yogini Posted October 27, 2004 Report Share Posted October 27, 2004 For the past 3 or 4 days I have been unable to sleep at night. I know a lot of you suffer from insomnia, but normally I sleep OK. I wake up once or twice, but fall back asleep. I have a strange nervous feeling which is keeping me up, almost like my body is secreting a hormone which makes me anxious. It feels like it is coming from my stomach, if that makes any sense. I've had increased dizziness and tachycardia for the past week, so my doctor agreed that I should increase my beta blocker by 1/2 pill. I did this on Mon, but it hasn't seemed to help. Just now at my desk I felt funny and watched my HR go from 85 to 130, while seated. Fortunately, it came back down again. I am not under any particular stress right now, other than that I have been going through a bad POTS spell and can't seem to adjust my medication. (The other stress is that I have to catch a cab in Times Square afer work everyday, and you can imagine how nervewracking it is in this state!) The doctors tell my condition is under good control and that I should try to go off my meds, yet I can barely walk and keep having tachycardia attacks. I don't consider that "good control". I'm thinking of eliminating caffeine amd cutting down on sugar, but I would love to hear from anyone who experiences this symptom or has any ideas on what to do. Thanks and sorry for the long email.-Rita Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted October 27, 2004 Report Share Posted October 27, 2004 I don't have any great words of wisdom, other then this part of POTS usually passes with time. Sometimes it comes back but shorter in duration---or less intense. A good thing to do is pace yourself---and try to deal with stress better. The reason I say deal with it better, rater then avoid it---is because it's nearly impossible to avoid, unless you stay house bound.I now take things more in stride----but still have a long learning experience ahead of me. Time's Square!------------------------------I was just in Long Island for two days and my nerves were rattled. My husband and I traveled to New York to see Dr. Milhorat and Dr. Bolognese at the Chiari Institute. Driving through the New Jersey interstates was terrible. Were used to traffic in Toledo, Ohio----nothing close to New Jersy----other then we have some of the same idiots on the road----but New Jersey has 10 more of them. Plus, it's at a much faster pace.Hang in there and I hope you feel much better soon.Julie :0) Quote Link to comment Share on other sites More sharing options...
Merrill Posted October 28, 2004 Report Share Posted October 28, 2004 Hi Rita -- It doesn't surprise me to hear that you're having more trouble during the night if you're in a period of increased symptoms during the day... I hope you (and your doctors) can soon figure out what you need to get things back under control, though sometimes the best thing is simply to wait, and hopefully you'll soon be back in a more stable place. It's a vicious cycle, though, isn't it? Poor sleep at night leads to feeling crappier and more symptomatic during the day and so it goes. I've been having great success lately with 1/2 an ambien at bedtime; I just can't get to sleep w/out it, it seems, or else I'm really restless all night. (Wish it were otherwise, but so it is...)Hope you feel better soon!Merrill Quote Link to comment Share on other sites More sharing options...
EarthMother Posted October 28, 2004 Report Share Posted October 28, 2004 It does sound like your body is working something out. It is also great that you seem to be able to focus on the physical symptoms and feelings without getting lost in the mental stories that can often accompany our strange experiences.Since caffine and sugar came to you as thoughts, follow your instinct and give these a try ... or rather try cutting back or eliminating and notice what happens.Daylight savings is this weekend ... don't know if that will help or not. Just another thing to notice.Good luck to you on your healing journey.EM Quote Link to comment Share on other sites More sharing options...
calypso Posted October 28, 2004 Report Share Posted October 28, 2004 I definitely have the hormone-surge kind of feeling that creates an anxious/nauseating feeling. I notice it gets worse when I am under ANY stress -- and of course, it is impossible to totally avoid stress, but it helps to manage it as best you can.I don't have much for ideas to combat this, but I just wanted to say "me too." I think it's just our bodies overreacting to stress because they have learned that this is the only way to handle stress, whether that be physical or mental. Amy Quote Link to comment Share on other sites More sharing options...
yogini Posted October 28, 2004 Author Report Share Posted October 28, 2004 Thanks for the responses. I think I just needed people who have been there to tell me it would go away soon! It's easy to see that when I read other people's posts, but hard to believe when it comes to myself. I am looking forward to getting some rest over the weekend. I think we gain an hour, but I always get confused about that... P.S. Julie, you're right, traffic in northern NJ is the worst... Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted October 28, 2004 Report Share Posted October 28, 2004 I don't know if this is the same thing but I sometimes get this fight or flight feeling, kind of like I'm anxious with no reason to be. It's not like a panic attack, it almost feels like I'm on too much of a steroid. I feel nervous and restless, I can get tachy and I sometimes get the runs. And like you descibed, the feeling seems to come from my stomach.At Mayo they referred to it as an "autonomic storm". It sure feels that way. The good thing is that it always it always passes, it's not a constant. Having to catch a cab everyday in NYC must be quite the adventure. I get stressed just thinking about it.GayleP Quote Link to comment Share on other sites More sharing options...
yogini Posted October 28, 2004 Author Report Share Posted October 28, 2004 Gayle, That's the same feeling I'm getting. You're right that it does disapear, though. I'll have to keep that in mind. For some reason I've been having the feeling every day this week, and so it seems worse than normal. Today I didn't have any caffeine or sugar (I am SO craving a cookie right now) and my HR is still high sitting down. Hopefully this is just a phase that will end soon.I'm just bracing myself for the next couple of hours until I have to go outside and catch a cab around the corner from the nation's busiest intersection! Lucky me! Usually I take the bus, but I need to get stable before try that again... Thanks,Rita Quote Link to comment Share on other sites More sharing options...
Merrill Posted October 28, 2004 Report Share Posted October 28, 2004 Oh, Rita, I work in the heart of downtown chicago and I'm so jealous that you'll be catching a cab in Times Square! I love NYC--spent more than a week for work there a couple years back--stayed in the Marriott Times Square (say, maybe you can just pretend you're a hotel guest and step right into a cab that way?) and commuted (by cab) to the village every day. Maybe you can just groove with the heartbeat of the city--feel it's pulse and ride with it! It'll take you where you need to go...Sending smiles and best wishes for a short wait tonight...m Quote Link to comment Share on other sites More sharing options...
yogini Posted October 28, 2004 Author Report Share Posted October 28, 2004 Merill,Thanks wishing me luck, I'll need it. Funny that you mention the Marriott, because I used to sneak in there to use the bathroom before I worked in this area. It was a good clean option in midtown, but I think they locked it up after 9/11. I went to Chicago a few yrs ago when my sister was looking at schools. We shopped and ate and had a great time. Guess I am a city girl at heart!-Rita Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 29, 2004 Report Share Posted October 29, 2004 Hi Rita, come on up to Westchester county and catch fall instead of catching the taxi! I love the city, the pace is so alive and incredible! (You could say the pulse of the city is tachycardic!) Years ago I tried coming off the coffee and sugar and in cold hard facts for me, there was no change in the highs and lows of my heartrate. I also like to use the term "autonomic storm" because that is what it is like when you emotionally feel calm and all around that center of calm you feel the sweats, the nausea, the heartracing...it's like being a spectator sometimes! Besides all the usual night time ritual things you could do to get to sleep, sometimes eating some carbs like a slice of bread, will help me sleep better. Sleep can be another issue for us too. My sleep study showed mini autonomic storm bursts while I sleep, so it is not unusual for me to be tired during the day. Keep trying things until you figure out what works for you. take care, tearose Quote Link to comment Share on other sites More sharing options...
Merrill Posted October 29, 2004 Report Share Posted October 29, 2004 Hey, Rita, they unlocked it!!! I was there in October 2003 and walked right in! Your post cracked me up ... I know that bathroom well! I took my family there in 2000 when I was visiting, and again last year... no problemo! Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted October 29, 2004 Report Share Posted October 29, 2004 Rita,Hope you can use that bathroom after all. How funny that both you and Merrill know about the same bathroom. Small world. A clean bathroom is a must.Tearose,Do you live in Westchester? I have really fond memories of Westchester County. I lived there for 3 years during middle school. It feels like a long time ago.Anyhow it was a beautiful place to live. Especially in the fall. It's been years since I've been back there but I'm sure it still looks the same.GayleP Quote Link to comment Share on other sites More sharing options...
DancingLight Posted October 29, 2004 Report Share Posted October 29, 2004 rita,i get the "fight or flight" feeling that gayle describes. like merrill, i can't live without my ambien and it really helps chill out my autonomic system.i don't think i feel the sensation in my stomach...i feel it more in my chest, neck area. does that sound familiar to anyone? it gets more and more extreme the longer i am upright and basically is like the blood is draining from my head, neck, chest--anywhere above my heart--but at the same time creates this very uncomfortable edgy, anxious-type sensation...even though it is not anxiety. i can also often feel my heart beating in the center of my chest. i feel it right now...that "sinking feeling" in my chest as i get more and more tired and feel like i am fighting to get blood where it counts! anyone else feel like this? just curious...rita...hope you get a good night's rest. i hate that vicious cycle of a bad day, bad night's rest, worse day, more fight or flight, etc. etc. ugh!emily Quote Link to comment Share on other sites More sharing options...
Merrill Posted October 29, 2004 Report Share Posted October 29, 2004 PS If anyone was thinking this -- I know 2000 was pre 9/11 -- I was just saying that I love that bathroom, visit it whenever I'm in NYC, and it was open in 2003. (I didn't want anyone thinking I don't know what day it is or anything... )PPS I never even wrote that I know that autonomic storm feeling well too ... and everything starts in my stomach/gut. What a pain... and when I start feeling sick there, the whole system goes wacko, my heart beats hard and fast and I get scared...One question: why have I read several times here that doctors want you to wean yourself from the meds wehn (or because) you're doing better? Isn't it the meds that control the symptoms and keep folks feeling more together/functional? If someone has dangerously high blood pressure, for example, which requires medication, no one would suggest they go off it because their blood pressure is lower! Seems goofy. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 29, 2004 Author Report Share Posted October 29, 2004 Thanks, everyone! I slept a little better last night and am counting the hrs til the weekend.Emily, I get that same feeling where I feel like enough blood isn't going to my head. I find it's worst when I am standing still and it actually helps me to move around a little. Tearose, where do you live in Westchester? Gayle, where did you live? I grew up in Dutchess County near Poughkeepsie. Merrill, thanks for the tip about the bathroom - I'll have to check it out as soon as I'm feeling better. I'm really confused about the medicine thing too. The docs think I am getting better and the meds aren't that good for me. I realize now that I still need the meds, but I can't seem to get back to the somewhat stable place I was with the meds a couple of months ago. The worst part is that I don't really have a doctor that can walk me through how to fix things. Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted October 29, 2004 Report Share Posted October 29, 2004 I had that same nervous feeling when I started taking lexapro. It was horrible. I started having panic attacks and I couldn't function. My cardio figured it out and quickly took me off of it. Since then I really havent had that nervous feeling. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 1, 2004 Report Share Posted November 1, 2004 i know what your talking about - that one only comes around when im really bad - I find that a betablocker helps me with that feeling.I assume its an adrenal reaction.Caffiene is an aboslute no no for me - im very hypovoluminic (sp?) so diahertics are bad for me - and anything that boosts my already wired nervous system... Quote Link to comment Share on other sites More sharing options...
Star382000 Posted November 1, 2004 Report Share Posted November 1, 2004 Ack I have to stop opening many windows in here! There is just so much and all so wonderful! I'm not positive, but I think my post at http://dinet.ipbhost.com/index.php?showtop...opic=1325&st=15 was meant for this topic.. and just as I say that I open another window!! I am so sorry for the disorganization and scatterbrainness..just all so but in a very good way!!Oh and another thing, I've found that it DEFINATLY helps me to keep moving (once my vision is clear) I've found an excuse for me to keep my old pace from before hit with POTS, the faster I get to where I'm going and back the sooner I can sit back down! Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted November 1, 2004 Report Share Posted November 1, 2004 Rita,I lived in Larchmont which is on Long Island Sound. Actually it was on the border between Larchmont and Mamaroneck.I woke up today with that feeling you descibed . Felt anxious, defintely coming from my stomach. Fortunately it went away, it can sometimes last all day.I forgot to mention in my last post that when I start to feel that way it sometimes helps to warm my hands with a heating pad and to put lavender oil on my pulse points. If that doesn't work then a half an ativan will ususally do the trick.Hope you don't get too many more episodes.GayleP Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 4, 2004 Report Share Posted November 4, 2004 Its the body secreting adrenaline to maintain blood flow and pressure to the brain which is lagging due to nervous system disfunction from what my doctor tells me Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.