yeah the cognitive issues suck! I talk like a blubbering idiot a lot of the time. It's embarrassing to talk to people anymore. I never know what is going to come out of my mouth. So I totally agree with you on the cognitive issues. It is scary! Take care of yourself and know that you are not alone!
hi elizabeth, i hope you are feeling better today. You have been through so much and for such a long time. I am so sorry that you have to endure all of this. Anyway, just sending you some gentle hugs for the day.
Thanks smokerscat and moutaindreamer. It is going on 5PM here and I am finally feeling an easing up of the headache and nausea. I am still using meds for both, but at least they are helping now.
I really hope that something good comes from the LP. I would like to know what I am dealing with and find the proper doctor to help me through the maze.
Does anyone here have CNS lupus? Can it cause demyelinating lesions in the brain, like MS? I have looked around the site, but can't find the answer to that one. ea
The cognitive issues are the scariest part for me. Here I am, a teacher with degrees in two foreign languages, and I'm finding myself searching for words. When I was still teaching, my students were often finishing sentences for me, both in English and in Latin! With them, at least I could fake it and make it seem like I was trying to get them to remember a vocabulary word. My hubby often has to finish a sentence for me, because I just can't say the word that I'm thinking of.
It is really embarrassing, and I feel that it makes me look stupid in front of people who don't know me well. I just hope that it doesn't continue to get worse.
I agree with Marla! The cognitive issues are really scary and embarrassing! I almost hate talking to people because I never know what is going to come out of my mouth. English, or some foreign language I invented. LOL!! Or just can't find the words at all! My hubby and I hae learned to just laugh at my new found languages, otherwise I would be crying alot.. I do make up some pretty odd words sometimes. It really can be embarrassing!
I have word finding problems too. My husband's mother died of Alzheimer's a few years ago. She would always say "you know" for words she couldn't think of. Now, I am doing the same thing.
People finish my sentences at times because they can't bear to wait for me to find the right word. I also feel lost in familiar places while I am driving. I have lost all sense of direction.
I just called my doctor to ask if the headache should still be so bad and the nausea from the LP. I can wait it out if need be, but I don't want to have a spinal leak and it cause some kind of damage.
Does the treatment help at all with the cognitive issues for anyone?
I just called my doctor to see if it was ok to try and outlast the headache and nausea from the lumbar puncture. She said no, it meant I had a spinal leak and I need to get a blood patch to stop it.
So, it is back to lying flat and I go in the morning for the blood patch. Apparently, they take blood from your arm and inject into the area where they punctured your spine. The blood coagulates and helps to seal the leak.
I really wanted her to say I could just last it out, but she said the body could not produce enough spinal fluid to compensate for the leak and it has to be sealed.
I really didn't want to be stuck in the spine again.
oh elizabeth, so sorry about the spinal leak, and having to get stuck again. I hope the procedure works and you get immediate relief.....referencing the cognitive issues, i have found that my "word loss" issues are a lot worse when i am in a flare. When i feel ok, i can usually get through an adult conversation, well sometimes.
I know someone who had the blood patch and it was a godsend for him..best of luck and I hope you get relief. I had a cervical epidural several years ago @ c5/6 and had a headache afterward for days...It is a horrible/nauseating experience that I can say only parallels a concussion.
I had the blood patch today. No instant relief. I've been laying flat again all day and drinking a lot of fluids. The doctor said it works for 90% of people and I should see relief by tomorrow.
Thanks for the kind wishes, Mountaindreamer. As far as cognitive issues being worse in a flare, I don't get any days that are much better anymore.
Pandagirl, that is a pretty good description of what it feels like. It feels like my brain has been bruised and when I stand up, it feels like my brain is tearing away from the sides. Hurts a lot in various spots of my spine too. I guess it is all connected.
Hoping for a better day tomorrow. I hope you all are doing well today.