nantynannie Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Everyone,I was wondering if anyone else has had anxiety for no apparent reason. I do not mean panic, just the feeling that I have had way too much caffine or too many diet pills, like I am going to jump out of my own skin and maybe my brain will explode...kind of like restless legs that involves the entire body.My tilt table test says I have inappropriate sinus tachycardia from an excess catecholamine response. I am on beta blocker (Coreg) which seems to have lowered my heart rate, but the meds have not relieved any of the excess adrenaline feeling like I am going to explode.Also, my 24 hour urine results showed LOW catecholamines, not excess catecholamines. Any ideas? I am not sure I can do another day like today. I am thinking of taking some kind of pain meds or something to counteract the wired feeling. Thank you in advance for any responses. Of course I could call the doc, but he does not even know what POTS is. And he is supposed to be a great cardiologist! I went from 80 to 167 on tilt, and was shaking so badly I thought I might explode. At 25 minutes, by BP started to drop, got to 90 (from 125) and I started shaking again so badly that he stopped the test before my BP fell any further. Yet my results say no evidence of orthostatic hypotension. I don't know what to think and I am just rambling here so I will stop now.Ann Quote Link to comment Share on other sites More sharing options...
ethansmom Posted July 7, 2004 Report Share Posted July 7, 2004 The feeling you describe is very common with dysautonomia. I like to describe it as a feeling of anxiety that stems from the body and not the mind. My body's reaction to stress is more physical than mental, which in turn makes me feel anxious- which is why I think so many of us are misdiagnosed with anxiety. What area do you live in? It would be greatly to your benefit to search for a specialist who can determine whether or not you have dysautonomia. Unfortunately, ignorance on the part of the medical community is our most perplexing problem at times. You can take a peek at the physician lists from DINET and NDRF at the following links:http://www.dinet.org/physicians.htmhttp://www.ndrf.org/physicia.htmGood luck! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted July 7, 2004 Report Share Posted July 7, 2004 I also go through the same thing. It comes in waves, just like many of my other symptoms. I never have it last more than a few days at a time. before my liver function enzymes became to high, I was on Paxil, it reduced a lot of the feeling of anxiety when my body was "acting up". but I heard from one other person that Wellbutrin worked really well for her. I don't know how good your Doc is but it is a subject that you should really discuss. If all else fails, find a new Doc.Good Luck, Blackwolf Quote Link to comment Share on other sites More sharing options...
calypso Posted July 7, 2004 Report Share Posted July 7, 2004 I am taking Lexapro, which has helped a bit with the anxiety feelings. However, I hate the idea of being on an antidepressant. For six months I dealt with these feelings without this drug. I found progressive relaxation techniques, yoga, exercise and meditation to be slightly helpful. And staying busy with something -- reading, hobbies, etc.There seems to be the anxiety that's all physical -- just your body running on overdrive -- then the mental anxiety that is a reaction to all the physical stuff and how it wears you down. Try to separate the two. You have control over the mental stuff and may have even a little control over the physical. Try to remember you are not going to die from this and that your body is just a little wacky right now.If you really feel like you're still anxious after trying to go on without meds, maybe you should consider antidepressants or antianxiety pills (Valium, Klonopin). But I would NOT just take some pain meds to relieve the anxiety. They are often addictive. Always talk to a doctor first before taking anything.Good luck,Amy Quote Link to comment Share on other sites More sharing options...
Deb Posted July 8, 2004 Report Share Posted July 8, 2004 Dear Ann,You are the first person I've read about that sounds like what I am going through. I have been complaining to my doctors for months about weakness in my legs and arms, shaking and/or trembling, and falling down. The episodes I have come and go, but they usually last for a few weeks, and then go away for a few weeks. During the periods that are episode free, I feel mostly normal. I still have a bit of the weakness and the trembling from time-to-time. I was having a lot of forceful heart beats, plus my blood pressure has gone up and stayed up, so my cardiologist put me on an ACE inhibitor. It took almost four weeks to work, but I do feel a great deal better, and the episodes are much less severe. In fact after abut six weeks, I'm finally back in a good period.I had similar results that you did from the last tilt table test I had about two weeks ago. I was shaking so hard my limbs hurt and my hands felt numb. And yet, my heart rate and blood pressure responses were normal! I failed miserably the last time I had the TTT in January. The Doctor who did the last tests (I also had the two breathing tests) said that I am now either recovered from the POTS or in remission. YEA!!! But the real kicker is that he also said that my reaction to the tests and the episodes I've been having were caused by anxiety, yes, anxiety. I've been on 100 mg of Zoloft for three months now, and they increased it to 150 mg. How high of a dose do most people take? I'm now at the place where my "specialists" don't want to see me anymore because they say there isn't anything wrong with me other than anxiety. I just don't know what to think anymore. I'm trying not to think about it at all. I am trying to keep an open mind, though. So I'm giving the Zoloft time to work, and if the episodes don't come back, great! But if they do, my husband is pushing me real hard to go to Johns Hopkins for a complete work-up. I guess I really don't have anything to help you with, Ann, other than to say that you're not alone. I've been holding back from writing all of this out because it's been a little hard for me and my husband to accept, but I just had to get it out. Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 9, 2004 Author Report Share Posted July 9, 2004 Hi Deb,Thanks for your story (and thanks to all the responses I got). My cardio says that the shaking is in response to excess catecholamines, which is OFTEN MISDIAGNOSED as anxiety or a panic attack...give time for your meds to work, but if they do not, keep plugging away for answers. I have found that many of these docs are not as brilliant as they pretend to be. Most are not up to date on this illness. Excess catecholamine is an autonomic function. Do you feel cured from POTS or were you just having a good day?Ann Quote Link to comment Share on other sites More sharing options...
Deb Posted July 9, 2004 Report Share Posted July 9, 2004 Ann,I do feel as though I don't have POTS. I may not be cured, though. I still believe that my autonomic responses are not completely normal. It takes me forever to recover from being hot or cold. My heart rate goes up at inappropriate times, but not by 30 bpm, more like 22 to 25. I have an appointment next week with my GP who is very supportive of me even though she doesn't know much about POTS. I'll ask her about excess catecholamines. I'm pretty sure I was tested for that in early January. But it certainly is something to check out.I think I read somewhere that some people can have anxiety attacks while asleep. If that's true, then I guess I have them because I wake up sometimes shaking. It is always far worse when I am lying down. How about you? Are you worse at different times? I hope you're doing better and find something that helps your anxiety. Quote Link to comment Share on other sites More sharing options...
migraine Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Ann, Yes I do have these weird little anxiety bouts. I feel uncontrollably hyper, yet a little sick at the same time. My heart is probably racing, but a weirder sensation is a sense that I am starving or something. My doctors used to think this was a hypoglycemic attack but the food didn't really seem to fix it. It usually lasts 1-2 hours once or twice a day for about a week....therefore I always thought it was a PMS thing...especially because I usually become very snappy and emotional. Since being on my beta blocker it does not happen as much, and when it does I try to keep to myself so I don't accidentally bite someone's head off or something. When its really bad it will sometimes lead me into a migraine and then I'm a waste of flesh for a couple days.What is really funny is that I used to be a singer (POTS patients, I guess, are not suppose to sing.) During really big concerts I would get so nervous I had to run or something just to release energy. By the time I performed I was usually short of breath and my entire body was shaking. I remember once I played Maria in West Side Story. During the scene on the stairwell where Tony and Maria sing "Somewhere" my Mother was amazed at the special effects of the wind blowing my white gown in the breeze. I laughed, that was no special effect...that was my leg shaking throughout the entire scene.Anyway, in college (even before my POTS diagnosis) I was given a beta blocker to help me get through my senior recital. It worked wonders. I have not been tested for the catecholamines so I don't know much about that. Now if these attacks get really bad I take an extra beta blocker for the day and it usually subsides. Anyway, I guess I know what you're saying and you feel a little crazy like you need to crawl out of your skin for a bit. If it happens often, you may need to try some different perscription combos with your doctor. Good Luck. Quote Link to comment Share on other sites More sharing options...
opus88 Posted July 9, 2004 Report Share Posted July 9, 2004 Migraine,My health trouble has ruined 2 successful careers - one as a school music teacher, the other as a choral conductor & workshop leader. It has also completely taken away my ability to sing - not only can I no longer stand long enough for a concert, but I can't breathe deeply enough (never had much lung capacity to being with) and can no longer find the muscle strength to support the tone. As of about 3 1/2 years ago, I have lost my ability to match pitch - I never know from one note to the next if it will come out right. And I was a voice major and still teach private voice lessons! I can't tell you how much I miss it . . .I've also had to give up theater due to nerves that never used to be a problem, horrible memory problems and brain fog, and of course never knowing if I'll feel well enough to get through a rehearsal or performance (which just adds to the stress, therefore creating that intolerable cycle that's nearly impossible to break out of). I do still perform as a pianist with an outstanding and fun choral group, but I must take a beta blocker and do a lot of praying to get thru the shows. I HATE relying on a drug!!! But it's the only one I take - and without it, that would be the end of my music, which has always been my life's purpose.Doesn't it make you wonder why you would be given a talent and a passion, only to have it slowly taken away from you? How do you deal with that? Quote Link to comment Share on other sites More sharing options...
migraine Posted July 9, 2004 Report Share Posted July 9, 2004 Oh my gosh Opus88, sorry to get off the subject here, but I can't believe there's another music/singer person on this sight - I'm so excited. We'll have to exchange e-mail so we don't bore everyone else with music stuff. It seems very weird because you would not think POTS patients would be singing or performing because of the very examples we have listed. Yes it seems like a slap in the face to be given a talent and letting it lay dormant. I guess I have been too tired to think about it much. There are times I feel really depressed about it. I should have known from the Opus88 that you were a music person.I have had (undiagnosed) POTS my entire life and have always had stagefright no matter how many concerts or appearances. Once out of college my auditions became unbearable and each one sucked every bit of life and confidence out of my body, but I needed to keep going to get jobs and feed myself. While doing summer stock, my husband rode along on his white horse and we got married - he was/is a guitar player. We started a country band together (A far cry from opera or musical theater) and we performed 2-4 times a week while I worked part time temp jobs. He convinced me not to be nervous because he was up there with me and that most everyone in the bar was drunk and didn't care what I sounded like. He was right and we had a great time and made pretty good money.Once the children started coming and the POTS symptoms getting worse my main problem was staying awake long enough to perform the long 10pm-2am sets...I couldn't do it now if I tried - especially standing that long. I finally quit the band after my second child was born. I actually don't miss it really, although when they play really big outdoor shows I still wish I could be up there. My 6 year old has started to play drums in the band. She has a talent show tonight and I'm actually nervous for her. She gets so many compliments and her father-guitar player is always complimented for passing on the music gene. Selfishly I want to cry out...hey I used to sing, I guess that's what hurts the most right now. It has helped me to focus on the girls' music or sports talents, because I know there is still a glimmer of my old self passing on to them.People don't realize that being a music teacher or conductor is such a physical career. Many of us with POTS have had to quit our jobs because of this illness. I am lucky to be able to keep on with my current job, but I don't think I could ever take the physical aspect of singing, teaching, or conducting again. I tried to switch over to teach kindermusic and other music classes at the YMCA. I litterally had to take a nap after each class. I can only imagine how you feel losing that gift and energy level. I still sing at church or in the car and notice my voice getting warbly. I know what you mean about memory. I'm almost scared to be in a show for fear I would forget my lines or something. I have not quite accepted the fact that my singing career is probably over. In the back of my mind I keep thinking that my energy will come back and that I will rejoin the band at some point.I currently work full time at a College Conservatory of Music. My work is very enjoyable and I am inspired by the students that I see up and coming. I would feel like a failure if I didn't have music in my life at all, but working here has made me feel like my Bachelor of Music wasn't a total waste of time. I 'm glad you are able to keep your choral group going and keep some music going in your life. We'll have to chat some more. Sorry to everyone else for getting off the subject Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 10, 2004 Author Report Share Posted July 10, 2004 Deb,And everyone else with this crazy symptom...sound like catecholamines if it is waking you up at night from shaking. The same thing happens to me at night while sleeping and it also happens after I eat. I get shaky and my heart races. I wonder if we have an excessive response to a normal amount of catecholamines (mostly adrenaline) or if we have too many in our systems? I wish the docs would figure this thing out. The beta blockers did not work for me. They lowered my heart rate a bit, but they made me feel like I was going crazy. Oh well. Take care,Ann Quote Link to comment Share on other sites More sharing options...
Deb Posted July 10, 2004 Report Share Posted July 10, 2004 Ann,I couldn't tolerate the beta-blocker I was on, either. I did a little research of catecholamines, and I printed something to show my PCP on Thursday. At least she always thought that my problems were not only caused by anxiety. I hope you've gotten some relief from your anxiety attacks. I've tried Xanax, but it doesn't seem to do anything for me. Another reason why I think there is more than anxiety going on. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted July 10, 2004 Report Share Posted July 10, 2004 For me---that is the worst part of POTS-ANXIETY/hyper adrengic.If I don't have that problem, I can usually somewhat function---even with bad fatigue and pain. I can't feel comfortable anywhere feeling like i'm going to jump out of my skin.I have been on propranolol for 14 years. I know it's an adreanaline issue because, otherwise, why would a BB work if it wasn't a beta-adrengic issue?I always wonder if i'll ever get off beta blockers. Maybe one day my system will get tired of spitting out too much adreanaline. It's tiring isn't it?Julie :0) Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 11, 2004 Author Report Share Posted July 11, 2004 Migraine,I've read while doing research on POTS that it can make a person feel hypoglycemic. I also feel that way and I have checked my blood sugar and it is normal. Ann Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted July 11, 2004 Report Share Posted July 11, 2004 For those of you who have stage fright, you might want to try Toastmasters, http://www.toastmasters.org/. It is a public speaking group. I went to it for about 6 months and found it very helpful in sharpening my public speaking skills. You become aware of tones of voice, body posture, gestures, etc. Some of the people who joined were scared to death of speaking in public. They would stutter and stammer all the way through their first few speeches, but after a few times they all started to improve. Our class was very warm and encouraging, and it really helped some people to become more comfortable talking in front of others.Best wishes,Michelle Quote Link to comment Share on other sites More sharing options...
migraine Posted July 12, 2004 Report Share Posted July 12, 2004 Well, stage fright I am used to, but I didn't expect stage fright for my child! My oldest who is 6 performed in her first talent show. I was excited to be at the other end of the spectrum as a spectator. I was so nervous for her and I could feel that racy heart feeling start going. I thought I was going to explode because it was taking such a long time for her turn. Once she performed I could breath again but was shaking up until they announced her as the winner. I wonder if my heart would have exploded if she lost. I tried to be cool about it and luckily I was in the audience while she was backstage so she couldn't see her Mother turn into a spaz. My Mother was yacking about this or that and I just wanted her to stop talking so I kept snapping at her. She knows how I get when I'm nervous, but I guess she did not expect me to be that nervous for my child. I even got my POTS weepies and cried a little while she was performing. Luckily I had a camera over my face to hide it.Well, the beta blockers seem to work for me, but it looks like I'm going to need to pop an extra for all my kids events now Quote Link to comment Share on other sites More sharing options...
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