Veta Posted September 13, 2019 Report Share Posted September 13, 2019 Hi guys, I was only diagnosed with this today but have been having symptoms for about a year. Along with pre syncope, vertigo, shortness of breath, brain fog, headaches, irregular heart beats, chest pain, low blood pressure etc I noticed something else that only started recently. When I’m in a mildly stressful situation (ie confrontation with a friend) My heart starts going crazy and I get an overwhelming need to run or immediately leave the situation, then I start shaking and usually crying. Before I was diagnosed I thought it was anxiety attacks however I never used to get them and they come very early on, like situations I used to be able to handle quite well. Can anyone else relate or have any idea why this is happening? Quote Link to comment Share on other sites More sharing options...
Magalot Posted September 13, 2019 Report Share Posted September 13, 2019 I have always been a very anxious, but happy person but since I've developed POTS I definitely have a lot more anxiety, I think it's related to extra adrenaline in my case. And also the very nature of POTS symptoms can make you feel very anxious. I've got a lot of the physical symptoms under control through lifestyle changes but am still suffering with the increased anxiety so I've begun psychotherapy recently to see if it can help me get a handle on the anxiety aspect. I also take a low dose SSRI. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 13, 2019 Report Share Posted September 13, 2019 3 hours ago, Veta said: Hi guys, I was only diagnosed with this today but have been having symptoms for about a year. Along with pre syncope, vertigo, shortness of breath, brain fog, headaches, irregular heart beats, chest pain, low blood pressure etc I noticed something else that only started recently. When I’m in a mildly stressful situation (ie confrontation with a friend) My heart starts going crazy and I get an overwhelming need to run or immediately leave the situation, then I start shaking and usually crying. Before I was diagnosed I thought it was anxiety attacks however I never used to get them and they come very early on, like situations I used to be able to handle quite well. Can anyone else relate or have any idea why this is happening? Undiagnosed but i can relate as well. For me, at least right now, passing a car and accelerating generate too much adrenaline and i feel short of breath for a few secs. I cannot play video games anymore unless they're tame and nothing exciting happens. Definitely sucks. I hope all of this goes away once im better abd medicated Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 13, 2019 Report Share Posted September 13, 2019 1 hour ago, DizzyPopcorn said: I cannot play video games anymore unless they're tame and nothing exciting happens. LOL I thought I was the only one! I have never been a big fan of video games anyway but my husband and kids are, and I have a hard time even watching them play now. I get so stressed out. Ones like Beat Saber make me feel like passing out, I can't process fast enough anymore to even watch it. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 13, 2019 Report Share Posted September 13, 2019 8 minutes ago, KaciCrochets said: LOL I thought I was the only one! I have never been a big fan of video games anyway but my husband and kids are, and I have a hard time even watching them play now. I get so stressed out. Ones like Beat Saber make me feel like passing out, I can't process fast enough anymore to even watch it. I kid you not, not a long time ago i bought a vr headset for my computer. I played maybe twice and now i cant use it... Im a big gaming nerd. Im (well... Was for now) a software developer and played tons of games on pc, modding them etc. Not being able to play sadden me so much. At least i can watch them on twitch.tv. I hope that you are still able to do activities with your family. There's nothing worse than being isolated with an invisible illness Quote Link to comment Share on other sites More sharing options...
p8d Posted September 13, 2019 Report Share Posted September 13, 2019 I was really bad with this for years and still have trouble even with phone calls. I am home bound, pretty isolated but treating AI disease, meds alpha and beta blockers and PT have helped a lot. Panning and zooming in TV shows doesn’t bother me as much and I can do a phone call on occasion if it’s a good day. I believe the medical term is overstimulation and most research relates to autism. I had one neuro tell me it was from pain free migraines but I couldn’t tolerate the prophylactic drugs recommended. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 13, 2019 Report Share Posted September 13, 2019 5 hours ago, DizzyPopcorn said: I kid you not, not a long time ago i bought a vr headset for my computer. I played maybe twice and now i cant use it... Im a big gaming nerd. Im (well... Was for now) a software developer and played tons of games on pc, modding them etc. Not being able to play sadden me so much. At least i can watch them on twitch.tv. I hope that you are still able to do activities with your family. There's nothing worse than being isolated with an invisible illness Ugh, my kids use a VR thing, I want to puke just thinking about having that on my head. My husband is a big gamer and my son is going to college for programming and is taking a game development class, so I am familiar with all that stuff. I'm sorry you've had to give up something you love, that really sucks. I am facing that happening to me too, probably sooner rather than later. I'm a musician and my fingers and ability to focus are slipping. On occasion I'll be in the middle of playing and I will suddenly have no clue what I'm looking at, I blank on what the note is or how to play it, it's scary. I'm enjoying what I've got while I still have it. I hope you're not isolated, either. Getting out of the house is important for a person's sanity. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 14, 2019 Report Share Posted September 14, 2019 @p8d l am with you. I can watch a movie or show but have to mute during commercials or longer and just sit in the quiet or I will freak out from the stimulation. I have - admittedly - snapped at my poor family during movies when I could not retreat. So now I use the pause button a lot and lie down in my bedroom a few times during a movie and this helps keep me sane and the peace around the house 🤫 Quote Link to comment Share on other sites More sharing options...
Scout Posted September 19, 2019 Report Share Posted September 19, 2019 I really relate. I'm very jumpy. Sometimes, if there's a loud noise, my heart will quite literally skip or thump the second I hear that loud noise. It just feels like my body is constantly on hyper-alert, which sounds somewhat similar to what you're going through. I also get really affected by sensory overload, and I've noticed that increasingly, too. If there's a car alarm going off on the street, or something similar, I'll have to put my hands over my ears and sometimes find myself curling up into a ball when there's too much going on. As mentioned above, I suspect it's just our bodies and brains not being able to cope with all the stressors and sensory input. It's a lot, on top of what we are already going through. So we feel the need to run, or hide, or curl up, as a coping mechanism. Really hope you're OK. Sending well wishes your way. Quote Link to comment Share on other sites More sharing options...
Stark Posted September 19, 2019 Report Share Posted September 19, 2019 My startle reflex is terrible. I think I'm going to start meditating to see if I can get it more under control Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted September 19, 2019 Report Share Posted September 19, 2019 I had the same issues until my doctor put me in a low dose of Mirtazapine to help with the weight loss, insomnia and anxiety. After a few weeks I am no longer as jumpy. It's not 100% but it's at least tolerable now. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 20, 2019 Report Share Posted September 20, 2019 A hyperactive startle response is a huge reason for my awful insomnia. Every little noise sets off an explosion in my head, and a surge of adrenaline. I tried ear plugs but they hurt my ear canals and don't stay in properly, so I've resorted to half a cotton ball in each ear and a beanbag stuffed animal over one ear (the other ear is in the pillow) when it gets bad. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 20, 2019 Report Share Posted September 20, 2019 1 hour ago, KaciCrochets said: A hyperactive startle response is a huge reason for my awful insomnia. Every little noise sets off an explosion in my head, and a surge of adrenaline. I tried ear plugs but they hurt my ear canals and don't stay in properly, so I've resorted to half a cotton ball in each ear and a beanbag stuffed animal over one ear (the other ear is in the pillow) when it gets bad. What about noise cancelling earphones? Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 20, 2019 Report Share Posted September 20, 2019 1 hour ago, DizzyPopcorn said: What about noise cancelling earphones? I can't imagine that would be comfortable for sleeping. Quote Link to comment Share on other sites More sharing options...
Random-Symptom Man Posted September 20, 2019 Report Share Posted September 20, 2019 I sleep with a headphone headband. It's awesome. Super comfy. White noise. Meditation. Instrumentals. It helps me sleep - especially when I travel to doctors. It can even be a sleeping mask when the room is bright. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted September 21, 2019 Report Share Posted September 21, 2019 On 9/13/2019 at 6:13 AM, DizzyPopcorn said: Undiagnosed but i can relate as well. For me, at least right now, passing a car and accelerating generate too much adrenaline and i feel short of breath for a few secs. I cannot play video games anymore unless they're tame and nothing exciting happens. Definitely sucks. I hope all of this goes away once im better abd medicated Before i completely broke down, i remember playing sports games on my xbox. Every time i had a super close game, i felt really bad and had to quit. I was angry because i was just like i want to enjoy myself. I forced myself to sleep to escape the suffering. At the time i thought it had something to do with my blood pressure. But in the back of my head, i remembered i had fainted once already at that particular time and i didnt accept that as normal. Im glad im through with those stages of whats wrong with me? Is there something wrong with me? I remember this feeling hitting me again when i was putting a computer desk together. I had to stop and tell the wife i need the room alone to escape. Then recently i watched 2 action movies back to back. That really screwed me up. I was getting these jump scare feelings and what felt like some shock or punch to the gut. This time i had xanax. Took my max dose and requested to be left alone to sleep it off. Trash disease. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 21, 2019 Report Share Posted September 21, 2019 5 hours ago, Derek1987 said: Before i completely broke down, i remember playing sports games on my xbox. Every time i had a super close game, i felt really bad and had to quit. I was angry because i was just like i want to enjoy myself. I forced myself to sleep to escape the suffering. At the time i thought it had something to do with my blood pressure. But in the back of my head, i remembered i had fainted once already at that particular time and i didnt accept that as normal. Im glad im through with those stages of whats wrong with me? Is there something wrong with me? I remember this feeling hitting me again when i was putting a computer desk together. I had to stop and tell the wife i need the room alone to escape. Then recently i watched 2 action movies back to back. That really screwed me up. I was getting these jump scare feelings and what felt like some shock or punch to the gut. This time i had xanax. Took my max dose and requested to be left alone to sleep it off. Trash disease. You got that right. Trash disease explains it very well. Quote Link to comment Share on other sites More sharing options...
p8d Posted September 21, 2019 Report Share Posted September 21, 2019 @KaciCrochetsmitrazapine is the only med that allows me to sleep through the night. It works differently than antidepressants and sleep meds. This is off Wikipedia, not my favorite source but it describes the pharmacology well, especially why it works for us Mirtazapine has antihistamine, α2-blocker, and antiserotonergic activity.[7][72] It is specifically a potent antagonist or inverse agonist of the α2A-, α2B-, and α2C-adrenergic receptors, the serotonin 5-HT2A, 5-HT2C, and the histamine H1 receptor.[7][72]. Quote Link to comment Share on other sites More sharing options...
KaciCrochets Posted September 21, 2019 Report Share Posted September 21, 2019 @p8d I will have to remember that! I do okay right now with the hydroxyzine, but my fear is that it will stop working. It makes me feel better to know of other meds to try. I just need something to keep the surges at bay long enough for me to fall asleep. Once I fall asleep I'm good. Well, good enough. @Random-Symptom Man I will have to look into the headband earphones, I'm intrigued! Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted September 21, 2019 Report Share Posted September 21, 2019 1 hour ago, p8d said: @KaciCrochetsmitrazapine is the only med that allows me to sleep through the night. It works differently than antidepressants and sleep meds. This is off Wikipedia, not my favorite source but it describes the pharmacology well, especially why it works for us Mirtazapine has antihistamine, α2-blocker, and antiserotonergic activity.[7][72] It is specifically a potent antagonist or inverse agonist of the α2A-, α2B-, and α2C-adrenergic receptors, the serotonin 5-HT2A, 5-HT2C, and the histamine H1 receptor.[7][72]. Is this similar to benadryl? Seems like i cant tolerate benadryl anymore. My body goes haywire when i take benadryl now. Wake up to hot flashes, and adrenaline i guess. Benadryl helps me sleep well if i dont take it every day. Wish i could take it sometimes. Benadryl is actually more potent than my xanax unless i take benadryl everyday like i used to. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted September 21, 2019 Report Share Posted September 21, 2019 31 minutes ago, KaciCrochets said: @p8d I will have to remember that! I do okay right now with the hydroxyzine, but my fear is that it will stop working. It makes me feel better to know of other meds to try. I just need something to keep the surges at bay long enough for me to fall asleep. Once I fall asleep I'm good. Well, good enough. @Random-Symptom Man I will have to look into the headband earphones, I'm intrigued! Before i had xanax, they gave me hydroxyzine after a hospital trip. It did 0 for me. Even took extra and felt nothing. It was still a dose that could be taken. Still felt nothing. Glad it works for you. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 21, 2019 Report Share Posted September 21, 2019 7 minutes ago, Derek1987 said: Before i had xanax, they gave me hydroxyzine after a hospital trip. It did 0 for me. Even took extra and felt nothing. It was still a dose that could be taken. Still felt nothing. Glad it works for you. Refresh my memory if you don't mind, but they did rule you out for a pheo in your case right? Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted September 21, 2019 Report Share Posted September 21, 2019 17 minutes ago, DizzyPopcorn said: Refresh my memory if you don't mind, but they did rule you out for a pheo in your case right? Yeah it was ruled out. I was supposed to see an adrenal gland specialist anyway. Missed 2 appointments because i was having a really hard days. It was so hard to reschedule with them. Finally got ahold of them this week and they dont accept my new insurance lol. So i told my primary care doctor to find me another who accepts my insurance. I dont know what they can even do. My cardiologist said the beta blocker is really the only thing that can be done about it. Idk. Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 21, 2019 Report Share Posted September 21, 2019 43 minutes ago, Derek1987 said: Yeah it was ruled out. I was supposed to see an adrenal gland specialist anyway. Missed 2 appointments because i was having a really hard days. It was so hard to reschedule with them. Finally got ahold of them this week and they dont accept my new insurance lol. So i told my primary care doctor to find me another who accepts my insurance. I dont know what they can even do. My cardiologist said the beta blocker is really the only thing that can be done about it. Idk. Wait, so in the usa, your insurance isn't accepted everywhere as long as you have a, referral? Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted September 21, 2019 Report Share Posted September 21, 2019 3 hours ago, DizzyPopcorn said: Wait, so in the usa, your insurance isn't accepted everywhere as long as you have a, referral? No. Our healthcare system is trash too. You have to check with a doctor if they accept your insurance. Quote Link to comment Share on other sites More sharing options...
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