What's happening to my brain???

[Jozee]

   I am normally a really positive person but my goodness the last two days have almost brought me to my knees!!! I work in radio advertising and need my brain to work!! As time moves on I swear some days I can't think at all. I spent 4 1/2 hours tying to do something that should have taken me 20 minutes. Then 2 hours later my assistant calls to tell me she had to re-do something I did earlier today. It was what I spent 4 1/2 hours working on!!! I used to have an assistant who double checked everything I did but she left. Now this one lets others know then tells me I screwed up instead of just correcting, letting me know and keeping her mouth shut. I am not sure how much longer I can continue working.   I am in tears by the end of the day from frustration. I am concerned about not having insurance for my meds while I do the disability process. We don't have disability through my work. My new doctor may be changing me to a different med instead of Gabapentin. I think he said Cymbalta but I'm not sure. Whatever it is he said it helps with the cognitive problems where as Gabapentin makes the cognitive problems worse!!! Why did they give me that to begin with then??? I sometimes wonder how we know so much more than our doctors sometimes.  Has anyone tried Cymabalta? it's an anti depressant that also treats pain.

[Carebear]

Hi Jozee,

I'm so sorry to hear about your cognitive struggles.  I know exactly how you feel.  I had to leave my job last April for the same reason, and have found  my own acceptance of this slow in coming.

I have not been on either medications you mentioned, however my father was on Gabapentin for pain management for about six months until I forced the doctors to wean him off.  It really affected his thinking to the point where I was afraid to leave him on his own.  And I know he had to be weaned off slowly too, because a dramatic reduction in dosage affected his cognitive ability equally.

I know everyone reacts differently to medications.  But do be careful to reduce the Gabapentin under your doctor's supervision if this is what you decide.

[warmwaters]

I haven't been trying the meds that you have but.....

The cognitive problems with the autoimmune diseases are very real.

I had a very high-tech, high-decision making, high-pressure job two years ago. Enter Sjogrens'. Now I have a great deal of problem doing stuff that would have been easy two years ago - like you said - something that used to take a short while now takes hours, complete with multiple breaks while I try to figure it out.

I recently had cognitive testing that showed that I have problems with processing information, including short term memory, and what they call "executive function", which has to do with organizing and assembling info.

Do try getting appropriate meds, but do understand that there possibility that you are experiencing one of the possible problems with Sjogrens. Search for brain fog - it's a common topic here, sadly.

I hope that there are ways that you can cope/find something that helps.

[Joe S.]

I know what you mean about simple tasks taking you all day. I also know about cognitive issues. While my IQ has dropped on recent test and is still High. I have trouble getting Ideas and thoughts out. A focus test from the psychologist scored me in the bottom one percent of the world after fighting auto immune disease for decades.

[LizPetillo]

At the last sjogrens support group meeting they played a CD ... a talk given by a doctor ... it discussed that we SJorens folks have lesions on the brain.  I didn't know that.  We can get them and they can effect emotions, etc.  Brain lesions.  UGH.

[cat]

I went from Gabapentin to Cymbalta about a year ago. I am doing better with the Cymbalta but am sorry to report my brain does not function any better. I just feel I am coping better with all of the health issues I am dealing with.

I hate telling you that but you must be prepared just in case you do not get the results you are hoping for. We all react differently to medications and what helps one may not help the other or vise versa.

[Joe S.]

My last MRI showed nothing. Some reports I have read suggested that we could have lesions on our spinal nerves. What ever the situation is, we often have cognitive and focus issues.

[Epson]

Wow, looks like there would be a lot of competition for the Scarecrow in the land of Oz, with all of us looking for a brain.  Some days I don't want to even talk, because I have such a hard time looking for words or names of objects or people, I have the knowledge in my brain, I just can't find it. Other days reading is impossible, because I can't remember what I just read 10 seconds ago.

I have had several MRI and like Joe, it showed nothing, well, I do still have a brain, but nothing unusual showed up.  Cymbalta has helped with neuropathy and Lamigtol helps control seizures, but I still have Swiss cheese for brains. 

[inga]

I can't take gabapentin, pregabalin or duloxetine.

Gabapentin is Neurontin, and it isn't called Morontin for nothing!  The neuro forums are full of experiences on this drug.

I got lost in my own small town on Pregabablin (Lyrica).  It is the step child of Neurontin.

And I had an autonomic meltdown on Duloxetine (Cymbalta).

If your pain is manageable, it may be better to use nothing.

If you haven't had a biopsy for neuropathy and an autonomic work up, it's time to do it now.

[Joe S.]

Epson, I was talking to a nurse I have know for 50+ years last night. We were talking about TIA's. I guess that they can leave your mind like Swiss cheese. This could be what you are experiencing. As I had one in front of an urgent care Dr. he said TIA no other Dr has brought it up. They refuse to test for it.

[ohiolady]

Jozee,

As you can see, many of us struggle with this issue.  It is very bothersome and downright scary at times.   Even more scary is doctors either don't acknowledge or don't understand the reason why we have memory issues.  So, we are left to manage on our own and just hope for the best.

Take care.

Anna

[Rayven]

How IS one tested for TIAs? I deeply suspect them in my grandfather but they won't test for it.  I know he can't have an MRI because he has a pacemaker but... what are the other options?

[BonusMom]

My MRI showed several calcifications on my brain.  Are those the same as the lesions that many of you are referring to?

[sjogrens53]

Jozee, I can soooo relate to what you are saying.  I am an elementary teacher and this year I can see the writing on the wall for myself cognitively.  Physically, I can make it through the day (even though I crash as soon as I come home).  But, I have had so much trouble taking in, processing, and pulling up information this school year that it is embarassing.  Does anyone know if that can qualify one for disability?  I want to work, I love working with kids.  I don't want to be on disability, but what is the alternative?  I am so worried and scared.  Any advice??  It's so hard when coworkers begin to notice--and point it out to us and others at work. 

[Pisces24]

Now this one lets others know then tells me I screwed up instead of just correcting, letting me know and keeping her mouth shut.

Sorry if this sounds sexist but I'll bet the new assistant is female!   I get sick of hearing about the "glass ceiling" at companies and woman complaining.
How About Supporting Each Other For a Change!

We got a few like that where I work at too. People's jobs are tough enough without having coworkers run to the boss on everything. I am 53 and the only time in my life I ever complained about a coworker to my boss was because a coworker became a real germaphobe. Some would cough in the dept & 2 secs later she'd send and email offering em a cough drop - and shouldn't they stay home with that? I found out 1/2 the dept has beaten me to the punch on complaining.
Oh you would Really not believe the stories I could tell. 

Gosh doesn't the assistant know one the best ways to get promoted is it to make your boss look good! She/he should be supporting you. Maybe you can get rid of her for not being a "team player".  That is a BIG thing in companies now.