Brain Involvement or Not? - Trying to Find Answers!

21 posts in this topic

I have to agree with all of you that the artificial sugars ARE a trigger for my migraines along with red wine (waaaaaaa for me!) and the once a month thing. There must be more since I still get them, but I have kept a 6th month journal and have had no other clues as to what else might be causing them.


I do get the aura and know right away that a doozy is coming, at least I get a warning before the storm.


I may have mentioned before, but Fioricet seems to be working at least 80% of the time for me. If I catch the migraine right away, I have a chance of avoiding a full blown migraine...if not, I am in bed for a long time.


Best of luck to all of you migraine sufferers out there, never give up trying to find a solution!!!







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OK Girls,


No great big news about the headache, dizziness and brain shocks. He did a bunch of lab work to basically see if I'm in a flare. (I feel like I'm always in a flare, so if a real one comes along I'm toast) He is scheduling me for a brain and neck CT. His sense is I have a herniated disc at C-1. Nice....he's scanning the rest of the brain to make sure it's there :wacko: and to make sure nothing is there that shouldn't be.


So, sorry I wasn't much help. I'll let you know the results.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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I agree that we've all experienced brain fog and personality changes. I had one doctor who acknowledged that the brain does become affected with scleroderma. So I guess besides being hardheaded, I also have a hardened brain. I know my personality has changed, like Amanda says, how could it not change aftering being diagnosed and having to live with an autoimmune disease. I've had people or family members say I've changed. Obviously they don't understand it's not easy accepting an autoimmune disease into your life. I've gone through all the emotions you can think of and settled on a slower moving, low key version of my old self. I'm not the fastest talking whipper snapper of the midwest but my brain is still sharp (even though it fades in and out like an old television set) and thank goodness I still have my old wit to keep me amused.


As far as headaches or migraines, I don't usually get them (never had a migraine), at least hardly ever before my scleroderma diagnosis. I know there are food triggers that will cause headaches and migraines. For me, if I do get a headache now it's usually stress-related and lasts on and off for days. As soon as I get rid of the stress, the headache is gone too.




Live well, Laugh often, Love much

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Sorry to hear about so many of us with migraines. Is it brain fog, pill effect or sclero? We may never know. I am so surprised to hear others have the 'shock' syndrome. I've had it for about five years, if this is sclero related it may be one of those mis-interpreted symptoms. I was diagnosed 01-04-07, maybe it should be 01-04-02?mmmmmmmm. Gives us pause to think. We don't need any more issues than we already have.


I hope that everyone can find relief for those migraines - mine are doosies, but can't seem to pin-point the cause. I'm lucky in the fact that they don't last longer than 24-48 hours. After reading the posts, there are now things for me look out for.


Love this site and the folks in it!!!

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Brain shocks...I just want to let you all know that Gareth had Keppra added to his seizure medications 2 weeks ago and his 'brain cracking' has stopped. He started with seizures a year ago. So has anyone seen a neurologist for seizure disorder concerning their 'shocks'? Gareth's seizures aren't the 'normal' type but the blank stares for fleeting seconds or slight quivering of hands, etc, now called absence seizures. Does this sound like some of your 'brain fog' moments. Seizures can be present in UCTD. Just an idea -- a bummer one at that, too.


Take care, Everyone.


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Hello JanQ,


I know all too well about migraines and headaches. Seems like I have lived with one or the other for too many years. I've suffered from severe headaches and head pain as a child to adulthood and there was never a diagnosed cause for them. I did not develop migraines until I was pregnant with my second son (he's 15). They got really bad and it made it even worse that I could not take anything for them. After he was born they subsided for several years, but they came back with a vengeance. I had a bout with Bell's Palsy maybe 6-7 years ago and after that I have had frequent headaches again. The migraines would get so bad I'd have to do IV therapy. Thank goodness I haven't experienced one that bad in quite a while.


More recently (maybe the past 2 years) I will have headaches that wake me up out of my sleep. It's like a severe throbbing pain that increases and doesn't stop until I wake up. I too can only take Tylenol derivatives so it makes it kind of hard to manage sometimes. It's weird that they don't occur during the day, only at night. I have had a full neurological review (CT and MRI), but nothing was identified.


We've talked about the brain fogs on a previous post and I can co-sign on that as well. Losing concentration and thought process, walking into a room and forgetting what the purpose was. Speaking the wrong word when you thought the right word, transposing letters when typing or writing. This has just become par for the course with me yet the boys get a good laugh off of my speech from time to time.


It never ceases to amaze me how many similarities in symptoms there are with us Sclerodermians!

I may have Scleroderma, but Scleroderma doesn't have me!

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