Topic: about neuro-lyme: not sure i can ask this right
sometimesdilly
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posted
but i'm going to try.
has anyone else with bad neurological lyme figured out this difference for themselves?
this is so difficult to put in words. the sensation is of a layer of wool around my head and in my brain muffling sounds/words that come in and go out.
i FEEL and THINK i can not be thinking or saying things well, because I can't HEAR my own thoughts, much less anyone else's. Sound familiar to anyone?
So, for years I've given up hope of being able to really *think * well, or to explain myself well.
and then, last month, i had a flash of insight i can't explain, and i wondered, maybe i'm THINKING OK still, even communicating OK still, at least some of the time,but because i can't HEAR myself at any level, i feel like/assume that i am not.
does that make sense? anyone else see/feel the same thing?
it a weird kind of way, it is a very hopeful thought....
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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clairenotes
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I followed that!!
You always sound extremely coherant to me.
Claire Posts: 1111 | From Colorado | Registered: Oct 2006
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sometimesdilly
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oh, the biggest smooches ever, Claire, for saying so...
dilly
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Vermont_Lymie
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Hi Dilly --
that sounds right and makes sense to me!
I understand what you are saying, but for me it was different. Lyme seemed to have changed my personality. So that I HEARD my internal thoughts, but it sounded like someone else!!
Now, after 9 months of lyme/babs tx, I sometimes get glimpses of the person that I used to be! It is very exciting. I do not know if that makes sense for others... Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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posted
dear Vermont-
wow. your experience sounds even more difficult- how awful to feel like someone else is talking in your mind instead of you!
i'm so glad you're beginning to reclaim you- you have every reason to be thrilled.
and IMO, the kind of experience we're describing is way beyond the ability of anyone who hasn't been here to understand. i mean, most of them don't even understand lyme fatigue, and everyone has had the experience of being exhausted.
that's not a complaint, just reality.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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treepatrol
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posted
Hey sometimes a dilly are you taking anything for swelling? inflamation?
When I was having lyme induced encephilitis first it hurt but the then after the real Bad inflamation was gone. I had similar symptoms to yours But after a month or so of ibuprophen and alieve it went away?
I think the arteries and veins & nerves get so inflamed they create this pressure around your head that get misinterpted signals?
Now Iam speaking of months after the encephilits was gone .
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
minoucat
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posted
Dilly, what you describe seems to be very common, and the people I've talked to often use the same words you do.
I experienced this woolly feeling myself for years. Also a kind of "time lapse" feeling, when I felt that I was (and I actually WAS) responding and reacting completely out of sync with the stimulus (question, oncoming car, etc.) It's what made me give up driving for a while.
I think both conditions are real, but not always simultaneous -- I know that at times I was thinking poorly, AND at times what came out of my mouth was not what I meant to say. Sometimes it was both together, sometimes not.
It may be that separate and specific areas of the brain, like the areas that control speech, emotion, physical coordination and sensation, are all affected separately. Yesterday, for example, my speech and my cognitive thinking were fine, but I was dropping everything and walking into doors.
And I remember very distinctly one time writing an email that I thought made perfect sense -- but when I read it the next day it was a total garble. I'll never know if I really was that garbled, or if the garbling occurred in the transfer from words in the brain to words on paper. It was hugely upsetting at the time.
The woolly feeling, the floaty head stuff, and that weird dissociation is gone for me -- I still have Bb but appear to have gotten rid of the babs and bart. I don't know if it was something to do with specific coinfections, or blood flow to the brain, or what.
Dunno if that helps. I guess the basic good news is, I'm far more functional now than I ever thought I could be. Seen the same thing happen for the hubby.
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sometimesdilly
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posted
hi tree, you good soul.
no, i'm not taking anything specifically for my encephalitis-related swelling.
Really bad headaches have been a constant over the Lyme years- alieve works sometimes,sometimes not. i'm going to ask my llmd on monday whether or not he suggests anything.
my primary care DR says the only med for brain inflammation is steroids and offered to prescribe them (no thanks)
i know Carol in Pa and others have mentioned alternatives to help with hypo-perfusion.
Cat-
thanks for your reply. i've been seeing here recently the suggestion that babs plus bart can be responsible for many neurological symptoms, and for making tx more difficult and lengthy in general. will ask my llmd about all that too, especially since we have never discussed bart as a possibility (just babs).
as to what you're saying about different parts of the brain being responsible for different processing tasks. YES. the day you said you could think but not walk straight (literally) sounds familiar.
and yes, i experience the time lapse thing all of the time. it makes conversations very difficult- i find myself concentrating like mad to hear others, and yet interrupting them so often and so oddly strangers for sure must think i'm rude and oblivious.
what i was trying to ask - not very well- was if i was being realistic.
i'm at the point in this long journey, i think, when i am coming to terms with the fact that i might be one of those unfortunate folks who DON'T really get well. A year ago, it would never have occurred to me that i wouldn't at least be MUCH better by now, if not almost all the way there.
But I'm not. Not even better at all, for that matter. I'm not feeling sorry for myself or despair or even especially disappointed- i've been through that valley already.
i'm just trying to assess-- ok, worst case i stay just like this. what then? how bad is this,and what will i be able to do?
and really , it seems hopeful to me that maybe the damage done to my brain is to my PERCEPTION of myself, not to my underlying self.
that's what i was trying to say...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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treepatrol
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quote:Originally posted by sometimesdilly: hi tree, you good soul.
no, i'm not taking anything specifically for my encephalitis-related swelling.
Really bad headaches have been a constant over the Lyme years- alieve works sometimes,sometimes not. i'm going to ask my llmd on monday whether or not he suggests anything.
my primary care DR says the only med for brain inflammation is steroids and offered to prescribe them (no thanks)
dilly
Hi thanks I really had to stay on those ibuprophen then switch to alieve back in forth for months before it let up completly.
Now though I have to watch anything with acetametaphen because when I no longer need them and ween off I get Restless leggs real bad but it takes over 3 weeks taking any {acet} before this occurs.
Now Iam just taking asprin or my new old painkiller percodan with asprin in it. hydrocodon with asprinNOT acetametaphen.
I will use acetametaphen again just not for to long of stretch.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
bejoy
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posted
Tree, Dilly, I have a similar experience, probably also related to swelling.
My neuro/cognitive symptoms decrease with anti-inflammatories, and also with my cortef prescription, which is highly anti-inflammatory.
The neuro-cognitive symptoms also decrease with anti-histamines for allergies, when the trees are in bloom.
My anti-inflammatory regimen of the day keeps me from answering the remote control, and saying that popsicles are a good choice for dinner.
I had not related it directly to encephalitis, though, which I have not had, to my knowledge, since I was a child. I wonder what the direct link is between inflammation and cotton brain.
It makes me wonder what systems might be affected and how, in the lymed pituitary and stress hormone cascade.
Anyway, Dilly, I know what you mean.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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treepatrol
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quote:Originally posted by bejoy: Tree, Dilly, I have a similar experience, probably also related to swelling.
My neuro/cognitive symptoms decrease with anti-inflammatories, and also with my cortef prescription, which is highly anti-inflammatory.
The neuro-cognitive symptoms also decrease with anti-histamines for allergies, when the trees are in bloom.
My anti-inflammatory regimen of the day keeps me from answering the remote control, and saying that popsicles are a good choice for dinner.
I had not related it directly to encephalitis, though, which I have not had, to my knowledge, since I was a child. I wonder what the direct link is between inflammation and cotton brain.
It makes me wonder what systems might be affected and how, in the lymed pituitary and stress hormone cascade.
Anyway, Dilly, I know what you mean.
Lowering the inflamation would cause that better blood flow.
At least for a while.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Marz
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posted
Is it common you become hyperalert when carrying on conversations with people and hope you appear normal?
I feel it's adrenaline that gets me through. I used to have the layer of wool feeling, but now feel too tuned in to everything.
I am exhausted after just having breakfast with a good friend who I certainly don't have to impress.
My whole body becomes tense and headache gets worse while conversing. I'm trying to tune out noises and music while we talk.
I care about people, but am impatient for them to finish talking and need to repeat in my mind while they're talking so I don't forget what I wanted to say.
I end up always feeling very selfish and self-centered and tired and wanting to crawl into a hole.
I always wonder if I'm just a maladjusted person, or is this lyme.
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sometimesdilly
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Bejoy- what, popiscles *aren't* a good choice for dinner?!
Marz- i haven't been hyper-alert about anything for 5 years. but yes, conversations are very tiring. i have to tune out people even if they're talking directly to me if they talk too fast, jump from one topic to another without transitioning- things like that. just isn't worth the effort.
i've found that with people i don't know well, listening to them - or looking like i am, anyway, is preferable and easier than trying to keep up.
a long-winded bad brain day way of saying- i suspect it is Lyme you're experincing. hang in there....
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Thank you for your post. Your questions and others' answers made great sense to me. I have struggled with this brain feeling for so many years and if I look back I can see how I have slowly backed away from all of my friends.
Just couldn't take the stimulation. Even friends who know about Lyme and are very caring and giving. I just cannot tolerate the sensations and the way I experience them.
I have also allowed myself to ask the question that maybe I'll just always be like this. And if the answer is YES, I will deal with it.
I moved to my current neighborhood a year ago to be closer to my daughter and doctors. I have seen many neighbors talking together, getting to know each other, etc.
There is one woman who lives across the street who has made endless attempts at being nice to me. During the rare times I am outside, she will come right over and she is truly very sweet. I finally decided to tell her about Lyme in easy terms and that I can't be as social as I used to be.
I told her that I would only talk about Lyme and my symptoms once. I told her that I was so touched by her caring ways and that I hoped we could continue to talk (mostly her) and I didn't want her to be offended if I had to cut our conversations short.
That has worked out nicely. Most of the people here are young with children. The women talk to each other while they are pushing strollers or pulling wagons. I remember when I was doing the exact same thing.
But I CAN'T anymore, and this swollen, furry, damp head stuff is why. So I spend time thinking about what I CAN do. I admit I get in a blue funk a lot of the time if I compare myself to others I see. But that is a waste of my time.
I have to practice gratitude (and practice and practice.) If I can stand in my kitchen long enough to make a sandwich and put the right things on the bread I am doing well. If I can remember what day it is I am doing well. If I can drive myself somewhere out of my subdivision I am doing well.
If I can make a difference in someone else's life by expressing my caring, understanding and love, I am doing well.
sometimesdilly
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posted
Janet-
what a great attitude- and a generous one.
and i empathize very much with your experience with friends. I think Lyme takes a particularly harsh toll on friendships. Marriage too, but at least in a (good) marriage your partner is still there every day, and will be even if communication is just impossible for days or weeks on end.
friendships, though. that's different. you have to remember so much to keep one going, and stay on top of things enough to avoid being awfully neglectful, which even the best of friends don't really understand after its happened a hundred times.
and in so many ways the ability to feel connected, to have that almost PHYSICAL sensation of being connected (do you know that feeling?) is so radically disrupted.
3 years into my having Lyme, my dearest friend,one i had known and loved for over 25 years, died very suddenly. It was one of the weirdest most awful most disconcerting things yet, but I could not FEEL my grief for his death. Trust me, I grieved, but soundlessly, without feeeling the emotion of it.
This from someone who literally couldn't hurt a fly because I'd be afraid of making fly-babies orphans.
This is definitely a life-altering disease....
dilly
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randibear
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i don't know if this is the same thing but after a day of being around people, trying to talk to them, I just get burned out -- my head hurts and I just want to be alone and read or watch tv.
Seems talking just wears me out -- i don't know if it's the emotions i'm picking up on from people or what, but i'm drained....
to me, it's more in my head, not being physically tired, but just a headache from trying to communicate....;
which i think i'm doing badly right now.......LOL
Gosh, I can't believe I majored in English and was a publisher for a regional newspaper....i did that for so many years, and now i can't even express myself adequately ..........
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5dana8
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Perfect discription STD
There's also a current link on brain inflamation going on:
Brain fog really stinks Hope you can feel better soon Dana
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AliG
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Hi Dilly & all,
Sorry, I seem to have fallen off the face of the earth. That's how I lose friendships. I just get completely overwhelmed by trying to keep too much stuff organized in my head, then I burn out & retreat.
I've been really messed up mentally lately. I understand and experience all these awful things. I find it especially frustrating when I have to interrupt my LLMD or lose a thought. Sometimes I just let the thoughts go and hope I'll remember them. I usually do after a few weeks.
I've just gone through a bout bout of being manic, then delusional, then SEVERELY depressed. I'm realizing that this may be a pattern. I seem to get manic when I manage to avoid doing anything that reminds me that I am now a complete idiot. Then I say or do something that brings it all back again.
I've just been questioning whether these "symptoms" are related to current lyme activity or if this is permanent brain damage that I will have to find a way to deal with through the rest of my life.
I've been trying to do some research on re-mapping your brain. I want to ask my LLMD about this but I'm afraid that if I open my mouth REALLY stupid things will come out.
Sorry if I'm a bummer. That's why I've been staying off here. I don't really want to bring anyone else down with me.
I have to go try to clean now because while I was half asleep my dd tricked me into agreeing to allow her to have a play date with her friend at our house.
I really wish God would stop all this & just take me already. It just seems to slowly get worse and you know (usually after the fact) the things that are going wrong, you are somehow just completely powerless to stop them BEFORE they happen. It seems like that might be the worst thing about this. I feel like I'm watching my mind slip away & there's nothing I can do about it.
The thought that that my responses in a conversation could actually seem appropriate to someone else but it could be my deluded perception of things that makes them seem out of whack never really occured to me. I still believe others hear things as awkwardly as I think the come out. I like your thought, Dilly. That would be so wonderful if it could be true.
I'm also having a problem with rambling like a fool, as you can see. I'm going to go now before I say more stupid things.
I have missed you guys. I hope I can get it together again soon. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
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Dana-
thanks, and thanks for the links to anti-inflammation threads. i'll print them out and ask my llmd next week what he thinks works best..
dilly
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sometimesdilly
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Ali!!!!!
our posts crossed. i have been thinking about you a lot, and knowing that thigns couldn't be OK if you've been gone from here so long.
i'm so sorry to hear just how much you haven't been ok. wish i could wave my magic wand and make you feel a little bit better, or at least, a little more optimistic. sounds like the depression demons have been taking big bites out of that loving and hopeful spirit I've always seen in you.
please let me know if there is anything i can do. and please, don't stay away on our account- that's what we're here for, remember?
huge gigantic hugs to you- love, dilly
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Vermont_Lymie
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Hi Ali,
Oh dear, I am really sorry to hear that you are feeling badly. It will pass in time -- are you taking abx now? Are you using any herbal or other protocol?
Brain re-mapping sounds like a great idea. Even if we are recovering, we are stuck with old behaviors and patterns that we developed to cope when we were very sick.
The last two months have been rough for me too, and I have withdrawn a bit from social activities to cope. I hope you get lots of rest, healthy food, and healing. I have felt better this week after increasing all the buhner recommended herbs and getting more sleep.
I have read -- that the brain is plastic, and it can recover from damage (which we all have from lyme). Remember that miner in WV who survived and recovered after being without Oxygen for many hours?
That was a miracle, but there are lots of miracles when it comes to brain recovery. Take care and I hope you (and we all) feel better soon. Posts: 2557 | From home | Registered: Aug 2006
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