Steph89 Posted February 17, 2017 Report Share Posted February 17, 2017 After combing through this fantastic site I figured it was time to start interacting . I'm almost 28 and was officially diagnosed with IST last summer after years of on-again-off-again symptoms and testing. I now have a wonderful cardiologist who was the first doc to tell me right off the bat that it's not all in my head, caused by anxiety, or my ADD meds like every other doc had told me. When I was around 13 or 14 I started getting these awful, pounding headaches that increased to several times a week (made worse by standing). I would also feel really weak in the legs and head, especially on standing. It's now second nature to stand up, walk a few steps, then stop and bend at the waist until the tunnel vision goes away. Other symptoms include low bp (~90/60 without meds), resting hr 90-100, inability to regulate my temp (I can go from shaking cold to melting in a snap), palpitations, sob, and terrible sleep. After getting diagnosed, I was put on propranolol and that's helped my hr but I still get palpitations and side effects of mild to extreme fatigue and really low bp (~65/45). I've upped my salt and water intake which helps some and I prop my feet up at my desk job. My cardiologist tried switching me to Corlanor/Ivabradine but it made me feel so sick and gave me a nasty headache so back to the propranolol it is. I just had my first appointment with an EP this morning and, again, he was wonderful! He agreed with IST diagnosis and is very against ablation for it. He wants me to do a TTT and start playing around with different meds to find one that works better. The frustrating thing I guess is learning that I really do have limitations (not laziness), how to live with them, and that it's a lifelong condition-symptom management only. I don't have a husband/SO and no kids so aside from parents about 20 min away, I'm on my own which gets a little depressing sometimes (thank God for the internet). Are there any tips anyone can give that have helped keep spirits up? It's kind of a waiting game right now for me and I really don't have much energy at all. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 17, 2017 Report Share Posted February 17, 2017 Welcome to the forum. Glad you found us. If you haven't seen this resource (sounds like you may have) this might be helpful: http://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/ When I was very sick I found that working on meditation and breathing exercises helped. I also found that getting fresh air when possible was helpful--even if it was just sitting outside in my yard. Difficult this time of year depending on where you live. Being indoors in the same space day after day is really hard. I recognize personally a lot of your symptoms. Hopefully with a better treatment plan you will start to feel better soon. Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 17, 2017 Report Share Posted February 17, 2017 Welcome and thank you for sharing your story. I can really relate to the temperature swings. I often ask someone else if it is actually really hot, ( or cold ), in the house because it is probably just me. When I get severely chilled I have to take a hot shower to bring my body back to normal, I just can't warm up any other way. If I'm melting, I hold an ice pack against my body. When at my worst I watch a favorite mindless TV show, meditate, bird watch out my window. Some days it is just plain hard to accept. I hope youfind the medication that helps you the best. Having a doctor that really listens is half the battle :). Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 17, 2017 Report Share Posted February 17, 2017 Your story kind of sounds like mine and I'm also the same age, and I'm also on proranolol but I have hyper pots. I get very tired from propranolol and I honestly NEED about 10 hours a day to function. It's not me being lazy, but I genuinely need 10 hours to be able to function or else I'm just too tired during the day to do anything. I've struggled with depression for a long time because of this disease and was hospitalized once for issues related to suicide so I really know how it feels to be down because of the life adjustment. Accepting your limitations will be the best thing for you. My life revolves around my disease. I've even started listening to music that helps calm me down. I don't do doctor apts in the morning, I don't do anything late, no caffeine, I changed my diet to vegan and gluten free and I feel way better. I would look for ways you can improve your health in general as well. I take vitamins, and eat protein shakes and try my hardest to eat well, get enough rest and try not to get stressed. It's so simple but it really has helped. This site also helps, knowing you're not alone is bittersweet. But we all understand. I had to made adjustments at my job and at school too but it's best to always be honest about your limitations with employers and anyone really. I turned to art though. When I paint, I don't think at all. Literally at all. It's the most soothing thing, I just paint for hours with some music on and I forget all my issues. I do have leg pooling so I have to be carefu lwith that but I drink a ton of water and that seems to help. Really I would suggest taking care of yourself in every possible way you can. Dont' feel bad for feeling tired, it's just part of it, especially after you take propranolol. Don't feel bad for not having the energy to do things, it happens and you would probably feel worse if you forced yourself. Also try and get a support system, I have my dad who is my rock, if you don't have anyone maybe look for a friend on here. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 18, 2017 Report Share Posted February 18, 2017 Welcome! What a breath of fresh air to hear about a positive experience with your cardiologist... This has you a step ahead of the game so to speak. I've been dealing with severe dysautonomia now for over 3 years. My favorite quote at the moment.... Do the best you can, with what you have, where you are. Quote Link to comment Share on other sites More sharing options...
Steph89 Posted February 18, 2017 Author Report Share Posted February 18, 2017 2 hours ago, kalamazoo said: Your story kind of sounds like mine and I'm also the same age, and I'm also on proranolol but I have hyper pots. I get very tired from propranolol and I honestly NEED about 10 hours a day to function. It's not me being lazy, but I genuinely need 10 hours to be able to function or else I'm just too tired during the day to do anything. I've struggled with depression for a long time because of this disease and was hospitalized once for issues related to suicide so I really know how it feels to be down because of the life adjustment. Accepting your limitations will be the best thing for you. My life revolves around my disease. I've even started listening to music that helps calm me down. I don't do doctor apts in the morning, I don't do anything late, no caffeine, I changed my diet to vegan and gluten free and I feel way better. I would look for ways you can improve your health in general as well. I take vitamins, and eat protein shakes and try my hardest to eat well, get enough rest and try not to get stressed. It's so simple but it really has helped. This site also helps, knowing you're not alone is bittersweet. But we all understand. I had to made adjustments at my job and at school too but it's best to always be honest about your limitations with employers and anyone really. I turned to art though. When I paint, I don't think at all. Literally at all. It's the most soothing thing, I just paint for hours with some music on and I forget all my issues. I do have leg pooling so I have to be carefu lwith that but I drink a ton of water and that seems to help. Really I would suggest taking care of yourself in every possible way you can. Dont' feel bad for feeling tired, it's just part of it, especially after you take propranolol. Don't feel bad for not having the energy to do things, it happens and you would probably feel worse if you forced yourself. Also try and get a support system, I have my dad who is my rock, if you don't have anyone maybe look for a friend on here. This was so calming to read...I think I need to make daily care more of a priority? Like you said, it's simple adjustments I just have to actually do it. I think you're the first person who's told me not to feel bad for being tired so again, thank you Quote Link to comment Share on other sites More sharing options...
Steph89 Posted February 18, 2017 Author Report Share Posted February 18, 2017 3 hours ago, angelloz said: Welcome and thank you for sharing your story. I can really relate to the temperature swings. I often ask someone else if it is actually really hot, ( or cold ), in the house because it is probably just me. When I get severely chilled I have to take a hot shower to bring my body back to normal, I just can't warm up any other way. If I'm melting, I hold an ice pack against my body. When at my worst I watch a favorite mindless TV show, meditate, bird watch out my window. Some days it is just plain hard to accept. I hope youfind the medication that helps you the best. Having a doctor that really listens is half the battle :). Can I ask if you work and if so, how do you handle the temp changes there? My (post menopausal) coworkers are forever laughing at me for turning around and asking if anyone else thinks it's "disgustingly hot in here or just me" several times a day! I'm curious about meditation...Having ADD, the idea of it has always mystified me a little. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 18, 2017 Report Share Posted February 18, 2017 Really, put yourself first. It'll help you so much. Also I have the temperature issues as well, if I get hot with my entire body I basically can't function, my HR sky rockets, I turn bright red and I get severe swelling in both my hands and feel. I have erythromelelgia because of this. Was one of my first symptoms. I actually bring a small fan with me around, and I always bring cold water, as cold as I can get it, I usually leave it half frozen from the night before. I don't wear a lot of layers, nor anything on my head. I actually live in alaska so even when it's extremely cold -10, I still don't really bundle up because the cold is nicer to me. I also at one point looked into this vest you could wear that basically is a bunch of ice packs to keep you cool. It was kind of an extreme thing but at one point I was desperate. I don't really eat spicy foods, or drink hot drinks. A flare from heat with my body can be set off with anything. But asking your job for a fan or stool whatever should be perfectly okay. It's considered a reasonable accommodation and them denying you is illegal.n Quote Link to comment Share on other sites More sharing options...
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