Platypus Posted July 10, 2021 Report Share Posted July 10, 2021 I'm not sure if this is a flare, or from the procedure, or the anesthesia and I'm curious... Had a upper endoscopy this a.m. with no issues I know of. My anxiety wasn't even too bad... notable bc I am phobic about medical stuff especially being under. I've had one surgery b4 using propofol and had no problems. Normally my issues include tachy episodes, rarely Brady, although generally stable on mestinon. I've been doing well and was able to up my step goal even. I felt fine when I got home... just restless so I did some light cleaning. Big mistake. The lidocaine wore off and I realized I'm actually quite sore. The iv site is very painful as well. But I rested for a while and got ready for bed. Except I keep waking up with a LOW hr. And I'm cold. Normally I could heat Connecticut and parts of Rhode Island. I don't know if this is the start of a flare, normal recovery, POTS normal recovery, or some sort of issue, so I'm curious what others have experienced? Sorry I'm always popping on with questions. I research myself, but so often info is limited or conflicting, and then I know my body doesn't do normal... All the best to everyone! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 10, 2021 Report Share Posted July 10, 2021 Propofol messes me up for about two weeks. I pass out just walking from my bed to the bathroom in the master. It is not far. At the time I was too out of it to check if it was bradycardia or tachycardia triggering it. Quote Link to comment Share on other sites More sharing options...
POTSie78 Posted July 10, 2021 Report Share Posted July 10, 2021 I haven't had any experience with Propofol since being diagnosed with dysautonomia but about 6 months prior I had a HIDA scan and EGD and they ended up taking my gallbladder and then did a rectal surgery all with in the same week. They knocked me out 3 times and I haven't been right since. I continued to get worse until I went to the ER with stroke like symptoms 6 months later and now diagnosed with POTS. I've had many years of POTS like symptoms off and on but nothing that wasn't manageable (as a child my Drs thought i would out grow it.) From what I understand these kinds of procedures can trigger symptoms. I am hoping this is not a flare for you and that whatever it is passes quickly. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 10, 2021 Report Share Posted July 10, 2021 @Platypus - I had severe low BP during surgery from propofol, and they and to give me something to bring it back up. Anesthesia in general can mess with our ANS and unfortunately we never know which way it will go. I would definitely record your HR and BP and get seen if you have symptoms of passing out, chest pain or any other potentially serious symptoms. Otherwise I would treat it like a flare: a lot of REST and fluids. Quote Link to comment Share on other sites More sharing options...
Platypus Posted July 12, 2021 Author Report Share Posted July 12, 2021 Thank you all who replied... it is evening out I think and hope but definitely slower going than I was expecting. I'm so used to a high HR it almost scares me more when it goes low. I'm trying to take it easy but not lie down *all* the time, and be extra good about meds, electrolytes, hydration, and compression. I shouldn't complain. I was just worried about heading into a big flare after doing so well lately. I'm glad it sounds like a normal enough experience Best to all Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted July 12, 2021 Report Share Posted July 12, 2021 I was reading articles on saline iv's and I came across one on health rising and it said the following, "Anesthesia can be dehydrating and most of us are, as Dr. Klimas says, a quart or so low in blood volume." It actually recommends saline iv's after a procedure, etc. It's weird because when I was 19 I was given Brevital and I went into a very bad seizure. What I've garnered from the article is I must have very very low blood volume because saline helps so so much and when I get 4 tubes of blood drawn at lab, I am stuck in bed for days trying to recover. If anyone else needs the article: https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/ Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 12, 2021 Report Share Posted July 12, 2021 @CallieAndToby22 - whenever I have to have a - even minor - surgical procedure requiring anesthesia they bring me in first thing in the morning so I can get one whole liter of fluids prior to the procedure, and they keep me longer afterwards to receive more fluids. Doing so has minimized problems during surgery and shortened fares after. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted July 12, 2021 Report Share Posted July 12, 2021 33 minutes ago, Pistol said: @CallieAndToby22 - whenever I have to have a - even minor - surgical procedure requiring anesthesia they bring me in first thing in the morning so I can get one whole liter of fluids prior to the procedure, and they keep me longer afterwards to receive more fluids. Doing so has minimized problems during surgery and shortened fares after. That's good they do that, I'd never heard of any of this until reading the article last night. @Pistol What causes low blood volume? I think this is a major issue for me but years ago a doctor had me drink the recommended daily water and all I did was go to the bathroom all day long and all night for weeks. I got some saline yesterday than today the little tube dislodged from the vein and my caretaker couldn't hit another vein because they're so tiny and non existent. I'll be glad when I have a. port, if I can get one! Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 12, 2021 Report Share Posted July 12, 2021 @CallieAndToby22 - most common causes for low blood volume is loss of fluid ( diarrhea, vomiting etc, ), actual blood loss or dehydration by not taking enough fluid in. it means that the FLUID in the blood ( plasma ) is too low, therefore the blood is too concentrated. Like chili - if you cook it too long and too much water evaporates it gets thick like glue. In some cases the body then thinks it is bleeding out and constricts all the vessels. In other cases the BP drops because the heart can't easily pump all of that "thicker" blood and the heart pumps faster to compensate. The way to fix or counteract ( and even prevent ) low blood volume is by replenishing fluids - whether by mouth or by IV. When someone pees as much as you naturally they will be loosing a of of fluid. To keep fluid in the blood vessels we also have to take in salt. With me the same happens that happens to you: if I drink tons of fluids along with salt I still pee it out and become hypovolemic. The only way it works for me is by getting IV fluids. Even NACL ( salt water ) infusions go right through me - for long lasting benefits I need Lactated Ringer's solution. LR seems to have a longer lasting effect on my HR and BP. Quote: Difference Between Lactated Ringers and Sodium Chloride | Compare the Difference Between Similar Terms "The key difference between lactated ringers and sodium chloride is that lactated ringers is a solution containing sodium ions, chloride ions, lactate ions, potassium ions and calcium ions whereas sodium chloride is a salt containing sodium ions and chloride ions." There is ample evidence in my medical history that LR helps me much better than NACL, and that oral salt and fluid replacement is ineffective. I am not sure if it is b/c of IC that I was diagnosed with long ago that causes me to urinate too much, or if it is because the high norepinephrine levels cause me to pee too much, or fo it is the combination. I know that whenever i get stressed or excited I urinate enormous amounts, constantly and too much to replace orally. IV LR stops all of that from happening, it controls HR, BP and urination. In a good week I can go up to 3 days between infusions and have minimal symptoms AS LONG AS I STAY WITHIN MY LIMITS. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted July 13, 2021 Report Share Posted July 13, 2021 20 hours ago, Pistol said: @CallieAndToby22 - most common causes for low blood volume is loss of fluid ( diarrhea, vomiting etc, ), actual blood loss or dehydration by not taking enough fluid in. it means that the FLUID in the blood ( plasma ) is too low, therefore the blood is too concentrated. Like chili - if you cook it too long and too much water evaporates it gets thick like glue. In some cases the body then thinks it is bleeding out and constricts all the vessels. In other cases the BP drops because the heart can't easily pump all of that "thicker" blood and the heart pumps faster to compensate. The way to fix or counteract ( and even prevent ) low blood volume is by replenishing fluids - whether by mouth or by IV. When someone pees as much as you naturally they will be loosing a of of fluid. To keep fluid in the blood vessels we also have to take in salt. With me the same happens that happens to you: if I drink tons of fluids along with salt I still pee it out and become hypovolemic. The only way it works for me is by getting IV fluids. Even NACL ( salt water ) infusions go right through me - for long lasting benefits I need Lactated Ringer's solution. LR seems to have a longer lasting effect on my HR and BP. Quote: Difference Between Lactated Ringers and Sodium Chloride | Compare the Difference Between Similar Terms "The key difference between lactated ringers and sodium chloride is that lactated ringers is a solution containing sodium ions, chloride ions, lactate ions, potassium ions and calcium ions whereas sodium chloride is a salt containing sodium ions and chloride ions." There is ample evidence in my medical history that LR helps me much better than NACL, and that oral salt and fluid replacement is ineffective. I am not sure if it is b/c of IC that I was diagnosed with long ago that causes me to urinate too much, or if it is because the high norepinephrine levels cause me to pee too much, or fo it is the combination. I know that whenever i get stressed or excited I urinate enormous amounts, constantly and too much to replace orally. IV LR stops all of that from happening, it controls HR, BP and urination. In a good week I can go up to 3 days between infusions and have minimal symptoms AS LONG AS I STAY WITHIN MY LIMITS. Great explanation, thank you! I think getting regular saline iv's would help me so much. I used to drink the salt tablets all the time and I still use the bathroom so much. I may need to re-visit desmopressin. As a kid I had to urinate so much and I would get in trouble in class and in high school especially so I trained myself not to drink much, not good, but in the end I had no other solution because they would write me up, etc. Quote Link to comment Share on other sites More sharing options...
Platypus Posted July 21, 2021 Author Report Share Posted July 21, 2021 Wow! So much helpful info, I love how much I learn here. I take a lot of notes lol I just wanted to follow up to update that indeed hydration and especially electrolytes helped a lot, and things settled down to a dull roar after a week. Not back to baseline but SO much better than before. My HR is closer to my normal range, and most of the time seems pretty reasonable for what I'm doing, my position, what's going on around me etc. Thanks again! Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 21, 2021 Report Share Posted July 21, 2021 9 hours ago, Platypus said: I just wanted to follow up to update that indeed hydration and especially electrolytes helped a lot, and things settled down to a dull roar after a week. @Platypus - I am glad you found relief! Yes, taking in electrolytes or electrolyte rich fluids is very important, and proven to be effective in most cases. There are several threads on this forum regarding this topic. Some people swear by broth, others use coconut water and many find the best relief with sports drinks ( although the latter contain a lot of sugar as well ). And then there are the electrolyte powder packets you can dissolve in a fluid of your choice. I hope you continue to feel better!!!!! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted July 22, 2021 Report Share Posted July 22, 2021 15 hours ago, Pistol said: @Platypus - I am glad you found relief! Yes, taking in electrolytes or electrolyte rich fluids is very important, and proven to be effective in most cases. There are several threads on this forum regarding this topic. Some people swear by broth, others use coconut water and many find the best relief with sports drinks ( although the latter contain a lot of sugar as well ). And then there are the electrolyte powder packets you can dissolve in a fluid of your choice. I hope you continue to feel better!!!!! The biggest issue I have with electrolyte drinks is the potassium which burns horrifically for IC and the citric acid which is another burner. I have never been able to handle them. I recently got scans done at Mayo Clinic and I had to have a full bladder so I drank 4 bottles of water and some liquid and it helped constipation but my bladder was flared for days just from water, it was making me nauseous as well and I felt like puking and I started early in the morning. My bladder just can't handle much of anything which is so counterintuitive to treating dysatuonomia and low blood volume. Once I was passing out in a Target store and I quickly grabbed a sports drink and it helped a lot, I only drank half, but my bladder was flared for the rest of the week and for me that means urinating every ten - twenty minutes all day and bad at night. Quote Link to comment Share on other sites More sharing options...
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