Brain fatigue with CIDP

Hi Kazza, The brain fog gets better. I have found just before, during and for many weeks after my relapses I have brain fog really bad. It is getting better, it takes alot of work, like grade school homework, sudoku, puzzels and word searches have helped quite abit. It is common among GBS/CIDP people, don’t be too hard on yourself. I like to refer to those thick fog moments as My Pre-Senior Moments. It is real, not sure what causes it, but you do have to keep a positive attitude towards it and you need to laugh at yourself along the way. Take Care.

Kazza,
I have the same problem. Since I’m still teaching, brain fog can be “deadly” for a teacher in middle school. 😀 My doc proscribed Provigil. It works great. It keeps the mind “awake” but you are not “wired” nor is it addictive. However, it is expensive. Most insurance companies are going to want something in writing from your doctor saying the Provigil is medically necessary before they will agree to pay for it.

Do a Internet search for Provigil and check it out, than talk it over with your doctor.

Just in case you have a problem getting the insurance to cover the cost there is a generic for Provigil. The generic name for Provigil is Modafinil. Modalert brand Modafinil made by Sun Pharmaceuticals is fantastic value compared to Provigil. It is available in both 100mg and 200mg size tablets.

Jim C

I can relate to the “brain fog” and teaching….but I would call it more being “brain dead”… If someone yelled “fire” at the end of some days, I think I would just stare at them and go on sitting there… Things would just not “register” at these times… I also had the problem of trying to concentrate driving home (about 30 miles) and having trouble staying alert… I thought sometimes that I may just fall asleep at the wheel… Now THAT is really “brain fog” or whatever it is… Hmmmm..??? I wonder what the medical name is for this symptom..???

Aimee

Just blame it on the CIDP and the meds! Forget what you are saying in the middle of a sentence? Both. Worse for me is that I have not read a complete book since my onset…I used to read 4-7 a week even when I was working full time! I have trouble focusing on a newspaper even…I think it’s the touch aspect…fingers on page, turning page. Can’t feel page to turn it now.

Lucky for me, the computer screen hasn’t been a problem. I just wish there were more things available in plain old print to read on the net.

For me at first, I really don’t know which was worse, the pain or the medications for the pain. It took some tinkering, not a lot as for some to get what works for me to work. When I switched to my last med 2-1/2 years ago, I got my brain back. I’ll take pain killers when needed, but only then. I find now I only get ‘foggy’ when overtired, stressed or when I miss a pill. The last event is one I do NOT recommend.

Before I get tired here I am going to try and add to this. I have GBS so those of you with CIDP can not claim this all for yourselves. I am seeing improvement!

* Watching a movie when I first come home from hospital would last 10 minutes….now I can watch the whole thing. This is also why they invented the DVD! Stop….start….stop….start…..rewind!

* Reading a book……ever hear of condensed versions or books on CD? All these inventions have been made for us!

* I had his title changed from hubby to Chauffer I am just starting to drive more and more and longer distances. I actually like the idea of having a buddy to go shopping with. Friends don’t help you carry purchases into the house and put them away! Also, very seldom do my friends offer to pay for my shopping spree! What am I talking about it is groceries! 😮 Never before did I enjoy going shopping and buying groceries! I can not tell you the last time I read a store flyer for their next sale items. I have turned into my dog and am out the door when anyone says “Want to go for a ride?”

Guess it can be very depressing if you let it be. It is a fog, brain fart or gbs or cidp moment! I have to admit to combat this I have a Journal and I write down what I want to really get done that day……I give myself a week to get it done. I have become a farmer….watching the corn grow. I see that weed, the next day I see it has become taller, the end of the week it has roots that have reached China. I actually have been making it harder on myself, but I don’t have the concentration to respond to a thought. Hang in there, it does seem to get better! Now make a note for yourself to buy a Daily Journal! At first treat it with humor, it is still is there later mention it to the Doctor. That is the only way they learn what else comes with GBS and CIDP is when we mention it to them.

BRAIN FOG!!! Just the word I needed, and have been in need of for years! I really can relate to what most of you are describing – I don’t forget what I was going to say in the middle of a sentence, but for a couple of days this week I was feeling rather poorly, and I forgot the most peculiar things – or lost my consentration in the middle of doing things – like forgetting to put the lid back on the cat food tin and putting it back in the fridge. When I rediscovered it on the kitchen table, it was kind of a surreal experience, because things like this have never happened before. Heavy head with eye focusing problems is not something new – and I’m in the middle of such a bout at this very moment. It has been a strenuous and extremely hot day!

I’ve had this problem of brain fog for years and always blamed it on getting older and the increase of fatigue that appears to come with it. It’s been getting significantly worse since I came down with CIDP a few years ago but I still attributed it to age. Now I am starting to wonder if CIDP doesn’t make it worse. I also cannot stick with a novel anymore and turned to short stories or essays.

I think the brain fog is directly connected with fatigue because during the rare times my head feels clear I don’t feel fatigued. And the increased fatigue may be directly connected with our immune system constantly fighting to eliminate the myelin (or MAG in our case, Allaug), mistaking it for an intruder. Whenever we come down with a cold, we often feel fatigued also.

I won’t call it ignorance if you just try to find answers to things you don’t know, Kazza!

I don’t know if you’ll call it “extremely hot”, but 25- 30 degrees centegrade is hot to me – and I had to walk for quite a distance in a town where the sun was pounding down with no movement of the air whatsoever, I don’t know how effectively warm it really was, but too hot for comfort anyway. It was so nice on the way home to go by boat about 30 knots and then at last the air was moving and cooling me down a bit. My head was not working well for the rest of the day, though.

Geographically, Norway is about as far north as Alaska, but because of the warm water of the Gulf Stream (google it for more information) we, and the whole of northen Europe, has a much milder climate than other places on the globe at the same latitude.:)

All the best

your stress levels, what you do, or try to ‘overdo’ and also what other meds you might be on. This is an area that it might be best to work out carefully with your GP or pharmacist…and in all likelihood, THEY have not experienced anyone who is on your [our] combinations of medications and the IVIG-if you are on it.

In some ways, it might benefit to read about folks being treated with Chemo for cancers…they call it ‘chemo’ brain. Some of the meds we take do some similar things. We’re not alone in all this.

Don’t forget that our bodies have received one very big insult in our acquiring CIDP. They [the bodies] are trying to deal with a lot of new things…medications, functional changes, damage and attempts to heal. We as persons are confused…just imagine what is going on at the cellular [program] level? Maybe ‘Brain Fog’ is a way of our selves calling for a ‘time out’!

thanks for sharing. I thought it was me not handling things well…I took a loaf of bread out of the freezer sat it on the workbench and closed the freezer and went upstairs. Three days later a friend found the loaf of bread where I left it! I can’t remember so many things and it is so frustrating. At least I know I am not alone and the CIPD might be causing part of the problem.

I have started writing important things down!

Rhonda

Hi Kazza,
I deal with similar problems. I lose focus very easily. I am also very tired. I slur words lately and my spelling has worsened. Everything has changed lately because of CIDP. But I also think it might be because we are working ourselves harder and we’re tired. Also, if you’re taking a lot of new med’s, that could be the reason. I was pulled away from school as well. Hope you feel better and good luck with Law.
Jenn.