Memory Problems?!

[akavella]

is anyone else having severe memory problems, i am talking more than "brain fog", i literally couldn't even tell you what i did yesterday...

if so, any suggestions, did you try any treatments, was this POTS related? my doctor tells me this is not POTS related and it is something neuro going on...

[sue1234]

I absolutely have developed memory problems since getting POTS. I can remember what I did yesterday, but it seems I can't remember things like making mental notes of what we need from the store, something I want to tell someone later, etc. I have to write everything down. We have so many notes in the house, they have turned into part of the decor!

[akavella]

lol. i know what you mean. that is what i have been doing...it is extremely frustrating when you are at your doc apt and cant remember a symptom that you wanted to tell them, or something important but cant remember. i also have difficulty finding words mid sentence, or forget familiar names and directions. does that happen to you?

[Rachel]

I have memory trouble, but I still usually refer to it as brain fog. It can get really bad sometimes. I once forgot who my son was. He ran into the room, and it startled me because I thought I was home alone, and I didn't know who the child was. It took a few seconds for me to remember that I had a child, and that the little boy who came into the room was mine.

It is scary when brain fog and cognitive problems get that bad. It leaves me mostly unable to communicate. My husband will ask me an easy question, and I'll just have to say, "I don't know." Because I really don't remember.

I take Cerefolin NAC, and this helps me a lot. I'm still always a little "foggy," and I still have times when it gets bad, but the Cerefolin NAC does significantly improve my memory, ability to concentrate, recall words, and carry on a conversation.

The really bad periods of cognitive difficulties I have had are believed to be caused by hypoperfusion. Hypoperfusion in the brain can really mess up one's thinking. Going to bed and raising my feet with pillows helps some. Sometimes I still have hypoperfusion even when lying down, and we just have to wait for this to go away. I have had the really bad periods of brain fog last anywhere from one day to a couple of weeks. I've talked with my doctors about the severity of my brain fog, but they haven't found anything wrong other than dysautonomia.

So, all that to say, your memory problems could very well be POTS related. This comes from the POTS Symptoms page: "Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)."

Rachel

[Sarah4444]

A big me too. I can forget the name of someone I've known for 20 years. I have also been attributing the severe brain fog to hypoperfusion, but like Rachel I also have trouble even lying down. It seems like I get a "warning", feeling somewhat light-headed, and if I'm in a situation where I can lie down immediately I can stop things from getting much worse, but if I am out or somewhere I can't lie down and I have to push through as the hypoperfusion gets worse and worse, afterwards when I can lie down, I will still have significant trouble while supine and will have to lie down for a long time before I start to feel like myself again. I also have trouble at doctor's appointments - I look normal but can't remember all the symptoms I have. I bring a list, but it is not as effective as it would be if I could concentrate and remember well enough to desribe things myself.

When it gets really bad I feel very confused - but it has been happening so long I think I have learned to disguise how bad it gets, so I appear to be doing better than I am.

[juliegee]

Big me too! I have gotten lost on my "beaten path"- the 5-10 square miles I typically travel. I have had moments (more like seconds) where I am completely lost. It gets much worse, I frequently can't think of words, lose my place in conversation, and have trouble recognizing people I know. So embarrassing & frightening.

This is weird, but TWO things have helped me. Turmeric, BUT I developed an allergic reaction w/i 10 days and had to stop taking it AND Plavix. Check out the Memory Loss section:

http://www.hughes-syndrome.org/symptoms.htm#memory

My daily headaches are also much improved....

Julie

[dianne.fraser]

I once walked into my bathroom to have a shower, and I realised that my towel was wet - I'd had a shower in the previous 10-20 minutes, but I'd forgotten.... Severe memory loss always indicates that I'm anaemic. If my iron is low, I go onto bedrest asap as this is the only thing I've found that resolves it. Odd but true - iron supplements actually don't resolve the type of anaemia that I get (the anaemia of chronic disease).

With best wishes

Dianne

[Sarah4444]

Dianne - I have been taking iron supplements for two years, and while I can get my hemoglobin into normal ranges, my ferritin is always low. Can you tell me more about the kind of anemia you are referring to?

[Chaos]

I'm really glad, yet again, that I can come here and see that I'm not alone with my craziness! It makes me nuts when I look at someone I've known for 20 years and can't remember their name. I can remember all kinds of details about their lives, but can't come up with their name. Or, today when I was writing an order to go get lunches, I was asking my son..."what's the other m-word that you put on hamburgers that's not mayo?" DUH!!!

It's really annoying too when I have a thought during a conversation and then it's GONE before the other person finishes a sentence. It'll happen multiple times during a conversation and all I have left is a nagging feeling that there was something I really needed to say. It used to happen once in awhile. Now it'll happen 10-20 times in a conversation. I ask my kids and husband the same question over and over.... It really is crazy making.

And it's really aggravating because I used to have a SUPER memory and a really big vocabulary. Now I am doing well if I can remember that I USED to know a really good word for what I wanted to express, let alone recalling the word when I want it.

Now I write everything down...that I can remember to write by the time I find paper and a pen.... but then I forget to look at my list, or my calendar or whatever. UGH!!

[jodielynn]

It is so nice not too feel alone..I get really bad brain fog also. This past november was my birthday and I couldn't even remember how old I was going to be. I also need to right things down to tell the drs.when a bad episode happens,but I keep forgetting to do that. My five year old son breaks my heart and well say mommy, why you keep forgetting stuff.then he gives me a smile and says I well help you mom!

[Rachel]

Chaos, I got a chuckle out of "the other m-word." I did something similar once when we were getting ready to have people over for hamburgers. I referred to ketchup as, "you know, that red stuff?" For the life of me, I could not remember the word ketchup!

Rachel

[Sarah4444]

I also have really bad word finding difficulties - I forgot.

[Sallysblooms]

My doctor has me taking Carnilear. L carnetine liquid. It rarely happens now. Maybe you can google it and ask your doctor.

[Brye]

I forgot to take my socks off before getting in the shower. A friend asked me what I did with my kids that morning and I had NO idea!! Hate it! I asked by cardiologist about it and he said it's probably my atenolol causeing it? I'm not convinced so I haven't switched yet. My primary doctor is looking into this as well. I get more forgetful when my vit d gets low. It's hard to know what to worry about and what's just normal brain fog a fatigue.

Brye

[cordellia]

my memory ranges from poor to nonexistent.

like you, i do NOT know what i did yesterday.

strangely enough, when i look at photographs my recall is jogged

and i am able to remember events that were lost to me.

the memory loss is frightening. i try not dwell on it...

it certainly forces me to be present.

[dianne.fraser]

Sarah - the anaemia of chronic disease (or the anaemia of inflammation) is an indicator that the body is struggling with inflammation, usually from an underlying chronic condition. In order to relieve the anaemia, you treat the underlying condition. Like you, my haemoglobin is always normal, but my iron falls rapidly when my illness gets out of hand (followed by a drop in my ferritin). I understand that throwing iron supplements at this type of anaemia can be counter-productive because iron exacerbates inflammation ie you can set up an inflammatory response, and get much, much sicker. Now when I'm anaemic I work much more intensively to ease my dysautonomia, beginning with going onto bedrest (and stopping anything that might have aggravated my illness, such as overwork).

Although this type of anaemia is an indicator of poorer health outcomes, I've made friends with it over the years - it tells me when I MUST lay down and tend to my illness (in fact, you could say it INSISTS). My failing memory is just the trigger for a visit to the doctor to check my iron.

Dianne

[Sarah4444]

Thanks Dianne!

[Sarah4444]

I just wanted to add that the memory problems we have are very similar to the ones described by patients with mast cell disorders.

For instance,

Mixed Organic Brain Syndrome as a

Manifestation of Systemic Mastocytosis

MALCOLM P. ROGERS, MD, KERRY BLOOMINGDALE, MD,

BENJAMIN J. MURAWSKI, PHD, NICHOLAS A. SOTER, MD,

PETER REICH, MD, AND K. FRANK AUSTEN, MD

Systemic mastocytosis is a disease characterized by an excessive accumulation of mast cells,

and associated with skin lesions, flushing, diarrhea, tachycardia, and psychiatric manifestations.

In order to define more clearly the psychiatric manifestations, ten patients with this disorder

underwent unstructured psychiatric interviews and a battery of psychologic testing. Both revealed

a pattern of cognitive and affective changes in the majority of these patients, best categorized

as an atypical or mixed organic brain syndrome. The cognitive changes consisted of

diminished attention and memory, and the affective changes of anger, irritability, and, to a

lesser extent, depression. These manifestations fluctuated with the level of disease activity, and

appeared in some cases to respond to histaniine antagonists and disodium cromoglycate, medications

used to control the excessive mast cell activity. It is important for psychiatrists to be

aware that mental status changes can represent psychiatric manifestations of mastocytosis, a

readily treatable medical disorder.