Beyond brain fog

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/10/2007 6:41 AM (GMT -7)   
Like a lot of you here I have, what I call the "normal" brain fog so many of us experience with lupus.  I consider the normal stuff as not remembering some things I've said or what others have said, having to make lots of lists and writing everything down and constantly misplacing things and also mxing my words up.
 
During this last rough spot I've been going through my brain issues seem a little different.  There are times I just don't feel like myself and I seem super sensitive to stimulus around me.  Like yesterday the tv was on and the kids were playing in the same room and my brain felt completely overwhelmed to the point that I thought my head would pop off.  I could barely handle any kind of noise or anything around me.  I also found myself being very irritable.  When I say I don't feel like myself, I feel like I'm in there somewhere but I'm somehow removed and have to push through all kinds of thick goo in my head.  I don't really know how to describe it, but I hate feeling this way.  The other time I remember feeling this way was when my symptoms first began but I can't remember what helped it, I just remember that it got a little better after a while.  I also feel like I've got a low level headache most of the time.
 
Has anyone else gone through this?  Was there anything that helped?  I'm just wonering if this is part of a little flare I'm going through.  I think I finally made the realization that I seriously need to rest more, especially if I ever want to taper my prednisone.  I think I keep trying to live life like a normal healthy person and it just sets me farther and farther back.  I'm going to set aside rest time everyday, as much as I hate it, but I need to if I want to start feeling better again.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 9/10/2007 6:52 AM (GMT -7)   
Hippi,

I just responded to your other recent post and expressed how concerned about you I am. Have you ever had any CNS involvement? You don't have to feel like you just have to tolerate all of this and keep suffering because there may be something your rheumy can do for you. I've decided not to even think about tapering till I see my rheumy and she gives me something to help me as I flare. Of course that's what cellcept was doing for me and it worked wonders. I think that if I had been able to stay on 2,000 mg a day I would have successfully tapered all the way down on my prednisone. I'm not going to stop till I find something else that works that well for me.

Hang in there.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


ladybug44r
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Date Joined Jul 2006
Total Posts : 831
   Posted 9/10/2007 7:46 AM (GMT -7)   
Hippi I go through that even though my test results came back norm for Lupus.

I watch children in my home and there are times I'll find something quiet for them to do, we have learning channel on all the time and I'll turn TV off just for quiet tome. Right now they are napping and I have quiet music on for them to sleep by.

Last night I was walking cross the floor and got really dizzy and had to tell my son to stop talking so I could get my balance back with no noise.

I too mess up on words. Saturday I was at a corn hole tournment and went to tell this big wig dr. that my son had placed fliers at a Sports Bar and stupid me said Sports bra, I told my son how stupid I was and he said mom you've done that before. I laughed even as I relaized what I had said to the DR. My b/f who was standing there next to me thought that I had lost my mind. Good thing though he knows it's from whatever has got hold of me.

Hope you get to feeling better. Lots of hugs and extra spoons.

Veronica

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/10/2007 7:55 AM (GMT -7)   
Hi Hippi . . . I sure don't know how to help . . . but I wanted to let you know that I was thinking of you.

Some hot tea for you sis!!

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 9/10/2007 8:27 AM (GMT -7)   
Hippi -

I have the same hyper-sensitivity to sound and light -- it comes and goes. I've had MRI, eyes checked, hearing checked -- it seems to me that it is part of what happens when I've been doing too much. I've never been able to figure out what the "too much" is that I've been doing, but I know it means I need to slow down. Make sure I'm eating good stuff at regular times, sleeping enough, resting a couple of hours a day -- maybe a laydown late morning and another late afternoon. Times when that doesn't solve it I bump my pred a couple of mg till it passes, and then for a couple of days afterward. That's the story for the regular intermittent version.

In the super supreme version, there was a while about 2 years ago when any kind of illogic or stress made me truly ballistic. Especially if it involved loud sounds, stupid behavior, unnecessary heat... stuff that just didn't have to happen. While not a yelling person (not sure if I could even scream if in danger), this made me go white with RAGE and it took everything I had to not scream and have a total cussing fit. (I don't cuss, either). This one we treated w/a jump from 10mg pred to 15mg pred -- and stayed on it for almost 2 full years.

For me, this didn't seem to be related to cognitive dysfunction or the less invasive version (brain fog) -- I had the normal forget stuff, forget words, but then it got really bad for me. I was so spacey and forgetful that I felt unsafe driving -- I couldn't concentrate long enough to make a sandwich without getting really tired and frustrated. I would forget the entire topic of conversation (while I was talking), not just a word in it. Instead of being able to do multiple things at once, even as simple as make the bed and listen to the radio -- it took all my brainpower to make the bed and I wanted to kill the radio. (My former profession required my fast thinking thru of several issues at once, this is/was a very significant change.) My rhuemy was about to have me go for cognitive testing, as we're both sure I lost quite a few IQ points -- but he didn't think of fit until *after* we'd started the Cellcept -- which is the miracle drug that brought back my brain.

My guess is that right now you need to rest more, pamper yourself a bit more, and go back to a normal dose of the pred. I think it's better to take 15 mg pred for several months and be functional than to feel like you do. That's what's worked fairly well for me.

Hope you find something you're comfortable with soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/10/2007 10:39 AM (GMT -7)   
Hippi,

I have had the EXACT symptoms you are describing. It really scared me. It felt just like you said, like I was in there somewhere, but I couldn't find me.

When I had headaches one on top of another for months, I would get the light, sound, smell sensitivity. I literally wore ear plugs ALL the time. I had the blinds pulled shut, and no one cooked because it effected me so horribly.

The other day, as I got into the truck to drive, the sound of the diesel engine made me almost vomit. It would get worse as the sound got louder.

I just drank ginger tea, drank coffee, wore ear plugs and lived in the dark.

I think the worst though was the fog. The feeling that I am awake somewhere behind my eyes, but can't see past the clouds. It is an eerie sensation to say the least. I would start to panic because I felt claustrophobic inside my own self!

You are always in my prayers Hippi, I hope you are feeling better soon.

Oh I wanted to ask took, have you ever had migraines? Those symptoms come with them too. My rheumie seems to think that some of my migraines are actually lupus headaches.

Praying for relief for you sweetie,
Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/10/2007 8:00 PM (GMT -7)   
Hi, Hippi. I've had those same type reactions to assorted "excited, loud" stimuli ever since my head injury in '94. I have just always believed that my brain couldn't handle that type stress anymore. To add to the low grade headache you mentioned, I will have pains at the base of my skull running down the back of my neck. There are times my brain just can't take anymore and there can be NO NOISE or anything for an extended period to allow me time to relax and tone down. I really don't know any answers for it other than to take a break and give your mind some rest. Hope you get something figured out. Considering the CNS involvement possibility with lupus, it may well be worth running by your rheumy. Take care and keep us updated.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/11/2007 6:56 AM (GMT -7)   
Pat, Veronica, Rosie, Lynnwood, Darlene, and Sharen, I read all of your responses yesterday and was overwhelmed with the support I felt from all of you. For some reason I got all teary and decided not to respond until today so I could get my thoughts together. First of all, your support is so wonderful and second of all, I can't tell you how much it means for people to understand what this is like when it is such a hard thing to explain. I tried hard to explain it to my husband, but it's almost impossible to explain it.

Throughout yesterday and after reading all of your responses, I took a lot of time to think and reflect about what has been going on in my life and why I might be struggling so much with my symptoms right now. All of your posts came at just the right time and Lynnwood, I felt like everything you described is exactly what I have been going through and the things you said especially made me take a long hard look at what might be going on.

I realized that when I started taking prednisone last year and felt so much better, I kind of went full force into life and made up for a lot of time whereI was too sick to do much of anything. It worked okay for a while, but when I started getting worn out, I didn't slow down and listen to my body, instead I became angry at my disease and rebelled against it. This past summer, I especially tried to push through my illness and I rarely rested. I wanted my kids to have a great summer and they did, but I have gradually gotten sicker. I realize now that I was trying to live my life like a healthy person and it was making me sicker.

After a lot of soul searching, I feel like something clicked and I have finally accepted my illness (at least for now). Through that acceptance I realize that in order to feel better and to be able to function and have better health, I need to incorperate rest into everyday instead of fighting it. For some reason I feel calm and peaceful about this. I also realize that if my plan of resting and taking extra good care of myself doesn't work, then I need to make an appointment to see my rheumy. Pat, you have helped me realize that I shouldn't settle for the feeling of just getting by.

I notice that when I am more rested, these brain problems get a little better, but when I am fatigued or stressed, then all the sensitivities start and the feeling that I'm not myself. If this doesn't go away with more rest, I need to talk to my rheumy. Sometimes I wonder if an anti-anxiety would help with some of this.

You have all helped me more than you probably know with this with your support and understanding.

Love,
Hippi
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 9/11/2007 7:57 AM (GMT -7)   
Hippimom -

Now that you mention it, I was taking a small bit of Xanax along in there somewhere. Unfortunately, I can't recall when! I still take a bit at night to slow my mind down (from pred) or I'd never get to sleep.

I'm glad I could help a bit - when I read your post I was struck, one more time, by how similar you & I often are w/symptoms. It's really difficult to slow down when feeling ok - the brain feeling ok seems to hide the little body aches and they get worse until they get attended to. And sometimes we just get stubborn -

I did it again yesterday - it's been to hot to do any yardwork, and nothing had been down in 6-8 weeks. I only have a 20x20 ft yard, but sprucing it back up -- well I was just going to trim the hedge, but 3 hrs later had done everything. Of course now I have plenty of joint & muscle pain -- all minor enough for ibruprohine, but I *know* I much pamper myself today. And that's a DRAG

Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/11/2007 2:29 PM (GMT -7)   
Lynnwood, you helped me more than just a little. Something about your post really struck home for some reason. The way you described your worst cognitive problems is how I sometimes feel now - thankfully it's not all the time, but when it's there it's terrible. I find myself getting beyond frustrated and I and up snapping at my husband and kids about nothing. When this happens I try to explain that they haven't done anything wrong, that I'm not feeling well and my head doesn't feel right. I just want to scream and crawl in a hole sometimes.

Your post also helped me finally realize that I've been trying to do too much for too long and it's not doing me or anyone around me any good. I am already feeling a little better from resting more, but I'm still dealing with cognitive fog and weirdness when too much is going on around me or I'm over tired or over stressed. I'm also hoping the extra rest will help with the extra joint pain I've been having too.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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