Understanding Brain Fog

[Kyler]

I am requesting everyones help-the more explainations the better. I don't have POTS and my 12 yr old son just got diagnosed in June. He struggled thru school all last year - very uncharachteristic- and it got worse as the school year progressed- as did his POTS symptoms that led us to this diagnosis. He has had mild sympyoms for 5 years but growing 4 inches in 4 months made it much worse.

He is starting school again in August and I just did a 504 plan for him and hopefully I covered everything but what my husband and I are trying to decipher right now is what is "brain fog" and what is 12 yr old forgrtfullness/not paying attention. We are trying to balance understanding this condition with trying to turn him into a productive member of society in the future.

We have never felt this and we need to figure out when to hold him accountable and when to hold the POTS accountable for the "I forgot" line. I feel really bad for grounding him for his grades last year when he really may have forgotten his HW by no fault of his own all the time. We are starting to recognize good days and bad days and triggers but there is very little concentration and memory needed for the summer.

If anyone can describe the feeling of brain fog and the varying degrees of forgetfullness so that we can understand it better we would greatly appreciate it.

12 year old boys apparently aren't good at verbalizing feelings and symptoms - it's been interesting --- "your crazy Mom - I can't feel my heart beating 200 times/ minute" or " I don't feel pale" LOL.

Thank you in advance for your help. You all are wonderful and I pray for all of your trials and that God blesses you the way that you have blessed us with support and comfort.

Serena aka Kyler's Mom

[EarthMother]

By all accounts I am a high-tech-geek. I could debug my way out of a complex subroutine back in the day ... and I still can every now and then on a "good day". But when I am standing up ... there are times I can't even remember the word REFRIGERATOR as I try and ask one of my kids for help. Those of us with POTS are operating like a car that is down a quart of oil. We simply aren't getting the blood everywhere it needs to be ... and much of the time that is to our BRAIN!

Before I understood for myself the nature of this illness, I would beat myself up all the time for not being able to do things. I bought in to all those lies about "not trying hard enough", "not pushing myself further" and worse "its all in my head." Then as I would experience a good day here and there, I realized that when my body is not fighting gravity I can do simple things -- but when I am in the throws of POTS simple things are simply impossible.

As a mother I know you worry about finding a balance of compassion and discipline ... but to err on the side of compassion is never a wrong move (in my humble opinion). This disorder will teach your son more about gratitude, commitment, perseverance and patience than perhaps any other life event. Not to worry he is most certainly going to become an amazing adult -- and deep bow to you for being an attentive mother, asking questions, questioning the answers and being flexible to change gears as many times as needed to meet the all the changes he is going to encounter.

[Dawg Tired]

I used to be a nurse. Fortunately, at the time I became ill, I was an insurance nurse and not working on patients. I would be sitting at my desk and suddenly space out. I quit driving (BEFORE diagnosis) the second time I found myself driving down the road and had no idea where I was. Actually, I was on my way home from work both times - really fortunate for me, I was able to call Hubby and he knew the roads around Billings, Montana well enough to direct me home.

One morning, about 4am, I woke up and had no idea where I was - who I was - who was in bed next to me... I needed to use the potty and I had NO idea where the bathroom was. I was scared out of my mind. Gradually, things started coming back to me. But the episode made me understand why a person with amnesia would wander away from home and be lost.

Our brains don't get oxygen and we kind of lose consciousness while we are technically awake.

Mine didn't get better with my pacemaker or any other treatment.

Brain fog is one of the worst symptoms of this condition.

[somemonkey]

If I'm standing, I might as well be sleeping. I never remember anything while standing.

[chipper]

Oh my!! This is a hard one. My heart goes out to you and you son. Is home schooling a possibility until he gets better? My daughter had a very difficult time at school. Her symptoms did not seem bad enough for home school, but knowing what I now know, I would have managed many things different.

Blessings, Mary

[mjan]

What a great mom you are for caring so and seeking ways to help your child. Of course!!

Couple of thoughts: Brain fog does not have to be permanent. It fluctuates like other symptoms.

ANd what I learned is that I needed to REST..WRITE THINGS DOWN..REST or do mindless things

and tell others to help me remember.

AND I saw this amazing nutritionist who could help eliminate the toxins and find out WHERE in the brain

I was on overload=inflammation. When it was really bad..taking a course of prednisone helped reduce the inflammation.

But the nutrtional response testing could figure out what EXACTLY my brain and systems needed and he built up me up.

NOT all nutritionists have this tool NRT or know anything about it. Some CHiropractors have this training. All I know is that my 2 neuros were SOOO impressed that they would tell me to see him again.

So perhaps asking his school to give him a quiet time or nap to rest his brain..AND asking teachers..students to assist him in remembering what to do etc. could make this bearable.

AND not to blame everything on our illnesses. WE CAN LIVE with this stuff.. and improve our abilities.

God Bless you in your discovery..

Warmly, Jan

[DADofPotsSon]

When my son #2 was about 18ish and in a deep POTS hole, I can remember him sitting in a chair looking at his shoes on his feet and holding his shoe strings saying "I can't remember how to tie my shoes, can you help me"

I was really shocked at his very sincere question!

When he was 19 in college and a freshman he had to set an alarm for each class and use a calendar to remember which class to go to, yep all thru the day and every day of the week.

It does pass, it just takes a little time, along with salt, water, proamatine, and metroprolol. This year he was a senior at college and he was captain of the Concrete Canoe team for the Civil Engineering students, and they took 13th at the national competition.

DADofPotsSon

[firewatcher]

Bleh...Brainfog. I hate that part. To me it feels as if I used to know something that just isn't there anymore. I have gone to the grocery store and driven home only to forget where I had been and let all the food spoil in my truck. I have forgotten my children's names. I have forgotten my telephone number and address. I have been cooking and gone from the stove to the pantry and forgotten what I went there to get. I even got to a point (really bad!) where I was incapable of reading; I saw the words on the page, but they made no sense to me. It comes and goes. Rest and hydration are the best for me. I also get crazy narrow pulse pressure on standing and that is usually when it is worst.

Has your son tried compression garments. They help. I'm not talking about the hose, but more like bicyclist's compression shorts? Much cooler for the guys than ladies' hose!

To help with school, make him lists! He may have to go through them four times to make sure he's got everything, but they help me.

[Dawg Tired]

My Blackberry is my best friend - it tells me when to take my meds, it holds MANY lists and it is my calendar. When I leave the house, hubby or David check me to make sure I have it on me. I have my "ICE" (In Case of Emergency) numbers in it. I also have a Medic Alert bracelet.

[ramakentesh]

Brainfog is pretty unpredictable and every patient is different. Id cut him some significant slack - I didnt get POTS until I was 26 - but I would have struggled to finish study with it.

There are periods where POTS in most patients is severe enough for us not to be able to think straight at any time - sometimes for weeks, and in a bad crash, months.

[flop]

I am the type of person who was always top in school, got excellent exam grades, went to a top university and got a first class honours degree. I am also dyslexic so used to having to work hard to overcome educational difficulties.

when I first developed POTS I was having a lot of fainting episodes but functioned fairly normally in between (if i didn't try to do too much). I could go to work and have normal concentration.

Over the years my symptoms have changed, and I at least partially blame chronic tiredness for some of my problems. I just find that my brain doesn't hold information well.

For example I am in the process of buying a house at the moment. My solicitor has posted to me lots and lots of paperwork to do with the sale, surveys, mortgage paperwork etc. I can sit down and read the stuff but I can't think about it properly or remember what I have read. Trying to make a "to do" list for myself about the house purchase is a nightmare. I have managed to get through it all in the end with the help of highlighter pens, notes in the margins and copious lists. I had to make sure to do this work when I was feeling at my best, rested and well hydrated and sitting in a chair with my feet up on a stool.

Lists and beepers are the way to go. Without my diary I would be totally stuck - I must look at the page a dozen times a day as I no longer trust my memory. If i don't write down things like "library CDs due back" in the diary I will forget to go to the library and end up paying loads of fines for late returns.

If you son has had a full year out of school, have you thought about him taking fewer subjects at least for his first year back? If he had gaps in his timetable and had somewhere quiet that he could rest / sleep between classes it might help him achieve better grades in the classes he takes.

Good luck,

Flop

[persephone]

Ditto what Flop said. I have am now doing a PhD.

Every day in life I lament the loss of a fully functioning brain. I could have WALKED this PhD if I'd done it before my POTS symptoms emerged. Now I struggle to even remember what books I should read, let alone managing to actually read them.

I'm currently at home with my parents, and my mum has revealed that she thinks I'm lazy and not bothered about doing things. Even though it seems that way, I just can't remember what I should be doing. I need prompting.

I have to say though, my medication doesn't help. I've been told that EPO/PROCRIT can affect memory and cognition...

I would say, encourage your son to do more, but cut him slack at the same time. Don't be too soft though- don't let him give in to the illness! Otherwise things will only get worse

[vemee]

My iq is in the top 2 % of the population but you would never know it. Sometimes everything works as it should but most of the time I have trouble concentrating on the simplest things. I stand up to do something and by the time I am finished standing up I forget what I stood up to do. I can be a pretty good writer but most of the time it is hard to construct sentences that adequately depict my ideas. When sitting or standing a long time I can come across as just plain stupid. My speech also suffers when I go searching for words or lose track of what I am saying and veer off subject. I also have times where I slur and say only part of what I am trying to say which means nobody knows what I am saying. Yeah, I belong to Mensa but instead of bragging about it I say it only to show the effects of this condition and how it has severely limited the abilities given to me.

[ramakentesh]

My specialist has seen over 200+ POTS patients and he said that they were all either overachievers or highly intelligent. This POTS really reminded me of that fact. Lots in the medical industry and lots with very impressive academic qualifications.

[mjan]

My specialist has seen over 200+ POTS patients and he said that they were all either overachievers or highly intelligent. This POTS really reminded me of that fact. Lots in the medical industry and lots with very impressive academic qualifications.

Are you then discriminating against stupid people? LOL. Just kiddin..cuz I feel stupid at times.

Jan

[ramakentesh]

I said it was because only the smart ones are able to diagnose themselves and push for a specialist appointment.

[firewatcher]

"I said it was because only the smart ones are able to diagnose themselves and push for a specialist appointment."

I wonder how many others (regardless of IQ) are misdiagnosed or not diagnosed at all and just live with this! Many of us ARE here and diagnosed because we knew that what we were being told was not right and pushed for answers.

[Kyler]

Thank you all for your wonderful responses. It really helps me to understand what Kyler is going thru. I will definitly take your advice about lists and I think that designating an assistant in each class will help him to remember to write things down as well.

What you all say about how intelligent you are but this "hides" it - that is exactly what happened to my son last school year. He went from excellent test scores without having to study to bombing many of his tests. I had many many parent teacher conferences and I discovered that part of the problem was simple like miss bubbling the bubble cards (I hate those things) so he would get the first 15 questions right and miss all the rest. They were nice enough to rescore them and he would get "A"'s in the end. In rembrance of that i put it in his 504 plan that he will not have to do bubble cards anymore-they take a significant amount of concentration and makes a test take twice as long. I couldn't understand how he knew all the answers while studying at home but then he would get a low score on the test even without the bubble cards and now I know why.

He is such a dynamic intelligent child and I just hope that being medicated and hydrated will help this school year.

It's rathers funnny that you said that the smart ones diagnose themselves and push for a specialist. I met a girl yesterday while i was teaching CPR and she told me that her friend had similar symptoms to POTS and NMH/syncope. She went to the same cardilologist that I took my son to first (the ignorant one) and they did a TTT and dignosed her with a "disorder of inconveniance". NO OTHER NAME. WOW. I guess it is inconvenient but really they stink at what they do and I am going to tell them. They deperately need education. I gave her my son's POTS specialist's info to give to her friend.

[bizbiz]

I think for me what firewatcher said really sums it up perfectly: that "it feels as if I used to know something that just isn't there anymore."

It is very frustrating, and I think a lot of us would agree that it is one of or even the most annoying symptom. Sometimes when I am talking with my girlfriends it is like their words are just flying over my head, and I feel like saying "what what what!!??" I feel very confused and need a few seconds longer than usual just to process what they have said. Even thinking is very tiring, and sometimes halfway through a conversation or explaining something to someone I just feel like stopping and saying "don't worry about it" because it is just to much energy to think and talk.

I have also become very forgetful and indecisive.

Also, Dawg Tired mentioned that a few times she would wake up and not know where she was etc. That happened to me a couple of times in the begining too.

[ramakentesh]

By the end of the day im super forgetful and cant process anything - I have to check things at work numerous times because if I dont chances are Ive forgotten to do something.

[RIfainthearted]

I have brain fog but don't know if it's from the POTS or ADD. Since 1974, I have taken a nap (usually 2 hrs) every day, except when I worked full time. I find that after a few hours of being awake, my mind is either racing or in such a fog that I can't think straight. You might want to research some of the strategies used to help teens with ADD. They are very useful for getting organized, following through on things, etc. I know of some good books if you're interested.