lynnie22 Posted July 1, 2013 Report Share Posted July 1, 2013 I have been posting quite a bit lately as I try to tackle the many challenges of POTS and try to improve. Worsening is this crippling anxiety/sense of panic that seems to rise up inside of me, causing me to be unable to function in the world and feel overwhelmed/hypersensitive to all sorts of stimulation. Concomitant with it are periods of escalating blood pressure, usually for a week every month. I am not certain how much of the anxiety/excitability is directly related, but I suspect a lot of it. It FEELS so physiological.Anyway, I thought I'd ask those of you who go through this what you do about it, what helps. Aside from taking ativan, deep breathing, avoiding too much stimulation, and listening to soothing music, I'm not sure what to do. Especially as I become more and more sensitive to sounds and excitability around me. I've also become hyper sensitive to everything I take in physically too. I know this is not uncommon. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 1, 2013 Report Share Posted July 1, 2013 Lynnie,I never felt anxiety but I did feel overestimated by many things. My sense of smell, sight, hearing, and depth perception have all been altered in some way by this. Mostly I became oversensitive to things. Over time, I have slowly tried to do my own kind of desensitization therapy. For example, I have hyperacusis now (very, exceptionally sensitive hearing). I hear things others can't in the background because their hearing is not as acute. I could listen to the TV on the lowest sound setting when all else was quiet in the house and hear it just fine. But my mom and stepfather are older and have hearing loss so you can see the conflict. They would turn it up so loud it would trigger my symptoms ....tachycardia, nausea, migraine, dizziness, sweats. So I started turning the TV up on sound setting at a time for as long as it took for my body to acclimate to the noise. Sometimes it was a couple days, sometimes it was weeks. But now, I am much less sensitive to the general noise of life. Sudden really loud noises still are a pain like the fireworks that have already started in my neighborhood for the 4th. I did the same thing with lights. I haven't managed to get over the smell issues but I have discovered that taking the things out of my environment /avoiding the things that cause me problems seems to make the issue progressively worse. So I haven't been able to add any smells back in but I don't let myself avoid new smells that start making me uncomfortable. I may only linger in their presence for a minute but I know if I don't there won't be many things left I can smell particularly household cleaners. I've found alternatives but sometimes a girl just needs some Windex. Ultimately, my point is, at first, I was avoiding all the things that were setting my body off too, but I realized all that was doing was making me more sensitive instead of solving the problem. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted July 1, 2013 Report Share Posted July 1, 2013 Lynnie,I'm so sorry you are going through this. I know exactly how you feel. There are lots of threads on here dealing with this issue. I really don't have any new answers for you, other than what you are already doing, but wanted to let you know that you are not alone.The only answer I've been able to come across has been that since our ANS is out of whack, we can find ourselves in a constant "fight or flight" cycle. I know that for me, medication works for the most part (but of course not for everyone). I have found though, that the littlest things can set me off. I never used to be like this before being dx. I wouldn't say that I am/was a laid back kinda person either, but definitely not as sensitive as I am now. I can be very unnerving and scary.Keep trying to find whatever method of relaxation works for you. I have also found the following book to be helpful.http://www.amazon.com/Anxiety-Phobia-Workbook-Edmund-Bourne/dp/1572248912/ref=sr_1_1?s=books&ie=UTF8&qid=1372682023&sr=1-1&keywords=the+anxiety+and+phobia+workbookBe well,Bebe Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 1, 2013 Report Share Posted July 1, 2013 That worst panic attack I ever had was during all this. To the point where I drove myself to the hospital ran into the ER and announced I was having a heart attack. It is slightly comical when I look back. As bebe said there are really no answers. Certain medications and relaxing techniques can help though. I do acupuncture seems to help. Also, I like to work out like on the elliptical. I put high resistance so I stop myself from going too fast. Not sure if you are able to? I get massages as well although they get costly. I think they help a lot if you can afford it. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 1, 2013 Report Share Posted July 1, 2013 Could any of your medications be causing the hypersensitivity? I suspect that one of the medications my son was taking might be causing some of those problems. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted July 1, 2013 Author Report Share Posted July 1, 2013 thanks for the feedback.Katy, wow that just must be a real challenge especially in a situation where others are losing their hearing. But glad you have been able to desensitize yourself. It is amazing how for some of us, things are so much more so.Bebe and Agreeky, it's good to know I'm not alone. Acupuncture is on the list.I don't think there could be anything I'm taking causing this, Looneymom, unless it's daytime withdrawal from ativan which I take to sleep. Maybe.... Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted July 2, 2013 Report Share Posted July 2, 2013 I'm also hypersensitive to stimuli like sound, commotion, crowded places. I take a low dose SSRI and a low dose benzo but can still get anxious.I have to say that guided relaxation meditation makes a HUGE difference with my anxiety. I try to do it daily and have really noticed an improvement in my anxiety level. There are lots of good videos on Youtube that are wonderful for relaxation and anxiety relief (I could send you links some that are very helpful to me if you'd like) but when I was facing heart surgery a few months ago and I was in a panic, what helped stop me from completely melting down with fear was relaxation meditation. Just a suggestion! Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted July 2, 2013 Author Report Share Posted July 2, 2013 Pumpkin, I'd really appreciate the links -- and any suggestions for relaxation meditation cds. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 2, 2013 Report Share Posted July 2, 2013 I had to stop taking the fludro because of hypersensitivity to everything. sound, colors, lights, 2 people talking at the same time...have you had your norepinepherine levels checked? That explaned a lot of it for me and the 'anxiety'. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 2, 2013 Report Share Posted July 2, 2013 There are tons of meditation/relaxation clips on youtube that I use every now and then - just go to youtube and type in "relaxation" or "self hypnosis anxiety/panic" and choose some that work for you.If whatever you're dealing with is anxiety (instead of the inappropriate adrenaline releases that POTS may be responsible for in some of us), have you ever considered Cognitive Behavior Therapy? There are many free online resources for that. Best,Alex Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted July 3, 2013 Author Report Share Posted July 3, 2013 Hi Alex, I actually just saw my POTS dr today and it is both he said, the adrenaline feeding the anxiety back and forth. I am in therapy and believe that cognitive techniques can be helpful. When a surge happens, however, it seems so overwhelming. I hope that can change. I just ordered a dvd on pranayana and will look for relaxation meditations.Maia, my norepinephrine levels were checked once and somewhat elevated. Not checked again. Quote Link to comment Share on other sites More sharing options...
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