Brain Fog/Memory

[jhberkley]

I'm a sometime lurker here, 55 years old and have been on warfarin since my 2nd DVT 10 years ago. My memory (both short-term and long-term) seems to be getting worse, but my doctors attribute it to menopause or depression. I'm just wondering how you determine that what you have is APS "brain fog" as opposed to something else? Is brain fog diagnosable as distinct from normal aging or dementia or ?

[MaryF Administrator]

This is a difficult one, however lots of other autoimmune conditions also appear to cause foggy brain, I know my untreated slow thyroid did this alongside my other things... some days worse than others! M x

[jhberkley in reply to MaryF]

How do you know which condition causes the problem? Is it ever treatable? My thyroid was tested recently and is normal.

[MaryF Administrator in reply to jhberkley]

Well, I have hypothyroidism, hughes, lupus, sjogroens, and psoriatic arthropathy..how to tell which one is doing what is tricky... all I know is that I have it to some degree and at times it is terrible and other times it is not. I work very carefully with diet and exercise to try and improve my lot etc etc! Mary F

[Lesley_D]

I attributed mine to menopause before my Dx - and doctors also said especially as I had young menopause (onset at 42 - finished now at 49) But my foggy days can be terrible, where I can't even remember simple words like television, or fork etc - it was until I read about it on this site that I felt understood at least - I also have heard other auto immune disorders cause foggy brain.

Not sure if this helps, smiles sent to you

Lesley

[jhberkley in reply to Lesley_D]

I am having late menopause (still not officially there at 55). IT seems like the docs think both the APS and menopause (yours being particularly early) are what makes your brain foggy. How did the docs come up with this conclusion? Is there anything you do to make your mind or memory better?

[jessielou]

Hi hon

I struggle with brain fog, I know at 47/48 it could be menopause is coming, however, I have Aps, lupus symptoms overlap, fibro etc. . Difficult to know what causes it but it improves when my inr is higher!!!

I read, do puzzles, studied maths n autism courses with open university last two years and am active on this and other forums, all keep the brain working.

Hope you having a good day today.

Take care gentle hugs love Sheena xxxxxx

[Sue2803]

I also have brain fog, really bad some days. Makes family laugh though x

[jhberkley]

Thank you for all your supportive words. It means a lot. Probably more than anybody here wants to know, but I'm divorced a little over a year and just started dating someone. I get embarrassed and feel stupid when we go to a movie or I finish a book and he asks "did you understand what happened when X did this to Y in that book/movie?" and I have absolutely no memory of who X or Y are. This does little to improve my confidence in the world of dating!

[Lesley_D in reply to jhberkley]

Hey I am also divorced and started dating just a couple of months after I go sick last year - my guy laughs with me rather than at me when my brain cell desert me try and do the same - laughter is contagious

Lesley

[jhberkley in reply to Lesley_D]

Thanks for this. I'll try harder to see the humor in it!

[Lesley_D]

It seems the docs just blame menopause, I just accepted it as I have heard that you can feel a bit "dopey" when going through it - As yet nothing really improves it - When my INR went high, I felt better, then my hematologist upped my INR range to 3 - 4 not I seem to have got used to that and the fog returned. I will see what I can find out though

Lesley

[jhberkley in reply to Lesley_D]

Thanks, Lesley.

[WayneL]

Hi, all.

My daughter at 32 has times when even trying to tell us what she wants is very difficult and frustrating for her because she knows what things are but can't remember what the name of it is.

This also applies, in her case, to people and events that have occurred recently, so sometimes it's worse than others.

After reading much on this,both on-line and in print, I am of the opinion that when blood becomes thick or too thin it must lose it's ability to carry the right amount of Oxygen that the body (brain ) needs to function properly and this oxygen deprivation leads to the infamous "Brain Fog" that seems to haunt most - if not all APS sufferers.

I spoke recently to a friend of my elder brother who had the mis-fortune to suffer" the bends" (Nitrogen Narcosis) after a diving trip, and he mentioned that just prior to his collapse that his feeling of disorientation was very acute and he panicked because it made him lose all sense of direction and control.

I suspect that a similar thing is the cause of the Fog.

My wife had an almost non-existant Iron level for a long period of time (approx. 10 yrs) and reported that when given treatment , the effect was like waking from a fog.Might have some relation?

Anyway, I hope things get better for you and you don't have too many "Foggy"days.

Wayne L

[jhberkley in reply to WayneL]

Wayne,

Thanks for your thoughts on this. So do you fhink that having the blood less coagulable (hier INR) reduces brain fog? I'm sorry your daughter is having a hard time with the Fog. The Bends is a very very serious thing I understand, scary and life threatening.

[jhberkley in reply to jhberkley]

That's higher, not hier.

[WayneL]

I get the grammar.LOL

It seems to me that when her INR is at the upper end of the range set for her, her cognitive abilities are much better and she has less "Fog", hence the recognition of the blood factor.

It is only my personal observations that have given me these thoughts about the relationship of Oxygen and the blood.

I don't know if there is any medical evidence to support this idea.

Thanks,

Wayne L

[tassie]

Brain fog most of the time here too. If its just menopause how do the guys explain theirs?

I doubt you could prove which thing caused it but chances are its the autoimmune issues, too many of us both male and female experience it to just blame menopause

[WayneL]

Hi, tassie.

As you say, there are too many APS patients of both genders that have the "fog"to be dismissive of it as a symptom.

I have read much, both here and elsewhere to conclude that it could be anything but an auto-immune symptom. It is, unfortunately, not restricted to just Hughes. It seems to be apparent in quite a larger range of the others as well.

Not much help to those with auto-immune diseases, as it makes a correct diagnosis that much harder for the doctors.

I think the medico's use menopause as any easy fix, if there is nothing else obvious turning up in their testing.

How have you got on with finding more medical help over there?

I understand that you are seeking out a new specialist?

Any Luck?

Wayne L

[tassie in reply to WayneL]

I haven't really gone any further looking for another specialist. It would mean travelling to another state and we are on an island. I think I can mould my GP into going in the right direction as he is open to learning. But basically just trying to survive each day at the moment.

[GinaD]

Any hikers or hill walkers on this thread? Anybody else come close to hypthermia? That intense confusion which sets in when you get too cold? It makes it hard to connect dots and reason through a problem, and remember anything new which happens while you are in the midst of this post-shivering cold funk. I have never had an APS brain fog day which was as intense as the hypotermic "duuughs," but I note a similarity . I presume the blood flow has slowed during hypothermia and O2 is also lower in the brain.

[daisyd]

I used to have brain fog before having clexane/warfarin

I think hughes syndrome is made worse because of atmospheric pressure.

having developed oesteonecrosis Bone death in some bones.

The consultant asked me if I did deep sea diving as it could be a cause also if I drank a lot of Alcohol .no to both. I think its being on long distance flights that caused the Hughes syndrome to get worse.

Love Karen xx

[WayneL]

Hi, Gina & Daisyd.

I had not considered the high altitude / thin atmosphere relationship before now, nor the hypothermic sensations described above.

I suggest that they are relevant to the experience of "Brain Fog, as described by many of you, in that it is all caused by the oxygen deprivation of the blood.

As those of you who have experienced the above scenario's will agree the effect is quite dramatic.

It is this that leads one to the conclusion that it has to be oxygen depletion that causes the brain to react in such a similar fashion.

Also, as you travel in a controlled (pressurised) environment, it has to have a greater effect the longer your body is subjected to it.

This is why, I think, your doctor asked about deep sea diving, but long distance flying could also be causing the increased problems you mention.

Just some thoughts for you.

Hope all is well.

[jean48]

Have an MRI taken of your brain.

[jhberkley in reply to jean48]

What shows up on the MRI?

[jean48]

I'm thinking what I said was kind of harsh but was a solution for me. I had a MRI that showed moderate white matter disease. My Rheumy had order me a MRI again to see if there has been any changes. Are you taking Coumadin? The idea is if you are on a blood thinner this could prevent white matter changes in your brain, APS can cause some neurological issues. I'm not sure this relates to you at all. I'm just babbling on about my own experiences.

Jean48

[jhberkley in reply to jean48]

Jean, Thank you for your response. I've been on warfarin for 10 years. What was the reason the doctor,ordered the MRI? Was it because of your brain fog? When I complain about it I can't get anybody to take me seriously as rhey dismiss it as menopause, depression, etc.

[jean48]

Me too - They think I'm sick because of menopause and depression. I originally had an MRI because I lost my sense of smell. Turns out it was due to my dose of Paxil. But after the first MRI I was misdiagnosed with MS. The MRI showed white matter disease. I recently had another MRI to compare to the old one. The new one indicated that I had Moderate White Matter Disease. Their thought is that the warafin will prevent more white matter disease. I'm not so sure they are right as I've been on warafin for 16 years. I'm sure sick of the darn blood tests. I'm not sure the MRIs are that useful. I guess there is no real treatmen othert than the warafin. So MRI results just make me worry.

Jean

[jhberkley]

What is white matter disease? i don't think I've heard of that one.

[tim47]

It isn't easy to know what causes brain fog or memory loss-but I'd be surprised if mine was caused by the menopause!

Seriously though, I think some is due to Hughes as I have had issues since the first manifestation of Hughes which was multiple pulmonary emboli in the seventies.Things did get worse, particularly memory wise, but I am pretty sure that this is due to something like a dozen or more TIAs and a stroke. (I've been clear since I had a hole in the heart closed a few years ago)

I got pretty fed up of doctors saying it was me getting old, and I just joke about it now.

[WayneL]

Hi, All.

My daughter had an MRI a couple of years ago, and it showed very little apart from evidence of previous tia's.

Since then , she has had numerous Tia's /PE's etc, and i am wondering if these episodes would have left any residual traces that can be identified by MRI testing.

As for Menopause, i believe that chemicals produced in the brain at this time cause an effect very similar to the previously described "Brain Fog", as experienced by APLS sufferers.

I also get tired of the medical professions lack of curiosity when it comes to having a correct diagnosis, and trotting out the same , old things.

We try to convince them that this is not right, but they're the one's with the Medical degree.

What do we know, it's only my daughter going through it.

Thanks.

Wayne L

[CaliforniaGail]

I started menopause about 5 years before APS symptoms. Hot flashes, mild mood changes, and forgetfulness like walking into a room and forgetting why, but after APS was triggered when I was 55, the brain fog is different. Mainly inability to think of the correct word for a basic object or a name of someone I've always recollected before. Then after a couple of years of APS, I noticed I was joking how "blonde" or ditzy I've become because my verbal skills, always very good, have deteriorated to where my train of thought is constantly stopped. The mid-sentence "what was I talking about?" At first I thought I was developing Alzheimers like my mother and grandmother. Perhaps I am, but after reading so much about brain fog and autoimmune disorders, I feel more relieved to recognize it as that. I can't really tell if the warfarin is helping since I started it just as the APS hit after a terrible bronchial infection and when I became educated about all of this.

A comment about elevation -- I've read stories of young people having strokes while hiking at high elevation and later finding they have APS. Yes, big problems when flying too, though I don't understand why, if you're in a pressurized cabin. I just do my exercises every hour when flying!

Oh, one more thing that I found funny: yesterday I was with a very aged doctor examining my father, and when the conversation turned to my APS, he said, "That's very rare." ha

[jhberkley in reply to CaliforniaGail]

Gail, I find it so difficult to describe what the brain fog is like. Thanks for describing a bit of yours. Forgetting where I parked my car or put my keys sound like so typical of mid-life/menopause/normal memory problems. I used to be a very articulate person, written and verbally. But now I struggle to come up with the simplest words. And my shorter term memory (of what I was saying 5 minutes ago or the movie I saw last night) seems to be getting worse. As well as my long term memories of my child's earlier life or my own. This is very scary.