??? 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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?
My MRI showed several calcifications on my brain. Are those the same as the lesions that many of you are referring to?
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.
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. :o :o
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.
I was reading a medical paper on this yesterday. Apparently Sjogrens inflammation often causes veins to become inflamed which is known as vasculitis. Vasculitis can happen anywhere in the body but when it happens in the brain the result is cognitive disability. Unfortunately it sometimes takes a sharp physician to realize vasculitis is taking place. A shortcut to vasculitis diagnosis in some cases is a microscopic examination of the nailfolds. Red skin between the fingernail and first joint of the finger is a more obvious sign. But it can crop up invisibly anywhere including internal organs such as the brain.
TIAs are another story and are often a result of inflammatory processes and/or vasculitis and resulting venous plaque formation. The body puts a bandage of plaque on damaged vein walls in an effort to protect itself. Sometimes the smaller veins burst from the resulting pressure or the plaques break free and cause blockage. I was diagnosed with a TIA in an emergency room once but the doctor told me he wasn't really convinced of the diagnosis himself so who knows.
Generalized inflammation can take a toll too from the resulting fatigue and is enough to account for many cases of cog fog all on its own. You need not have any of the other things to have significant cognitive disability.
Many years ago I ran a business and a nonprofit organization at the same time. Now I may put off something ridiculously simple for weeks because I'm not sure where to start or I'm worried I'll get it wrong. People with such issues having to navigate health, insurance, and benefit systems on top of such troubles seems especially ironic. We're there in part because we can't, right?
My posts may seem grammatically reasonable but if it takes me ten minutes to write one I spend a lot more time going over and over it fixing the mistakes. Then I usually spot one just as I hit 'Post'. I used to want to be a writer but nowadays it'd take me ten times as long. I'm not working so there's no one to see. When there was it made things a lot worse.
I'm so sorry you're going through this and I hope you find a way to make it through until disability kicks in. Someone told me when things get bad we'll find a way. So far they've been right.
Jozee I can relate to what you are talking about. I am a nurse and I went back to school for my Bachelor's degree and graduated 3 years ago with a 4.0 grade point average. I am now working on my wellness coaching certification and I am having so much trouble communicating that I wonder if I am going to make it. My job as a health and wellness coach requires me to use special techniques to respond to clients to help them to reach their goals. I feel like I am of at least average intelligence, but I find myself communicating on a grade school level. I tend to forget the word that I want to say, even though I know what it is in my head. I have been on Cymbalta for about 3 years now. I started taking it for neck pain and it really helped. It did give me a lot of grogginess and lethargy in the beginning. I stuck with it and I have been happy with the results. I am not happy with the fact that it has not helped my muscle and joint aches go away. I started on Trazadone for Migraines recently and I have wondered if that has caused some of my cognitive issues. I think getting off the Neurontin is a great idea though. I don't know very many people that can take that and still function.