Guest Hanice Posted July 29, 2013 Report Share Posted July 29, 2013 Lately even reading something our loud will make me feel real bad. Like I will be reading out loud and I feel every word is taking my life away. I was reading Green Eggs and Ham to my two year old and I had to put the book down by the fourth page and not even talk because I got a sense that I might pass out if I kept going. I have no idea what's going on when this happens. I'm gonna take my bp and pulse while I read to see. Does this happen with dysautonomia or is something else wrong with me? Quote Link to comment Share on other sites More sharing options...
khaarina Posted July 29, 2013 Report Share Posted July 29, 2013 Same thing happens to me when I read aloud. I don't know what exactly causes it but I suspect it is dyautonomia. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 29, 2013 Report Share Posted July 29, 2013 I'm so sad.. I can't even read to my kids anymore. Does anyone else get this too or is it just me an Khaarina? Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 29, 2013 Report Share Posted July 29, 2013 Breathing is part of your vagal response (vagal nerve function) and it can/is affected by your autonomic nervous system. Many of us have gone through periods where talking becomes difficult because it triggers various symptoms or even gives a choking/strangling sensation. Some medications can also make this worse, for example, I tried Topamax a couple of years ago as a migraine preventative. Over the course of 6 weeks this particular problem got worse and worse. Once I was weaned off, I returned to my "normal" brand of feeling like I can't breathe but talking returned to normal. It could just be the dysautonomia but you may want to investigate if any of your meds or supplements could be contributing to this. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 29, 2013 Report Share Posted July 29, 2013 Thank you Katybug! I actually don't take any medications. Only some Valerian root. I can't really explain the feeling I get.. it's just horrible.. like I'm dying. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 29, 2013 Report Share Posted July 29, 2013 That would happen to me when I was very sick w POTS. I could not read to my child without feeling winded and exhausted. I know how it feels and it seems like something must be seriously wrong. Eventually I improved--for awhile I took an SSRI which is what seemed to help me the most. SSRI's seem to help many POTS patients. Increasing fluids and salt helped me as well. Hope you can get some help from a specialist. Quote Link to comment Share on other sites More sharing options...
lejones1 Posted July 29, 2013 Report Share Posted July 29, 2013 I get this sometimes too, not from reading out loud but sometimes from having long conversations. Like you, I don't really know how to describe except that it feels like my brain is just trying to shut down...or like you said, like I'm dying! It's terrifying, and I really don't know what causes it. Sometimes I can push through it and it passes but usually I just try to lay down in the dark for a little while. Ugh! I hope you figure it out, I'm sorry that happens to you too! Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 30, 2013 Report Share Posted July 30, 2013 I see this in my son when he is talking and it seems to get worse when he has a sore throat. He will be talking and all the sudden, he has a hoarse voice. I can tell that when he is having a really bad day, these symptoms get worse. At first, I thought it was allergies, but his testing showed allergies to a couple of grasses. I think it is just part of POTS or a virus that might be messing with the body. Hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 30, 2013 Report Share Posted July 30, 2013 MomtoGiuliana hello!It's not a winded feeling. It's like I'm dying that's the only way I have to explain it. I will ask my doctor about SSRI BTW have you ever taken the newer version of it, I think it's called SNRI?? I'M so anxious about being on drugs ugh! I also read that the ssri can give panicked attacks or "mildly" elevated hr. That scares me so much :-( has that medicine had any kind of negative effect on you? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 30, 2013 Report Share Posted July 30, 2013 Lejones1 hey!today it was so bad for me I felt like crawling under a rock. I bathed (which usually makes me feel better and calmer and I didn't feel OK until now! All because of talking or reading too much! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 30, 2013 Report Share Posted July 30, 2013 Looney mom Hi there! I'm always thinking about you and your son. I hope your both doing fine. Quote Link to comment Share on other sites More sharing options...
angelloz Posted July 30, 2013 Report Share Posted July 30, 2013 I have had this too...the way you describe it! I can only read a page or two to my granddaughter. I have had a conversation where I had to excuse myself and leave. Felt like I was slipping away. Takes a long time to recover. sometimes it's a bit better. Hang in there! You are not alone! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 30, 2013 Report Share Posted July 30, 2013 Hanice--I think some patients have used SNRIs but from what I understand SSRIs are the drug more commonly used with POTS. It can take time to adjust to an SSRI. Typically several weeks before it starts to be effective and meanwhile there can be side effects. One side effect can be increased anxiety. Another can be autonomic dysfunction--what we already have!--so that can mean symptoms can worsen. My dr warned me this could be the case. I did feel worse initially but he kept encouraging me to stick it out. After several weeks I did begin to feel better. This is not the case for everyone, but for me, an SSRI worked really well, once I got through the side effects. Again, everyone is different--some people have different side effects, some really don't have any. I think one common longer term side effect is weight gain. I did not gain weight but I had trouble losing all my post pregnancy weight (I developed POTS during pregnancy) until I stopped the SSRI.I also took a beta blocker, which slows down hr and lowers blood pressure. I still take a small dose of beta blocker.There are so many treatments used for POTS. What works for one person may not for another. So unfortunately it can be trial and error for you and your doctor to find what will work best for you. But FORTUNATELY there are many treatments that have proven effective. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 30, 2013 Report Share Posted July 30, 2013 MomtogiulianaI don't think I'm brave enough for that! Gosh! I think I'll stick my my Valerian. It kinda helps me. When I don't take it I feel soooooo bad! But I just wish it were stronger! I take b12 and recently started eating meat after four years of being vegan! It hasn't improved squat in me though. My only saver has been Valerian. Quote Link to comment Share on other sites More sharing options...
misstraci Posted July 30, 2013 Report Share Posted July 30, 2013 I get this feeling too and you're right, the only thing I can explain it as is "feels like I'm dying". reading as well as other daily activities. I wasn't vegan but I was vegetarian for 7 years and my GP swore up and down that was the reason I was so sick. He suggested on multiple occasions I start eating meat again and it wasn't until months later that I gave in (because I had tried every otehr option available) It still didn't help. He was wrong, not that I thought he'd be right but I tried anyways. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 30, 2013 Report Share Posted July 30, 2013 Okay I took my bp while talking aloud and figured out why I feel so bad doing it. My bpm went up a little more than 20 bpm! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 30, 2013 Report Share Posted July 30, 2013 Hanice,I believe that a 20 bpm increase while you're talking is going to be considered a normal physiological response by any dr. Same goes for eating. That's why there are certain protocols that need to be followed when checking one's BP/HR. Sitting still and quiet are part of the deal. I had a hard time believing this myself and then I started experimenting with my family members- they don't have POTS, yet their responses were quite similar to mine.Hope this helps.Alex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 30, 2013 Report Share Posted July 30, 2013 (edited) here's an article (its abstract anyway) on that:http://www.ncbi.nlm.nih.gov/pubmed/2463975(this is not to say that you have some underlying heart disease)Alex Edited July 30, 2013 by alex74alex Quote Link to comment Share on other sites More sharing options...
bebe127 Posted July 30, 2013 Report Share Posted July 30, 2013 Hanice,So sorry you are dealing with this. I too have issues with reading aloud, although not to the extreme that you explain. I remember reading on the Dinet site on "Things to Avoid", one of them was singing. I would assume that reading aloud would kinda be the same.I homeschool my kids (now teens) and I still read aloud to them. As I said though, I don't have the same reaction as you do. Mine is more like a winded type feeling, or a feeling like I can't catch my breath. Sometimes it's hard to get the words out, or they come out all jumbled, so I can only read for short periods of time. Luckily my kids are gracious enough to accept this and be patient with me.I hope you find some answers soon {{Hugs}}Bebe Quote Link to comment Share on other sites More sharing options...
corina Posted July 31, 2013 Report Share Posted July 31, 2013 I haven't been able to sing for years, not could I read aloud to my children. Now that I'm on my current combo of meds I can sing again (not that my family likes me to ) I still have issues talking while walking or biking and sometimes singing. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 31, 2013 Report Share Posted July 31, 2013 Thanks for the Hugs bebe! It's good to be able to read. I will still do it but I might have to take breaks in between. :-) Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 31, 2013 Report Share Posted July 31, 2013 here's an article (its abstract anyway) on that:http://www.ncbi.nlm.nih.gov/pubmed/2463975(this is not to say that you have some underlying heart disease)AlexI've done all sorts of ultrasounds on my heart, they all come back perfect. My blood pressure isn't what goes up when reading it's my bpm. Thanks for the scary article! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 31, 2013 Report Share Posted July 31, 2013 I haven't been able to sing for years, not could I read aloud to my children. Now that I'm on my current combo of meds I can sing again (not that my family likes me to ) I still have issues talking while walking or biking and sometimes singing.You're too funny Corina! I'm sure your family missed you singing, they must be secretly thrilled that you're singing again. Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 31, 2013 Report Share Posted July 31, 2013 While I was sick first I couldn't even talk to my friends on the phone, which ******. I'd say this is probably part of your current blip and your tolerance for prolonged talking will probably get better the more you do it (did for me anyway, even if my exercise tolerance didn't improve that much). You might find that you're gradually able to read more each night.I'm also one of those who can't sing much now, which is annoying as singing and songwriting used to be some of my favourite passtimes, and I hate the idea of my voice/piano skills getting out of condition. Not a huge problem in the scheme of things, but it would be nice to be able to sit at the piano and write stuff again without feeling worn out. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 31, 2013 Report Share Posted July 31, 2013 I wasn't trying to scare you with that article that's why I said that I'm not implying you have a heart condition. My point was/is this: it's not abnormal for your HR to increase while you're talking. I spoke to several doctors including a few cardiologists about this issue after I was diagnosed (when I was keeping a very close eye on my vitals) and all of them told me (individually from one another) that it's absolutely normal for the HR to vary with: talking, breathing, eating, drinking, singing etc as these types of activities stimulate your vagus nerve. In some people the change in HR is more drastic than in others.Alex 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.