Hi All,
Can you relate to the brain drain that comes with lupus? I can best describe it as feeling as though I'm going into a sword fight with my butter knife. I feel dull, and the times when my brain has a "light" moment are rare! Wish I could bottle that feeling when it does happen.
Aside from hints on memory and keeping track of things, have any of you taken a vitamin/medication to help you be mentally alert?
Please do share. Thanks!
Best, Bubbly
Please forgive me if I have asked this question before. My memory is a wasteland.
The best that I know is to keep exercising your mind. There are a lot of free games that use memory and thinking skills. Play them when you can. Don't give in to it.
I know these exercises for the brain work. However, do you ever feel that there's no time for this stuff? Life is leaving me behind constantly. I'm a mum, a daughter, a lawyer, a domestic goddess, cooking, homework etc. And I'm only 38. My 9 year old daughter has to constantly deal with my limitations. And now I cant remember stuff. Yes, I also work with lists. But lists don't help when I'm trying to guide my daughter with her writing or a project or a speech! and I cant find the right words. So embarrassing.
I forget important memories, things that should be etched into my mind forever, or used to be there, somewhere. Its scary. Its not something I can quickly reference in a diary for example, esp when in the midst of a conversation. Esp the ones that start off with "But dont your remember? You were there!"
There must be some kind of multi vit or supplement one can take for their memory! Or is that just too easy...
3 languages are impressive. I'm supposed to be learned in 3 languages. Although on most days I cant get English right. We live in hope. I'll let you know if I hear of something. Til then, stay well.
pontovirgula said:
Hi! My memory is worst than ever, in conversations I feel a bit awkward when forgetting words constantly or replacing it with the wrong one. I keep lists for everything, I write down at night what I need to do the next day, though I almost never accomplish everything. I'm learning a new language, at work I speak in 3 different languages. My grandmother has early alzheimer and I play really simple memory games with her, associating words and images, since she's forgetting how to read and write. That leaves me quite worried about my future, her neurologist says the best thing is exercise your brain, don't let yourself stagnate. Please let me know if you find anything else that might work. Best
I feel like I have been experiencing brain fog more and more these days. Some I think is caused by the Benlysta infusion that I do once a month. It is so frustrating. I have always been a little “fly by night” so to speak, but now I look like I can’t recall half of the information in a conversation with someone. And my friends like to “lovingly” tap a little fun at this increased little flaw. I don’t yell out in a crowd, “its the lupus that’s doing this, please shut your mouth”. But, I would like to. I would love to hear about the brain exercises!
My cns lupus has really affected this. Last night my husband was telling me what kind of pizza to order so he could go pick up our car. I kept looking at him and said your confusing me, what? Finally after three tries I got it. He just turned to our friend and said it will be interesting to see what we have for dinner. Later that night he told me that our friend was surprised at how much better I am doing and how happy she was for me. I just have to remember how far I have come and not let these things frustrate me. I do try and play spider solitaire and different word games on my computer when I wake up in the morning before I am able to get out of bed. I don't know if it helps.
I write everything down - in multiple places - and ask family members to remind me of things. I also take Ginko Biloba twice a day.
My memory is going. I used to remember everything. I also have cns lupus. I dont function very well anymore
I used to have a memory like a steal trap. It is why school was such a breeze for me. Now I still have the memory of a steal trap, the only trouble is it is rusted shut so nothing gets in it just runs past it.
It is known as congestive dysfunction, I read that was from inflammation around the brain, there is a special imaging that can detect blood flow in the brain.
I have had this off and on for a few years now, it is usually accompanied by blurred vision.
Hi - do you believe that the Ginko helps with the memory?
Idioskosmos said:
I write everything down - in multiple places - and ask family members to remind me of things. I also take Ginko Biloba twice a day.
Without any doctor ever putting an affirmative label on what I experience normally, I suspect that the lupus has impacted my nervous system. There are times I have complete numbness on one side of my body. Also the associated nerve pain causes me terrible migraines.
Can a CAT scan pick up on this deterioration? Whilst I know the testing may be advanced in South Africa, there arent many advancements made in the identification and treatment of Lupus...In fact there are about 4 doctors who actually treat Loopies, scattered across the country. So sad.
Jon_sparky said:
It is known as congestive dysfunction, I read that was from inflammation around the brain, there is a special imaging that can detect blood flow in the brain.
I have had this off and on for a few years now, it is usually accompanied by blurred vision.
I it is a special type of MRI, I will try to find the article.
Here is a page that talks about neuropathy and Lupus:
http://www.qualityhealth.com/pain-articles/lupus-nerve-damage
Bubbly,
I had a lumbar puncture to diagnose my cns lupus.
Is it possible that in addition to the lupus itself the medicines to treat it (immunosuppressants and/or steroids) can be damaging to our ability to remember things? Even on a short term basis?