Brain Fog

[Runnersmom]

My son has had POTS for four years. His worst symptoms have been fatigue and the inability to read or concentrate for more than ten minutes. His setbacks have been from trying to take college classes. We were told by a cardiologist that he does not have CFS because he doesn't have joint pain. We have tried increasing fluids and salt, but it did not help. Does this severe brain fog sound normal for a POTS patient?

[statesof]

Hi Runnersmom, I cannot say if sever brain fog is normal for POTS, though there are many of us who do suffer from brain fog of varying degrees. In my case I've experienced two different forms of brain fog:

One that began when I first got sick and had very little to do with my physical exertion or if I was standing vs. sitting. This symptom could be quite sever at times where I really could not multitask or at least had a hard time doing it. I could read but it was as though I was living in a cloud, and made me feel almost as though my general awareness was cut down. For me this form of brain fog was helped by taking amitriptyline, which is a medication I take for migraine. I was not prescribed this medication for brainfog, it just happened to help this symptom for unknown reasons.

Then there is the brainfog which I associate more with my POTS symptoms. This brainfog is less consistent in that it is not a daily, constant occurrence but is made worse by taking beta blockers, which while I was on I literally could not do two things at once. If someone was trying to talk to me and I was typing on a computer I literally had to choose one that I could focus on. This brainfog is made worse if I overdo it physically, and affects me less cognitively but makes my visual awareness of the world around me more difficult, so things like driving or being in bright light situations like a grocery store are really visually draining.

[Runnersmom]

Thank you for your reply.

One of the things that bother me, is that he is unable to visit with friends more than an hour. When he took a class at the community college, he would be white as a sheet when I picked him up. If he drives, he is down and out the next day. If he reads too much, he can't function the next day.

Does this sound more like CFS than POTS?

[MomtoGiuliana]

There can be a lot of overlap with POTS and CFS from what I understand. For me, when POTS was severe, I was extremely exhausted, and yes visiting with friends or driving would have been very very tiring for me. I hope he sees improvement soon.

[bigtrouble]

With dysautonomia, it is common. For me, it was at times hard to think. It was hard to process what I was seeing around me, when someone talked, I would miss a word here and there and it was difficult to understand someone and I had to make them repeat. I also became more forgetful.

[Wufflebear]

for me it is common as well.

[DADofPotsSon]

My Son#2 had and has brain fog problems with his POTS, it took him 5 years to do a university for civil engineering including taking classes in the summer, he was not able to work. Eventually he did graduate as a BS in civil engineer (environmental). He said it was all possible due to a lighter class load and midodrine!

[kellygirl]

I have experienced pretty bad brain fog with my POTS. I used to devour a 200 page novel in 2 days and did extensive reading in my Bachelors program, now I can only read a few pages of a book at a time on a good day. Computers are a huge problem for me. I cannot be online for more than 15 or 20 minutes at a time without getting severely agitated and confused and dazed. I usually can't make it through a full TV program anymore either. I can't seem to stay focused, my eyes get really tired and my heart rate spikes if I am on computer too long. It has been hard to adjust to. But I do things as I can. Just can't seem to settle my mind in any one place. Things seem jumpy. I have also become pretty forgetful.

[Mikey69]

Hi Runnersmom,

I'm afraid this will only be a brief reply, as i'm struggling atm.

I'm a 46 year old male. I've had severe Fibromyalgia since age 13 and severe CFS/ME since age 23. Also developed Dysautonomia in past two years.

I am very well read on CFS/ME, having written a book on the illness and worked with many, many sufferers over the years. In short, i know more then any GP and consultant i have ever met.

With the greatest of respect I can confirm that the Cardiologist you saw obviously knows very little about CFS/ME, which isn't surprising, given his area of expertise. It sounds like he is 'generaliszng' to me, which is what most medical professionals tend to do when they are out of their 'comfort zones'.

I can confirm 100% that many, many CFS/ME sufferers never experience joint pain. In fact, i know several who never experience pain at all.

There is a huge spectrum of symptoms with CFS/ME, which is not surprising, given that we all have individual genetic makeups - this is what makes it so difficult to diagnose.

The symptoms/difficulties you describe certainly sound like typical CFS/ME.

I'm still learning about Dysautonomia myself, but it would seem that Dysautonomia can also cause similar/the same symptoms and difficulties.

In recent months i hve also learned that Dysautonomia is a recognized complication of CFS/ME and Fibromyalgia.

My advice would be to get a second opinion from someone who actually know what they are talking about (a CFS specialist?). i recommend doing some research into 'CFS friendly' medical practitioners and clinics, etc.

I also suggest you keep a detailed health diary for a few months, as this is an invaluable diagnostic tool.

Does your son have any other symptoms - Nose/sinus pains (Rhinnitus), post nasal drip, headaches, digestive problems - IBS type symptoms, etc?

Have a look at an extensive list of CFS/ME symptoms and see how many he can tick off.

Hope this is helpful,

Mike :-)

[Lindz]

I have noticed this too. Is it normal to get anxious and agitated when multitasking or doing concentration work? I often wonder if I am getting dementia and it scares me. Memory is still very good but I fall apart during stress or doing too many things at once. Is that normal? Please say so! Is the the autonomic dysfunction? Im considering taking anxiety meds just to cope. Had to take a 2 month leave from my job. Help!

[Runnersmom]

Mike,

Thanks so much for your reply.

Interesting enough, my son has not responded to any of the normal POTS medications. His POTS was brought on by a parasite. He was running at a cross country race and drank water that they filled up from a hose in the weight room. He used to run six miles a day and now can't run without becoming lightheaded.

Could CFS explain why he doesn't see improvement even with a mild POTS diagnosis?

[Mikey69]

Hi Runnersmom,

It's very good to 'meet' you as it wre.

I'm afraid i can't really comment too much on Dysautonomia/POTS as it's still all new to me. I'm currently trying to learn all i can so that i can better manage my symptoms.

I m guessing CFS COULD explain this. I know nothing about POTS treatments/meds, so i'm not the guy to answer that one for you i'm afraid.

What i can tell you is that it is commonplace for CFS to 'start' after gastro/viral infections - see Epstein Barr virus, Helicobacter, gastro parasites, etc, etc. any other stomach infections, food poisoning, etc. etc. Do an internet search for CFS/ME stomach viruses, potential causes of CFS/ME, etc.

Mine was brought on by a severe bout of Glandular Fever, which i never fully recovered from.

I don't know if POTS can be caused by a parasitic infection, but i can tell you that CFS/ME definitely can be!

Do get the health diary up and running asap and make sure your son records every symptom, no matter how seemingly insignificant/unrelated, etc. The best way to diagnose CFS/ME is to rule out all other long term conditions via 'the usual' medical tests and by someone who is very familiar with CFS/ME analysing a detailed health diary.

There are also some other long term health conditions that can be triggered by waterborne parasites such as Lymes disease (and others i can't remember). Have these possibilities been tested?

Most waterborne parasites 'damage' the physical performance of their 'hosts' in an attempt to complete their lifecycle, (by creating 'favourable conditions' for themselves within their host), which can, and often does include the use/damage of several hosts.

Tell your son to hang on in there. Things WILL get better once you know what you are dealing with,

Hope this helps,

Mike :-)

[Mikey69]

Hi Lindz,

I simply HAD to reply to your post above. i have always struggled with impaired brain function since the onset of Fibro in my teen years. This then worsened with the onset of CFS/ME in my early 20's. I too thought i was going senile/developing dementia, etc. This was very scary for me because i value my mental faculties so much since my physical body stopped working properly.

i was kinda happy with where i was at with my life/health until the onset of Dysautonomia some two years ago.

There was been another major decline in my mental faculties. Both my long and short term memory has been severely affected. I have lost so many important memories. It's now very difficult for me to remember new information, such as a BP reading taken two minutes before i write it down, etc. I even struggle to remember what i have eaten earlier, what i did earlier, etc. I don't think age helps with tis because i am in my mid - forties, the time when certain brain changes cause memory lapses, etc.

Oddly enough i can still cope very well with multi tasking, etc. But i am one of the lucky ones in this respect. Almost everyone i know with CFS/ME and FMS can't multi task. And i suspect the same may be true of Dysautonomiacs.

I would suggest that your problems are definitely Dysautonomic rather than Dementia related.

I was getting so concerned about my brain function that i ended up doing several Dementia diagnoses tools, which you can find online, just to reassure myself that i wasn't losing it.

Ultimately, if you are really worried i would recommend you seek appropriate medical help,

I would recommend caution with regards to anxiety meds. Benzos, barbiturates, Anti hystemines and Anti depressants are all pretty nasty and come with considerable risks in the longer term.

Have you considered meditation/relaxation/breathing exercises, etc? They are a MUCH better long term solution, but of course they require a certain amount of practise and dedication, especially in the first few weeks months.

To give you an idea of how effective these techniques can be: I do not take any pain medications for my Fibromylgia, and i am considered to be a severe case - hence in severe pain 24/7. The power of the mind is an amazing thing when properly harnessed!

Hope this provides some reassurance - you are not 'losing it' you are simply ill (me too!) :-)

Please take good care of yourself,

Mike :-)