Whining, Please Bear With Me I'm So Confused

[all4family]

Hi all,

I have been doing a lot of things lately as far as working. My HR watch broke, so I don't know what it has been at. I have been told, and heard so much that you have to get upright as much as you can, to improve things. I don't know if I just think it will help, or I am just angry about not being able to do things. I had to lay down, because all day I have had some strange stuff going onwith my head. It's different then brain fog. I used to have this severe all the time. I have really bad strange vision, and am like I am drunk bad. I slur my words, and can't think at all. Some of this is like the brain fog, but it is more pronounced. I can't think of my words, and can't remember anything. I don't know how to describe it. It is like I am just before I faint, but instead of fainting I just stay like this. I am unable to walk right now, I can't stand on my legs without them going everywhere. I feel a little better laying down, but when someone even talks to me I can't make out the words they are saying. It has taken me a long time to write this. I am looking at it, and have to keep thinking this is a computer you are typing to dinet. This is scarey, although I had this worse before I fear it will come back like this, and wonder if this is POTS, or something else neuro. I have the antibodies to the ganglia, and wonder if that is what causes this. I hope this makes sense, because I am just so confused, and desperate not to end up really bad again. Any thoughts? And please forgive me if this is confusing. I am confused.

Suzy

[firewatcher]

If I am on my feet too long, I get EXACTLY the same way. People will think I am drunk, it's like part of the brain just shuts down. Words are hard to read or understand, I've got no attention span, everything just kind of distorts visually. Sorry, sweetie...been there do that.

Lay down and put your feet up. Get as much blood to your brain as you can.

Jennifer

[all4family]

Thank you Jennifer, How long does is take you before you feel better. Glad to hear I'm not alone. I used to have this 24 hours a day, so when I get it now it is scarey, and I think oh No it is coming back. I get it in spurts now, but it usually goes away if I lay down for just a bit, and it seems more severe.

Suzy

[firewatcher]

Suzy, it takes a good 45 minutes for my brain to recover. I got like that every afternoon for several months during my big crash. It got to the point where I couldn't understand print. I'd read the words, but they did not make sense. I had to "read" books to the boys that I had memorized and recite them laying down. It was scary! I left a whole load of groceries in my truck once. I just got out of my truck and forgot where I had been.

LOTS of gatorade and put your feet UP!

[janiedelite]

Suzy, it does sound like you may have pushed your body too much by trying to be upright more often. Lying down should help at least somewhat with your severe brain fog, but sometimes when I'm in a bad flare I have a lot of brain fog while lying down and feel slightly worse when upright.

This is most likely just an exacerbation of the brain fog since you've been increasing your activity. I might suggest for you to see your doctor when you're able but I know you've had a lot of difficulty with your local medical community. Keep drinking and resting. Let us know how you're doing, Janie

[all4family]

Hi Jennifer,

Thank you so much! Was all your groceries bad?? I am feeling better. I do want to go get some gatorade. I think it scares me so much because when I was on medication I was like that day and night. I always fear that "it" will come back, for permanant again. I love that I can come on here, and feel "normal" to some degree. When I was bad all the time I couldn't remember my husbands name, or my birthday. I feel really relieved that it is passing. I guess I just panicked. Thank you so much for your support.

Suzy

[mae]

All4family,

I get this way also and it happens almost daily especially if I don't get sleep and wake before 10 am OR try to live a normal life. Its bad when I walk around in public and have to interact like after a doc visit speaking to a receptionist I'm totally GONE and don't even know what to say and I have to depend on my husband to finish. I never go out alone unless I feel really good which is maybe twice a month . It makes me feel like I'm in another world, I honestly thought I had brain cancer or something severe, but it goes away once I lay down at least an hour and even better if I just go to bed for the night and I wake with a new brain. There have been many nights I've been so bad with symptoms I really didn't think I'd wake up but anyway I'm still here ....and your not alone with this PROBLEM for sure!

Mae

[firewatcher]

Yes, the groceries went bad.

My husband took me to a doctor's appointment when this was happening once and I almost signed in as the guy before me. I just copied the name. I had to strike through when it occurred to me that they wanted MY name! I forgot my husband's and kid's names too. Definitely frightening. Take care, sweetie!

[all4family]

Thank you so much Janie, I think I will write this down, because it is hard on me when it happens, and when I go to the doctors at Mayo where I don't have trouble at, I can tell them. I used to have it 24 hours a day, and that was when the only way I could be was with my head hanging over the edge of something. I tried to come in to my bedroom to lay down when it started, and my legs gave out before I got through the door. Everyones words were slurring together, and so were mine. Everyone kept asking if I was ok, and I just kept saying huh? I couldn't process the question. I don't know why I torture myself like this. Every little good moment I have I try to elongate and make last as long as I can. I guess I just want so much to be like myself again ! Don't we all. Thank you so much for your support. I can't tell you how much it means to me.

Suzy

[Katja]

this happens to me - I hate it. I describe it as being "drunk," as well. people stare at me like they can't figure out whether I'm drunk, high, or worse . it's gotten a lot better with Florinef and Midodrine, though. this used to be every day for me - now I only get it rarely. it was the main reason why going off Florinef, for the ANS testing, was pure h***.

[bjt22]

I understand what you're talking about. My husband says he can always tell when I'm doing really badly because he'll come home and I'll have the television going as loud as it can go. It isn't that I can't hear, it's that trying to listen just isn't working, if that makes sense. For whatever reason, if I can't really keep up with what they're saying, I think it will be easier if I just turn it up louder.

I've done some really goofy things. I've gone up to the checkout counter and forgotten how to pay for things. I was at a store with my husband, didn't feel well, and decided to go to the car. I got lost, and this very elderly lady pulled over and asked me if she could help. I forgot how to vote, and the ancient poll worker had to come and help me. Just the other day, I was trying to tell one of my sons something about my other son. I could not remember his name. I finally just said "You know! That OTHER brother you have!". When I was at my worst a few years ago, with a whole lot of things really going on with all of this stuff, I spent a year not being allowed to cook. I'd sit right there in the kitchen and watch something burn yet couldn't get it together enough to turn the stove off. I still can't leave the kitchen while I'm cooking.

[Rachel]

It sounds like you have been spending more time upright lately. If you are getting less blood flow to your brain (sounds likely), then that will make the brain fog worse.

My cardiologist told me that when my brain fog gets severe she wants me lying down in bed, not just flat, but with my feet elevated. You want to get that blood back to your brain. Push salt, fluids, and Gatorade.

For me, recovering from a bad brain fog spell can take anywhere from an hour to several days. Several days only for the really bad brain fog days (like when I don't recognize my apartment or my son). Pacing myself and knowing when I need to lie down and for how long has been very helpful in keeping the brain fog under control.

Hang in there and take care of yourself.

Rachel

[all4family]

Hi Mae,

That is exactly what I think I have been doing..trying to live a normal life. I get the confusion and brain fog on a regular basis also, but tonight I was unable to control my speech, and legs. I've had that, but this time I didn't come back for a while. I can't tell you how many times I have gone to sleep thinking I wouldn't wake up. but the pain and sickness just knocks you out, and thankfully I have always woke up. I do have a tendancy to worry about cancer, because of a blood test I have had, so it is important for me to feel like I am getting better so I won't worry about that. I would think I would be used to this by now, but sometime's it just really shakes me up. Thank you so much for sharing. It helps to know I am not the only one to feel like this. Helps me not to worry about all the "other" things!

Jennifer,

I am cracking up laughing (internally of course or I'd faint!) I have done almost just that before. I was filling out paperwork at the doctor, and I put my daughters birthday in where it should have been mine. And the worse part was when the nurse or whoever was going over it, and they repeated to me the information I had put, I nodded my head in agreement. Then she said so this makes you what 11 years old. And I again nodded my head yes.....until she started to giggle. Then I realised I had done something wrong, but she still had to explain it to me!! Red faced I made an excuse that I hadn't gotten any sleep the night before!! Thanks for sharing that!

Suzy

[EarthMother]

(((((((Gentle Brainwaves)))))))) your way.

I had a "drunk" day just last week. They are so awful and strange. Today has been a laying flat day for me (accept for an hour or so I was able sit slouch in my wheelchair on my patio out back. It felt good to be in the fresh air a bit at least.

I am going through a bad crash right now, and like you as I have remeberances of how bad it has gotten in the past, I begin to worry that THIS episode is going to deteriorate into how bad it was back then. It's like re-traumatizing ourselves again. I find it most difficult to uncouple those memories (hospitals, bad meds, bad reactions etc.) with the bad symptoms that are happening now.

I wish I had some wise woman words to help you through this miasma, but I just try and hold on as best I can ... remind myself "that was then, this is now". I am not the same woman I was then. And ofcourse I think of all my POTS familly here who are with me in spirit.

I'm with you, too.

~EM

[HoudiniCat]

Count me in on this too. I used to get these episodes all the time and thankfully, it only happens occasionally now and I can pretty much pinpoint it to the times I?m overdoing it. Ah, the ?drunk days?. Walking around in a dream state, slurring my words, can?t remember a thing. Days when making breakfast is just surreal. Step #1-Pour cereal in bowl (can?t find cupboard with bowl; can?t remember why I am holding a box of cereal). Step #2-Pour some of that cold, white liquid from the fridge on top of cereal (you know, that stuff in the carton that comes from cows that people drink ? apparently the word ?milk? has been temporarily erased from my memory banks.)

I used to fear that this would be the precursor to a faint but now I know I can stay this way indefinitely and not faint. And I used to think it was from the meds but I?m off them now and this still happens. It?s very strange. Nothing to do but call it a day and lay down for me. Somehow my brain gets rebooted overnight and I wake up fine ? ready for some cereal with milk!

[potsgirl]

Hey Suzy~

I get the same thing, but thankfully it isn't very often. When I'm in a 'down' period, it's like I've had a stroke. I can't find the right words, I'm confused, and I can't remember what I was just talking about, even if it's only been a couple of minutes. I feel like a complete idiot, and usually go and lay down in bed for an hour or two. Sometimes this helps, other times not, but I hate the feeling of not being able to be coherent. I consider myself a pretty intelligent person, and it makes me really scared when I feel like that.

I'm so sorry you're going through this! As if we don't have enough to deal with, hmm? Please rest and try to convince yourself that this will go away - because it will! I'm sending positive energy your way, and you're in my thoughts.

Cheers,

Jana

[summer]

Yes, yes, yes!!!! I am so glad to read the examples you guys have given. They sound as crazy as some of the things I have done. I don't try to explain the severity of this fog to many people because I am sure they do not believe me.

I have been in stores shopping and then found myself unable to remember which store I am in, and which way to go to get out. I have "lost" my kids in my mind a number of times because I did not remember they went to play at a friends house. I have been in church and not been able to find a number in the hymn book. I have looked at my watch and not been able to tell what time it was. It truely is scarey at first, until after a while you realize eventually it will go away - then it's just embarassing.

Anytime I have tried to explain this brain fog, people always say, "Oh yes, I must have what you have. I forget things all the time......"

Summer

[futurehope]

My favorite description to explain this to someone is:

"Sorry, my brain isn't working right now."

[janiedelite]

Suzy, I hope you're having a better day today!

I think the scary thing about this brain fog is not knowing when it will happen. I have banned myself from transferring funds between our online bank accounts because I inevitably put in one-too-many zeros or transfer money from the account I meant to transfer money to! And I do this while lying down! I double-check myself before I finalize the transaction and think "that looks right" until the next day when I look at our balances and wonder what happened?!

Brain fog is the main reason I can't trust myself to work as a nurse anymore. I mean, if I can't do online banking safely how can I measure and dispense medications and calculate IV rates??? Because the scary thing is that I can look at my calculations and firmly believe I've done everything correctly even if I am glaringly wrong. Pre-POTS, I was the one everyone came to in our unit to verify complicated drip rates or med calculations...

Summer, I don't have kids but I totally get what you're saying about "losing" things. For me, it's always some important paperwork or just an everyday item and I'll regularly find things in the freezer, fridge, etc. like my wallet or keys .

My hubby is taking classes and I edit his papers for him because I've been really good at grammar in the past. I often have to read each sentence 3 times to comprehend what the words are, and sometimes I just forward them to my mother because I'm too exhausted or I just don't trust my work anymore.

Suzy, what you're going through sounds so extreme in comparison to my daily brain fog issues. Don't feel badly about not being able to push yourself. I'm glad you started feeling a bit better after lying down and I hope you continue to see some improvement!

[all4family]

Thank you all for the support, and sharing your experiences. It really helps to know that I am not the only one to feel this way. I definatly needed rest. I was trying to reply last night, and somewhere during the reply I fell asleep on the keyboard. I have no idea how many sites I visited in my sleep, but I woke up still on the computer. I had a blank screen open which was fitting, because I was blank! I was supposed to go grocery shopping with my mother this morning, and even though I used my wheelchair, I still got real bad in the store. Seems how it was a store I fainted in before I didn't want to take chances, and had to cut it short. But before I did I was circling the store in confusion trying to remember what I was there for. I would look at my list, and as soon as I tried to find the item, I forgot what the item was!

Katja, yes. Drunk is a great description for this. I often wonder why people drink. I think to myself you can have this. I will be the sober one! If only we could choose! I am glad you found something that helps though.

bjt22, I find that my family is also usually the first to notice I'm not doing well. I guess they have seen me hit the floor enough times, and don't want to go there again. They were asking me yesterday if I was ok, and I wasn't understanding, and just kept yelling what?? It frightened me when they talked, because I couldn't grasp what they were saying. I like that. The OTHER brother! made me laugh!

Hi Rachel, The last doctor I seen about OI, moved, and I haven't talked to another doctor about OI specifically since. It helps to know your doctor said that, because the advice, (feels like critisism) I get is to "get moving, and your body will get used to it" . That helps! So I am stuck between what to do to feel better. That is funny about the apartment and your son, but sooooo true! I have looked at my husband, and all I could think was why is this man talking to me, (and I wish he would shut up!). Thankfully he doesn't get offended by it anymore.

Hi EM, I am sorry you are having these days too! Maybe if we go hang out at our local bars no one will notice Ha Ha!! Yes that is exactly how I feel. I am re-traumatizing myself. The fear that we can go back to our worse days is more then I can bare sometimes. But like you said having a POTS family here makes it a little easier. Thanks for the support.

Hi Houdinicat, your cereal story is so funny!! And the worse part is I totally relate!! Getting lost in the kitchen is so easy to do! And only somone on here can relate so well to that. I think that is why I like small places. Less to confuse me. Here is to more clear days with some cereal, and ummmmm....oh what was that stuff....might need to scroll down!!! Ha Ha!

Hi Jana, It is so scarey to feel this way. I had people try and convince me for a long time that I was losing my mind. And this did not help to bolster my confidence that I wasn't. But luckily I had a counselor at the time that said I was fine. I feel like I am pretty inteligent too, and when this happens it makes me think gosh what is wrong with my brain, why can't I get it to work? I know I want to. I think I try to hide this symptome the most. Thank you for the support.

Summer, Thank you for sharing that. I feel really lost in big stores. I usually end up making some excuse like I didn't sleep well. But people look at me strange. Especially because I sound drunk because my words are slurring, and if I am standing, or even sitting I am swaying. Does anyone else do that where there body just naturally stands crooked? Thanks for sharing that.

Futurehope, thanks for that. I will have to try that. I always say I am tired, but I don't think it explains it.

Thank you all for your support. Instead of getting myself worried about well maybe it is this or this, or maybe I will never get better I am able to today rest and say to myself well everyone else on dinet goes through this too. So I must be fine. (as fine as any of us can be!) I can rest, instead of trying to find a solution. The solution is obviously rest!! Sipping Gatoraid and lounging around for the rest of the day!! You are a wonderful group of people who truly have great compassion. Thank you!

[pearsjon]

this happens more often when i eat. like in the middle of a meal i will start to fall over, but concsious. then after the meal if i stand i will fall.

try explaining to the people waiting to be seated at TGIF, after falling into the crowd that you are not drunk.

it can also happen when i stand or sit too much.

and don't even get me started on the word recall. i describe everything about the word w/ hand signals and still wait for someone to "get it" for me.

i often transpose my letters (typing), if i can even remember how to spell them.

i just thank god my hubby knows my hand signals by now.

as everyone else said,put your feet up and relax.

of course i like to spew things out that i don't do myself. but i know that.

[all4family]

Janie, Thank you so much. You are such a sweet person to come back and ask me how I am today. I am having a better time, as long as I stay down, and that includes sitting. I don't even seem to be able to sit today, as I have tried. But I will take laying down and feeling ok over laying down still feeling sick anyday. That is so funny, but scarey about the money! If I "accidentally" paid too much to our mortgage we would never get it back!!! I totally understand why you don't work. I cannot imagine trying to hold down a job. Even something simplistic would confuse me. Especially if I had to stand! Nursing is hard work. I have gone down the list of different jobs I could apply for, but have found that I would have a problem with all of them. Maybe one day there will be a great job with a bed, that you only have to do the work when you feel up to it!!! I would qualify!! Take care. And thank you so much.

Suzy

[Heiferly]

I'm in too. I have to say I'm slightly relieved to see so many others relating the same types of episodes, even though I wouldn't wish this on my worst enemy. I'm very grateful that my better half has become an expert at guessing the intent behind my slurred speech and bizarre attempts at communication during these episodes. Oh, and he has affectionately termed my lack of coordination when walking during these times my "bobble body" (the inverse of the better-known bobble-heads).