Author Topic: Brain Fog  (Read 14590 times)

Kerrikins

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Re: Brain Fog
« Reply #15 on: December 15, 2010, 02:14:18 PM »
I don't know what causes brain fog but mine gets worse when I am tired. I haven't been sleeping for a while... and this morning I took my meds 2x for the first time. At least once a week I'll debate with myself over whether I took it but this is the first time I actually did it. I know so because my body got nervous about an hour later and I lost the hearing in one ear. I can't believe I need to get a pill holder already but I guess I do. I haven't yet because I never see any childproof ones and it must be childproof.

Other than that, yes, if I am distracted by anything I'll forget things on the stove, etc. The worst is definitely the kitchen, haha.

jordozmom

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Re: Brain Fog
« Reply #16 on: December 16, 2010, 07:13:01 AM »
I was diagnosed 10 years ago and early on I would mostly only have brain fog when I was really fatigued or having a flare, but now, at 39, I seem to have the brain fog constantly.  It is very scary.  I keep thinking - if it is getting worse and I'm only 39, what will it be like when I'm 50?  Will I be a vegetable?  It makes it very hard to function and creates a lot of anxiety (which makes concentration even worse) and fear and depression (again, makes concentration worse).  What is most disappointing is that none of my doctors seem concerned about this.  I think this should be taken as seriously as my other symptoms...
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
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BonusMom

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Re: Brain Fog
« Reply #17 on: December 16, 2010, 07:54:06 AM »
Whan I was initially getting ill with gastroparesis, I had an episode of getting lost in my neighborhood, where I've lived all my life. It scared me. My PCP did an MRI. Negative. No explanation given.

Three years later I was dx'ed with SjS and I understand brain fog is part of the disease but it doesn't make dealing with it any easier, especially when DH is short on patience.  Now that I also take Topomax (aka Dopomax) to control migraines so I'm a walking ditz, never mind that I'm also blonde.

I worry about keeping my job.  I used to think about promotional ops, not anymore. Now, I'll be happy if I can keep my job until I have 20 years in and get the mortgage paid off before I retire.

I used to pride myself on my spelling and writing abilities.  Sadly, I'm no longer the Scrabble champion :(

ohiolady

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Re: Brain Fog
« Reply #18 on: December 16, 2010, 08:45:21 AM »
I told my husband about our brain fog discussion and he asked, what causes it?  Well, that is the million dollar question that no one seems to have an answer to.  Jordozmom, I really think we don't have treatment because it is not understood.  Thank God, you all have the same issue or I'd be beside myself with worry.  It has brought comfort to me to know that I'm not alone.

I asked my husband if he thought it was noticeable to others and he said no.  The only thing he notices is I can't give the historical accounts that I used to give.  You know, we went here on Jan. 1st at 3:30 pm and it was snowing and remember Joe was wearing the blue shirt.  He always counted on me to remember every detail.

On a lighter note, my 28 y/o daughter and I were playing two handed spades last night and both our brains were out to lunch.  Every hand, neither of us could remember whose turn it was to go first.  I looked at her and said, are you trying to make me feel better?  :)  Nope, her brain was just missing in action.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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navydad

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Re: Brain Fog
« Reply #19 on: December 16, 2010, 10:37:22 AM »
Ok,, to add to the mix,, who can remember things almost to a T about events years ago,, but cant remember what they did yesterday,, the day before,, or even last month,, lately I have had vivid recalls of events tht happened years ago,, example,, for 4 years pre kids, my wife and I went to wildwood NJ each summer,, I remember the name of the motel we stayed at,, and my wife can vaguely even remember us even going, same with other trips or events

echofuzz

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Re: Brain Fog
« Reply #20 on: December 16, 2010, 11:21:38 AM »
today's brain fog is brought to me by Tide: i did a load of laundry without adding detergent.  :)

navydad

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Re: Brain Fog
« Reply #21 on: December 16, 2010, 11:59:59 AM »
I;ve put clothese in the washer and went back a hour later to see them still dry, dirty, and covered in soap powder,, forgot to turn it on

irish

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Re: Brain Fog
« Reply #22 on: December 16, 2010, 10:13:25 PM »
Awww, brain fog. I have had this off and on since I was about 20 years old. I always thought that there really was something wrong with my brain so when the docs treated me like I was nutz I was almost inclined to agree with them.

However, since it was in my life for so long I started to learn to do some things to cope with this. Remember being told when we were a kid to use something to make "a hook to hang something on" or remember it. When hubby and I were at the immunologist last week for his appointment, the doc wanted to know what the name of a new drug was that we are trying to find cheaper. It is called Dabigatran. Doc said, I can't remember that, how do you remember it. Doc has been talking about it for 6 months and he still can't remember it.

I told him that trying to remember it was driving me crazy so I found a hook. Remember Brylcream and "a little daba will do ya"??? THat is what I remember to help remember the name of the drug. It is a lot of work learning to do this but it works. It has saved my neck a lot of times because for some reason unless I have these hooks I don't remember.

I challenge my brain by setting up perameters. For instance, say I need to take meat out of the freezer to thaw for supper and it is the day before. I will say this over and over a couple of times "tomorrow when it is 10 AM I will remember to take the meat out of the freezer". Believe it or not, this weird thing works. I have the advantage of doing this much of my life.

I am wondering if some of this memory stuff is related to the depression that is brought on by the shortage of chemicals in the brain. I would imagine that chemicals could fluctuate from day to day. I have also noticed that my brain will be acting weird and I will take my blood sugar and it will be low. I have only been a diabetic for 1 year, but I have had documented instances of low blood sugar on and on for many years. The pancreas can be affected by the sjogrens so maybe it shoots out too much insulin at times causing the low blood sugar.

THe days that I am having brain fog I try to not do too much. I figure that it is better for me to rest and wait til I feel better. If I try to do something when I am like that I am not very productive. How many of you have noticed that in the morning you have the brain fog and as the day progresses you improve??

I used to get up around 5 AM to go to work and I was more mentally alert back then in the morning. Now that I don't have to get up and sleep later ( til 7 or 8 AM ::)) I find I am more foggy in the morning. I also wonder if it has something to do with the amount of cortisol that we secrete in the early hours of the morning. Bet there are a lot of research studies on that one. Irish ;D

navydad

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Re: Brain Fog
« Reply #23 on: December 17, 2010, 05:24:15 AM »
Cortisol,, mine is alwys low,, morning noon night,, doesnt matter when they take the test,, its alwys low,, guess the adrenals are messed up,,

Ok, last one,, couple of weeks ago my wife left out a pound of ground meat,, and a box of some kind of stove top dinner,, said the directions are on the box,,, ok,,

I brown hte meat,, look at the box,, you might as well write it in greek ,, I cant follow directions,, I swore it said dump in a cup of hot milk and 2 cups water,, I wasent even close,, it was a half cup of hot water, and 2 cups water,, we had frozen pizza for dinner,, even my doxie woullndt even eat that slop I tried to make,,

tried to make cookies a couple of weeks,,, how was I supposed to know they spread out when they bake,,, dam things came out as big as pancakes,, I kept looking in the stove,, what in the world is going on,, there getting as big as a house,, and I had at least 15 of the dam things on the pan,, I dont go near baking stuff anymore,, I would make a horrible bachelor,, I;d have to eat ramen noodles for brekfast lunch and dinner,,

flutterfly

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Re: Brain Fog
« Reply #24 on: December 17, 2010, 11:32:11 PM »
the worst 4 me is when i'm in the middle of a sentence & i take a breath & um...what was i sayin?

no really what was even the topic!!!  :o  stall...oh no...coughin' attack (faked of course) oh yeah...

wonder if they noticed!!!   :-\

anita

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Re: Brain Fog
« Reply #25 on: December 18, 2010, 04:53:14 AM »
This has become a huge problem for me.  I recently posted a thread about my upcoming cognitive testing.  Well the test has been done and the results were a bit shocking.  I already knew there were problems, but I didn't expect them to be so severe.  The findings showed significant issues in both memory and processing speed (one category I scored only in the 1st to 3rd percentile).  I don't even know all the final results of questionnaires/testing I had to complete at home and turn in.

I'm still awaiting a discussion with my neurologist.  He told me that before he sits down with me about the findings, he needs to see what might show on an MRI.  Having a pacemaker has always made this impossible (well, it use to).  Apparently Johns Hopkins has a new protocol to perform MRI's on patients with pacemakers.  I know very little whether the scan itself will be of the same intensity, etc.  But I just found out that I have finally (after over 6 months of trying) been approved to participate in this very new program.

So we shall finally see what changes have occurred in this brain since 2004 (last MRI before pacemaker).  Then they will discuss if any treatment is available (if something shows, that's a "treatable" problem).

Anna,

I'm not surprised your rheumy doesn't recognized cognitive problems.  You need to see your neurologist about this if your symptoms are significantly affecting your life.  

That's one HUGE benefit I have with my rhuemy also being a neurologist.  He's the only one in the country (to be both) and his focus is only in the neuro symptoms of sjogren's.  So after my "sit down" with him (after MRI), I'm hoping to possibly be able to help answer the most popular question on this thread...what is causing the brain fog in people with sjogren's?

I will make sure I share his thoughts on this for everyone to read.  I won't forget!!!   LOL

 
« Last Edit: December 18, 2010, 05:03:22 AM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

ohiolady

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Re: Brain Fog
« Reply #26 on: December 18, 2010, 07:00:00 AM »
Thanks, Anita, we will look forward to hearing what your neurologist has to say.  I've thought of going to see a neurologist but I'm going on a sabbatical for awhile.  If I have any control, I'm only going for cancer checks and scans, my regular, GI, rheumatology, endocrinology, opthamology, dental and yearly appointments and tests.  I am just really tired of going to the doctor.  I feel I'm at the doctors or having some sort of test about half my life.  We will see how long the sabbatical last.  :)

Anna
« Last Edit: December 21, 2010, 07:05:35 AM by ohiolady »
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
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anita

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Re: Brain Fog
« Reply #27 on: December 18, 2010, 07:09:52 AM »
Isn't sad that a "sabbatical" still includes at least 6 "ologists"??? 

I hear ya about tired of the doctors!!
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Spartan1

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Re: Brain Fog
« Reply #28 on: December 20, 2010, 07:13:45 PM »
Hi,
  I too have quite a lot of brain fog..I was putting movies and cleaning products in the fridge. I  am very forgetful and my speech has been off. I know what I want to say but the words that come out make no sense. It has been so frustrating. I have been hit with such extreme fatigue and I can;t stay awake..I took my blood pressure during one of these days and it was very low. 82/53 I usually run 115/17..I saw the cardiologist and he did some tests. He thinks I am having trouble maintaining a proper fluid balance. I was put on fludrocortisone 0.1 mg. I feel like a new person. I can get thru the day without the extreme fatigue..feel more alert and able to think.

Has anyone noticed the brain fog at times of low blood pressure?? Anyone else experienced this?

Spartan

Carebear

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Re: Brain Fog
« Reply #29 on: December 20, 2010, 08:42:42 PM »
Hi Spartan1,

I too experience low blood pressure now, at times as low as 76/48.  Most of the time I will feel lightheaded and very fatigued but I don't recall experiencing more brain fog than usual.

What kind of tests did the cardiologist run to determine you were having trouble maintaining a proper fluid balance?  I spoke with my rheumy about this and he just shrugged his shoulders, telling me it wasn't a Sjogren's issue.  I don't agree but I had bigger issues to deal with at the time. I plan to address this with my family doctor in the future.

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.