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need2kno
02-07-2012, 07:33 PM
I'm still new to this SLE world. It's a little challenging to get answers out of Dr's right now and I'm waiting to see a specialist.

(If you have seen my previous posts, my ana is 1:640 my DNA Double Strand Ab was ok, my ENA was a HI POS for Sm antibodies and HI POS for RNP)

I would love to hear your stories regarding Lupus Headaches. I've had cluster migraines for 10+ years with massive light sensitivity, but I don't know how most people experience migraine with Lupus.

My other question ... if anyone felt like discussing how lupus has effected their brain, it would be amazing. I have felt like I was going insane, like my brain was a maze with moving walls. It seems I am clumsy and my speech goes awry often with words being forever out of reach. Writing is actually something that seems to bypass that function and lets me out.

Have your migraines improved?

Has their been improvement in how lupus effects the brain/nervous system for you?

Is there anything you wish you knew when you were starting out with your Dr or health management?

Thanks so much for sharing guys!

tgal
02-07-2012, 07:54 PM
It's really hard to answer some of your questions because we are all different. Many of us have headaches (migraines/Lupus). Most likely the thing you are talking about in your brain is what we lovingly refer to as "brain fog". Check out a funny thread that we have here all about the silly/dumb/crazy things we have done due to Brain Fog (http://forum.wehavelupus.com/showthread.php?7214-You-Know-You-Have-Brain-Fog-When...&highlight=brainfog). There is the other end of brain involvement called CNS involvement but it is pretty rare. What you are dealing with now is most likely the plain jane Brain Fog which can drive you crazy! You know the word you want but you just can't "find" it. We get it. You will know people understand when you read the brain fog thread!

need2kno
02-07-2012, 08:39 PM
tgal,

Thanks for your post.

Because everyone's experience is so different, and I have never known anyone with Lupus, I'm looking to understand some different experiences. I spend time reading lots of great sticky notes, I am hoping to connect with others here too :)

This continues to be a challenging process.. I recently moved to a large city with no real connections to speak of. I then got a really nasty wave of migraines, body pain, blurry eye, trouble breathing etc..which led me to seek treatment and to find the forum.

During times of change it is comforting to hear stories of courage.. and everyone effected by Lupus has a courageous story to share... and I sure love to listen!

tgal
02-07-2012, 08:50 PM
tgal,

Thanks for your post.

Because everyone's experience is so different, and I have never known anyone with Lupus, I'm looking to understand some different experiences. I spend time reading lots of great sticky notes, I am hoping to connect with others here too :)

This continues to be a challenging process.. I recently moved to a large city with no real connections to speak of. I then got a really nasty wave of migraines, body pain, blurry eye, trouble breathing etc..which led me to seek treatment and to find the forum.

During times of change it is comforting to hear stories of courage.. and everyone effected by Lupus has a courageous story to share... and I sure love to listen!

Did you click on the "brain fog" link? I really think you would enjoy it

magistramarla
02-07-2012, 08:55 PM
I used to get migraines every once in a while - often related to being exposed to an allergen, such as tobacco smoke or a strong perfume.
The last really bad one that I had was when I was just starting to figure out that I had AI issues, back in 2007. That one was a memorable one - I was in a lot of pain for a long time. It didn't help that my son got too rough with his nephew, who wound up getting stitches, while I was hiding in a dark room feeling ill! BOYS!
I've had a few since then, but they have been fairly mild. I hadn't given much thought to this before, but I think that the migraines have gotten better since I've been taking Plaquenil. I wonder if there is a connection?

I really hate the brain fog! I have a good education, and I used to teach Latin. My students got really good at finishing sentences for me. I would forget vocabulary words that I had just taught them. When I hesitated, they thought that I was quizzing them, so they would supply the word. I rolled with it, and the kids learned without realizing that their teacher was forgetting basic Latin! My husband is really good at finishing sentences for me, too. It can be very frustrating for a person who has always had a huge vocabulary!
Hugs,
Marla

bunny28
02-09-2012, 10:26 AM
I have a lot of headaches. I would say this is currently my most persistant lupus symptom. I don't really have answers for you. I was diagnosed last Feb and have been on Plaquinil for that long. I am also on an anti-depressant that is supposed to treat my migraines. Truth is, it works for a while and then I seem to get used to it so I have to up its dosage. Things overall are way better on plaquinil in terms of my grocery list of symptoms that I had at diagnosis and before so I know the Plaquinil is helping...but I think from here it is just a matter of solving the big puzzle with my two doctors to sort out just how good I might be able to feel. The best thing I have learned this year is that it is possible to live and to live well with lupus. There are lessons to be learned about how to plan/take care of ourselves, how to self-advocate to doctors but my life is not over as I first thought it might be.

need2kno
02-09-2012, 12:55 PM
Thank you for your post! I am starting to definitely get the picture that there is no magic pill but that things can improve. Migraines were my first persistent and debilitating issue, starting over 15 years ago. I only made the link when I plugged some odd bloodwork into the web and only got people in Lupus Forums discussing their condition. I read up on the condition and by point my migraines had many other symptoms I had only associated with migraine. In reading about Lupus I was reading life stories pulled from the pages of my life, it was pretty amazing. So I asked for additional testing. Thank Geeks for the internet :)
I had been experiencing crushing fatigue and muscle pain for years and now knew which tests to ask for like the ANA and ENA.
I've been searching for answers to my migraines for 15 years without ever having known of Lupus, and now it's like when you buy a new car. You see it everywhere. I hear jokes on T.V. offhandedly raising awareness, notice the purple bands and hear media references. I did get the test results back. I got high positives on SLE specific tests and am waiting on seeing a Rheumy now.
I tried to get my Dr to help me get an idea of what the next year is going to look like, but he didn't want to discuss it. I don't know if that is a strange question on my part. Oh well, I always try to remember I don't know what is going on in their day either. I think I could use to do a meditation on "Loving Kindness" when it comes to DR's.
Bunny, I am sorry your having a lot of headaches! There's just no where to go when the pain is right in your central processing center. Huge hug!

Holly

sometimes I pass time in the dark wtih www.audible.com either audiobooks or some soothing nature sounds. One of my tricks. Share one of yours.

SleepyInSeattle
02-09-2012, 04:55 PM
I'm so sorry you're suffering!!!! Its really hard to organize your own medical treatment when you are dealing with migraines and brain fog. Ironically, you need all your mental faculties and lots of energy to do it, and yet, of course....those are the things you lack when you have Lupus/etc....! What a conundrum....

I started getting migraines several years back, way before I got diagnosed with Lupus...I think it really helps to have a good neurologist who specializes in headaches - some of them even specialize in patients with autoimmune issues. My Rheum is happy for me to work with a neuro, because it's good to have a specialist track any brain changes (I've had a few brain scans over the years to rule stuff out, keep track of changes, etc). As I am sure you know, headaches can be complicated to handle, as can AI disease - and when they come together it can be especially challenging. Sadly, my Neuro just went on leave for a while, so I have to find a new one. I'll do it, just as soon as I get out of this brain fog and get some energy....LOL....

From what I have read, migraines are not "officially" a Lupus symptom - meaning, I guess, that they can find no conclusive link between the two - BUT many people with Lupus suffer from migraines - a disproportionately high number. So I guess effectively/anecdotally, there is a link - and lots of docs seem to acknowledge this.

I have been on Plaquenil since the Fall...I don't see any difference in my headaches - but of course it hasn't been very long yet. Bringing my Vitamin D levels up seemed to help (doc put me on prescription D for a while), and my Neuro helped me identify triggers - certain foods, wines, etc. Avoiding those reduced the frequency. Mine are also at least sometimes hormonal....some times of the month, I can have a glass of red wine with no headache - other times of the month, if I even SMELL red wine I get a migraine. It's weird. But with my Neuro's help, I have learned to track and identify triggers more effectively.

I still get them - and then I take Maxalt, which works pretty well for me. But as I am sure you know - with headaches, just like with Lupus, everybody is different.

I guess that's part of why docs are so reluctant to make any firm statements about what causes them.