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Anyone else have hardly any dizziness/lightheadedness but terribly debilitating brain fog?


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Hi, so I have been on the forum for a couple years now, but this is my first time posting. I am a very atypical POTSie in that I have very few problems with being upright--hardly ever have lightheadedness, nausea, palpitations, etc. However, what I do experience is an absolutely debilitating brain fog which affects me throughout the whole day, no matter if I’m sitting, standing, or whatever I’m doing. It has affected me so much that recently I had to stop taking classes all together after decreasing my credit load my last couple of semesters. My other most prevalent symptom is a terrible head pressure that also greatly affects my cognition. I also have other POTS symptoms like exercise intolerance, sleep troubles, and fatigue, and I have been diagnosed with POTS by Mayo Clinic.

I have done all the baseline treatments recommended for POTS like increasing salt and water, doing an exercise regimen, wearing compression stockings; and have tried a bunch of different drugs like florinef, propranolol, and stimulant medications. The increased salt and water actually made my head pressure and cognition worse. The stimulants worked at first, but after awhile I grew tolerant to them, and they worsened my head pressure to where I could feel my pulse pounding in my own head. I was wondering if there was anybody else out there who experienced something similar where they had terrible brain fog but no dizziness. And if so what have you done to help your brain fog? 

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@Zach Martin - welcome to this forum! To answer your question: yes, I am familiar with the head pressure. I have hyperPOTS, which is caused by excessive sympathetic response causing increased adrenaline levels, which causes blood vessels to constrict and the blood cannot reach the heart, lungs and brain due to this. It causes increased HR and increased BP ( sometimes dangerously high ). Whenever I am in a flare I can experience head pressure and severe cognitive problems - I cannot think, cannot form the right words and slurr my speech. If it is bad enough to also affect the circulation to the heart and lungs I also have severe chest pain and shortness of breath. 

What helps me medication wise the most is a calcium channel blocker called Diltiazem. It dilates the blood vessels. But even the increased water and salt, beta blockers, SSRI, Ritalin, etc did not help as well as weekly IV fluids. They seem to stop and prevent the vasoconstriction. 

If your problems are caused by excessive vasoconstriction the Florinef and Propanolol as well as Stimulants may be the wrong meds for you, since they all can CAUSE vasoconstriction. Do you get cold hands and feet a lot? Especially when you are bad? That would be a sign of vasoconstriction. In my case they confirmed the diagnosis of HPOTS with a neurotransmitter test that found my norepinephrine ( adrenaline ) levels to be very high. If any of this sounds like you you may want to look into HPOTS. There are some articles about it on our information resources site, under POTS. 

Another way to bring down adrenaline levels is to lie down in a completely quiet and dark room and close your eyes and concentrate on your breathing. But this - in my case - is often only effective until I stand up again. 

6 hours ago, Zach Martin said:

The stimulants worked at first, but after awhile I grew tolerant to them, and they worsened my head pressure to where I could feel my pulse pounding in my own head.

This - to me - happens when my BP is elevated. The constricted vessels cause the heart to beat STRONGER in order to push through the narrowed vessels. 

Feel free to PM me if you find any similarities and have questions. Best of Luck!!!!!!

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@Zach Martin My main symptoms are weakness and brain fog. I only feel lightheaded if I push myself by standing in a queue or doing something strenuous, but I avoid that. I have some head pressure that takes the shape of a sinus headache (pressure above eyes and along cheekbones). I don't think I have tachycardia either.

I am still working on geting diagnosed, so I can't offer any suggestions. I just wanted to sympathise at how much brain fog sucks. I am sorry you had to give up studying. I had to give up freelance work and basically ban myself from tackling anything mentally strenuous during the day. I can manage routine activities, but can't focus on anything more.

Do your symptoms resolve later in the day? Mine generally get better by late evening, but there's not much to achieve from 11pm till bedtime in the country town where I live, apart from sending a few emails, getting in some exercise, and trying to research what is wrong with me.

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Hi, @Zach Martin I am so sorry you are dealing with this - I had awful brain fog when my POTS symptoms first started showing up.  I did also get dizzy and light-headed, but that came on in earnest weeks after the brain fog.  Like @Sarah Tee, the brain fog did improve in the evenings, so I figured out that when I was up and moving about all day, at least to some degree, that was improving blood flow to my brain and that's why it felt better.

I did try sleeping with the head of the bed elevated, and that seemed to make it worse.  So then I tried laying down with the *foot* of the bed elevated (our bed is adjustable) when the brain fog was really bad, and the fog significantly cleared within a half hour. So now I sleep with the foot of the bed slightly elevated, with my doctor's approval. And I also take a low dose of a beta blocker - Propranolol - which has been very helpful, knock wood loudly!

I did get a pair of the compression stockings before I was prescribed any meds - I got the panty-hose type - and, although I was professionally fitted, I never could get them completely on. They're sitting in my closet.

I hope you find relief soon!! 

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@Sarah Tee Yes, my brain frog and head pressure gets better later in the day too! I’ve always wondered why this is. Does anybody have any ideas? 

@Delta Walking helps me think a little bit clearer as well. I’ve always thought this was weird because every person with POTS I have read about gets worse when they stand/move around. Nice to know I’m not the only one. 
 

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@Zach Martin, judging from reading forums, a reasonable number of people report feeling somewhat better later in the day. I actually feel 100% better (no symptoms at all) later in the day, which a smaller number of people report. I call it "Jekyll & Hyde syndrome" because it is like being two different people.

Here's someone talking about a similar pattern: https://patient.info/forums/discuss/brainfog-and-fatigue-until-the-late-afternoon-or-evening-641793

I have seen a lessening of symptoms later in the day mentioned here and there by dysautonomia specialists in papers or conference talks, so they have noticed it too, but they didn't have an explanation.

(By the way, I have not been diagnosed with POTS. I have OI symptoms and am waiting to see a dysautonomia specialist.)

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@Zach Martin, by the way, did your symptoms start suddenly or gradually? Mine started gradually, about 15 years ago, and used to only affect me for an hour or two in the morning, but have extended further and further into the day.

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@Sarah Tee Wow that's crazy that it's that much of a difference for you! I definitely feel better at night, but the brain fog is still pretty debilitating. My onset was gradual as well. I initially discovered I had POTS in high school because while I was playing sports I started to get exhausted really easily. The brain fog, fatigue, and head pressure didn't get real bad till about 5 years after I had my initial diagnosis.

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Brain fog was by far my most bothersome and enduring symptom when I first developed POTS. While my other (typical POTS) symptoms began to improve after a year or so, the brain fog persisted for another 12 months. It was really difficult and I constantly felt like I was living in a dream-like state with jumbled thoughts.

My POTS takes on a relapse-remitting pattern and the fog tends to correlate with the severity of a flare. I have had years between relapses of almost perfect health with no brain fog whatsoever.

Unfortunately, I have not found anything but time and the improvement of my POTS flare to help with the fog. I have tried in the past florinef, dihydroergotamine, salt loading and licorice tea and none of these have made much improvement.

I also have a daily headache and head pressure when in a flare. It almost feels like the blood running through head is like concrete (my best description!), and gets worse when I need to concentrate or go outside and there is a lot of stimulation.

I hope you you see some improvement in your symptoms soon.

 

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@Zach Martin, just a thought – have you tried abdominal compression? I have recently read that people who are not helped by leg compression alone might still be helped by leg up to abdomen, or just abdomen, compression.

(Of course checking with your doctor first and starting with a gentle pressure.)

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Hmm, I never drink alcohol (because of an unrelated medical thing), but it would be interesting to try and see what happens. Not as a treatment obviously 🙂

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Hi,

I have a tilt table test on Monday. Can anyone tell me what to expect? Is it awful? I don’t get dizzy very often. I have never fainted. My heart does not go really fast or slow. I do have  breathing issues. My 02 has also been going down to 88% sometimes.  Does POTS have other stuff then that? Can anyone tell me some of their experiences?

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Hello @Coffeebean! I had 2 TTT's. They are not fun, especially if they have instructed you to stop all meds beforehand. They will strap you to a table, hook you up to BP monitor and EKG and then they will stand the whole table up, with you on it, for 30 minutes or until you pass out ( if that happens, you do not have to pass out in order to get a POTS diagnosis. If you have POTS your heart may start pounding, you might get cold and clammy, short of breath, have chest pain etc. But do not panic, no matter what happens - they have it under control, and these symptoms - as uncomfortable as they are - are normal in dysautonomia when standing up like that. They will also start an IV to help you feel better afterwards. Throughout the test they will ask you how you feel, and it is important to mention any and all symptoms you might experience. 

In POTS your HR will go up at least 30 BPM within the first 10 minutes of being upright, and STAY THERE, along with the symptoms mentioned, and other symptoms as well are possible. If your O2 level drops they will give you oxygen, so don;t worry about that. 

Good Luck - let us know how you did!!!!!!!

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