KaciCrochets Posted September 12, 2019 Report Share Posted September 12, 2019 Who else gets emotional and mental symptoms with a POTS flare? I get anxiety and a kind of desperate feeling like I'm trapped and there's no way out. When I'm dumping norepinephrine at night I get these weird, warped thoughts floating through my head that make me feel sick, like my brain is on a carnival ride that both spins around until you puke and has you looking into a funhouse mirror where everything is wavy and a little unfocused. These mental and emotional symptoms are, for me, the absolute worst and I can't stand them, they are unbearable. If I don't have them, everything else I go through is tolerable. Am I the only one who gets these symptoms? Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 12, 2019 Report Share Posted September 12, 2019 Im not sure in my case if its related to a pots flare (still undiagnosed) but I've been definitely more anxious and depressive when my symptoms get worse. I start feeling hopeless, that in going to die and there's nothing left for me yada yada yada. It doesn't help that I'm tired all the time and have trouble falling asleep. But honestly, the mental side effects are nothing (for me at least). Give me that instead of these stupid *** symptoms that make doctors look at me like im a freak. Quote Link to comment Share on other sites More sharing options...
Random-Symptom Man Posted September 12, 2019 Report Share Posted September 12, 2019 I get depressed when I have a flareup. There's the obvious issue of primary symptoms: fatigued, achy, nauseous, cold-or-hot, and more. These symptoms are enough to give anyone depression. Add on the seconday symptoms of lack of excexersise, human interaction, boredom, and ADHD and its even worse. Who knows what other imbalances occur when our ANS goes out of whack? It's probably different for each of us. It's probably different from time to time. I often throw weird levels on different blood tests at different times (which confounds the doctors). So it's hard to tell if the depression and weird thoughts are a result of hormones, a depressing set of circumstances, or a combination. But there are people here with you. Thank you for sharing. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 12, 2019 Author Report Share Posted September 12, 2019 Thank you for your replies. My weird head space is definitely a symptom and not a reaction to my symptoms, and it went away when I took the hydroxyzine. Maybe it has something to do with inflammation and intracranial pressure? Yesterday I salt loaded too much and got a major headache and felt so emotionally stressed I had to cry. Once I drank enough water to ease the headache the emotional symptoms went away, too. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 12, 2019 Report Share Posted September 12, 2019 2 hours ago, KaciCrochets said: Thank you for your replies. My weird head space is definitely a symptom and not a reaction to my symptoms, and it went away when I took the hydroxyzine. Maybe it has something to do with inflammation and intracranial pressure? Yesterday I salt loaded too much and got a major headache and felt so emotionally stressed I had to cry. Once I drank enough water to ease the headache the emotional symptoms went away, too. The more I read on the internet about the human body, the more i realize how little i know about everything. We're so complex and all have our own particularities despite being the same species. Its crazy. But I'm sidetracking here... I hope you get relief in some way in the coming days Quote Link to comment Share on other sites More sharing options...
p8d Posted September 13, 2019 Report Share Posted September 13, 2019 Are you hyper POTS? Before I started an alpha blocker I would get this overwhelming feeling of dread in the afternoon. It was awful. Getting physically stronger through PT and sleeping along with the alpha blocker help. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 14, 2019 Author Report Share Posted September 14, 2019 9 hours ago, p8d said: Are you hyper POTS? Before I started an alpha blocker I would get this overwhelming feeling of dread in the afternoon. It was awful. Getting physically stronger through PT and sleeping along with the alpha blocker help. Yep, hyper POTS. I haven't tried an alpha blocker yet, that will be my first thing I ask about whenever I manage to find a decent doctor. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted September 14, 2019 Report Share Posted September 14, 2019 Yep me too hate confrontation and stressful situations . Sweat, shake, can’t sleep, heart rate soars in seconds and I usually run away ! Sitting for too long can have exact same effect on me . Made the choice this year to remove all people who stress me out of my life, drastic I know but what a difference it has made . meditating daily has helped as I overthink things way too much . I also over react so learnt to control my emotions better . Welcome by the way ! Quote Link to comment Share on other sites More sharing options...
p8d Posted September 14, 2019 Report Share Posted September 14, 2019 @KaciCrochetsI know we have/had the same Dr. can you call/message her asking for a script? I prefer methyldopa or guanfacine ER to clonidine. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 15, 2019 Author Report Share Posted September 15, 2019 11 hours ago, p8d said: @KaciCrochetsI know we have/had the same Dr. can you call/message her asking for a script? I prefer methyldopa or guanfacine ER to clonidine. I haven't seen her in two years so I doubt I could get a script from her. I have made some dietary changes that have been helping so far. If UW neurology ever flipping calls me I am hoping to get a scan done to make sure I don't have MS or a tumor causing my issues before I venture into medication. Quote Link to comment Share on other sites More sharing options...
yogini Posted September 15, 2019 Report Share Posted September 15, 2019 On 9/12/2019 at 8:56 AM, KaciCrochets said: Who else gets emotional and mental symptoms with a POTS flare? I get anxiety and a kind of desperate feeling like I'm trapped and there's no way out. When I'm dumping norepinephrine at night I get these weird, warped thoughts floating through my head that make me feel sick, like my brain is on a carnival ride that both spins around until you puke and has you looking into a funhouse mirror where everything is wavy and a little unfocused. These mental and emotional symptoms are, for me, the absolute worst and I can't stand them, they are unbearable. If I don't have them, everything else I go through is tolerable. Am I the only one who gets these symptoms? When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic. I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 15, 2019 Author Report Share Posted September 15, 2019 50 minutes ago, yogini said: When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic. I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal. Except this mostly happens when I'm lying down. Unless my heart rate slows enough to not pump blood efficiently when I'm relaxed. But I'd think that would be more of a consistent thing. ??? Quote Link to comment Share on other sites More sharing options...
yogini Posted September 25, 2019 Report Share Posted September 25, 2019 On 9/15/2019 at 11:17 AM, KaciCrochets said: Except this mostly happens when I'm lying down. Unless my heart rate slows enough to not pump blood efficiently when I'm relaxed. But I'd think that would be more of a consistent thing. ??? It's complicated. Your doctor could best explain the mechanism but usually dysautomia symptoms tend to act up when the brain isn't getting enough blood, which and happen in any position. Both the HR and BP drop during sleep, combine this with dysautonomia, not a great mix. Some patients even faint in their sleep. Quote Link to comment Share on other sites More sharing options...
lieze Posted September 26, 2019 Report Share Posted September 26, 2019 Yes I’m getting the same as what you describe and it is h***. Sometimes I get the urge to scream right out loud. I always get the feeling that if I don’t do something it’s gonna kill me. The thoughts are absolutely horrible. I am so sorry you also experience this. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 27, 2019 Author Report Share Posted September 27, 2019 @lieze I'm sorry you get this too, but it makes me feel better to know I'm not the only one. I've had a good week and spent a lot of time doing CBT and trying to work through my deepest fears (pretty much all health and doctor related, I wonder why? 🙄) so when I get a bad flare I won't be so triggered. Last night was the first bad night in a week and I'm really jittery this morning. I practiced my CBT during the surges last night. It kept me from spiraling but sure doesn't make the anxiety feel any more comfortable. It's still there even without anything to be anxious about. I spent 25 years of my life being depressed and I think I prefer that to this. At least with depression I could sleep. Quote Link to comment Share on other sites More sharing options...
lieze Posted September 27, 2019 Report Share Posted September 27, 2019 I decided to sit in front of the tv last night. I did experience symptoms. Hot flash feeling dizzy etc but I tried hard to just focus on whatever I flipped too. It seemed to keep my thoughts from spiraling out of control. Quote Link to comment Share on other sites More sharing options...
outofadream Posted October 26, 2019 Report Share Posted October 26, 2019 Thank you guys for sharing this. I've always found some of the mental/emotional symptoms to be some of the hardest too. With the adrenaline surges in particular, I often get that intense sense of anxiety, ranging from this unease I can't shake to complete impending doom. I can relate to that feeling like you're trapped too. I know how unbearable it can be to keep getting those surges over and over, like living on a roller coaster. Beta blockers really helped level those some for me, but still get them a fair amount. I hope you guys are getting any kind of relief, and sending support your way. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted October 26, 2019 Author Report Share Posted October 26, 2019 Thank you for sharing, @outofadream. It makes me feel less alone to know others go through this, too. I still haven't managed to get any medical help but I figured out if I take ibuprofen during the day to keep my pain under control, and chug some Gatorade before I get ready for bed, I don't have shocks and surges that keep me up at night (and therefore don't have anxiety and panic). I am sure some of my issues recently are due to midlife hormonal changes, but if I can keep my nervous system calm while I go through it I hope to keep these emotional episodes to a minimum. Quote Link to comment Share on other sites More sharing options...
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