sue1234 Posted November 25, 2013 Report Share Posted November 25, 2013 For the last few months, I've felt bad, but all in my head. I'm not having much issue with my standup vitals(kind of my normal day to day). What I'm having is a lot of feeling bad in my head. All day, and I'm up and down, but mostly sitting, I feel weird. It is kind of like lightheaded and spacy, but nothing that I could actually tell a doctor how I feel.What it boils down to is I don't like it! I had spent the last few years feeling "normal" pretty much, unless I was hot, had low blood sugar, or stood up too long. Now I have this weird feeling from the time I get up until late evening. Then I seem to feel more like my normal.When I feel at my worst, I just make sure to eat, pee and then sit again and wait it out. One more hour, hour after hour. I think most normal people would have run to the ER with some of what I feel like.BTW, it is not "mental", but an actual weird physical feeling.Anyone else have this and know what the heck is going on? Quote Link to comment Share on other sites More sharing options...
gjensen Posted November 25, 2013 Report Share Posted November 25, 2013 What you are describing sounds like something that I am troubled by now. I do not know what to make of it either. I had some decent days last week. Yesterday was tolerable. I stayed on my feet outside for almost five hours yesterday, but into the evening my head began to have an aching sickly feeling to it. I feel awful. All of my weird symptoms are back. Noise intolerance, breathing/sleeping problems, chattering, trembling. I am starting to wonder if in those times, I am getting enough blood to my brain. Or if there is a pressure problem. I do not know what to make of it. Did I push it to far? Regardless, I feel horrible. I have a painful sickly feeling that is no fun. I get this same feeling temporarily if I pour warm or hot water over my head. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted November 25, 2013 Report Share Posted November 25, 2013 I could have written your post. I've been feeling weird in my head too. Almost dizzy - but not. Mostly I get the feeling when sitting. My cardio thinks it's my blood pressure - it's low and possibly blood is pooling when I sit. Had this on and off for a couple of weeks. Quote Link to comment Share on other sites More sharing options...
yogini Posted November 25, 2013 Report Share Posted November 25, 2013 Yes, I too have had this feeling. I had it more often than not in the years when my POTS was at its worst and still get it from time to time. I think it's not enough blood going to my head even though my BP measures normal. If your feeling is like mine, it is not a headache (though sometimes there is a headache too) but like a strange pressure and a spacy feeling. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 25, 2013 Author Report Share Posted November 25, 2013 Nice to know others have this(not nice for y'all, but for my peace of mind) Now just wish I knew what it was. No, I wish I knew what all this was so I could just be fixed. Quote Link to comment Share on other sites More sharing options...
Justin-in-MI Posted November 25, 2013 Report Share Posted November 25, 2013 Usually when I "do to much" my symptoms come back strong like GJenson was describing. I call the weird feeling brain fog. I can't think straight and my body just doesn't feel right, and I'm kinda out of it a little. Have no fear Sue you are abnormally normal like the rest of us. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted November 25, 2013 Report Share Posted November 25, 2013 Yep! Weird head feeling - sometimes brain fog, other times feel I'm sort of disconnected and "out there". Have constant ringing in my ears, feel headachy, occasional visual disturbances and spatial orientation issues, just feel kind of freaky. I would love to have a day when I could think clearly and sharply as I once used to be able to do. I guess those days are over. It is especially annoying and embarrassing when I am attempting to teach and I suddenly lose my train-of-thought - I mean, BAM, it's gone! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 26, 2013 Author Report Share Posted November 26, 2013 I have already come to terms with my body not working like it should. I have managed to handle that for years. But, the brain thing is different. If I can't think correctly or feel "motivated" to just do my limited normal things due to all this, well, I'm at a loss. I can't imagine losing my physical ability AND my mental abilities. Nobody can advocate for us like ourselves, so I feel my health issues would never be figured out if I can't use my mind anymore.I don't mean like totally losing my mental capabilities, but even half is hard for me to comprehend. Quote Link to comment Share on other sites More sharing options...
gjensen Posted November 26, 2013 Report Share Posted November 26, 2013 I know what you mean. Out of all the things that bug me, this may be the worst. I like to read with my boys, and it has been difficult lately. I do not like that. I do not like the sound sensitivity around them either. I like to hear them horse around, but it cuts to the bone sometimes. Quote Link to comment Share on other sites More sharing options...
yogini Posted November 27, 2013 Report Share Posted November 27, 2013 Hopefully it will pass, Sue. Sometimes when my POTS has acted up I've felt brain freeze and a lot of inertia, so I think I understand what you mean. Hopefully it will pass. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 27, 2013 Author Report Share Posted November 27, 2013 Thanks, Yogini. Quote Link to comment Share on other sites More sharing options...
statesof Posted December 1, 2013 Report Share Posted December 1, 2013 I'd say 90% of my symptoms are only affecting my head or as i see it my brain: cognitive functioning issues, some form of visual perception problems either with sensitivity to light or just sensitivity to my vision in general, up and down or slow shiftying feelings in my head, just overall not feeling with it, even having points where its like my inner mind goes away, sensitivity to sound or activity, even weird like flare up type feelings in my head brought on by anxiety but its like a weird longer lasting physical reaction that goes along with it. Its pretty much just been seen as POTS symptoms, but it is hard to describe some of these symptoms to drs. who have never felt anything like it before. On my worst days, which usually are triggered by one event and then stick around for a week or two, my brain is just completely messed up, i'm actually suprised it recovers each time. On a scale from 1-10, 10 being the worst, my bad days i find myself at a 9, where i would see a 10 as either me loosing consciousenss, loosing a bodily function, having sever head pain, or dying, none of which have happened yet thankfully, but it still feels like death, and throughout my bad days i feel like i need to go to the hospital often, but i know it wouldn't help; laying down alot and just eating and drinking alot seem to help somewhat, but alot of it i just have to wait it out and after 7-14 days i start feeling more normal agian. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 1, 2013 Report Share Posted December 1, 2013 I am not the only one then. I find mine rather disturbing. I am suffering it now. I could not sleep at all last night and that makes it worse. I would really love to understand this more. Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 1, 2013 Report Share Posted December 1, 2013 There are more and more studies showing a link between cytokines (inflammation producing) and brain fog as well as depression etc. Here are a couple links. and http://www.psychologytoday.com/blog/health-matters/200903/depression-inflammation-immunity-and-infection I think spec scans are also showing evidence of hypo-perfusion in a lot of ME/ CFS patients and given the overlaps in patient populations it may be relevant in our situation as well. Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 1, 2013 Report Share Posted December 1, 2013 The first link didn't take so here it is again. http://www.ncbi.nlm.nih.gov/pubmed/16501663 Quote Link to comment Share on other sites More sharing options...
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