Dealing With Brain Fog

[Elfie]

Hey everyone,

I have one semester below my belt at my new college. It was really difficult adjusting to a totally different situation and trying to do well in classes. One of the things I seem to really struggle with is brain fog. Unlike my other college where I was able to set up classes where I only had to go in three days a week and had time between classes, I haven't been able to do that here. Before I was able to get to classes early and sit and let some blood get back to my brain before instruction started, and also had a couple of days a week I was able to study without having been out and about and on my feet.

I commute 45 minutes one way. The college schedules courses in the same classroom 5 minutes apart. So, you can never get settled in the classroom more than a minute or two before instruction starts. Even with handicapped parking, I often have to park several buildings away and come early to get a space. There is no seating in the halls and they are narrow and I have been stepped on several times sitting on the floor. Needless to say, I am dizzy from walking/standing when I am in class.

Then I am also having problems with studying. After a day of running back and forth to classes and doing errands on campus, let alone if I have to go to a doc appt or run an errand in town, I'm often dizzy enough that studying is nearly impossible. I was working out two days a week and after I came home those days I just couldn't seem to function mentally. Now my doc wants me to start doing it 5 days a week.

I honestly don't have any ideas about how I am supposed to deal with this brain strain, and the doc has been no help. I have spoken to the disabilities service office at the college, but they weren't able to do anything about any of the problems I listed, since they would be major undertakings for the college.

[samannran]

Have you tried Provigil? My doctor gave me samples, and it worked great. Unfortunately, my insurance wouldn't pay for it, even after appealing with my doctor's help, since I don't have narcolepsy. It's very expensive.

[Connie]

Sam,

Have you tried the Nuvigil? Some insurance companies will pay for it. It might be worth a try to see if it helps at all. They are used to treat the same thing - narcolepsy.

Hope

[samannran]

I haven't tried it. I will check into it. Thanks!

[Elfie]

Thank you both for the information. Sorry it took me a few days to reply, but I am sure you all know how it is. I know some others use these type of medications, but it isn't something that has ever been discussed with my doctor. I may have to mention it at my next appointment at the beginning of February. Were your experiences good in general?

Anybody have anything else that helps with brainfog? Even behavioral type stuff? I'm not only looking for solutions, but perhaps understanding the causes of it in us POTSY's as well because any info of that type might help my doc (cardio, some POTS knowledge, but restricted outside of cardiac/circulatory symptoms) understand and provide help.

[Sallysblooms]

Do you have a good doctor like an Integrative MD that knows about supplements? Mine told me about Carniclear, liquid carnetine. That and CoQ10 have taken care of my brain fog. It is great. Find out about these and ask your doctor about the right brands and doses.

Also, using a wheelchair is very helpful when going back and forth. I use mine sometimes and other times I do not need one. Just another tool to help.

[hilbiligrl]

Hello there!

I have meant to respond to this many days earlier, and other posts, but my doc appts and generalized confusion and much need to lay flat and rest has been overwhelming. So glad that sallysblooms mentioned those 2 products, they sound promising, as i have had sever brain fog for almost 2 years now. I am now jotting them down, as i have a notebook of things that need to be tried/tested with my new integrative doc.

I didn't really know what to suggest, but I wanted to let you know that tried so hard to stay in college and fight this disease i have (which was not diagnosed at the time). I missed lots of morning classes, was late to alot of them and missed others.... and had to reschedule many tests for the evenings, as morning time has never ever worked well with me. Luckily, starting college at the later age of 28, my friends were mostly my professors. Each of my professors knew i was battling something and knew i was sick alot. And since I was able to 'teach' myself and come in to take tests and performs labs, and keep my As. If it weren't for my professors who where so compassionate and understanding... i don't know how i would have gotten through and I am most sure I would not have been able to keep the As. Even some classes that 'required' attendance, they were able to use me as an exception, because my professors knew I bought other books as well as solutions manuels to help me 'home study' when i couldnt make it to lectures.

Right before i had to quit school and work abruptly, i was getting sicker and sicker and my 2 semesters in 2009 where treacherous, being that, parking was horrible and I was having to walk 20 mins to school up and down hills. Then having to walk up and down many steps. OMG, just to get to one class, i would totally park my butt outside the door of the building and try like heck to rest, breath and be able to go in. Worse, came to worse and these classes, i just missed 70-80 percent of them and take tests and finals late. All professors were understanding, as i had doctor notes, doctor explanations, etc. At that time though, I was just starting to notice the brain fog. And i would try to take pills that boasted about improved cognitive focus, memory and concentration, but nothing helped and well, i had no idea what was going wrong, and nor did the docs.

I got worse fast, and had to quit school (6 mths away from undergrad degree and i was already accpeted as an alternate to pharmacy school)..... then immediately i had to quick work after 4 years at cvs pharmacy as a tech. That was on oct 2009 and i've been bedridden (75-100%).

I am hoping wat sally suggests will help, as I am going to mention this to my new integrative doc in 2 weeks and see if the can work for me. It is the brain fog and cognitive abilities that really bothers me alot.

Just letting you know that I understand, I have no idea what would be helpful, but i understand and I hope someone finds some help for you soon.

bountiful blessings each of your's ways

hilbiligrl

[Elfie]

Thank you both for posting!

Sally- I don't have a doc that is good with that sort of thing. We have a neurologist in the area that is renown for it, but my experiences with her have been negative. She wasn't able to find any deficiencies and we also tried a elimination diet for 4 months. She seemed to get very frustrated with me because of her theory of medicine being very integrative. I did not do well on the elimination diet or any of the other changes she made. I kept having to increase my calorie intake and still was constantly fatigued when I was eating good fats, a variety of veggies and fruits, brown rice based carbs, and lean meat. I lost 14+ pounds in 2 weeks that I didn't have to lose (I was 5'8" and 130 pounds of mostly muscle). I am considering going back to see her though, because I know many forumites have had success in some way with supplements or modifying their diets. Do you find that using your wheelchair and avoiding the standing/walking helps prevent brainfog and other lasting symptoms-- at least before doing something that requires lots of braincells?

Hilbiligrl-- Thank you for sharing your experience with me. It sounds like you have been through quite the ordeal, and I totally relate to some of the experiences you described. I started my semester today and I can already tell I am going to be in for it! This is one of my last semesters and I have many classes that are highly discussion based, and small. Professors that have always been able to work with me have told me that there is no way I will be able to pass the courses unless I can keep my attendance up. I really struggle with walking to courses and then sitting down and having to speak! I never had a problem with public speaking in my life, but POTS is making it the bain of my existence. I have gotten very slow if I have been standing or done anything up and about prior. I sound really dumb, lose words, and have recently started stuttering-- oh joy! Hopefully I will be able to get through it.

[persephone]

The brain fog can be caused by cerebral-hypoperfusion: in other words, not enough blood and oxygen reaching the brain. Do you find you can work better lying down? Do you get pain where a coathanger goes- in the neck and shoulders? These are hallmark signs.

I'm not sure what helps specifically. One of my doctors is now suggesting rowing in the gym because the forward lunge could help cerebral perfusion.

I know what it's like to struggle- I've been in college since I was 19 and I'm now 29. I'm working on my PhD and nothing is more disheartening than when you want to work but can't.

It's a shame that your University won't support you. My only experience of a US University was an ivy-league on the East Coast where I was meant to spend a year but they were so unsupportive of my needs and my health that I had to be airlifted back to the UK by air ambulance as I got so sick. I was shocked at the discrepancy in care standards between UK and US educational institutions. IT was a horrific experience.

In the UK, there is a government funded disabled students' allowance which can fund assistive technology and equipment. They key things I've had through this which have helped include:

1: laptop with assistive software- for example, it can read my pdfs to me if my head hurts and I can't look at the screen

2: ergonomic chair for library which reclines and has a foot support to keep my legs elevated: this is a HUGE help and could be useful in class for you if you're still having classes.

3: personal assistant to fetch and return library books to conserve my energy

4: permission to drink in the library so as to avoid dehydration

From what I can gather, these things can be provided by a US university but in my experience, they simply weren't interested: I told them months in advance what I needed, they told me it wold be fine but they effectively did nothing. Thus ended my forays into the US University system! It was a very difficult time for me, and if that's how an Ivy League behaves, when they have unlimited financial resources and pride themselves on accessibility, then I dread to think about the behaviour of universities with less financial assets and a less open-minded approach.

Good luck- I wish I could do more to help. I just couldn't survive in a US University. I think it's quite telling that over here I can be a successful PhD student, but in the US I was given no help of any kind.

[Sarah4444]

I think doxepin is helping specifically with my brain fog - not sure yet, so many symptoms and meds, still working on it...

[Elfie]

Persephone, I have a feeling that most of my symptoms come from the "lack of blood to my brain" issue. I don't have coat hanger pain, but I am definitely more mentally clear when laying entirely flat. Propped part of the way up is better than nothing, but I often can't sleep when I lay down for bed because my mind is significantly clearer and I start thinking (of course, this is near impossible to do while reading, writing or studying). I need to learn to keep a notepad next to the bed, because of course if I have to get up I loose all the information I come up with. I also generally don't have low blood pressure, even when I am dealing with being extremely dizzy and feeling faint. My body seems to compensate for a long time and then I will suddenly tank and faint. Activities that spike blood pressure in normal people can sometimes clear it up (very temporarily) as well and I have migraines from changes in blood pressure.

I'm sorry you had such a bad experience with American universities. My first experience with disability services was absolutely horrible, so what I am going through now is actually a big improvement. Your accommodations sound great. Our library allows all liquids with a lid, so at least I don't have to fight that one, but I have had to before with computer classrooms. One of my biggest issues on campus is the lack of places to sit! Other than classrooms, there are no lounge or study areas in any of the buildings except for the Student Union and the library. I can't hike halfway across campus to be able to sit down, let alone put my feet up. That would be great to be able to do! Another big issue is presentations. Most of my profs require powerpoint for oral presentations-- but all the materials (including the computer, ect) are set up at standing height. I have permission to sit during presentations, but there isn't a place to sit. I have asked for counter-height stools in my classrooms, but was told that I would have to provide them. I have a folding stool, but I cannot carry it to class although it truly isn't very heavy-- I just have symptoms when I lift or carry things when standing. I need to look over my accommodations from this past semester prior to my appointment.

Sarah-- thank you for the info on the doxepin.

[Serbo]

Hi - Can someone describe brain fog to me please, like what does it feel like? Thanks

[jangle]

.

[ramakentesh]

spiking BP works wonders - but its hard to sustain. Caffeine only lasts a short while. Florinef and volume loading can also help. Saline is the best.

[kclynn]

Interesting topic. My son is 16. He goes to school part time but this fall his brainfog became so progressively worse that daily he was having trouble understanding the simplest of directions. He said it was like someone speaking a foriegn language. Plus he couldn't form words or thoughts. In addition he sometimes gets "loopy" or giddy. Thank goodness I have already warned the school that he may act intoxicated because to someone who doesn't know that is how he appears. He has had to endure some bullying as a result and things became desperate. At that point we pursued some medical relief. Beverly Karabin had suggested some medications to discuss with his primary care doc. She prescribed Focalin XR which is similiar to Ritalin. The difference for him has been nothing short of miraculous. He can focus, is clear thinking, is back to being able to progess through his algebra. It lasts about 12 hours and we can tell when it wears off. We really hated to add yet another medication but so far (and it has only been since Christmas) this has been a success. He is on the lowest dose.

Jangle, t

he cerebral hypoperfusion certainly explains some of his symptoms and when the giddy symptoms occur laying flat on his back, feet up, definately helps in about 20 minutes to an hour, but doesn't help a lot with the more generalized brain fog as it occures during times when he has spent times sitting in a recliner with feet elevated or even laying flat. Would the reduction of neurogenesis be an influence here. His brain fog is severe, yet the Focalin clears it. I don't think the Focalin is acting significantly on his circulation or blood pressure.

Elfie,

here is a link to a publication by Dr. Grubb you could copy to take to your Dr. where it describes using these type of meds (ritalin, etc...) in patients for pots. The list of meds is on page 4 I believe. You could try it. I think you would know very quickly whether it would help or not.

http://circ.ahajournals.org/content/117/21/2814.full.pdf+html

[jangle]

Interesting topic. My son is 16. He goes to school part time but this fall his brainfog became so progressively worse that daily he was having trouble understanding the simplest of directions. He said it was like someone speaking a foriegn language. Plus he couldn't form words or thoughts. In addition he sometimes gets "loopy" or giddy. Thank goodness I have already warned the school that he may act intoxicated because to someone who doesn't know that is how he appears. He has had to endure some bullying as a result and things became desperate. At that point we pursued some medical relief. Beverly Karabin had suggested some medications to discuss with his primary care doc. She prescribed Focalin XR which is similiar to Ritalin. The difference for him has been nothing short of miraculous. He can focus, is clear thinking, is back to being able to progess through his algebra. It lasts about 12 hours and we can tell when it wears off. We really hated to add yet another medication but so far (and it has only been since Christmas) this has been a success. He is on the lowest dose.

Jangle, t

he cerebral hypoperfusion certainly explains some of his symptoms and when the giddy symptoms occur laying flat on his back, feet up, definately helps in about 20 minutes to an hour, but doesn't help a lot with the more generalized brain fog as it occures during times when he has spent times sitting in a recliner with feet elevated or even laying flat. Would the reduction of neurogenesis be an influence here. His brain fog is severe, yet the Focalin clears it. I don't think the Focalin is acting significantly on his circulation or blood pressure.

Elfie,

here is a link to a publication by Dr. Grubb you could copy to take to your Dr. where it describes using these type of meds (ritalin, etc...) in patients for pots. The list of meds is on page 4 I believe. You could try it. I think you would know very quickly whether it would help or not.

http://circ.ahajourn...4.full.pdf+html

I'm not entirely certain what's going on, I'm just forming a hypothesis from what I know. I do know however, that ritalin is actually considered very successful in treating POTS, perhaps through some unknown mechanism (though some speculate that it works through its vasoconstrictive properties.) if Focalin is a lot like Ritalin then perhaps it also is working through this mechanism.

I do know that reduced neurogenesis in the hippocampus is now seriously being considered as the primary etiology of depression. With depression there can be all sorts of cognitive dysfunction ranging from brain fog to stupor.

It would make sense that if we do suffer from reduced cerebral perfusion then that would have a direct impact on the survivability of neurons growing in the hippocampus and could through that mechanism produce depression and cognitive disturbances.

Luckily we can regrow neurons in the hippocampus through the mechanisms I listed above.

Also if his POTS is being caused by hypovolemia (reduced blood volume) then it could also be possible to still have brain fog from reduced perfusion while lying down (although it should be a little bit less).

[kclynn]

Thanks, Jangle. All I know is that it is helping so much. I just hope it lasts. I think our experiences are the same as many. Meds may seem to work for a time, then either you figure out it really wasn't or the body adjusted to it too quickly and it isn't working any more or as well. We are cautiously optimistic

[Serbo]

thanks all, but subjective as it is, please can someone tell me what their experience of brain fog feels like?

e.g does it come with fatigue, could you still exercise with brain for for example? Is it constant, or if yu were to engage on some work or with some one in conversation would it go away? Do you feel a disassociation to stream of thought? Just want to get a handle on what it feels like.

Thanks

[jangle]

I haven't really dealt with brain fog as I think others are alluding to. I can still think and function cognitively like I used to, but I do notice I've lost interest in things I used to be interested in. It's difficult to be motivated to think about anything when you're in pain. Therefore I find my mind blank most of the time, but when I do get motivated to think about things I'm generally ok. In the past I have noticed difficulty with losing my train of thought (when I was standing or sitting down) like I would have a stream of thoughts and then I would forget what I was thinking about and couldn't retrieve it. Also my working memory (things that happened a few seconds ago) seemed to be impaired. This persists still to some extent but it's not as bad as it used to be.

[peregrine]

I have one thing that sometimes works for me, which is playing the card game Set (basically a solitaire game where you try to match patterns). I carry a set of Set cards (hee!) with me in my backpack whereever I go.

About brain fog... here is a description of mine during a meeting today; let me know if it makes sense from a subjective point of view.

We start the meeting (3 of us in one room, all with laptops) and I am on the ball, working on explaining to Person 3 what Person 2 and I already know. We're running suggestions back and forth and staying on topic. This goes on for about 30 minutes. A few minutes later, despite being in a conversation with two other people in very close proximity, I begin to space. My focus is a bit blurry, I have a very mild headache, but I just can't figure out what is happening in the meeting. I have trouble following what Persons 2 and 3 are saying, want to switch topics so I can feel a bit more engaged, and start looking at my computer and playing a computerized version of Set to try and refocus. When Person 2 starts saying something, I try to tune in, but lose her by the end of the sentence. Eventually I give up. This can happen when I'm working on my own too - I just stop being able to write anything other than strict procedural stuff (so I can write "I did X today" but not basic emails) and it becomes very easy to spend half an hour staring at the wall unable to think clearly. Like someone dropped wool between "me" and my cerebral cortex.

[ramakentesh]

Yeah similar to my own experience - concentrating on people in conversations can cause issues at times for some reason.

I recently posted a study on how CFS/POTS brains dont increase blood flow vasodilation in response to cognitive tasks whereas normal brains do. It may be if interest.

[Serbo]

Thanks everyone.

Peregrine - I have had what you describe before but not for a while. Occasionally now though i get times where i stumble over words in meetings or on calls, or some times my brain takes longer than normal to remember a word. It's very frustrating. I can empathise with staring at a wall to, it's that feeling of suddenly realising you have zoned out!

What i have had yesterday is different though, somewhere between fog and derealization - very strange, a feeling of being able to engage with work etc, but also feeling not all there or quite right. I have picked up a stomach bug or something and it must be to do with that

[brethor9]

Serbo, I think I get some of what you are describing.....for my brain fog....it is almost like there is a clouded curtain pulled down over my senses....everything seems to be hazy and I feel muddled? just a little off....I dont hear things the same, taste the same and cant concentrate, my head pressure gets far worse and I swear at times it feels like my brain is swelling lol....everything is just a little skewered......what disturbs me is when I have an hour or two of clarity.... its literally like a clearing of the head....like the curtain gets pulled up.....everything becomes clearer, brighter, focused and I always think to myself this is what normal used to be then it goes back to POTS normal .....this illness is soo weird....

Bren

[peregrine]

Serbo, that sounds awfully like what I experience when I walk from place to place, although mine is closer to depersonalization - I don't feel like I'm in my body. Stops when I sit down. The reason it concerns me so much is that I don't notice things like cars, which can be dangerous. It's worse if I'm particularly low energy (e.g. I didn't sleep well or long enough).

Stumbling over words totally happens to me! Plus I often type or say the wrong word (I recently typed "like" for "look," for example).

[icesktr189]

Mine is where I cant remember my daughter's birthday or even her name sometimes. I will be talking and totally space it out.