning I feel as if it's been working overtime all night and I wake up with a mega headache so here I am to keep you company!! :shake:

Take care :flowers:

[Spriggy]

That's exactly how I Feel.. I go from a weird "head fog" to where I feel like my brain is on overdrive and won't slow down or stop racing.

It's almost as if I can't find a steady balance between the two. When I'm in the head fog, I find myself drinking down coffee just to feel "real and alive." Then, when I'm in the racey stage, I am trying to calm myself down.

It's just bizarre and it's hard to describe but you put it well. It's nice to know I'm not alone! Thanks for responding.

[busylizzie]

You're welcome! :D It's always reassuring to know we're not going round the bend and that these symptoms really do exist. :wacko:

Take care
:flowers: :flowers:

[Melody2]

Hi Spriggy,

I know exactly what you're talking about concerning the 'heavy' head feeling. Ugh, I HATE that! It can get so heavy and I feel like I'm living but not really a part of the world or removed or something. It's so horrible and it makes me feel like I'm going crazy or something. I don't get a racing mind, but sometimes I find my thoughts get a little out of control and I am a little worried or obsessive which is not exactly normal. The heavy feeling in my head can last for a couple of weeks sometimes when it's at it's worst. I just recently found out from my lupus specialist that this could possibly be a migraine phenomenon without the pain which can occur. That would explain a lot, especially when it 'lifts.' But yeah, you're definitely not alone!

Take care,
Melody :luck:

[skardykat]

Hey Spriggy, when this happens to me I call it "feeling beside myself". Like I'm not altogether --whatever we call it, as you can see from the other posts, you are not alone. Guess it is just harder because you can't put your finger on it. ;)

[Spriggy]

Yes, that's exactly the feeling I feel. Almost like I'm not real or not in my own skin, or floating or something.

It's really weird. I hate it... It's not even from medication, it just hits me out of nowhere. I have to convince myself that I'm REALLY existing and here.

It's just too weird to describe, but it's definitely a "heavy, floatey, spacey" head kind of feeling.

I guess some people might like that feeling ( my sister with drug problems actually pays to feel this!) but I sure don't.

I like having a clear mind!

Well, it must be all a part of this lupus deal- I was almost thinking it was something different.

Thanks for sharing, it really does make me feel better knowing I'm not alone.

[calsbabe]

:huh: I know how you feel too,It s almost like your here but kinda like you r in a dream,like your functioning ,but are outside your body ,this is hardto explain ,but its like your head is full of fog .i have days like that all the time,sorry for what your going thru ,things will get better with time, :wave:

[Melody2]

Calsbabe said it best, like you're in a dream of sorts. I just wanted to let you know, Spriggy, that I'm not on any meds that could be causing this either...I have only been prescribed low dose aspirin for my antiphospholipid antibodies, because there isn't anything at the moment that my rheumy feels would really help my particular CNS symptoms. I'm glad you started this thread because I was feeling quite upset about this feeling myself, so it has provided me some comfort to hear others describe what was upsetting me so much. It's nice to know you're not alone! I have never done recreational drugs, but I can't imagine it would feel exactly like this feeling, it's far too unpleasant for me to think anyone would want to seek out feeling like this! I don't imagine the dream like state drugs allegedly elicit is the same quality as this. I enjoy my dreams more than feeling like I'm in a dream when awake! :wacko:

Melody :luck:

[lin]

well i see lots of us in same boat, then,i started to feel odd last year, it was horrible, kept going dr's, he wrote off to rheumy, cut long story short, she took notse from me, had blood test done sent me for mri, and aslo started me on high does of steriods, took 2 weeks to kick in, but boy, it started to go away, it really scared me, the dizziness and the forgetting things, even my own car, i got in, i thought was someone else's didnt look like mine, i couldnt write spell, i wakled over to one side, i felt drunk all time, nice i hear you say it was horrible i lost weight couldt eat, i have now staterd on immunosuppressants, so hope this will hepl early days i know, but will try anything not to have it back again, the mri scan did show white spots, had to go again.

so please we are all with you never feel alone (((((HUGS)))))) Lin xx

[Jen79]

That is strange i do that every night of my life, my brain races and I can quit thinking. Thought ut was only me with the weird problem. My body is tired but brain never shuts down seems like. Wonder if it is a lupie thing. :lol:

[flowergarden]

I used to be a morning person. Pop out of bed first thing, going full speed. Since these A-I diseases hit, it can take me two hours to get up in the morning, and then I go slowly from there.

By the time evening comes I'm waking up and able to move better. That's when my mind works best. Of course, then it's time to go to bed, and my mind isn't ready. I can lie there for hours, waiting for sleep to come. Often, it comes in the early hours of the morning, and I have to get up in 4-5 hours. That makes getting up extremely difficult the next morning, so I take a nap midday. That's the only time sleep comes easily.

It's nice to know I have company, but sorry to hear others are going through this too. :yawn: :asleep: :flowers:

[rwb200]

I think at times everyone feels this way.
I know my wife does from time to time and I do as well and don't have Lupus.

Stress can cause many things to happen with the mind and it is not like anyone here does not have some all the time and a little more at others.

At times the mind just does not want to shutdown at night and that can cause many problems with thinking both that night and the next day.

I work with a guy who can put me in a brain fog or at least make my whole head feel numb where I have no clue what anyone is saying. Maybe it is just boredom over his three hour meetings.

If you recognize the fact that you have this from time to time I doubt you are having a sanity problem. I would think the danger would be more when you are anyone of these ways and have no clue there is a problem.

Still may be a good thing to mention it to your doctors. They may want to look closer at it to see that you are not having problems that they have not recognized as of yet.

[shopgirlsw]

Me to, Cals said it best, that is what it feels like for me. When pms strikes it is sooo much worse and a mean person comes out of me that is not me. I don't like it.

Hope you feel better soon.

I have found that putting ice packs at the base of my neck/head area does help me a little.

Sincerely,

Shopgirlsw
:love:

[Bobby]

Ditto:everyone

You have no idea of the relief I get from you guys.

I was on the verge of getting a white jacket with long long sleeves and heading off to the 'quiet' hospital.

Flowergarden, get outa my head. We must be sharing the same body because you've just described my day in perfect detail.

If I actually get 4 hours sleep them I'm having a brilliant nights rest.

I'm now off work sick for 3 months and my gp seems convinced that I should not be at work at all as it's so highly stressed. I'm doing everything she says by the book cos I need to go back to work even if part time.

I find it difficult to believe anyone would pay to induce the kind of head fog I get.

Mind you, I have been complaining of head fog even before the diagnosis. :huh:

[flowergarden]

Another thing here: for quite a while I dealt with what professionals call "depersonalization". It's where I felt like I was standing beside myself, not fulliy participating in my body's actions. This still happens occasionally, especially when the fog gets so bad that I have a hard time functioning. When all this happens I get panicky, sure I'm totally losing my mind. :wacko:

[drea]

Hello to the person talking about their mind and lupus,
I have lupus on my brain and i have the same symptoms you have and have for a while now(diagnosed in jan 05) but i think i have had it for many years ,but wasn't diagnosed.
I also had(june) 4 rituxan treatments and all my symptoms went away for the first time in many years.
I have had seziures(just 3 grand mal) and many focal type, but the worst my brain feels dosen't last(thank goodness) and i try to look at it as just interesting symptoms and not at all like going crazy(just different outlook and i find myself curious)

the brain fog seems related and good sleep dosen't happen anymore.I relate to everything that has been said.

I wondered if anyone else has had lupus this way and what drugs they gave them?
My dr hasn't given me any drugs for lupus or offered them?

I also have leukemia and the rituxan i was given was for this, but it worked only for the lupus?

I want to thank everyone out there as i haven't anyone to talk with,
any thought would be appreciated as i live very isolated and have no one to talk to about this, as my husband can't really handle talking about these details as it makes him too sad.
thanks to all
drea

[flowergarden]

Drea, My goodness! You are having such a difficult time!

I have neuropsych UCTD, and have had Cytoxan and Imuran treatments. They haven't done much, if anything. The rest of the drugs are typical lupus ones: Plaquenil, pred., etc.

Your mention of Rituxan may get some responses. There's a lot of interest here in the use of the drug for lupus.

As you probably know, Rituxan gets rid of B cells. That's why it is thought to help with lupus. But the scientific studies have not been completed.

It is really good to hear it helped with your lupus. Did it do anything for your leukemia? Please let us know.

And also I hope you keep coming back here. I find it really important to have people in my life who understand and listen. And then I hope at times I can help others, too. :flowers:

[blueisis]

Hi all, Flowergarden, I totally agree with you; at the moment, I sleep all day, way up have dinner and then am raring to go; this is so strange to me; I used to be a morning person!

[Pixii]

Yup.. the duh-sessions, I call em brain farts.. the racing mind usually is like association of a fever... Even if you don't have a fever, it's the same mind wandering you get when you do.. All normal for us guys.. :wacko:

When it happens.. just remember that it's the Lupus and go from there.. that helps to keep your sanity and wits about you.. And if you have memory problems.. get out the sticky notes, and either you attach them to the places you need to remember things.. or have your spouse do it for you.. :P

I live for sticky notes... hehehe :woohoo:

[drea]

Hello and thank you to everyone that responded to my email

I am really isolated with no one to talk to about Lupus or the C.L.L.
I live in middle of the woods in the N.M. mountains and haven't any friends . I have a wonderfull husband, but it makes him too sad to talk about all these body problems and all of you are so open.I have already learned so much from reading all your posts as i also find reading difficult and you replys are so clear.

The rutuxin didn't help the C.L.L. as far as i know now( I go back to MDAnderson july 26 for a bone marrow to see if it worked and if it did i get another round on infusions.
I was so surprised to find it helped so much for the Lupus and now as i said before i feel better than i have in many years ,as it took away "all" the aches and pains.I also had no side effects at all.

I am still looseing hair for over 1 year now and don't know why,
and my doctor can't give me any reasons. Is this normal for everyone with Lupus?

Thank you for recommending NM doctors as i am in need as my santa fe Dr(who is very nice) isn't really helping me in any way, as he is older and wants to retire soon so i think he isn't too focused.
again thank you for careing and being so kind
warm regards to all
Drea

[drea]

Melody2,
can you tell me more about the migranes without the pain?

I was told by a neurologist that i have that , but he didn't say more.He wanted me to do a 48 hour eeg, but there isn't anyone in the santa fe area that does them.
I live 3 hours from albuquerque so it is hard to get there as my husband dosen't drive and i am not suppose to for 6 months.

I also can't ever sleep more than 3 or 4 hours and i used to be a great sleeper. My brain races along in a way thats new to me ,as i haven't any issues that usually keep me thinking and i am a meditator(fear at times)I wake up so tired and still can't nap and i exercise everyday (walking)

I am so relieved to hear this is normal lupus symptoms
thank you
drea

[Pixii]

yeah love.. losing yer hair is part of Lupus.. when the flares stop or you go into remission on it.. the hair will grow back.. it just takes time though.. you can try using Seabreeze (it's an astringent for the skin.. and you can pick it up at any drug store or Walmart or Kmart) it seems to help with the rash that may be associated with Lupus and hair loss.. and it feels real good too on your scalp.. that is just one of the things you can use.. there are bunches of others ... it you look in the area on here for feeling good or looking good.. I think that is it.. I believe there are other listings of what you can use for the hair loss.

I understand how you feel about talking with your hubby about your illnesses.. it is hard... it's real hard for me because my husband knows I am dying.. for I'm in the final stages of what damage Lupus has done.. that is one of the main reasons I am on this board with all of you.. your love and support gets me through the knowing that I am not going to be around very much longer to see my grand-children grow and have children of their own.. or be here with my husband and kids to help them through the ruff spots in life.. but being able to come here and talk to you all of how I feel every day, is so comforting to me.. and for that I am thankful.. :)

[karol]

:wave: spriggy, i have been feeling this way.. imy job is pretty demanding. i have to go into surgery with doctor and assist in implants of pacemaker and defibrillators. im a sales rep for a company called medtronic.. anyway latley i have really noticed this feeling.. the other day i had to go out of town to see a pt. i got in my car and went to the wrong town.. then when i realized i was headed the wrong way i felt confused, almost like i had a panic attack.. i caleed onstar in my car to get direction.. THANK GOD FOR ONSTAR...i have never experienced this before.. sometimes i just feel scarred like impending doom..i think im having panic attacks.. my head races at night..my rheumy gave me sllep pill called lunesta.. it works great. i woory though about taking so many medications.. i wonder if this fog is caused by the interactions of all the medications im taking?anyway your not alone...

[Nell]

Hi,

I don't have SLE but come to this site due to concerns I have for my daughter.

I wanted to speak to the racing mind at night. I know that some people with SLE are prescibed a low dose of an anti-depressant from the amyltriptaline (sp?) family such as Immiprimine to help with sleep. There are numerous drug names in that family and they have all slipped my mind!! If your mind is active all night (as though you've been having a conversation all night :( ) and you are not entering into a deep sleep, your body isn't resting which may worsen the SLE. I know a low dose of one of these does wonders for some people's sleep. Just a thought.

All the best, Nell

[karol]

:D nell, thank you for ur reply.. my doc has perscribed amyltriptiline to me for sleep.. i recently am trying lunesta also.. it seems to have less side affects the next morning for me.. sleep is a really big issue with this disease..must rest and keep stress at a low.. god bless karol

[sparks]

:wave: Hi
i also get that feeling sometimes
brain fog and mind racing






linda :love: