gjensen Posted August 8, 2014 Report Share Posted August 8, 2014 Of rough terrain. That is the most I have been able to do since getting sick. Progress. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted August 8, 2014 Report Share Posted August 8, 2014 Yay. Did you build up to that? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 8, 2014 Report Share Posted August 8, 2014 CONGRATULATIONS! Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 8, 2014 Author Report Share Posted August 8, 2014 BigSky, yes and no. I have no formal exercise plan. I just do what I can out in the yard everyday. I push it a little bit. It is up and down, but I have been able to do more. Thank you Sue. The biggest part of the accomplishment was that I was able to walk off of the trail with my youngest son. He likes to do that with is Dad, and that was the first (since getting sick). We discuss the plants and animals that we see. It tickled me to see him bright eyed and enthusiastic. I hope to do that again with him soon, more often, and for a little longer. Knock on wood, I am starting to think that if I could get a grip on the vasospasms, I will have come along ways. This illness is so bizarre. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted August 8, 2014 Report Share Posted August 8, 2014 Ironic that you posted today. I started having chest pain and this need to cough sensation... Is this what you experience with vasospasms? Heart rate was super low and I couldn't make sense of it all. I love spending time with the kids for that reason you posted..I took my little guy fishing a few weeks ago made my day... Even though we didn't catch anything. Just time well spent Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 8, 2014 Author Report Share Posted August 8, 2014 BigSky, I get so much chest pain (and so many different kinds) that I do not know what to attribute it all to. No one can really say what all of it is.I suspect that I frequently get some degree of spasms that do not get serious, but are still painful. I have scarred my chest with rice socks etc. trying to get a grip on the pain. It has been bad. What I am certain are coronary vasospasms, feel like a heart attack is described. Often it starts with a burning pressure feeling in the lower chest that progresses to a very painful pressure sensation over my entire chest. It radiates into my arm and face. Usually when they get bad, it triggers a run of SVTs. Sometimes my heart hurts first and then it progresses. I get very dizzy, and everything goes black on me. Something about them is that there are particular triggers for me. Too much exertion can trigger them, after I lay down. Waking up is a trigger. Every time. It is only a matter of how bad it might get. If I take a nap, then I will go through it again. The ones that trouble me the most is ones that I get late at night before I go to sleep. I can get them as I go to sleep. Sometimes I can feel my aorta throbbing first. Keep in mind, I cannot positively say that all I experience is spasms. Now that Mayo has decided that I have the problem, everyone is going to blame them. I say this because I suspect more is going on. I have never had a need to cough during them, or a low heart rate. My heart rate usually picks up and if I get a run of SVTs, it can get to 180 etc. Has this happened to you more than once? Have you talked to a doctor about it? Vasospasms can be hard to get diagnosed. Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 8, 2014 Author Report Share Posted August 8, 2014 I meant to add that the moments e can spend with our kids seam especially important now. For them and us. I know it did me a lot of good. Quote Link to comment Share on other sites More sharing options...
corina Posted August 8, 2014 Report Share Posted August 8, 2014 Happy for you gjensen! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 8, 2014 Report Share Posted August 8, 2014 Congratulations Gjenson!Quite an accomplishment! Wishing you continued improvement in the near future Sarah Quote Link to comment Share on other sites More sharing options...
Raisin Posted August 8, 2014 Report Share Posted August 8, 2014 Sooooooooo glad to hear it! Glad you are doing well. Quote Link to comment Share on other sites More sharing options...
writerlymom Posted August 8, 2014 Report Share Posted August 8, 2014 That is great gjensen!!! Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 8, 2014 Author Report Share Posted August 8, 2014 Thank you for the support. I really hate to say anything. Everyone around here knows how that goes. I do think my OI is better though. Just these other things to sort out at the moment. The OI is my smallest concern at the moment. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted August 8, 2014 Report Share Posted August 8, 2014 Congratulations! I bet your little one was so happy. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 11, 2014 Report Share Posted August 11, 2014 Hi there!How are the walks going? Bringing gatoraid with you along I hope Was just checking in to see how your progress is going Quote Link to comment Share on other sites More sharing options...
Goschi Posted August 11, 2014 Report Share Posted August 11, 2014 It's so wonderful to read this, gjensen!! Congratulations!!However, continue to keep searching for the "real thing(s)" that cause your condition!! I wish you best luck for this struggle!! Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 11, 2014 Author Report Share Posted August 11, 2014 Thank you Sarah and Goschi. Sarah, I was down the next day, and became pretty depressed about it. The OI did not keep me down, it was the pain. Maybe my worst day concerning the pain. I can now be truly sympathetic to those that suffer with chronic pain. It literally got in my head that day. Eventually the chest pain got intense enough that I went to the ER. I had dosed up on extra diltiazam on the way there, and that day. I have literally cooked my entire chest trying to manage the pain with rice socks, LOL. It is definitely scarred. The doctor felt that I could be having some ischemia (EKG), and wanted to do nitro. I did not want to nitro, and I did not want anymore diltiazam (too much drops my HR too low). He hesitantly offered Ativan in an IV. 2mg. Within 5 minutes I had complete relief. I was surprised but relieved. So the good in it is that it confirmed this drug could help. Yesterday, when the diltiazam was not enough, I took 1mg of Ativan and it worked. I tried Ativan before diltiazam and it was not enough. The diltiazam alone helped, but was not enough on the bad days. It cut down the worse spells and the associated SVTs, but not settle all of the pain. I could not tolerate the next highest dose. 240mg per day made my brain fog intolerable. I tolerate 180mg ok, and have some quick acting for the break through spells. The point in the ramble is that I may have found a clue in what is behind the spasms, and a way to manage them. Maybe. I am trying to figure this out. I think I am starting to understand the root of these spasms. The OI has certainly gotten better. For now. This illness is constantly evolving. Weird stuff that we deal with. Goschi, I am not done looking for a cause. I was, but I am not anymore. I was looking into local immunologists yesterday. I am not sure where I might go next. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 11, 2014 Report Share Posted August 11, 2014 Hang in there! When Tyler was able to exercise, he was only able to do it M-W-F and rest on weekends. At least you are beginning to figure some things out with medication. Keep looking for your cause. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 11, 2014 Report Share Posted August 11, 2014 Gjenson,Don't let this get you down! That was quite the accomplishment walking that distance even if it did set you back. I can't even walk to the mailbox some days! Give yourself the credit that you deserve 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.