london Posted July 21, 2011 Report Share Posted July 21, 2011 I've been diagnosed with IST and POTS for 2 years now (I'm 18) and have had symptoms since I was 10. My electrophysiologist said the rapid hormone changes of early puberty was likely to blame. STORY:My main symptom is pre syncope after eating/standing and chest pain that radiates down my left arm and up my jaw (scary!) I was "diagnosed" with reactive hypoglycemia without any testing when I was 10. At 16, I took a turn for the worst. I began fainting and having chest pains. I was in my GP's office at least every week. I was diagnosed with the following: Pleurisy, bronchitis, pneumonia, costrochondritis, anxiety, tested for lupus, and finally they told my mother in private that they thought I wanted attention and was faking it. No one ever noticed that every time my HR was over 120. Finally, my HR was 180 in the doc's office and none of the nurses could believe it. A new GP came in and looked through my records, declaring something was seriously wrong. I was sent to a local cardio, who said me had never seen a higher consistent resting HR in all his time in someone this young. I was 165 baseline and 220 just walking on the tredmill! He sent me for a second opinion at the only electphysiologist that would take minors, who was 150 miles away. There, I was diagnosed with IST and POTS. I was prescribed 2.5mg bisoprolol, which I was breaking through. I now take 5mg bisoprolol and 2.5mg midodrine to raise and level my BP. So, does anyone else here suffer from chronic chest pains? I have had every test in the world and all they can find is that it comes bundled in the POTS package with a bow on top. Also, (TMI) but does anyone else get bloating/gas and increased sex drive on midodrine? How do you manage? Does or can anyone take nitroglycerin for the pain? Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted July 21, 2011 Report Share Posted July 21, 2011 Hi there London and Welcome!!Love your 'signature' line. I have the same problem with Chest Pain but sometimes it is really prevalant in my neck; not so much in my arm or jaw, but I get it there too. My cardiologist says it has something to do with blood pooling?? But I sympathize because sometimes it hurts sooooo bad it brings tears to my eyes, other times it is just annoying. Can I be an idiot and ask what IST refers to? I assume Inapropriate Sinus Tachycardia, but want to be sure??Regarding the sex issue...I am not on Midodrine but it seems that my sex drive comes and goes with my BP & HR. It seems sometimes it is in overdrive and other times in is non-existent; if that makes sense??Take care Quote Link to comment Share on other sites More sharing options...
houswoea Posted July 21, 2011 Report Share Posted July 21, 2011 Me, me! I have chest pain! It used to get so bad that I would just lay on the ground and cry... a lot. When the pots got better, the chest pain did too. I also started taking gabapentin. That helps a bit. And sometimes Ibuprofen helped too, although I used to take so much I got ulcers.No other pain meds helped me, they just made me sicker, but they've helped other members.I still get pain when my HR gets high, but no ER in a while Quote Link to comment Share on other sites More sharing options...
lizababy Posted July 22, 2011 Report Share Posted July 22, 2011 Yes, yes, and yes!For the bloating, I just pop a couple of gas-x. I tend to have some issues with very slow bowels so the gas-x actually works wonders for me. It doesn't speed me up (although the new addition of florinef seems to have) but it does keep the gas at bay.The chest pain seems to be worse when I have my period or I have stress. I try to keep my stress at a minimum in order to keep the chest pain at a minimum. This has been the best way to go about it for me. Part of it is recognizing what triggers the chest pain. I track my bp a lot and keep logs of what is going on in my life as far as symptom changes.I thought the sex drive thing was just part of my turning 30 last month! The first couple weeks on a lower dose of midodrine was having the exact opposite effect. (I started at only twice a day 2.5 mg) However, the more midodrine I take it seems as though my sex drive gets higher and higher. I am up to a total of 25mg a day and climbing. This just seems to be a part of life. Understand though, I was expecting the increase not related to the medicine but simply because a woman usually "peaks" in her early 30s. :-) Quote Link to comment Share on other sites More sharing options...
london Posted July 22, 2011 Author Report Share Posted July 22, 2011 Can I be an idiot and ask what IST refers to? I assume Inapropriate Sinus Tachycardia, but want to be sure??Yep, it's inappropriate sinus tachycardia. I was getting worried that my sex drive was non-existent at 18, but I blamed it on the POTS and pills. Now that I'm on midodrine, it back and my fiance and I were so thankful! It had been putting a serious strain on our relationship.Aside from the chest pain I described, I also get a kind that feels like its direct on the heart. It's very, very painfully sharp and only hurts when I inhale which leads me to have to take very shallow breaths and leaves me short of air. There is no trigger (that I can tell) to these pains. Sometimes they happen with pots and ist attacks, and sometimes they come out of no where. Anyone else?Last thing: I have developed episodes of skipping and missing beats. It leaves me lightheaded, breathless, and my chest hurting. I have discussed this with my doctor and he said as long as my ECHO was normal (it is), then they are harmless and to just pop an extra beta blocker and midodrine. If I call a doctor during an episode of anything, they tell me to call 911. Since this happens pretty often, what should I do? At what point should I go to the ER? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 22, 2011 Report Share Posted July 22, 2011 Hi London,Welcome! I have chest pain that is associated with my POTS that I consider pretty mild yet always present. I have occasionally had the pain that radiates down my left arm and into my jaw. At the time, I was also having some abnormal high BP readings (180's/110's). I went to the ER and my troponin was elevated so I was kept overnight and given nitroglycerin. Oh I loved that drug! I could finally breathe and think clearly (until I stood up and my BP plummeted )! My heart looks totally normal and my EKG is always fine (just fast when standing, but usually only 120's at worst unlike your super-high heartrates). My stress test and echo was normal.I found that taking carvedilol really helped with my chest pain. I only took 6.25mg twice a day. It's an alpha and beta blocker. However, recently my cardiologist put me on paxil 25mg twice a day. I was able to wean off of the carvedilol and have just a slight return of the chest pain. Also, I have more energy than I did while on the carvedilol.My cardiologist said that my heart was being strained from the increase in BP which caused the high troponin levels and increased chest pain. I'm wondering if your super high heartrates aren't straining your heart a bit? I'm glad you're on a beta blocker, but it sounds like you may benefit from something in addition. Nitro will probably just increase your syncopal sensations unfortunately and your heartrate. The SSRI did help me, but it took over a month to get over the side effects. Also, carvedilol might be helpful, although it can drop your BP which wouldn't help you much! Quote Link to comment Share on other sites More sharing options...
london Posted July 23, 2011 Author Report Share Posted July 23, 2011 My doctor did mention heart rate may play a role by starving my heart of oxygen, thus creating heart attack like pains. BUT, he also said that chest pain is common in both in IST and POTS, so he pretty much told me that he had no idea, just theories. Say if I have a flu, or sinus infection, or anything along those lines and I can't get my pulse down, should I go the ER? Or should I just pop a beta blocker and wait it out? At what heart rate should I be worried? Also, what about the skipping/extra beats with the lightheadness? When I call my doctor, they tell me to go the ER asap, but my electrophysiologist says it's harmless. What "guidelines" do you guys use for ER trips, since the whole "lightedheadedness, dizziness, chest pains, short of breath, heart rate" thing is a daily happening? What are our "special" guidelines? THANK YOU! Finding this site has truly been one of the best things that has happened to me in these 2 years. You guys help me so much and I am happy to help any of you in any way I can Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 23, 2011 Report Share Posted July 23, 2011 I think that if you experience a new symptom or a distressing increase in your current symptoms, you should ask your doctor about it (even if it's just a phone call). It's a good idea when you see your doctor to ask how they would like you to try to manage your most distressing symptoms. Most dr's offices have someone on-call around the clock. That way, if you're experiencing distressing symptoms and the doctor tells you to go to the ER, they can call ahead and let the hospital know that you're coming and you'll be treated quicker and your symptoms will be taken more seriously. 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.