nunntrio Posted January 24, 2011 Report Share Posted January 24, 2011 My worst symptom by far is brain fog. This fog is alway worse in the morning and somewhat improves as the day goes on if I stay off my feet. Here is the weird part. I can always tell when this fog is going to clear out because I get intense Pressure the runs up the back of my head and neck(this only happens after I have been off my feet for an extended period). It is almost like I can feel blood pressure being restored to my head. After I get this sensation which only lasts a few minutes I get a great improvement in my "fog". This happens to me daily. My husband can always tell when I have had one of these episodes because afterwards my normally very pale face actually gets some color it. I have mentioned it to several Dr.'s and none of them have ever commented on it. Is this common in POTS? Has anyone else experienced pressure in their head followed by releif of symptoms? Right now I am wondering is this just another POTS symptom or is could this be a clue the an underlying cause. Any input would be greatly appreciated. Just to give you a little background, I have been seeing a vasular surgeon for PCS and varicose vein issues. He said these issues are only minimally contributing to my POTS. He does believe most of my symptoms can be attributed to a circulatory problem but has no ideas beyond that. This brain fog is so debilitating and I really have no idea where else to turn to get help. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted January 24, 2011 Report Share Posted January 24, 2011 Sometimes I get a similar feeling but it seems like it's from the Midodrine. Do you take that? Quote Link to comment Share on other sites More sharing options...
nunntrio Posted January 24, 2011 Author Report Share Posted January 24, 2011 I have tried it but I unfortunately do not tolerate it. I wish I could take it. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 24, 2011 Report Share Posted January 24, 2011 I have had a lot of trouble with brain fog. Just recently I started low dose aspirin and it seems to be a bit better. I have also been trying to be more careful to avoid all gluten, so that might also be helping. I just thought I'd mention these as things you might be able to try. Quote Link to comment Share on other sites More sharing options...
lieze Posted January 24, 2011 Report Share Posted January 24, 2011 I've felt the intense pressure before that then kind of busts lose and everything clears up from that point on.I really thought it was my sinuses?Sometimes a Motrin or tylenol will help clear some of this up for me also or the Xanax helped with that.I guess I wish Xanax didn't have issues associated with it because it seems to be kind of a one pill fix all type of thing for me.It's great for vertigo migraines. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 25, 2011 Report Share Posted January 25, 2011 Brain fog is my worst symptom too... along with feeling off balance and like I can't see straight. Do you find that laying down helps the brain fog? I do and so conclude that brain blood flow is a part of the problem. I do get that pressure sensation in the back of the head and neck and when I have it, I am feeling really bad in my head, much worse. I have never experienced that sudden sensation of a pressure release/clearing. It does sound like a clue. I took part in some research that looked at blood flow to the brain in POTS patients while laying and standing. I don't know what MY results were because when I asked for them they told me I didn't do this test -- uh, yes I did... they obviously lost my results? So annoying, as this information was critical to me. Anyway, the results of this research did show reduced brain blood flow in POTS patients. I wonder if this test is available outside of a research setting ...available to patients? Quote Link to comment Share on other sites More sharing options...
nunntrio Posted January 25, 2011 Author Report Share Posted January 25, 2011 Brain fog is my worst symptom too... along with feeling off balance and like I can't see straight. Do you find that laying down helps the brain fog? Thanks for the the reply. Yes my brain fog gets significantly better after I lay down for a while. I also believe my problems almost all stem from a blood flow to the head problems. There is a Dr. in Dallas that does a trans cranial doppler during a TTT. I would really like to do it to get some validation to what I suspect to be my root problem, I am considering going up to see him. That is really to bad they lost you results. Have you found anything that helps? Quote Link to comment Share on other sites More sharing options...
nunntrio Posted January 25, 2011 Author Report Share Posted January 25, 2011 I have had a lot of trouble with brain fog. Just recently I started low dose aspirin and it seems to be a bit better. I have also been trying to be more careful to avoid all gluten, so that might also be helping. I just thought I'd mention these as things you might be able to try.Thanks for the reply. I have tried gluten free with really no change. I have not tried asprin I might give that a shot. Thanks Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 26, 2011 Report Share Posted January 26, 2011 "There is a Dr. in Dallas that does a trans cranial doppler during a TTT. "Are you near Dallas? Can you get the test done? This is the test I would like. I'll have to research and see if it's available somewhere in my area. I really have found nothing that helps besides laying down and my morning dose of coffee. If only there were a way to push the blood UP. Quote Link to comment Share on other sites More sharing options...
nunntrio Posted January 27, 2011 Author Report Share Posted January 27, 2011 "There is a Dr. in Dallas that does a trans cranial doppler during a TTT. "Are you near Dallas? Can you get the test done? This is the test I would like. I'll have to research and see if it's available somewhere in my area. I really have found nothing that helps besides laying down and my morning dose of coffee. If only there were a way to push the blood UP.I am about 3 1/2 hours from Dr. Suleman in Dallas. Someone on this board told be that they had a TTT with doppler done by him. I am not sure if he would do it for me, I have spoken to him and he is willing to take me on as a patient. I have not made the decision to go up there yet (long story) but I am still considering the option. Are you anywhere near Dallas? I believe Vanderbilt has done this test as well. Even if the test shows what I suspect is hpyoperfusion I am not sure there is much more they could do for me. It would give me some piece of mind having a test that actually show what is happening. For me laying down by far helps the most. I hate that my kids see me lying down so much. I have gotten some relief with compression hose but they are by no means a cure all. I sometimes wonder if I will get some sort of damage to my brain because it is not getting enough blood so often. I guess only time will tell. Quote Link to comment Share on other sites More sharing options...
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