brethor9 Posted August 20, 2011 Report Share Posted August 20, 2011 Hi GuysSo I just spent another useless 6 hrs in my local emerg for chest pain and shortness of breath I have been having for the last week. The pain is just on my left side and extends into my back and when its really bad into my arm and causes it to go numb. EKG was clear, blood tests were clear, chest x-ray was clear. They also did a d-dimer to rule out chances of a clot I guess. The question I have is the only med I am on is florinef could it be causing these issues? Also I notice the pain gets really bad when I am producing alot of adrenaline could it be causing this??? I just dont know what to do and I am still really scared despite the all clear from emerg (sorry to say but my hospital is not known for having smart drs) some other symptoms I have been having are I am freezing cold and cant get my temp up, pooling like crazy, my vision is blurry. I am on a small dose of florinef 1/4 tab daily. Also in the ER my pressure was all over the place within a span of 2 hrs: 142-154-134-118-122-132-97 that is the top numbers the bottom numbers stayed pretty consistent.....can anybody give me some insight as to what the heck could be going on with my system? also my heart rate which is usually always very high has been tanking below 60....I was to be taking a beta blocker but am now really scared to take it because of all these wild swings.....I am so frustrated and worried...this isnt normal even for me Bren Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 20, 2011 Report Share Posted August 20, 2011 Hi Bren. I always have some amount of chest pain and get short of breathe quite easily these days. The pain covers most of my left chest and goes down my left arm and sometimes sharply up into the veins in my neck when they constrict. It is always worrisome because I am not sure I would be able to dstinguish it from a real heart attack symptom but it is from the POTS. My cardio told me I will always have to use my judgement and go to the ER any time I feel that I am in danger and I should always go to the ER if I have these symptoms immediately followed by passing out to be evaluated. These symptoms didn't get any better or worse for me when I started my Florinef back in March. I never feel bad about calling my docs and checking with them about the heart meds if I notice weird changes so maybe you can call the doc that prescribed the beta blocker Monday morning and tell them what happened before you start it just to be safe. Hope this helps or at least makes you feel not so alone. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted August 20, 2011 Author Report Share Posted August 20, 2011 Thanks Katybug for the quick reply!! It does make me feel better and a little less scared..thats the thing I hate most about this disorder there is always something new and scary cropping up. You fix one thing only to have another start...I really hate being held prisoner by my own body...I wish it would just smarten up and get on with it already Bren Quote Link to comment Share on other sites More sharing options...
abnel Posted August 21, 2011 Report Share Posted August 21, 2011 Hi Bren,I also had to go to the ER twice this past week for severe shortness of breath and a very slow heart rate (in the 60's which is unheard of for me). I felt extremely weak. My blood pressure was also fluctuating.I am also taking Florinef 0.1mg daily but the complication for me is I have had a bacterial gastrointestinal infection for the past 3 weeks causing electrolyte loss.Did they check your potassium levels at the ER? Have you got your bloodwork? If so, check to see what your K and magnesium was.My potassium was 3.1 which is WAY too low for me. My ECG was not normal which they attribute to electrolyte problems. Normal K levels for me are 4.1. Hypokalemia (low potassium) can cause brachycardia or tachycardia, breathing issues, heart rhythm problems, etc. I am now taking huge hits of potassium each day to build up my intra-cellular level of potassium. I am starting to feel better although am still very weak and decoditioned from the 3 week bout of gastro.I know you haven't had gastro, but potassium levels can get very low just by being on Florinef. I always have to supplement anyway. Just because you have a normal ECG with low potassium, doesn't mean potassium isn't the culprit causing the problems. I also had to go to ER earlier in the year because potassium was too low due to the Florinef but had a normal ECG. As soon as I started the potassium within a week my breathing started to get better.If ER didn't test your K levels I would definitely get your family doctor to do it asap to check what's going on with your potassium. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted August 21, 2011 Report Share Posted August 21, 2011 Hi,I used to feel like this all the time before I was put on my beta blocker. I too spent lots of time in the ER. Very scary feeling. I still get it sometimes, but it is usually when I am already tired and need to rest. I know now that when I start feeling like that it is best not to "push through it". I usually just go to bed.Best of luck,Angela Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 22, 2011 Report Share Posted August 22, 2011 Lotusflower...I had no idea that florinef caused depletion of potassium but I have been craving bananas for the last few months which I thought was weird because I used to not be able to eat them because they gave me severe reflux. Then, bam, suddenly no reflux and severe cravings. And, I had started taking florinef. Isn't it funny how our body tells us what we need (sometimes ) ? Thanks for the information. I will tell the doc when I see him next and ask him to check me out too...might as well get ahead of that game and maybe I can avoid the ER.Bren...Are you feeling any better? Quote Link to comment Share on other sites More sharing options...
abnel Posted August 22, 2011 Report Share Posted August 22, 2011 Hi Katybug, I'm glad you've found out about the potassium issue as hopefully you won't have to go through what I've been through. It really irritates me that some doctors who prescribe Florinef don't even bother to check potassium levels when low/high K levels can be life threatening if left untreated.Every time I ask for my K levels to be checked, my family doctor tells me Florinef increases potassium, before I remind him it's the other way around!! Bren I hope you're feeling better now. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted August 23, 2011 Author Report Share Posted August 23, 2011 Hi Katybug and Lotus FlowerThank you so much for your kindness! The chest pain is a little better but I am still having problems with shortness of breath and irregular heart rate and crashing fatigue....basically I just feel very off....hard to describe it but I almost feel worse than what I did before starting the florinef. I am not taking the beta blocker right now because I am scared too...it really messes me up.....I am now experiencing other symptoms also to boot so I am not sure what the heck is wrong. I have been having blurry vision, increased dizziness and head pressure...when I stand I feel like I am being pulled through the floor (weird sensation) also I keep getting sharp shooting pains in the left side of my head, behind my eye and beside my nose which makes me wonder if I dont have an infection going on???? I am at such a loss and so frustrated!!! I have been crying for most of the day...I am so fed up!!! I was supposed to return to my job at the end of August...thinking thats not going to happen....its just not fair...I know there are always worse things but seriously there are some days I think this is no way of life....does it ever get better?? I just cant get out from underneath this thing thanks for listening...I appreciate it so much!Bren Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 23, 2011 Report Share Posted August 23, 2011 Oh my goodness Bren! Don't throw in the towel! They just haven't found the right combination of things to make you feel a bit more normal yet. Maybe you can't tolerate the Florinef. I've seen others here on the forum write that they can't tolerate it. I did well with it and a beta blocker but this past month the doc added a drug for my migraines and now that I'm at the full dose of that it has made my POTS go wild so I have to call him tomorrow and tell him he's got to get me off it and we'll just have to try something else. Its a bit like Eistein meets Frankenstein with us I think. When they had my meds right I was having about 50% good days which was an improvement from about 20% good days without the meds. And we just started. I know its scary and frustrating but don't give up hope. I really believe that if you let it defeat you mentally that's more dangerous than what it can do to you physically. I tried to accept your friend request but something didn't work right. Can you try to resend it? Then we can chat. Quote Link to comment Share on other sites More sharing options...
rhonda Posted August 23, 2011 Report Share Posted August 23, 2011 (edited) Not to sound horrible. But I am not one to know.... I pass out and one one of the specialist thinks that I need to see the psychiatrist. So now I suffer in silence Edited August 24, 2011 by corina Quote Link to comment Share on other sites More sharing options...
momdi Posted August 24, 2011 Report Share Posted August 24, 2011 Hi Bren,I can feel your frustration. Have been to the ER with my son and it's no fun, that's for sure.As a former ER nurse, I just want to say that you can't expect a thorough workup in the ER. I'm not quite sure of how to word this so that it's the most helpful (one time I tried to do that here and got "yelled" at), but I'll give it a try. The ER is there to find anything that is "emergent" - that is, anything that is dangerous right at the time or will become dangerous in the next 24 - 72 hours. They are not there to find the deep cause of anyone's problem. (please don't yell at me people - I'm just trying to explain the system.) That is why they did the d-dimer test because a blood clot can become fatal very quickly. That is also why they advise you to follow up with your own doctor on discharge from the ER - because they don't intend their work up to be a complete one.What does your primary or your cardiologist say about this? Maybe you need to see a pulmonary specialist - they are usually the ICU specialists and are very good at looking at the combination of heart/lung issues. As you know, many of the folks here never get to the bottom of their symptoms, but please let us know if you do.Best of luck, Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 24, 2011 Report Share Posted August 24, 2011 Hi Momdi,Any help understanding and navigating our way through the healthcare system is appreciated! Thanks! Quote Link to comment Share on other sites More sharing options...
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