Brain fog

[Diane54]

Had my 6 month follow-up with my Rheummy today and told her I think my brain fog has gotten progressively worse.....it's like at times my mind is completely empty.....it's so scary since I was always one working on brain teasers, knowing a name to a face, etc,,,,and I get a lot of headaches....my doctor said that she was going to schedule an MRI for me because some Sjogren patients have CNS problems...(I think those were the letters she mentioned....I forget!) Has anyone have experience with this? Thanks!

[Myshkin]

Yes, but I can't remember what I did to change it - truly no pun intended!

My brain is not what it used to be, and I better get used to it never getting back there. I am also taking Topamax for epilepsy famously known for making people into village idiots...

Always remember taking my vitamins makes it much better. And cutting back on other drugs that are sedating - if possible. And getting enough sleep. Cutting back on stress is essential.

I am selfemployed and have a business to run - bad combo with a melted brain. So I am addicted to to-do lists and note books.  I am compensating with Evernote and Wunderlist on iPhone and my computer. I think I have the most crazy lists in the world... But whatever works...

[Sleepy In Seattle]

YES - this was one of my worst symptoms, along with fatigue. 

I have Lupus, Sjs, Raynaud's and APS - a combination that heavily predisposes me to CNS problems.

After about 6-7 months on prescription-strength Vitamin D, Plaquenil, an aspirin each day, and a bunch of daily supplements (multivitamin, B12, C, Magnesium glycinate, CoQ10, DHEA, fish oil, Zyflammend), it was a lot better. Then I started on Methotrexate and folic acid, and it got even better! I think that inflammation in my brain was really taking a toll on me. I had problems with tiny clots in my eyes, and probably in my brain too - though none were big enough to show on the zillions of scans they did (thank goodness!!!!).

Joe S (on this site) also has some great recommendations of supplements and other things you can do. I asked my doc about some of the supplements that Joe recommends, but he said that they can affect liver tests so he'd rather me not take them for a while until we know how my body handles the Mtx. Do be aware that many supplements can affect test results, so your doc really needs to know what you are taking.

There IS hope out there - keep researching and push your doc to keep looking for something that will help you. It is a horrible thing to live with, and I think docs underestimate the impact it has on us.

[Joe S.]

A Reader's Digest Article from the 90's pointed me to R-Lipoic Acid and Acetyl L Carnitine. It lifted the fog for me and may be a good place to start.

[Autoimmunity]

Yes, but I can't remember what I did to change it - truly no pun intended!

My brain is not what it used to be, and I better get used to it never getting back there. I am also taking Topamax for epilepsy famously known for making people into village idiots...

Always remember taking my vitamins makes it much better. And cutting back on other drugs that are sedating - if possible. And getting enough sleep. Cutting back on stress is essential.

I am selfemployed and have a business to run - bad combo with a melted brain. So I am addicted to to-do lists and note books.  I am compensating with Evernote and Wunderlist on iPhone and my computer. I think I have the most crazy lists in the world... But whatever works...

I am also on topamax and can barely function.  Only taking 50mg, trying to work up to 75 mg, but I just cannot do it and work.  I have brain fog anyway from my autoimmune issues, but add in the topamax and I can't remember jack.  Or if I do remember, I immediately forget again.  That plus my severe fatigue, can barely stay awake, fell asleep at my desk, about to drop right now, I can barely get through a day.  I told my rheumy about my brain fog (before I ever started taking topamax) and was more or less ignored.  Don't know if he doesn't think it's a real symptom or just doesn't know what to do about it.  I seriously want to file for disability based on the fatigue and brain fog alone.  Either symptom alone makes working extremely difficult, to say the least  

[Myshkin]

Yes, but I can't remember what I did to change it - truly no pun intended!

My brain is not what it used to be, and I better get used to it never getting back there. I am also taking Topamax for epilepsy famously known for making people into village idiots...

Always remember taking my vitamins makes it much better. And cutting back on other drugs that are sedating - if possible. And getting enough sleep. Cutting back on stress is essential.

I am selfemployed and have a business to run - bad combo with a melted brain. So I am addicted to to-do lists and note books.  I am compensating with Evernote and Wunderlist on iPhone and my computer. I think I have the most crazy lists in the world... But whatever works...

I am also on topamax and can barely function.  Only taking 50mg, trying to work up to 75 mg, but I just cannot do it and work.  I have brain fog anyway from my autoimmune issues, but add in the topamax and I can't remember jack.  Or if I do remember, I immediately forget again.  That plus my severe fatigue, can barely stay awake, fell asleep at my desk, about to drop right now, I can barely get through a day.  I told my rheumy about my brain fog (before I ever started taking topamax) and was more or less ignored.  Don't know if he doesn't think it's a real symptom or just doesn't know what to do about it.  I seriously want to file for disability based on the fatigue and brain fog alone.  Either symptom alone makes working extremely difficult, to say the least

When did you start topamax? It took me 6 months to get used to it - but then it was a miracle on my temporal lope epilepsy.

After the 6 months it truly got way better - but then a year later Sjogrens hit.

If you're new on it, hang in there - it is a rough one, but if its the right drug for you it does get better!

[quietdynamics]

I started Topamax after an Chronic headaches, severe cognitive dysfunction ...could not even read a book. Went to the ER Nov 2012, and stayed under the care of the consulted Neuro.
Felt the benefit of the Topamax within weeks. And was able to drive again, yes that is how bad it was.

Diane54 Check that the MRI is with Contrast. Neuro ordered one and it came back clean. Rheum added Dx of Fibro. Both SJS and Fibro can show brain/cognitive disorders. I hope you get some answers and relief.
The most help I have gotten was with the neuro, but, then the Rheum I see did not even give the cognitive issues a nod.

Autoimmunity I am at 75mg Topamax, we tried to go higher but I could not tolerated it. I take it in the AM.  To wean higher you can try taking the dose you tolerate in the AM and the higher dose at bedtime.
Topamax  does not address fatigue, which of course will keep you in chronic brain fog. The neuro gave me a small dose of Ambien. So now I get REM sleep, Google REM sleep, not all sleep is the same, and I take 3mg of melatonin. I eat an anti-inflammtion diet, and take one coated generic baby aspirin at night. I focus on keeping inflammation down.

[Autoimmunity]

Yes, but I can't remember what I did to change it - truly no pun intended!

My brain is not what it used to be, and I better get used to it never getting back there. I am also taking Topamax for epilepsy famously known for making people into village idiots...

Always remember taking my vitamins makes it much better. And cutting back on other drugs that are sedating - if possible. And getting enough sleep. Cutting back on stress is essential.

I am selfemployed and have a business to run - bad combo with a melted brain. So I am addicted to to-do lists and note books.  I am compensating with Evernote and Wunderlist on iPhone and my computer. I think I have the most crazy lists in the world... But whatever works...

I am also on topamax and can barely function.  Only taking 50mg, trying to work up to 75 mg, but I just cannot do it and work.  I have brain fog anyway from my autoimmune issues, but add in the topamax and I can't remember jack.  Or if I do remember, I immediately forget again.  That plus my severe fatigue, can barely stay awake, fell asleep at my desk, about to drop right now, I can barely get through a day.  I told my rheumy about my brain fog (before I ever started taking topamax) and was more or less ignored.  Don't know if he doesn't think it's a real symptom or just doesn't know what to do about it.  I seriously want to file for disability based on the fatigue and brain fog alone.  Either symptom alone makes working extremely difficult, to say the least

When did you start topamax? It took me 6 months to get used to it - but then it was a miracle on my temporal lope epilepsy.

After the 6 months it truly got way better - but then a year later Sjogrens hit.

If you're new on it, hang in there - it is a rough one, but if its the right drug for you it does get better!

I started sometime around May.  I went on my first vacation in like 6 years in June and drove to San Francisco and I remember I stopped taking it a week or so before hand because it made me feel so weirded out driving I wasn't going to put myself or others at risk on the road, especially since I had never driven there myself before.  I am sure part of it is I have brain fog from the several auto-immune diseases and it is greatly exasperated by the topamax.

[Autoimmunity]

I started Topamax after an Chronic headaches, severe cognitive dysfunction ...could not even read a book. Went to the ER Nov 2012, and stayed under the care of the consulted Neuro.
Felt the benefit of the Topamax within weeks. And was able to drive again, yes that is how bad it was.

Diane54 Check that the MRI is with Contrast. Neuro ordered one and it came back clean. Rheum added Dx of Fibro. Both SJS and Fibro can show brain/cognitive disorders. I hope you get some answers and relief.
The most help I have gotten was with the neuro, but, then the Rheum I see did not even give the cognitive issues a nod.

Autoimmunity I am at 75mg Topamax, we tried to go higher but I could not tolerated it. I take it in the AM.  To wean higher you can try taking the dose you tolerate in the AM and the higher dose at bedtime.
Topamax  does not address fatigue, which of course will keep you in chronic brain fog. The neuro gave me a small dose of Ambien. So now I get REM sleep, Google REM sleep, not all sleep is the same, and I take 3mg of melatonin. I eat an anti-inflammtion diet, and take one coated generic baby aspirin at night. I focus on keeping inflammation down.

That's weird, my doctor specified take it at night because it causes fatigue or drowsiness or whatever, although I am generally exhausted from the time I get up to when I go to sleep anyway.  I did get a prescription last year for ambien or some such, but after reading about people sleep driving combined with my narcolespy and weird sleep history, I chose not to risk that.  I didn't want the medication anyway and my doctor didn't listen to me and kind of forced it on me anyway.  I hate when I am saying I really don't feel comfortable with that and the doctor ignores me anyway.  This last appt part of the reason I went was because I have been having severe flares with my rheum. arthritis and have been ill and depressed and she went on and on the entire appt how if she had my job she would kill herself    Are you fricking kidding me?  Needless to say, I did not mention, nor get the opportunity to bring up my pain or my depression.     I will try this weekend splitting my dose of the topamax morning and night.  I am just completely brain dead on the medication and my work is making me train new people on a program that I just learned and barley know myself (a punishment? or I am just so smart and catch on quickly with my severe brain fog??  hmmm)..
Thank you!