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Obsessing Over What I Can't Remember-Help

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
I haven't been able to sleep lately because I'm up worrying. My brain fog has been so bad that I can't remember my day. Sometimes something will come back to me a few days later. I think it is comparable to having a black out when you drink too much. It's gotten so bad I am obsessing over it. What did I do, who did I talk to and what did we talk about? How do you let this go? Does anybody else obsess over this?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
BEFORE YOU DIAGNOSE YOURSELF WITH DEPRESSION OR LOW SELF ESTEEM, FIRST MAKE SURE YOU ARE NOT, IN FACT, JUST SURROUNDED BY ASSHOLES. :lol::thumbsup:

Mya, I'm sorry both for your terrible brain fog and your obsessing over poor memory. Over time I made big gains in my mental state with vitamins, minerals, diet. When I then reached a point where my intense mental chatter was driving me nuts, I decided to try the supplement I've linked in the 2nd vid, Neuroprotek. Dr. Theoharides, talking in the first vid, is a mast cell researcheer. He found that mast cell cascades in the brain are involved in neurological symptoms as well as things like ADHD, autism. I've found the Neuroprotek to halt my monkey mind at those times when it's clearly out of control, within 15 minutes.

Now that I'm not in a totally overactive nervous system phase, I've also found EFT, tapping, useful.

I've just been looking at a really interesting blog re mast cell involvement in ME. It's become quite clear that I have mast cell issues. Under stress, when adrenals are stressed, my symptoms flare. I use a couple other supps to help dampen these reactions, royal jelly and mangosteen. Also quercetin. I'm linking the blog as well. Good luck to you.:hug:

‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬ https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q
Neuroprotek http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
https://mastcellblog.wordpress.com/2013/11/12/canary/
http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
 

GracieJ

Senior Member
Messages
773
Location
Utah
I feel your pain.

It happens on several levels. I am back at work, and it is a struggle. Oh, I saw this client last week? Really? Never saw them before in my life. Would swear it in court. Oh, there are my notes from last week, my handwriting... and my performance and bookings are based on keeping all this together. I am a year off from very needed pay raises because of this very thing.

it has only been the past few weeks that I have begun to read and learn about mast cell activation. @ ahmo's post above has my total attention on this memory issue. I began quercetin a couple of weeks ago with amazing results. I almost feel back in my own skin, more like the person I used to be, so this concept can be a huge part for some of us.

It is mental torture, playing with your own head trying to figure out what you don't know you don't know! :cool: Chill and just let yourself be in the moment sometimes. It is okay.

I feel lucky at the end of the day sometimes that I remember my own name and how to get home, because nothing else happens. Bills, phone calls, food needs, whatever, all get bumped because I cannot remember what needs to happen next.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
Ahmo, Gracie, I am taking the Pall Protocol and it worked well for memory issue for awhile. I am not sure what has been going on lately. It got so much worse. I would love to quit my job. I think I would feel much better and wouldn't have the mind racing thing. I can't figure out how we all haven't gone crazy. When the adrenaline kicks in, it's hard not to lose one's mind. My son thinks I should play video games. Apparently it helps him to "shut everything off" when he's worrying. He bought me HALO, which was sweet of him.

What is EFT?

I will try the neuroprotek. I have heard about the Mast Cell theory, but I haven't read much about it yet. As long as I up (forever), I will do some reading:bang-head:.

Thank you for the information.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Almost my entire life is like I am reading from a biography. Just the facts. I do not recall much of anything that relies on specific memories of specific events. I do know how I feel about things. I sometimes recall things when I get to a situation that prompts me. Sometimes memories just surface. I try not to dwell on this as it does not help, but that is easier said than done.

Try not to thinking of the word "nothing". Most people fail that abysmally. Unfortunately we may be one of the few groups who really don't think of it much of the time. We often do not see nor think about what is right in front of us. Yet I think the better strategy is either distraction .. do something else that has meaning to you; or coming to terms with the memory, that is understanding and accepting you have limited control over these things.

I probably wasn't much help. I wish I could do more.

Let me point out a positive. I know I lived through some horrendous years and symptoms. I remember almost none of it. If I did I might need psychiatric help for PTSD. Yet there is nothing there ... just the knowledge that it happened. Its a curse, but also a blessing.
 

oceiv

Senior Member
Messages
259
I haven't been able to sleep lately because I'm up worrying. My brain fog has been so bad that I can't remember my day. Sometimes something will come back to me a few days later. I think it is comparable to having a black out when you drink too much. It's gotten so bad I am obsessing over it. What did I do, who did I talk to and what did we talk about? How do you let this go? Does anybody else obsess over this?

I empathize completely with what you're describing. IMO, your experience is normal, when a patient has memory loss. The brain is used to having access to memories of what happened during the day. When we become unhealthy and have changes to our cognitive state, our brain tries to behave as it did when we were healthy. It tries to recall details from the past day or days. When we can't, it gets stuck in a thought loop. ME/CFS patients have limited energy. If we are using our energy for physical activity, there is no energy left for paying attention to what we do. This inattention plus complete physical exhaustion, can wipe out short-term memories.

Here's one suggestion. As silly as it may sound and as hard as it is to do, being kinder and more accepting of oneself can help. For myself, it's a struggle to always take that advice. This may sound trite, but It's OK/normal/understandable to be anxious about remembering things. Many patients have similar struggles. Jon Kabat-Zinn (mindfulness meditation expert) says in his guided body scan meditation "The way you are feeling is the way you are feeling." In case you find this approach helpful, here is a youtube link to this scan. It's available on CD, MP3 and phone apps. Also on Amazon. The relevant portion starts at about 1:53 in the youtube video. This line sometimes helps me to remind myself that I can accept what I'm going through without judging my reaction to what I'm enduring. I don't always succeed. But these memory losses in ME, fortunately can improve. I wish you good luck in improving.
 
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Mya Symons

Mya Symons
Messages
1,029
Location
Washington
[/QUOTE]Let me point out a positive. I know I lived through some horrendous years and symptoms. I remember almost none of it. If I did I might need psychiatric help for PTSD. Yet there is nothing there ... just the knowledge that it happened. Its a curse, but also a blessing.[/QUOTE]

This is true. Also, I never stay mad because I can't remember what I am mad about and who I am mad at. So, that's a positive.

What troubles me the most, I think, was that I was never able to finish college. I had children young so I spent my first adult years while I was not sick raising them. I went back to school, finished half my bachelor's, then got sick and couldn't work, take care of a family and go to school. At one time I had a 3.9 GPA and was able to take classes like Calculus. Now I can't even remember how to spell it or have the energy to think about how to spell it. My father for years has bothered me about going back to school because he doesn't understand. Of all the symptoms, the memory and concentration problems are what I dwell on, am angry and most resentful about.

I'm going to try to think positive and not be so hard on myself. Hopefully I can do it.
 

L'engle

moogle
Messages
3,219
Location
Canada
I'm tough on myself about the cognitive aspects. I can't seem to help it. I had a great memory when I was younger, won a school math contest once. Being that person who makes foolish mistakes is rough on my self esteem.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
My husband and I talked about this and it is worse than I think. He has noticed a change from the usual "Fibro Fog." I am missing days and even weeks. We both work together and people at work have noticed too. I am also remembering things from when I was a child very vividly and talking about them a lot. I had a grandmother with Alzheimer's and it seems similar. Just in case we've decided I am going to go to the doctor on Monday.

I looked back in my notes and found something from a CFS conference I went to. The notes are about a study which doctors found pinhole lesions in the brain possibly caused by lactic acid build up pushing through the brain. I can't find the study anywhere. I am interested in reading it. I am wondering if my increased memory loss is actually caused by going to the gym 3 times a week and the added lactic acid build up. It seems like it might fit since the memory loss coincides. Does anyone know where I can find this study?
 

meandthecat

Senior Member
Messages
206
Location
West country UK
I empathise with all the posts, which is scary because it brings back how it was for me. My memory got worse till I had an almost complete episodic and short term memory loss and for about 3 yrs I laid down little if any memory. I am stronger now and my memory is ok but when I am tired I get blanks, as if it had never been, and these are warnings to ease off.

For me recovering memory was tougher than losing it, in 3yrs I had moved on, was a different person and suddenly images passed like shooting stars across the black skies of my mind and then a shower and then a maelstrom of images of someone who was once me and over the next 2 yrs I integrated these memories but they were shorn of association, no emotion, no nothing.

Another 2 yrs on and I am using them to understand who I was and who I want to be.

This is the only place that I encounter understanding of these bizarre issues which is a gift but is crazy because we are not that different...are we?

Thank you for being out there
 

perchance dreamer

Senior Member
Messages
1,699
I still have brain fog, but the SLCP Longvida form of turmeric helped me tremendously with short-term memory problems. It took about 2 weeks to see the effect.

I've been taking this brand, which I get from my nutritionist:

http://www.protocolforlife.com/Prod...00-mg-50-Veg-Capsules.htm?cat=Cognitive+Brain

Amazon sells a similar product, but it also has standardized blueberry and grape extracts. I'll try it next:

http://www.protocolforlife.com/Prod...00-mg-50-Veg-Capsules.htm?cat=Cognitive+Brain

I got the memory improvement from only 1 cap a day, 400 MG, but I've added a 2nd cap in the late afternoon because I have a family history of Alzheimers. Longvida crosses the BBB and is thought to reduce brain inflammation. Here's a link:

http://longvida.com/

It made me really sleepy at first, but doesn't have that effect now.
 

Tunguska

Senior Member
Messages
516
I can't remember the contents of conversations with people that have died that I know were meaningful. It kills me like nothing else. I don't know how many times in a day I forget what I was doing and takes 10 minutes to figure out. Go blank and "oh crap not again", gets impossible to make light of it when it seems so permanent.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
I still have brain fog, but the SLCP Longvida form of turmeric helped me tremendously with short-term memory problems. It took about 2 weeks to see the effect.

I've been taking this brand, which I get from my nutritionist:

http://www.protocolforlife.com/Products/Category/Cogumin-SLCP-400-mg-50-Veg-Capsules.htm?cat=Cognitive Brain

Amazon sells a similar product, but it also has standardized blueberry and grape extracts. I'll try it next:

http://www.protocolforlife.com/Products/Category/Cogumin-SLCP-400-mg-50-Veg-Capsules.htm?cat=Cognitive Brain

I got the memory improvement from only 1 cap a day, 400 MG, but I've added a 2nd cap in the late afternoon because I have a family history of Alzheimers. Longvida crosses the BBB and is thought to reduce brain inflammation. Here's a link:

http://longvida.com/

It made me really sleepy at first, but doesn't have that effect now.

Hi @perchance dreamer -- the first link doesn't work, nor does the last one. It seems like there are quite a few brands that feature the 'Longvida' form, but I'm curious which specific one you're taking?
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
@ahmo -- that Neuroprotek is so unbelievably expensive, at least if one doses per body weight as they suggest. Are you doing that or are you able to find benefit from smaller doses? Thanks.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@dannybex The dosing freaked me out, too at first! But after watching the brain allergy vid, I decided to give it a try. I dose by self-testing. I think the most I've ever used is 3 ina a day, possibly 4 once or twice when I was in strife, tho I don't recall this. According to the instruction, I'd be taking 5-6/day. Presently, since I've been using FMN form of B2, I'm taking generally 1/day. A few times I've thought I wouldn't need it any more, but it continues to be really useful. It's certainly the most expensive thing I use, and given the amount of distress my brain can experience when it's inflamed, I'm very grateful for it. sregan found another luteolin product from Swanson's. I decided in favor of this because Theoharides is a pharmacologist.

There was a recent post announcing a teleconference w/ Theoharides June 2. A couple people commented on that thread that it had been a waste of money. My understanding is that Neuroprotek is particularly aimed at mast cell reactions in the hippocampus. (I could easily be wrong her, haven't looked at the material for awhile). Maybe they had no problems here, maybe they were taking it for other mast cell issues. (I meant to go back and suggest that, but haven't made it there yet.) I seem to fit the profile. As soon as I started NP, I was able to quit the hypothalamus glandular I'd been relying on for a couple years.
 

L'engle

moogle
Messages
3,219
Location
Canada
I forgot the word 'curb' today. When it got cool at dusk I went down to the edge of the street and sat on 'that piece of concrete a few inches high that separates the road from the grass or whatever when there isn't a sidewalk'. Curb, it's called a curb and I finally remembered it.
 
Messages
71
Location
Metro Atlanta, Ga
@Mya Symons, You might want to have a look at this article, "Memory Loss Can Be Caused By Over-The- Counter Drugs". Sorry, I don't know how to transfer a link from one website to another. Some drugs can inhibit activity of the neurotransmitter acetylcholine, which plays a critical role in memory. I could not remember something I read 15 minutes later, not just sometimes but every time. For me it turned out to be the drug doxepin which I had taken for 17yrs as a sleep aid. I've been off it for about 3 mo and my memory is slowly coming back. As for those who are at risk for Alzheimers, I've heard it is good to take high dose Vit E.
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@dannybex I neglected to say re Neuroprotek, that this is especially pricey for me, as I now have to pay almost 30% extra for exchange rate, plus about $25 for postage (when I buy it the most economical way, x4 bottles). So NP is truly a gold-plated addition to my supps, and worth it.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
That's good to hear you're only needing one or so per day @ahmo -- I got some last year, maybe last August, but was SO disappointed to learn that the dosage was calculated by body weight, which meant that I would need 7-8 capsules per day and would need a new bottle every 8-9 days or so!

Even at one or two caps it's too pricey for me right now, but will try to remember this for future reference. Thanks.