Yolaclover Posted May 22, 2011 Report Share Posted May 22, 2011 Is that normal for POTS? Could it be something else? Do I ask this question too much? lol! I have such bad brain fog don't even know what I'm repeating Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted May 22, 2011 Report Share Posted May 22, 2011 Oh yes. Sometimes I feel lije im in a dream. Just the wonderful world of pots! Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 22, 2011 Author Report Share Posted May 22, 2011 lol!!!! Quote Link to comment Share on other sites More sharing options...
rach73 Posted May 22, 2011 Report Share Posted May 22, 2011 Hi,Just thinking could you have an inner ear infection on top of the POTS. Are you feeling dizzy or is the room actually spinning?Try some travel sickness tablets if you can tolerate them and see if that helps.Rach Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 22, 2011 Author Report Share Posted May 22, 2011 just lightheaded, not dizzy at all, no spinning Quote Link to comment Share on other sites More sharing options...
rach73 Posted May 22, 2011 Report Share Posted May 22, 2011 sorry hun wish I could make it stop! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted May 22, 2011 Report Share Posted May 22, 2011 Oh forgot to add allergies make it ten times worse! Quote Link to comment Share on other sites More sharing options...
misstraci Posted May 22, 2011 Report Share Posted May 22, 2011 718momI feel just like you do!!! i'm lightheaded sitting, laying, standing, it doesn't matter. It drives me crazy and I get scared because I wonder if POTS is all it is or if there is something else, hmmm, I wish I knew the answers and I wish people in my everyday life/world understood how I feel; how awful it feels to feel this lightheaded feeling. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 23, 2011 Report Share Posted May 23, 2011 Actually I do find that odd. So you feel less lightheaded while standing? I am usually (markedly better) lying down. I assumed it's because of the theory that not enough blood is making it the brain while upright, but laying down allows the blood to go the head. Can't prove it though! I'm sure your lightheadedness is probably POTS related, just not sure how to explain the positional thing? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 23, 2011 Author Report Share Posted May 23, 2011 Yes, it is not normal how I am worse when I am sitting or lying down, everyone else is fine when they sit or lie down, it makes me very scared something else is going on and terrified to go to sleep at night. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 23, 2011 Report Share Posted May 23, 2011 Is this recent? You started Florinef again, right -- maybe it has something to do with adjusting to the medication again? I'd google "dizziness laying down" and see if you come up with anything. Maybe you should see an ENT and see if it's an inner ear thing? Or go back to whatever Dr. is prescribing the Florinef and see if they know anything? Maybe it just has something to do with POTS -- BP often goes lower laying down. Misstraci (post above) said she has it laying down also and maybe you two aren't the only ones. Try not to be scared. Sorry - hope not to confuse you more - just thinking. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted May 23, 2011 Report Share Posted May 23, 2011 Sometimes when I lie down for a long time I feel lightheaded as well. I've chalked it up to my own anxiety about lying there and not doing anything. I still tend to blame myself for my illness at times. I sometimes think that if I only tried to do more I'd be better. I know that is irrational and I am working on changing that belief. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 23, 2011 Author Report Share Posted May 23, 2011 Naomi, yes! I did start florinef again about two weeks ago, this issue, of supine lower BP has been my main problem since my POTS started. I wake up, go to the bathroom, lie down and a few minutes later feel like I have no blood in my head. The same thing happens when I sit for a long time. I hate it!!! I get so scared I'm going to die in my sleep. I just read about so many potsy people who need to sit/lay down and for me it always seems like I feel better walking around, the more I move, the better I feel and this makes me SO scared that I'm walking around, misdiagnosed, about to drop dead! When I go to bed, I'm exhausted. I'm so tired!!! Working full time, two toddlers, today I walked into work at 8am and just cried to my colleague. I'm terrified. I work so much and have so much to do I barely have time to see Drs. The worse I feel, the more I step back from my life, don't return calls, avoid social situations, because I'm scared people will think I'm crazy I used to be such a happy, social person, it kills me. Quote Link to comment Share on other sites More sharing options...
RhinoGut Posted May 23, 2011 Report Share Posted May 23, 2011 I am constantly lightheaded as well. And it seems worse when I am sitting or laying down. Then, if I watch TV or focus on something for too long, I get even more lightheaded and then the "visual disturbances" kick in and the brain fog. It's like I am looking through plastic wrap. The worst part for me is when I lay down to go to bed. As soon as my head hits the pillow I get the spins and I feel like I am going to pass out. My cardio now is not sure it is POTS related or if it's the new found "mass" around my pituitary glad! Guess I gotta wait for the endo appt in September! The odd thing is that the more I walk, the less symptoms I have. I started out by walking around the block (that was ****) and now I am up to 4 miles per day with a couple breaks in between (and throw in a couple flights of stairs for fun. lol) I also noticed that when I took the florinef and the midodrine I got even more lightheaded. So I have stopped all medications and I am feeling so much better, but the pots flares can still knock me back a fews days.-Ryan Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 23, 2011 Author Report Share Posted May 23, 2011 Ryan! You sound just like me! I had an MRI of the brain, would that show a mass around my pituitary gland? I saw an endo, she put me on a diet, lol. Quote Link to comment Share on other sites More sharing options...
lavieboheme014 Posted May 23, 2011 Report Share Posted May 23, 2011 I get lightheaded while lying down also!!!That was actually my first symptom that sent me to the er that started me down the long road to finally getting diagnosed with pots.Everyone kept telling me it was an inner ear infection or something along those lines. I don't know how many times I had to tell them it's *lightheadedness* not vertigo!It used to be so bad, I was scared to go to sleep too because I literally felt like I was going to die. Then I would finally fall asleep, only to be woken up with severe lightheadedness. So strange. Docs don't understand since most potsies are lightheaded when upright and feel better lying down.All I can say is once increasing my salt and fluid intake and starting Florinef it has improved drastically. I'm still lightheaded when I wake up in the morning, but definitely not as bad as before (most days, anyway).I just wanted to tell you I know exactly how you feel, the whole being scared to go to sleep thing. Don't be afraid though! Trust the doctors that you were properly diagnosed and this is NOT life threatening. If you were going to die, you would have the first time you got lightheaded while lying down. Trust your body, it's extremely capable of keeping you alive, even if you are sleeping and unconcious. Know that when you sleep, your body has nothing else to do except heal itself.You will be ok!!! Believe me, I know. I think I went 2 whole months terrified to go to sleep every night and I live by myself so that made it 10 times worse!I hope you start to feel better very soon! Christina Quote Link to comment Share on other sites More sharing options...
RhinoGut Posted May 24, 2011 Report Share Posted May 24, 2011 Yes, It showed something on the MRI However, it is unclear if it is a "mass" or something else but they are leaning toward a mass. My cardio thinks that it may be pushing on my optic nerve causing the visual changes and POSSIBLY the lightheadedness. I just love all the uncertainties! I had my results sent to 3 endo's here is town since all of them only have openings in late july through september! So we will see what happens!Christina,You are so right. I was terrified to sleep for months! It made me more anxious and made it harder to sleep. Once I accepted that I wasn't going to die in my sleep, I started sleeping like a baby and my anxiety got better. I actually look forward to sleeping now. Getting restful sleep changes everything! I certainly don't miss waking up in a panic and drenched from head to toe in sweat! Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 24, 2011 Author Report Share Posted May 24, 2011 Thank you so much Christina, I guess I just haven't fully accepted my situation yet! It is so hard to get used to this because dysautonomia changes all of the time, one day you feel okay, one minute like you're about to die, you know? I already had bad anxiety before I got this so it just wasn't really something I was emotionally prepared for, I guess no one really is Seriously, thank you. I'm so thankful for the kind and intelligent people here. I am very fearful and sometimes that fear does get the best of me!718 Quote Link to comment Share on other sites More sharing options...
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