Sudden decrease in brain function?

I am not real sure how to explain this. I have the usual brain fog and some memory issues just like most of us here. I have had this for several years. But, just within the last 2 weeks, its gotten SO much worse. It started last week with a nasty migraine that lasted almost 3 days despite medication. Since than, I have had a low grade headache but its also been very hot and humid here so I blamed it on that.

Overall, my general body pains and such are improving with my remicade treatments and I am due for my next infusion next Thursday. But, since this migraine, I have just been STUPID. I mean I am making really dumb mistakes at work, a LOT of them and thats just not like me. I am feeling more dizzy than usual and just feel "off." I was trying to watch old reruns of Law and Order last night and couldn't even follow the show!

I am having a hard time finding the right words and even finding the letters on my keyboard (thank goodness for spell check!) Is it normal to have such a sudden change for the worse in mental status even though the sarc seems to be getting more under control? I hate to be a hypochondriac but its really starting to worry me. This is more than just my usual brain fog, I feel like someone cut out half my brain!

By adventurer
Posted July 18, 2008 at 10:09 pm

Hi Micheleb,

I had that for quite awhile, I've improved a lot since then but am not 100%. more like 85%. I have no sarc diagnosis but I can sympathize. Its very very scary. Couldn't find the simplest of words, couldn't finish sentences, couldn't figure out what people meant when they were just talking normally.

One of the worst parts was people not understanding... just saying stuff like "oh, I'm that way too!" "I know exactly what you mean".

The neurologist believes its psychologically based for me. Hard to hear when I have so many physical symptoms at the same time: pain, heart palps, muscle jerks, goosebumps moving around my body....

You most likely wont have the same dx, but see a neurologist, I say.

Good luck.
adventurer

By Paradox
Posted July 19, 2008 at 12:39 am

Such a sudden change that is so severe and associated with headache is probably worth a trip to the ER where you tell them it is the worst headache of your life and get that trip through the humming donut. In other words - you probably should get this looked at, like CT and neuro exam. I'd send you to the ER, but call your doc and see what he says.

By Lise1
Posted July 19, 2008 at 2:45 pm

Micheleb, I am sorry to hear that you are having such cognitive problems..... I have not been able to return to work since Sept 06 . I use to multi task with ease, Now I must do just one thing at a time or else disaster happens. I feel for you, I do know first hand what you have described. My family doctor has sent me to see a Neurologist, and even though my MRI came back looking normal, he is checking my spinal fluid. (I go for a lumbar puncture/ spinal tap next week ) Should get results from that in a few months. My psychologist seems to think this memory problem could be just physiological and not Neuro Sarc or medicine induced, so who knows for sure.
Please keep us posted , you are not alone.

By ellishamilton
Posted July 19, 2008 at 4:01 pm

Only anecdotal personal observations related to cognitive hiccups---

1. Sleep...when I'm short, I'm stupid

2. Some medications...I suspect hypertension agents (beta blockers) and painkillers. Ambien produces morning stupidity. Lower primates think better than me after Ambien.

3. Having a 'Men are from Mars' style discussion with my wife. Not even the Vulcan Mind Meld bridges this gap.

4. Reading "medical" information on browser searches

---------------------------------------------------

I suspect, without any proof, that these little mini-strokes are more common than we think (TIA's). I like the CT scan idea.

By micheleb
Posted July 21, 2008 at 1:02 pm

LOL ellishamilton!!

I was trying to think (not so easy) about my recent medication use. I have actually been taking much less vicodin than normal for me, haven't taken any ambien but was using an otc sleep aide, wonder if that might be making it worse.

I called my mom over the weekend and she asked me if I had been drinking!! I told her no as I hadn't and she said I kept mixing up worse and sounded different. I asked my hubby about it and he said that I have been mixing things up more lately.

I didn't do a whole lot over the weekend, too hot outside for me. But I still just don't feel right. Can't really put my finger on it. I still have this low grade headache, its not a migraine or really bad but its constant. I just feel out of sorts. Overall, my general pain and sarc stuff is getting better with every remicade treatment I get but this is starting to freak me out a little.

I hate to cry wolf and feel like a hypochondriac. Its so hard to know when its just general brain fog gone wild or something more is brewing. I have been getting lots of sleep so I am not over tired and I have been real good about drinking a lot of water, thinking maybe I am dehydrated.

I just had some blood drawn today, general stuff and the results should be in by Wednesday. I will ask to speak directly to the doctor if I don't feel better by than and see if I should book a date with the humming donut!

By micheleb
Posted July 21, 2008 at 1:31 pm

Ok, so I called hubby and he was concerned as well so I just emailed my sarc doctor and told him what I wrote above. Geesh, whats next?! I will post an update when I hear back from the doc. Thanks for everyones advice.

By Teacherteacher
Posted July 21, 2008 at 1:38 pm

micheleb,
I went through the brain fog, slurring speech inability to find simple words, (in the brain and not out the mouth, real exciting in a teacher). There were no "objective" findings on tests.
Recently my lung functions started showing obstruction even though the xrays look pretty good. My resting oxygen is good, but my overnight O2 was down in the low 70s, 6 minute walk with the nurse dropped it to low 80s. Based on that oxygen therapy was started.

Friday, my primary physician reminded me that now that I am on oxygen it will help cognition. Oxygen deprivation at night can do it to you all by itself.

Good luck,
TT

By dlwellz
Posted July 21, 2008 at 3:26 pm

In 1996 when I first sought an answer to my symptoms, I had blurry vision, inability to concentrate, lapses where I could not call up a word and had a pause in my conversation even though I knew exactly what I wanted to say. Extreme fatigue was prominent along with erythema nodosum swollen parotid glands, fever, the first numb toe, shortness of breath, and a feeling of malaise.
When I am speaking and get hung up on a word, it can cause a blank look from a person. My skills at analyzing problems, doing math problems in my head, reading and retention, and keeping focus on a thought have diminished drastically since then. One of my worst fears is that these symptoms might cause people to see I have a problem and then discount anything I say or do because they think I have mental problems that invalidate my contribution to anything or everything. This is in addition to the other aspects of this ailment.

By at-the-beach
Posted July 21, 2008 at 7:14 pm

I had sacr in my spleen which was removed and in my lungs.I have recently had the same issues with headaches and memory lapses. I bought groceries the other day came right home and forgot I had them in the car. Weird! My regular doc felt my neck and said you have muscle tightness. Yeah I always have that duh! How do you tell your doc you want to go to ner.doc or have him order a ct scan of head without sounding like you think he is wrong and want to check out other diagnoses?

By fishergrl29
Posted July 22, 2008 at 12:03 am

OKAY,SO THIS IS REALLY CRAZY....I WAS DIAGNOSED WITH SARC BACK IN MARCH,AND I STILL REALLY DON'T KNOW TOO MUCH ABOUT IT....BUT I HAVE BEEN EXPERIENCING THIS "FOG" MYSELF....I THOUGHT I WAS GOING NUTS....I HAVE BEEN FORGETTING THINGS THAT NORMALLY I AM ON TOP OF....I HAVE BEEN SAYING MY SENTANCES BACKWARDS AND JUST KEPT GETTING SO FRUSTRATED WITH MYSELF...IT KIND OF HELPS ME TO KNOW THAT ITS A "SYMPTOM" OF THIS CRAZY DISEASE. BUT EVERYTIME I TRY TO TELL MY HUSBAND THAT I AM EXPERIENCING THESE DIFFERENT SYMPTOMS...HE TRIES TO TELL ME THAT I AM READING TOO MANY PAMPHLETS...IT KIND OF MAKES ME FEEL LIKE HE THINKS I AM TRYING TO ADD MORE STRESS AND STRAIN TO THIS ALREADY PAINFUL AND FRUSTRATING ILLNESS. BUT YET HE LOOKS AT ME LIKE IVE FLIPPED MY WIG EVERYTIME I FORGET TO CHANGE THE BABY(2MINUTES AFTER IVE REALIZED SHES POOPED)......I JUST DONT KNOW WHAT TO DO TO HELP HIM UNDERSTAND....

By dolphinstoo
Posted July 22, 2008 at 8:39 am

fishergirl,
your husband should be supportive and non judgemental more often for you! My brain fog seems to be reltaed to how much tramadol I take for the hand pain (severe at times with spasms). Most times my husband will look at me and say okay let's go back to that and just laugh, knowing that eventually I will remember whatever it was. I am a professional woman who also used to be able to multi task and remember more than I should (in sales that is important). Now my Outlook calendar is my bible and my memory. Although, that can't help you with the Poopie diaper (LOL)! Perhaps the smelling glands would!

By micheleb
Posted July 22, 2008 at 10:49 am

Wow, I am sorry so many of you experience this brain fog. It really was frustrating when it first started for me a couple of years ago but I started writing a lot of sticky notes and could get through it.

Now though, its just gotten so much worse and I find that odd because with my remicade infusions, overall, I am improving. Still not great by any means but definitely improving.

I work for an optometrist, been with this doc 10 years and in optical 20 years, I KNOW my job. The other day, I was getting the banking ready and I put the business account number on my personal banking. I am transposing numbers, VERY BAD when it comes to peoples glasses and eye sight. I will talk to someone when they come in the office, fill out their file, send them into the room with the doctor and when he brings the patient out 20 minutes later, I am CLUELESS who the patient is. My hubby says I am repeating stuff, like asking him to take out the trash and he thinks I am nagging but really, I just forgot I had already asked him. I am even having difficulty filing, like I can not even remember the alphabet!

I saw a neurologist about 1.5 years ago. I had these sorts of problems than but not near as bad and I would only have the occasional migraine, not this headache that is going on over 2 weeks now. She did the electric shock test and the needle conduction test and said I have neuropathy, thus the lycria I take. But, otherwise, she said things were find from her speciality. She couldn't begin to fathom why I had so many symptoms and so much swelling, this was before the sarc dx.

I emailed my doc yesterday mid afternoon and still haven't heard back from him. I don't want to make more of this than it is but it just frightens me that I seem to have gotten so much worse after the migraine I had two weeks ago and it seems like the actual migraine went away but has left me with a constant headache since than.

It is really hard to make our spouses understand. Mine was awful for years but since last fall, he has been much better about it all. We are both seeing separate counselors and I think that has helped a lot. We were actually headed for divorce last October but we are working things out and communicating and I believe we will be ok now.

By micheleb
Posted July 22, 2008 at 10:59 am

Oh, I forgot to ask about the oxygen thing. I had mine tested last fall and it was good, like 98%. The nurse had me walk up and down the hall a few times, maybe two minutes or so and it only dropped like 1%. How do they test your oxygen at night? Is there some sort of take home gizmo to check it at night. I spent a lot of time in the hospital last fall and they checked the oxygen regularly but could it have changed dramatically since then?

By Teacherteacher
Posted July 22, 2008 at 1:01 pm

It is a portable unit to take home that you clip on your finger and tape it in place. The info is downloaded into a computer.
My O2 levels made a sudden, negative change surprising my pulmo. This sarky is pretty sneaky.
TT

By nickmd
Posted July 23, 2008 at 11:25 am

These symptoms are not a TIA (transiant ischemic attack) or "mini-stroke" by definition any event lasting more than a few hours is not a TIA.
Evaluation as soon as possible (within 2 hours since there are treatments to limit stroke damage if treated promptly) is important. A severe atypical head ache is cause enough to go to the ER ASAP!
Any new neurologic symptoms (such as your difficulty with word finding), numbness, weakness, also need to be evaluated ASAP.

By adventurer
Posted July 23, 2008 at 12:50 pm

Your mention of otc sleep aid reminds me... I used to take tylenol pm nightly for a long time in addition to my rx sleep meds. Turns out it can be really hard on your brain. When I stopped my brain got better and better for a couple of weeks. Still have bad days and haven't gotten back to 100%, but definately worth it. Are you taking Tylenol PM? might want to drop it for a few days and see.

Adventurer

By word716
Posted July 28, 2008 at 3:06 pm

Hi Michelle,

Wow, wow, wow!! I am so glad I read your discussion.
I have had problems with memory, thinking, reading and remembering what I read, finding the right words, sometimes even having trouble having simple conversations, forget things as soon as I say or think them, I can't do the checkbook anymore, I have to have lists lists lists for everything. I went through a study of my thinking and memory ability. The only thing it showed was that I had a problem with concentration and attention. I do not agree, especially after reading everyones comments. I was a multi tasker too...I can only do one thing at a time now. My doctors seem to want to believe it is menopause or just stress. I wish I had a sarc specialist. Anyone know of someone good in Minneapolis, Minnesota or surrounding area?

I have been on disability for 13 months now. Am fighting social security...they don't seem to understand anything about Sarc.

I wish you all many memories and lots of clear thinking,
Word716

By Nonna
Posted July 29, 2008 at 7:02 pm

A friend recently had something that looked like a stroke. After four weeks he has been diagnosed with Progressive Multifocal Leukoencephalogpathy triggered they say at UCSF by undiagnosed and nonsymptomatic sarcoidosis in the chest. Yike.

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