Brain Fog & POTS - What Helps?

[mostlyelbows]

I was diagnosed with POTS about six months ago, but looking back I've likely had some form of dysautonomia since I was a teenager that went unnoticed/misdiagnosed for 10+ years. I've never had it "bad" enough to pass out, and I think my heart rate is relatively tame compared to a lot of POTS patients, but my worst symptoms are low energy and a persistent, ever-present mental fogginess that never goes away, to the point where I sometimes feel depersonalized and disconnected from reality. I almost never feel present and my brain often feels like soup - it's like being slightly drunk, all of the time (but sadly without the fun part of being drunk).

The cardiologist who diagnosed me put me on Fludrocortisone / salt, because my BP tends to be on the low side, which has helped a little with my energy levels but didn't do much for the brain fog, and I still find it hard to stand for 15+ minutes without vasodilation / blood pooling in my feet, which results in dizziness and a horrible weak feeling, even though I don't actually pass out. I also wear compression, drink 2+ liters of water a day, and try to exercise which helps, but the brain soup persists.

Today I had a follow-up with the cardiologist, and after explaining that the Fludro isn't doing that much and that I would like to try something else, he proceeded to tell me that POTS doesn't actually cause brain fog (?!) and that actually I seemed like a "functional young woman." I tried to explain that even though I can technically work and am not actively unconscious, my brain fog makes it difficult to do tasks that require any novel thinking or problem-solving, and I asked about trying something like Midodrine that would be more constricting. He told me that Midrodrine does exactly the same thing as Fludro so it wouldn't make any difference, and basically told me since I wasn't as bad as his worst POTS patients that there was nothing else he could do.

The good news is that the cardiology office is adding a POTS specialist which he referred me to for a second opinion, but I couldn't get in until November, which feels like an eternity away after spending 2 years just trying to get to this point. I've had relatively good luck with doctors up to now, but having someone dismiss my brain fog as something trivial and unrelated to my quality of life felt really soul-crushing. And it's hard to sit and listen to doctors confidently explain things that you know from your own research/experience to be incorrect. (I'm no pharmacist but Midodrine and Fludro seem like vastly different drugs to me!)

I guess I'm just wondering if anyone else has experienced this kind of disassociating brain fog from POTS/dysautonomia and if there was anything you did that helped with it, even a little. I'm lucky to have a relatively "easy" job right now, but I'm worried that if my job or life becomes more demanding at some point that I will not be able to keep up. I know that there is no easy cure, but I want to believe there is something else that might help my brain soup, even a bit. Any thoughts would be appreciated!

[Pistol]

17 hours ago, mostlyelbows said:

I guess I'm just wondering if anyone else has experienced this kind of disassociating brain fog from POTS/dysautonomia and if there was anything you did that helped with it, even a little.

Hello @mostlyelbows I am soo sorry you are being treated like that! Brsinfog is known, common and explainable symptom of POTS, so this cardiologist is not only ignorant but also incorrect. It is unfortunately that there are STILL so many physicians who are convinced that POTS is not as widespread as is actually is! 

I have HPOTS, which is a different mechanism that other POTS types since the symptoms here are caused by excessive vasoconstriction. However - it causes brainfog and most other symptoms just as much. Regardless of the mechanism behind the symptoms - brainfog is a type of presyncope and is usually caused by insufficient cerebral circulation. Most POTS patients experience blood pooling resulting in the blood not reaching the brain and the body having to work harder to pump the blood back to the heart. Midodrine is commonly prescribed if this is caused by excessive vasodilation, and can be very effective. In my case I respond better to vasodilating meds such as calcium channel blockers ( which would make other types of POTS worse ). 

There is no ONE treatment that helps every patient with POTS, even if the type is the same. Most of us have to try many meds before we find what is right for us, and any physician that understands POTS would know this. You are already doing all the things you can do yourself without relief, so medication is usually the next step. Beta blockers are commonly prescribed, but so is midodrine. Since you have to wait so long for the specialist appointment, can you see another doctor in the mean time and ask for another opinion? 

Here are a few articles that may be of help, and hopefully you can use the information to present your case : 

https://www.dinet.org/info/pots/what-are-the-mechanisms-of-pots-other-forms-of-dysautonomia-r97/

https://www.dinet.org/info/pots/patient-guide-preparing-for-the-er-new-medical-visits-r151/

https://www.dinet.org/info/pots/pots-an-overview-r95/

 

[mostlyelbows]

Thank you for the kind words, @Pistol! It's always nice to hear that I'm not totally crazy haha. I will definitely check out those links! The mechanism one in particular is super interesting. Thankfully I was able to get in with my GP next week and hopefully she will be more helpful in the meantime!

[cichlidlover23]

Not much helps mine unfortunately, rest and not overdoing it helps tremendously but that's about it 

[Sarah Tee]

Sorry you had to deal with someone so ignorant.

There has been a little bit of research into this, but as usual with POTS much more is needed:

https://pubmed.ncbi.nlm.nih.gov/25001527/

I find this survey of 5000 people reporting their experiences with POTS useful:

https://onlinelibrary.wiley.com/doi/10.1111/joim.12895

 

I have “POTS without the T” (chronic orthostatic intolerance, an adjacent condition) and I certainly have trouble thinking.

 

Also, dear lord, midodrine does not do the same thing as fludrocortisone by any stretch! As you’ve probably seen in your research, people with POTS are sometimes prescribed both.

 

I do hope your next doctor can help. I’m afraid brain fog can be a hard one to tackle directly, but working on your treatment in general does sometimes reduce it. People do sometimes try stimulant and stimulant type medications such as modafinil.

[Sarah Tee]

I would also try to find out about the new POTS specialist. If you have their name, see where they used to work and whether there are any reviews or if they have been listed on the Dysautonomia International specialist page.

I would just hate to think of you waiting until November to see someone who might not be much good. (I only worry about this because if your cardiologist hired them, he might not have been very discerning given his lack of knowledge on POTS.)

[bizbiz]

Hi @mostlyelbows,

Sorry to hear you are also living in a fog.

Like you, brain fog is my most bothersome and debilitating symptom, so I completely sympathise. I'm always in a mental fog, a few seconds behind everyone else and slightly disorientated. The disassociated feeling that often accompanies the fog can be quite frightening at times. I don't faint either, which I think makes it harder for people to understand, as there really are no outwardly signs of illness.

My POTS takes on a relapse - remitting pattern, and I've found that once my other POTS symptoms improve, so does the brain fog. I've had years between relapses in the past with no brain fog whatsoever. It is, however, always the last symptom to leave and tends to persist for a good few months to a year before disappearing entirely.

With this relapse (3 years and counting), while I've seen gradual improvement with the majority of my other symptoms over time, the brain fog seems to be a constant, without showing any signs of improvement. I've tried the majority of medications typically prescribed for POTS, and the only thing that I've found which seems to make a slight difference are salt tablets (specifically Vitassium Saltstick and Chews, not just salt loading on food), with extra water intake.

I've found the brain fog to be absolutely life altering and debilitating, so I totally understand how frustrating it would have been to have a doctor brush off this symptom.

I hope you see some improvement soon.

[mostlyelbows]

Thank you for the info @Sarah Tee ! That is a good point about checking reviews about the POTS specialist – I'll definitely do that.

Thanks for the kind words @bizbiz! You really hit the nail on the head of how it feels. I also really like the Vitassium stuff. I hope you can find some improvement in your brain fog as well!

 

I just had the appointment with my GP and she was much more empathetic and completely understanding, which is a big relief. I honestly didn't know what I was going to do if she had also brushed me off. She's going to start me on a low dose of Adderall with a tiny dose of Zoloft as well. I've heard good things about these for POTS and brain fog so we'll see how it goes.

[Pistol]

@mostlyelbows I am glad to hear your new GP is listening! Adderall and zoloft sound like a possibility - my specialist put me on escitalopram and ritalin ( same type of meds ) and the combo has been very helpful for some of my symptoms. Best of luck!