jklass44 Posted October 7, 2018 Report Share Posted October 7, 2018 Hi everyone. So I'm sure the majority of us are familiar with the vicious cycle of symptoms that we experience on a daily/weekly/monthly basis, but I'm curious to know something... When your symptoms appear or you have surges, does everything happen all at once or does it alternate? For example, for myself, I'll have a week or so of headaches, migraines, dizziness, etc., then the following week will be the GI issues such as abdominal pain, bloating, diarrhea and then the next week or two or whatever will be cardiac symptoms like severe tachycardia, chest pains, shortness of breath, palps, etc... It's so frustrating having everything jump around like that! I feel like I can't plan my life accordingly. The week of GI issues (whenever that happens to be) I can usually still go out and see friends/family or do my grocery shopping, errands and such, however the other symptoms I'm always so fatigued and can barely get out of bed. Maybe I just experience my symptoms this way because they're not very well controlled yet? I have an appointment with my cardio later this week because I've been so hypertensive lately (160/110 give or take) so we'll see what comes of that I suppose. Anyways, I was just wondering what other people's cycles look like. Have a great weekend Quote Link to comment Share on other sites More sharing options...
Pippie Posted October 7, 2018 Report Share Posted October 7, 2018 Mine fluctuate between one week of waking up with sinus tachycardia feeling tired week. Then I have patterns of severe GI issues sometimes with or without heart palpitations. I’ve lose half of my hair in the last year and I feel like I’m not absorbing nutrients. Latest new symptoms have been dull achy feet and legs as if I’ve been on my feet all day, but the pain starts an hour after I wake up. I’m pretty confined to my house lately as my energy is very low. I’m only 42 and I feel like crap. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 7, 2018 Report Share Posted October 7, 2018 My cycles vary. It could be each day is different, or sometimes I will have dizziness for an extended period of time with my other symptoms cycling. I try not to plan anything that can't be changed easily because my body can vary so much. I feel my POTS is pretty well controlled with my medication combo but I still have additional symptoms that can be bothersome. Good luck at your doctor's appt. Quote Link to comment Share on other sites More sharing options...
voxel Posted October 7, 2018 Report Share Posted October 7, 2018 My GI issues were because of an inflammed gallbladder that was removed (no gallstones, etc.). Because of the non-stop bile acid from the liver I was suffering from nutrient malabsorption and diarrhea issues that would cause crazy electrolyte balances and heart palpitations and weird cramps. Most of the latter were fixed with Welchol (Cholestyramine did not agree with my system) and any HR issues I have are due to dysautonomia (I can sort of predict when they occur now). Definitely find out why you have GI issues... maybe food sensitivity? Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 8, 2018 Report Share Posted October 8, 2018 @jklass44 - yes, I am similar to you. I start with just feeling "off", then progress to sleeping difficulties, irritability, palpitations .. then diarrhea and heartburn, nausea … then I wake up in the mornings with chest pain radiating up my left neck and - without fail - when I check my BP is always above 140/90 with those symptoms. If I try to treat it with bed rest I end up not being able to get out of bed without passing out. If I ignore it or exercise I end up having seizures from high BP. There are no meds that help once I get this bad - the only treatment is 16 - 24 hours of IV fluids at 125 ml/hr. This rate seems to re-establish a normal pressure in the circulatory system that stops the faulty ANS signals that either dilate or constrict my blood vessels. This has been proven in my medical record - they gave me IV boluses one after the other in the ER and there was no effect. As soon as they started to run the IV at 125 or even 150 ml/hr my symptoms subsided, BP normalized ( from 150/100 to 100/60 ), palpitations disappeared and I am able to ambulate without any orthostatic symptoms. Even nausea, diarrhea and constant urination go away. I literally go from being a very ill person to someone very well. I always say that I "go into the hospital crawling and come out skipping". The people that witness this change are always amazed b/c I look extremely ill when I get that bad but turn into the best version of myself after the fluids. Quote Link to comment Share on other sites More sharing options...
voxel Posted October 8, 2018 Report Share Posted October 8, 2018 23 minutes ago, Pistol said: @jklass44 - yes, I am similar to you. I start with just feeling "off", then progress to sleeping difficulties, irritability, palpitations .. then diarrhea and heartburn, nausea … then I wake up in the mornings with chest pain radiating up my left neck and - without fail - when I check my BP is always above 140/90 with those symptoms. If I try to treat it with bed rest I end up not being able to get out of bed without passing out. If I ignore it or exercise I end up having seizures from high BP. There are no meds that help once I get this bad - the only treatment is 16 - 24 hours of IV fluids at 125 ml/hr. This rate seems to re-establish a normal pressure in the circulatory system that stops the faulty ANS signals that either dilate or constrict my blood vessels. This has been proven in my medical record - they gave me IV boluses one after the other in the ER and there was no effect. As soon as they started to run the IV at 125 or even 150 ml/hr my symptoms subsided, BP normalized ( from 150/100 to 100/60 ), palpitations disappeared and I am able to ambulate without any orthostatic symptoms. Even nausea, diarrhea and constant urination go away. I literally go from being a very ill person to someone very well. I always say that I "go into the hospital crawling and come out skipping". The people that witness this change are always amazed b/c I look extremely ill when I get that bad but turn into the best version of myself after the fluids. Wow... so your BP rises and nothing you can do immediately to lower it? Do meds temporarily lower your BP but then it rises again? Thankfully for me drinking a ton of water and triggering my kidneys to activate (and urinating) drops my BP within a few minutes. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted October 8, 2018 Author Report Share Posted October 8, 2018 @voxel I’ve also suspected some sort of gallbladder thing because I also get pain in my upper right side under my rib cage. But yes I will have the GI issue checked out sooner rather than later. @Pistol I’m also curious about your blood pressure! My body just doesn’t react to the meds that should essentially lower it. Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 8, 2018 Report Share Posted October 8, 2018 @voxel, @jklass44 - the meds I take work on a day to day basis and I am usually well controlled. But when I'm in a flare the BP goes up and even extra BB does nothing. Once I got IV BB to bring it down and it worked only for 2 hours before it came back up. jklass - have you tried calcium channel blocker for your BP? If you have excessive vaso-constriction this helps for that. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted October 8, 2018 Author Report Share Posted October 8, 2018 5 hours ago, Pistol said: @voxel, @jklass44 - the meds I take work on a day to day basis and I am usually well controlled. But when I'm in a flare the BP goes up and even extra BB does nothing. Once I got IV BB to bring it down and it worked only for 2 hours before it came back up. jklass - have you tried calcium channel blocker for your BP? If you have excessive vaso-constriction this helps for that. Glad to hear it’s relatively well controlled then and that you have access to IV if need be! I only tried diltiazem but had a bad reaction to it so we never tried any others. It’s a game of trial and error that’s for sure... Quote Link to comment Share on other sites More sharing options...
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