Brain Fog.....tell me about yours

I was newly diagnosed with Chiari a month ago. This was discovered by chance of having an MRI for tingling in my fingers/thumb when my head is titled backwards. They saw a thickened spinal ligament at C7(?), Chiair, and a syrinx. I consider myself lucky to have spotted this early without having noticeable symptoms. Or...are there?

I'm reading and learning about all this.... and sometimes I wonder if I already have symptoms that I would generally just blame on something else (or being old, or whatever). The more these things occur, the more it makes me wonder..... Is this what they're (Chiari sufferers) referring to?

I've had days where I wasn't as alert.... sluggish.... 'out of reality' kinda feeling. Hard to explain....usually, this feeling comes with a very minor headache. Nothing a pair of Excedrin & caffeine wouldn't fix. There are days where I've grabbed a soda with Caffeine to snap me out of it. And for the most part...it helped get me moving again (I am an active person anyway).

And maybe I've always had these symptoms, but its been a part of my life for so long...that I considered it being normal. I don't know.... That's where I'm puzzled to know the difference between Chiari or just being 'tired'.

What's your Brain Fog? How do you describe it....?? Is there anything you do (personally) to help you snap out of it?

Thank You for all the insight, information, and support. Words can't describe how much respect (sympathy, prayers) I have for those of you who deal with the symptoms on a daily basis. Thanks again

Jandy



hi jandy! i was the same as you, most of my symptoms i thought were normal until researching when diagnosed with chiari 2wks ago.

my brain fog i describe like this:
that weak feeling you get when you're extremely hungry.. but i know im not hungry because ive just eaten. and i dont feel "with it"

so weird huh?

Jandy, I'm super new to all of this, just diagnosed last week. My symptoms came on hard and fast and seem to keep progressing just as rapidly, if not faster, over the last week. One thing I have struggled with for years, despite my "gifted smarts" is hazy moments that leave me puzzled, and sometimes with very little memory of them. I never attributed it to anything, just figured that's how my brain worked. Lately, they've been more apparent, maybe just because I'm more aware, but definitely more persistent. I have only learned recently that typically mine are followed by a short burst of a headache and then I seem to be fine. I have a terrible short term memory and vague spots throughout my life. I struggle with remembering things like what my children looked like as babies and if I haven't seen a picture in a while I cannot recall :(.

Anyway, this makes me want to try caffeine during those hazy moments (where I feel I'm in my own world for short periods of time) to see if that would help.

Do you know if you sleep well at night? I've always been an extremely light sleeper so I don't sleep well. I attribute my "sluggish" days to this.

Just lost a bunch of typing. Yuck.

I've got two answers for you, one to your explicit question, and one to your implied question.
I, too, have minor symptoms for the most part. I don't do much for the brain-fog feeling. Sometimes I take Tylenol if it feels like a headache, sometimes I rest, sometimes I take a walk or an easy swim to see if that helps. Mostly I just wait it out.
Your bigger question seems to be how do I figure out if I need surgery if my symptoms aren't bad. I wanted to share my thought process, and also to recommend a test which certainly helped me figure things out a bit better.
I, too, have tingling in my hand as one of my minor symptoms. (I get some vague headaches, some dizziness these days, and recently some bad leg cramps.) One NS ordered an EMG (electro myleogram???) for me to investigate the tingling. There are a lot of reasons for tingling, and some is probably normal and age-related. He wanted to eliminate other possible problems so he didn't do an unnecessary surgery.
An EMG and a related test basically measure the speed at which signals travel along your peripheral nerves. There are two tests, one with little pads on your skin, and one with little needles like acupuncture needles. (Yes, it feels a bit icky, but only one needle actually made me wince. The peace of mind for me made it totally worth it.) The doctor and a technician use pairs of pads or needles, and a tape measure to check the exact distance between the two points. They know how long it is supposed to take for the signals to travel a given distance, and a range for normal results, and they have two sides of the body to compare. They can also test to see if your tingling is caused by something pinching a nerve lower down (like a tennis elbow) as opposed to a problem which starts in the spinal cord.
In my case, my tingling was pretty benign. But my test results were not. They showed that the problem was originating in my spinal cord. My MRI showed that my disks couldn't be causing the problem (the same symptoms and damage can result from a herniated or degraded disk). The EMG also showed cumulative damage to my nerves. The doctor told me the syrinx had been damaging my nerves for at LEAST five YEARS, and probably more like a decade. It also showed that in my left leg, where symptoms aren't as noticeable as my left arm, I am still in the normal range, but far below the nerve activity in my right leg.
This made the picture very clear for me. The syrinx wasn't new, and it wasn't a minor issue. It had been messing with my body for a long, long time.
Thus, I've decided to have surgery (on Monday, actually).
It seemed to me, for me, that the question was always "is my Chiari actually symptomatic?", not "are my symptoms something I can deal with?" For me, but not for everyone, once I understood that it is really, measurably symptomatic, that there is no possibility I am imagining or psychosomatically creating these symptoms, I wanted it treated. I know for sure I don't want this to progress, and it is my understanding that there is always progression, albeit sometimes very slow worsening of symptoms.
I don't think everyone needs an EMG, and I don't think everyone needs to wait for measurable nerve tests. But for me, with more minor symptoms (at least until the last few weeks), I found the decision to proceed with surgery much easier knowing I had this measurable result.
I hope this helps! Good luck to you, and to the rest of the crew, who suffers so much with this condition.

My brain fog felt like I was home inside my head but the lights weren't on. To me it was almost like a drunk feeling where things were going on outside of my head. I stopped driving before surgery because I couldn't focus enough to drive. I didn't find any medicine that actually helped.

I also had a lot of tingling in my hands and exruciating hip pain.

Hang in there! Many Blessings!

Diana

Not weird at all......but weird because I know the feeling!

I tend to have low blood pressure and low blood sugar, so I've always thought I needed some 'chocolate' to boost the blood sugar levels. Sounds like a good excuse for some chocolate eh? But actually, I never eat sweets. I might each chocolate twice a year (Easter & Christmas).


Gotta love it when you come up with your own methods of dealing with situations.....



bozzylozzy said:

hi jandy! i was the same as you, most of my symptoms i thought were normal until researching when diagnosed with chiari 2wks ago.

my brain fog i describe like this:
that weak feeling you get when you're extremely hungry.. but i know im not hungry because ive just eaten. and i dont feel "with it"

so weird huh?

I don't have any problems sleeping. I work swing shifts and that reeks havoc on the body clock. Some shifts I sleep more than enough 8+ and other shifts I sleep less than enough 6+ (each night). I can survive well on only 6 hours of sleep.



Nichole said:

Do you know if you sleep well at night? I've always been an extremely light sleeper so I don't sleep well. I attribute my "sluggish" days to this.

I assume you had the decompression surgery?

What did they do with the syrinx? Do they drain it? Or does it eventually drain by itself after you have the decompression surgery? I've read that there's another surgery to put a shunt in to drain the syrinx. How often is that surgery done?

Interesting about the EMG. I'll have to remember that. I can't say I want to pursue any further tests this year....but I know, I was instructed to get another MRI in a year to monitor the syrinx.

Thanks!



WhatsForDinner said:

Just lost a bunch of typing. Yuck.

Thus, I've decided to have surgery (on Monday, actually).
It seemed to me, for me, that the question was always "is my Chiari actually symptomatic?", not "are my symptoms something I can deal with?" For me, but not for everyone, once I understood that it is really, measurably symptomatic, that there is no possibility I am imagining or psychosomatically creating these symptoms, I wanted it treated. I know for sure I don't want this to progress, and it is my understanding that there is always progression, albeit sometimes very slow worsening of symptoms.
I don't think everyone needs an EMG, and I don't think everyone needs to wait for measurable nerve tests. But for me, with more minor symptoms (at least until the last few weeks), I found the decision to proceed with surgery much easier knowing I had this measurable result.
I hope this helps! Good luck to you, and to the rest of the crew, who suffers so much with this condition.

Sometimes I think I'm reading too much and should stop....

You mention hip pain.... My hip hasn't been 'right' since an accident I was in back in 2003.

My tailbone/butt started hurting 2 weeks after the tingling started - and that was mid April. I've had 10 days of Prednisone and the tailbone hasn't gotten any better. Kinda stayed the same (hurts when I get up). I have an appt on July 30th to have the ol' female plumbing inspected......lol - so I'll have to mention that to them at that time.

2012 hasn't been my year....... rarely do I meet my deductible!!! LOL

Diana Smirl said:

My brain fog felt like I was home inside my head but the lights weren't on. To me it was almost like a drunk feeling where things were going on outside of my head. I stopped driving before surgery because I couldn't focus enough to drive. I didn't find any medicine that actually helped.

I also had a lot of tingling in my hands and exruciating hip pain.

Hang in there! Many Blessings!

Diana

I'm having decompression and duraplasty on Monday.

I've been told (by three different NS) that with a syrinx, they don't drain it, but they wait for decompression to do its magic. I still don't have a sense of how long one waits for resolution.

I would encourage you to ask about the EMG if you have tingling and weakness. With both syrinx and Chiari, scuttlebutt on this site seems to be that size and symptoms don't correlate very strongly. If yours changes and gets bigger, that is more of a problem, which is why they suggest monitoring the syrinx.

My syrinx is tiny, only two millimeters wide, and about 2 1/2 inches long, in my cervical spine. Even though it is this small, it apparently has been wreaking havoc for "decades", according to the first words out of the doctor's mouth, certainly at least five years.

So, if they see a tiny syrinx, and you have tingling, you might also have real, measurable stuff going on which is caused by the syrinx. Yes, if it gets bigger, that seems bad. But even tiny things can apparently be trouble.

Hang in there! And good luck with swing shift sleeping. I don't think I would like that very much!

Good Morning, I too suffer from the "brain fog"feeling, it feels like I just can't focus or concentrate and I know that I'm not alert and usually have a bad headache along with it. I just try to rest and wait it out, not move around too much because I'm inclined to fall or bang my head on something. I haven't driven for about three years now as I know that I just don't have the concentration anymore. I was diagnosed 3/29/12 after going to the ER for a concussion (my second bad one in the past 3 years). I'm having very bad headaches, short term memory loss, terrible balance and dizziness- made worse upon looking up or turning around, motion sickness in the car or moving too fast, the tingling fingers, sensitivty to noise and bright lights and foggy, cotton ball head. I've been out of work since the end of April and am trying to retire now under disability as the neurologist and my primary made the diagnosis of permenatly disabled on 6/26/12. It's all just been very stressful, but at least I now know why I've always been so clumsy, falling and getting hurt at times. Good luck to you, I'll keep you in my prayers and thoughts:)

Aveet

I wish all of you the best of luck in your upcoming surgerys. To answer your question about the syrinx, yes it closes up over a period of time after surgery. I had my surgery May 2011 and my surgeon said that my syrinx closed. I still have brain fog some days i feel as if i can barely make it i be so tired i dont know if it was from working long hous or chiari but on those days all i do is sleep.

Aveet,

This might sound odd - but don't keep me in your thoughts & prayers....save those for YOURself!!! I'm sending you some prayers, blessings, and some courage to keep your head & chin up. It is scary to see the things that people are going through with this.

Have you had surgery? If not, it certainly sounds like you should!!!

Good Luck to you and I hope you can get some relief.....

Jandy


aveet said:

Good Morning, I too suffer from the "brain fog"feeling, it feels like I just can't focus or concentrate and I know that I'm not alert and usually have a bad headache along with it. I just try to rest and wait it out, not move around too much because I'm inclined to fall or bang my head on something. I haven't driven for about three years now as I know that I just don't have the concentration anymore. I was diagnosed 3/29/12 after going to the ER for a concussion (my second bad one in the past 3 years). I'm having very bad headaches, short term memory loss, terrible balance and dizziness- made worse upon looking up or turning around, motion sickness in the car or moving too fast, the tingling fingers, sensitivty to noise and bright lights and foggy, cotton ball head. I've been out of work since the end of April and am trying to retire now under disability as the neurologist and my primary made the diagnosis of permenatly disabled on 6/26/12. It's all just been very stressful, but at least I now know why I've always been so clumsy, falling and getting hurt at times. Good luck to you, I'll keep you in my prayers and thoughts:)

Aveet

My thoughts and prayers are with you - I hope the surgery goes smoothly and gets you the relief you need!!

I'll keep the EMG in mind and I'll keep reading and learning and praying for everyone else to get relief!!

Good Luck!! Keep us posted!



WhatsForDinner said:

I'm having decompression and duraplasty on Monday.

I've been told (by three different NS) that with a syrinx, they don't drain it, but they wait for decompression to do its magic. I still don't have a sense of how long one waits for resolution.

I would encourage you to ask about the EMG if you have tingling and weakness. With both syrinx and Chiari, scuttlebutt on this site seems to be that size and symptoms don't correlate very strongly. If yours changes and gets bigger, that is more of a problem, which is why they suggest monitoring the syrinx.

So, if they see a tiny syrinx, and you have tingling, you might also have real, measurable stuff going on which is caused by the syrinx. Yes, if it gets bigger, that seems bad. But even tiny things can apparently be trouble.

Hang in there! And good luck with swing shift sleeping. I don't think I would like that very much!

Thanks!!

I guess the syrinx stays there or gradually drains itself....

I guess once you have damage to the nerves, it probably doesn't heal up over night but takes some time (or not at all).

My thoughts & prayers are with you.....

Thanks!

Jandy



Tradee30 said:

I wish all of you the best of luck in your upcoming surgerys. To answer your question about the syrinx, yes it closes up over a period of time after surgery. I had my surgery May 2011 and my surgeon said that my syrinx closed. I still have brain fog some days i feel as if i can barely make it i be so tired i dont know if it was from working long hous or chiari but on those days all i do is sleep.