How do you experience your brain fog?

I ask this because I feel utterly, utterly spaced out as tho' I am not in my own body almost. I sometimes cannot tell if I feel hot or cold - basically my awareness of my own body is totally off. My sense of touch, knowing if its hot or cold - most of my senses are off. The only sense that still works fully is hearing - and this is affected by loud noise which sends me in a tail spin. My eye sight is horrifically altered, especially outside.

But the worse thing is feeling utterly spaced.

I am not talking here about forgetting things, and lack of mental agility. It is more of a physical sensation that seems to come from within my brain. I am utterly terrified by it.

There are times I try to shut my eyes to rest and because my head feels so 'empty' as tho' I am missing loads of brain chemicals. then I cannot shut my eyes and relax. I have to open my eyes because it feels so awful, almost a sense of 'pain in my brain....!!!

I also get a sensation in 'attacks,' that send ripples of tightness, a clamping up feeling, shimmering across my head - god that is hard to describe!

Yes, I am still very underdosed for thyroid, and I am using serine for high cortisol, but I just want feedback from others to know if anyone has a similar experience. I have found it hard to describe this sensation so I hope I have been able to convey it well enough.

I have hashimoto's BTW and adrenal issues.

Thanks

Carolyn

25 Replies

oldestnewest
  • Hi Carolyn,

    You describe your symptoms very well to me and i can relate to most of what you describe.

    For a long long time i had what people describe as brain fog. And like you i felt out of it, almost in my own world, unaware of my surroundings and had to really force myself to engage with things and people, it didnt seem to come naturally. I sometimes used to say that i was going into a state of unconcious although i never did, but thats what it felt like. Loud noises could startle me and send a shock through my body. When i was outside i felt like a zomby. I have an underactive thyroid and had to change brands because certain fillers were causing lots of horrible symptoms. The brain fog is not as bad now but loud noises still affect me.

    Brain fog means different things to different people but your story is apt with mine and one of the worse symptoms.

    I hope you find some answers and maybe others on here can let you know what helped them.

    The only thing that changed for me was my meds brand and it helped lots.

    Christine

  • You mention hearing being the only thing that seems to work, but for me (I suffer from "moderate hearing loss"), my hearing and comprehension stops working almost completely sometimes. People say things to me and it just sounds like garbage to me. I sometimes tell my husband to repeat, and I say "Tell me the first word again", then "second word", then "third word" and so on. Then I put the individual words together into a sentence. And sometimes it still doesn't make sense.

    But the main feeling I have is that I think about something, can't string my thoughts together sensibly, and it is as if a part of my brain is physically missing. I feel that there is a "hole". And the bit that is missing is the bit that used to be able to think about whatever I want to think about but now it just isn't there any more.

  • Oh, Humanbean, I can totally relate to all of that! Especially the bit about people saying things that sound like total garbage. And as I live in France, it's even worse because people think it means I don't speak French, when I do!!! Normally, I speak it very well.

    But it's not just listening that I have that sensation. Sometimes when I'm reading, a sentence will just stop me in my tracks. It just doesn't seem to mean anything. I know all of the words but when they're put to gether, they are just meaningless. I have to read it again and again. Still nothing gets through. I leave it for a while, days even, and when I go back to it, it makes perfect sense, and I can't understand why I didn't understand it before. And I just sit there and say 'Oh!'. lol Crazy!

    Sometimes I get a sensation that the French describe very well. They say : my eyes aren't in front of my eye holes! lol They are talking about when they are waking up, but I can feel like that at any time of the day!

    Hugs, Grey

  • I felt like that. I would waken in the morning, as exhausted as I had gone to bed. At one point it was taking me up to an hour to get dressed. I could not remember things. I would be driving and forget where

  • Sorry, I keep pressing the submit key when I have not finished posting. I shall continue. Forgetting where I was going whilst driving was the scariest. I had no recollection of where I was and a panic would come over me. I put food in the aga, baked potatoes had been in there for days, they were the size of stones when I found them. If I spoke to people, I would repeat what I had just said to them a few sentences ago, and a bewildered look would come over peoples faces. I could not remember things, I would be talking and I kept saying and er and er because I forgot my trail of thought. I would also get things mixed up and sentences came out mixed up. I thought I had dementia.

    Luckily for me I had a fab endo. I broke down crying to her and told her I cant go on like this. I had wasted years of my life. She increased my thyroxine dose I always had been on a very low dose and I always felt undertreated, there was a slight change for a few weeks when this was done but they symptoms came back. My saving grace was T3. I started that in April and I have never looked back. I have now made a full recovery. I feel normal again.

    I really feel for you. Its a really scary time. Can you not get a referral to an Endo? Or do you have a good GP that would trial you on T3? The cost of T3 is causing alarm to most Gps so they don't want to prescribe it. It sounds to me if you could get T3 this could be your solution. It does not work for everyone, but it may be your solution. Or the other solution could be to have your thyroxine dose increased. Good luck.

  • What meds do you take now? Just t3?

  • I forget what I'm talking about in mid-sentence. I open my mouth and nothing comes out. And I've absolutely no memory of what I've said before. And I was a teacher, and this would happen in front of my class. It still happens, even though I'm on a decent dose of T3.

    I react badly to loud noises. They hurt my ears. I hate having the TV up too loud, or loud music. Yet if it's too low - well, normal for most people - I can't make the words out. Loud noises set my head spinning, like vertigo but up and down instead of side to side. What the ENT I saw called 'false vertigo'. I don't care if it's false or true! I just want it to stop!!! He just told me my ears were worn out because I was old! I was 56.

    Sometimes when I blink, it sets off ripples through my brain. I associate that with having a fever, but I don't know if other people experience fever like that.

    I don't know what the answer is, I've never found one. These sensations aren't continuous, they just happen from time to time. But they still happen, even though I'm on 125 T3 and am working on getting my B12, magnesium and zinc levels up. I don't want to sound defeatist, or to depress you, but I think they're with me for life...

    Hugs, Grey

  • I can identify with a lot of this, esp the oversensitivity to noise, and in my case a feeling of overstimulation in general which contributes a lot to my longstanding problem with agoraphobia. I do a lot of word searching and a lot of word substitution. I want to say I put something in the oven but instead I say I put it in the garden, and I can hear myself saying it and can immediately correct myself (though sometimes I still struggle to find the right word even when I'm correcting my own mistake). I also have that feverish feeling in my brain.

    I'm supplementing d, b12 (diy injections), iron, magnesium oil and others. Have tried t3 only but added in t4 after my t3 levels dropped.

  • Oh, yes! I get aphasia too! Sometimes I say some really rediculous things, and other times I can't get a word out.

    And I have mild agraphobia, but also mild clostrophobia. lol The space has to be just right for me too feel at home. I'm very at home in all the rooms in my house (no pun intended) except the lounge, which is over 100 square metres. It's just too big and I hate being alone in there. However, it's wonderful when my large family are all there with me. Just no pleasing some people, is there! lol

  • I can identify with having specific requirements. For me there is a very complex algorithm involved in going out vs staying in. :-) If someone is home I can go out more easily, and I can leave anyone else's house (when staying at my mum's for example) more easily. I will have to think about whether or not a room can be too big, but this isn't often an issue here in London, lol.

  • No, I don't suppose it is! lol But I do know what you mean about it being easier to leave a place if someone else is staying. I put that down to the fact that I get half-way down the road and then become convinced that I've left the gas on, or not locked the door properly, etc. Very, very often I have to go back and check! But if someone else is still in the house, it doesn't matter if the door is locked or the gas is on, because they will notice and rectify the situation. Yup, I relate to that alright!

  • I sometimes get stuck at the door (going in and out until I can finally make the break and GO) but it is almost always to do with insignificant things or sometimes because I forget obvious things like my Oyster card or credit cards. I think the anxiety makes it hard to focus on things in a methodical way and prepare effectively. But for me it isn't about someone looking after things I may have forgotten (though of course if I do forget to check the dogs' water bowls it does help to have someone at home). :-)

    The personal permutations of agoraphobia must be limitless. :-)

  • Or, I just don't want to go out, thank you! I'm very happy at home! lol

  • Funny you should say that, Grey. I get a deep pulsating noise in my ears that's worse after I get out of my car from driving and go indoors! That probably sounds weird but it happens pretty much every single time. Sometimes my ears react badly to noise, other times I have to turn the volume all the way up and I'm still not happy with the volume sounding low (that's how it is to me!)

    I don't get the blinking problems as such but when I look at a window first thing after waking up my eyeballs throb or give the impression that they throb. I don't say anything to my folks in case they think I'm weird.

  • Oh, I know! Have to admit it all sounds weird! And nobody could understand unless they experience it. So, therefore, nobody talks about it, so we don't know how many people experience it! Thank you, Giagal, for starting this thread! I don't feel so weird anymore!

  • So its not uncommon to have all these awful symptoms then. ?

    Anyone else having something similar to me!!! I am very scared of this - and my partner just does not understand.

    Thanks Carolyn

  • Get your partner to read this thread. I'm sure that the problem for all of us with brain fog is an inability to describe the feelings and sensations.

    I find it really hard to explain my own brain fog, so I'm assuming others have just as much difficulty.

  • I'm meant to be learning new skills and it just will not go in. I start telling myself and everyone round me that I am stupid, except I'm really not.

    My comprehension of words goes from being what I would call sharp as a tack to 4 year old just starting to learn to talk/read/write. I can see words one minute and then in the next I can barely form three letter words. (Made obvious when hubby and I watch 8 out of 10 cats does countdown... I know sad right?!!)

    I am really bad with sound too, sometimes I cannot tolerate loudness and sometimes I struggle with not being able to hear enough, it seems to be connected to my temperature too. So, when I feel hot I cannot tolerate loud noises. Cold and I need the TV up higher. Maybe that is a Hashimoto's thing, I don't know.

    The weirdest thing and I've not told anyone about this, is that I stumble on how to pronounce words.... in my head! You know you're thinking about saying something to the person in front of you and your tongue won't say the word and you get tongue-tied. Well I think tongue-tied. I didn't think it was connected until I read this post and it seems highly possible to me now!

    And yes, Carolyn. I feel like you do. Strange sensations of air-headedness... like there's a mess of cobwebs up there and nothing else. Out of body sensations which are very odd and all of them bother me. I get where you are coming from and my hubby is the same, sometimes he misses a beat when I am really bad, but he doesn't do it on purpose. He just hasn't experienced it and it's hard for someone to really understand when they haven't experienced it.

  • I also feel like this I have terrible brain fog, I sometimes can't even remember the start of conversations by the time the conversation ends.I have just started a new job and I am struggling can't seem to take anything in. I am 55 so have put it down to my age but reading this I feel there is more to it. I am constantly tired have finally got appointment with endo in November so hopefully things will get better

  • I once read a wonderful description of what it's like to not understand what people are saying to you. It was on another forum many years ago and I can't remember the name of the person that posted it (of course!) so I hope it's ok to repeat it here.

    She said that sometimes when people speak to her, the words shimmer and dance in front of her eyes, but she has no idea what they mean.

    But I know what she means, and I'm sure you all do, too...

  • I explain it to people (of a certain age) like being in that bubble in the programme The Prisoner. I am in a thick plastic bubble and can see what is going on "outside" but it makes no sense. Sometimes the bubble is fairly thin, and I can understand what is going on and react, but quite often the bubble is so thick, nothing gets through!

    The only time my brain makes sense is when I am dreaming.

  • Good explanation serenfach.

    Does anyone also feel spaced out or have any physical sensation in the head with this issue?

  • Hi Giagal, It maybe due to the the Serine your taking;

    stopthethyroidmadness.com/ps/

    Phosphatidyl serine (PS)

    "But the complex can give you a strange spacey feeling in the mornings"

  • But I don't think the rest of us are taking Serine. I'm certainly not. Just T3 and some vits and mins. But I've had this for years and years. When I was a child, taking nothing, I had the weirdest brain symptoms that I couldn't possibly put into words. And I had trouble looking at people because they would get smaller, then they would get larger, then they would get fuzzy and I couldn't bear to look at them anymore. Don't get that anymore (thank goodness!) but get plenty of other weird things.

  • Could really relate to many of these descriptions. I read something then realise nothing has gone in, honestly could not tell u what i have read. Have to try again and again. Cannot take it in no matter how i try and concentrate. Wish there was a better way of describing it, a proper medical term as no one takes it seriously

You may also like...