Jessica_ Posted June 18, 2018 Report Share Posted June 18, 2018 So i crashed Jan 2017. My “surges” started a few months later and got so bad I had one almost every single night for almost 6 months. Then after staring my propranolol they weren’t as bad. Now I’m off the propranolol and I haven’t had a surge in almost 4 months *knock on wood* My question is have your surges gotten better with time or disappeared? Or do they linger on and just go away from time to time ? Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 18, 2018 Report Share Posted June 18, 2018 M surges are a lot better due to my meds and the fact that I no longer work and this anables me to pay attention to my symptoms and stop to rest as soon as I feel asurge coming on. Of course that means that I rarely leave the house because when out I cannot just retreat when a surge is coming on. But -y.es in my case I am able to minimize the flares ( but they are still waiting to happen every day ). Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted June 19, 2018 Report Share Posted June 19, 2018 My surges have gone through phases. Things that have made them 1000x worse: birth control pills, 3rd trimester of pregnancy Other things that made them worse: dehydration (IVs help ALOT), low ferritin(getting iron up helped) While they are bad going low carb/low sugar helps. The heat makes everything worse. Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted June 19, 2018 Report Share Posted June 19, 2018 Also wanted to add... I went through a period of a little over a year where I didn't have any "attacks" as I call them. At that point I was on a good schedule with my IVs and my ferritin (iron stores) were good. They were horrific in the 3rd trimester of my pregnancy but went away after I delivered the baby (knock on wood)... I am hoping things will continue to stabilize for a bit for me. I didn't have a problem during labor either. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted June 19, 2018 Author Report Share Posted June 19, 2018 Thank you @Bluebonnet08 my iron levels tend to be low as well. I’m keeping my fingers crossed that my surges are gone for good, I hope yours are too! Quote Link to comment Share on other sites More sharing options...
Scout Posted June 21, 2018 Report Share Posted June 21, 2018 @Jessica_ I feel your pain with the surges. I seem to have periods of not having them, and then suddenly, I'll have them day after day. It is so draining, and frightening. Just this past week, I seem to have had a lot. I know stress makes them worse for sure, and dehydration / imbalance in electrolytes. I hope yours stay away! Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted June 21, 2018 Author Report Share Posted June 21, 2018 1 hour ago, Scout said: @Jessica_ I feel your pain with the surges. I seem to have periods of not having them, and then suddenly, I'll have them day after day. It is so draining, and frightening. Just this past week, I seem to have had a lot. I know stress makes them worse for sure, and dehydration / imbalance in electrolytes. I hope yours stay away! I’m sorry you have had a bad week these surges plague me and are definitely my worst symptom in all of this. They cause me such anxiety because I never know when one will come on so it makes me terrified to go anywhere. Just that feeling of doom and feeling like you are literally going to die is terrifying. I pray they stay away and also that yours go away and stay away too! Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted September 13, 2018 Author Report Share Posted September 13, 2018 Welp a lil update; I have had a surge in the middle of the night for the past 2 nights 😢 I was very hopeful that they were gone for good. The “attacks” or “surges” are definitely my WORST symptom. I am sad they are back. The hard part is not knowing if they will keep happening or when they will happen. I’m hoping tonight I can just sleep and not be woken up by the racing heart and fear feeling. Praying for all of us. We need a cure! Quote Link to comment Share on other sites More sharing options...
Pippie Posted September 13, 2018 Report Share Posted September 13, 2018 Yes, this happens to me to. I get woken up by this feeling like I’m hot and about to faint, then the heart palpitations kick in and the heart will go as high as 160. I usually have to sit up and start taking deep breaths. My husband gets me a ice pack to put behind my neck and on my face and I drink ice water. I’ll also feel my stomach churning. I feel you. It’s the most scariest feeling in the world. Your stuck between calling 911 or letting it ride itself out. I pray that one day we miraculously recover from this Quote Link to comment Share on other sites More sharing options...
bizbiz Posted September 16, 2018 Report Share Posted September 16, 2018 Yes, my surges come and go to coincide with my flare ups. I am currently going through a small flare-up of symptoms at the moment, but have not experienced a surge. I can go for years without having one if I am having a good run. I too, have also said to my husband that it feels like you are about to die. They are so frightening. And always leave me feeling cold and drained. I commiserate with you - they are definitely not fun to go through. Quote Link to comment Share on other sites More sharing options...
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