Had a video appointment with my Neurologist, it was actually better then a live visit, we have already did hands on testing and balance etc. So something that overlaps in the PsA world, brain fog, I am sure some of you have it, I forget who…
So I am asking him about it, he is blaming it on poorly managed PsA, (They always blame the other doctor) and he tells me he will run a tilt table test, where I am on a tilt table, then they do a ultrasound image of the blood flow in the brain, to determine if it is impeded I guess by tilting factors or Autonomic nerve dysfunction? I have not researched what he Is looking for, but anyway, he was telling me that it would not be until August, meanwhile I am in a full blown flare since starting Cosentyx, almost 2 weeks of chronic fatigue, so I am saying, “good, because I have a lot going on in July I have a… a … procedure for… um… let me look it up on my calendar, oh ya, prostate”… It was a great demonstration of brain fog right before his eyes… I told him this has been going on for 20 years, I just tell people to “deal with it” but it is still embarrassing at times, when you can’t remember your good friends name. I was usually a little more rehearsed before going to appointments I guess, a lot of notes… Also unrelated to PsA but some might have this, it is phantom smells, I have been having for a couple of months, only when I have chronic fatigue and usually tinnitus, blurred vision. He asked what it smelt like, I said it was a new scent, (duh phantom!) So he is thinking I really got a winner now, I am surprised the paddy wagon didn’t show up to cart me off.
Thank goodness for essential oils to mask phantom scent with nice happy wintergreen!
Anyone have any funny stories of their brain fog to share? Phantom smells anyone? Or maybe I have been in quarantine so long, I will come out and someone will say “ew you stink!”
This is probably what he is basing the test on, since I also have small fiber neuropathy: What is the (suspected) cause of cognitive dysfunction in POTS?
The cause of cognitive dysfunction in POTS is still unknown. There have been several potential causes proposed. First, there is an association between elevated norepinephrine levels and psychiatric disorders such as depression, panic disorder, and attention deficit hyperactivity disorder. Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic). We did not find an association between plasma norepinephrine levels and cognitive function in our study in POTS patients, but further studies are needed. Second, studies have shown that a reduction in brain blood flow may contribute to impaired memory in POTS patients with chronic fatigue syndrome. Finally, POTS patients often have other conditions including small fiber peripheral neuropathy, vasovagal syncope, immune system activation, pain, irritable bowel syndrome, and sleep disorders. These could all negatively impact cognitive function and overall mental health.
I get you about brain fog! Ugh, it’s so embarrassing at times and very scary. The first thing that comes to mind is early onset Alzheimer’s! But, I remember telling my doctor 35 years ago I thought I had Alzheimer’s. He laughed and said it’s a common fear among young moms of young kids—your mind is all over the place with wiping butts, fixing owies and breaking up battles over who gets to play with the toy nobody wanted an hour ago. Trying to have a clear memory about anything adult is nearly impossible. I’ve been wondering if that new OTC memory pill is beneficial. If I knew it would really clear my brain with no SEs, I’d try it—at the moment I can’t remember what it’s called .
I have a low-grade headache in my forehead a lot lately. Not enough to take a pain med—just enough to make me feel foggy. And the ice-pick headaches come and go. Thank God they go fast, because they HURT! I had a neck and brain MRI last Fall and my. brain was perfect (haha) so I really shouldn’t worry.
I’m wondering if when I get a new eyeglass prescription the headaches and brain fog will go away—my eye appointment is later this month. Can’t wait!!! @Jon_sparky, do you have POTS?
I am taking low dose topomax for my migraines, at least that is what I was calling the same headache you get, helps a lot, cut them down to one a month.
I thought I had Alzheimers back in 2004, the doctor thought then that it was blood sugar. I did have a crappy diet…
I don’t think I have POTS but, I do have a problem with my BP regulation, getting faint when I stand up to fast, and sometimes it is 145/90 then other times will drop to 105/68, my GP said he just cares about the high points… I have had Tachycardia in the past. I have talked about the tilt table test before with him, it will at least either eliminate the possibility or confirm it. If I have to pay for it, it will be $450.
Another possibility is that the autoimmune is causing inflammation in the brain stem and cutting off blood flow.
Getting my dry eyes treatment has reduced my blurred vision by about 80%! I still have fighter pilot vision in my left eye, 20/15 they always think it is a typo, and I read the bottom line… Comes in handy when working on fine detail work.
Wonderful topics as usual on this group. Terror of cognitive disfunction in my case as a linguist, simultaneous four language translator, language instructor etc. It was one of the reasons was so happy with my extended fasting experiences a while ago. It appears many people do fasts to sharpen wits in work contexts, and certainly I found it beneficial. The whole issue of microbiota affecting health, immune disorders and diseases , all I know is am feeling better now even from a brain fog point of view, partly through my diet.
The other part surely from physical exercise.
Teaching several languages, that would be scary! I find my self having to reform sentences in my native tongue because I have forgotten the words, or how to spell them (spell check only works if it can detect what you are trying to spell), so the speaking gets real basic, when speaking other languages you have to think in that language… I did live in Mexico for a while in 1980, where I learned Spanish in the Market so I could buy food! (Me in maroon shirt)
Yes, they are connecting a lot of this to the gut bacteria. I did a one month liver cleanse one time years ago, it was a balanced semi fast, more of a super low carb high protein and nutrient diet with tinctures for the liver, milk-thistle, etc. I felt great… But all good thing must end, and I had to go back to eating…
Maybe the introduction of broccoli sprouts will help my brain fog? I bought 5 pounds of seeds, I was having brain fog when I ordered them! That will last me 70 weeks. Taking broccoli sprouts for my smoldering waldenström’s.
Jon, so sorry to hear about the waldenstroms. Let us hope that an appropriate diet will help reversal or a freezing of the situation. Methotrexate is not helping general cognitive blossoming , hoping diet will result in mental renewal in spite of scientific evidence. All the best jon
Broccoli Sprouts? What is the theory with those and the Waldenstrom’s? Apart from being generally healthy I mean. I’m going to ask the gastro about curcurmin Monday. Not sure how my gut would go with pounds and pounds of Broccoli sprouts!
If I had a $1 for every time I talked to my PCP about the nasty smell that I couldn’t find the source of, like if the deep, damp undergrowth of the rainforest was smouldering and I was choking on the smoke…I could pay my co-pay. Also cigarette smoke, urine, BO, feces, vomit … It was interesting to me that the phantom smells were always something disgusting. I never once smelled a mystery apple pie or blueberry muffin.
One doctor gave me an MRI, said that except for an area of “turbulent flow” on the right side, there was nothing remarkable about my brain. I had an EEG, again some inconclusive findings but for the most part, perfectly normal.
So in conclusion I guess I have no answers about the smells, just an assurance that you are not alone.
Your right it is not a pleasant scent! But I overpower it with aromatherapy. I like to put essential oil in my N99 mask, then I actually want to keep the mask on!
The only concern is he was treating me for aura migraines, and that can be a manifestation of a precursor to migraines. They also said that people with non allergic rhinitis can also have phantom smells, and I have that also…
I would love to see the doctors face when you said “I am having a phantom smell, I am sleeping in my room, and all of a sudden I smell fresh apple pie baking! I run to the kitchen and there is nobody there…”
I too have migraine with aura, no pain, (they used to call it atypical migraine). This is what the doctors finally decided was the culprit, after a 2 pcp’s, a neurologist and an ENT. It is a pesky condition. Without the physical pain, everyone seems to think it isn’t all that bad. But I have cried many times from the constant, choking feeling, sometimes lasting a week or more, and the sense that I must be going crazy. Running from room to room sniffing obsessively insearch of pee spots on the carpet; yelling at my teenage boys to shower and use deodorant; trying to catch one of them or my husband sneaking a smoke in the house.
I never found anything that covered the smell. Which makes sense - because if my brain can just invent smells, it can surely make smells disappear. It finally stopped after 2 years, as suddenly as it began. Haven’t had it since. But I still get migraines
Hmmm, I thought it was my brain. I am 62 and have started having trouble remembering words. I can’t pull out words I use all the time. It had me worried, but now it makes sense. I eventually find the word and worry why I couldn’t think of it.
Thinking, it is worse when things are flaring up. I don’t take enough oxy to cause it. It is embarassing sometimes. Wife says it is because I am getting older.
I take methotrexate, remember when in 2004 was doing chemotherapy for breast cancer I would go to the last year or my 4 year Spanish course necessary for my interpreting Bob, I was wearing a wig so no one would notice, but one of my teachers came up to me one day and said he did not understand how I had become from being one of the best students to insufficient. Suppose the chemo brain may be’ what is happening now with methotrexate, or is it simply getting older?
Green things with a big stone in the middle we sometimes have for lunch … not asparagus … archipelagos? Archangels … nope. Arachnids? No silly! That’s spiders! Oh lets just eat 'em.
My other half doesn’t even have PsA, he’s always been like this.
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