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Julyrose

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  1. So, update: ‘I ended up going to the ER for the ridiculous tachycardia because my heartrate even laying down was vastly higher than my normal, and unfortunately I had an infection in my port catheter. I was hospitalized for a week and the port was removed. I am home with a pic on IV antibiotics, and my heartrate is back to my normal. So, sometimes, an increase in hr can be a flare, but sometimes, there can be another cause, like an underlying infection. I am SO glad I trusted my gut that something was wrong and got it checked out. I use the port for fluids for the pots as well as for TPN for gastrogaresis. Though they are lifesaving for me, it comes with serious risks. I still hold hope that I can eventually exist without infusions.
  2. Yogini: good point. But yes, my cardiologist has many POTS patients and I feel confident in his assessment . My tachycardia is entirely positional, resolving fully when I lay down. But of course, things can change, so good to be aware of any changes in pattern and bring them to your doctors.
  3. Very interesting about the pain radiating to the armpit. I mainly get a squeezing flip floppy feeling in my heart, and then painful downward pressure emanating from my diaphragm I believe. this is exclusively when standing so I believe gravity is a factor. This crushing sense of downward pressure and fluttering are intolerable. This morning, after if fluids (in my TPN), my standing rate is only in the 140’s, and I do not have any discomfort, just eventually feel fatigued and a bit foggy headed with prolonged standing. I will say, my cardiologist and I are confident that it is just POTS at play, but he tells me I am on the extreme end of severity, my heartrate goes much higher than the vast majority of his other POTS patients. I’m just an over achiever I guess.
  4. It only happens when standing, and not very frequently, but when my heartrate is above 160, (particularly above 175) it just feels like a fluttery pounding with a ton of chest pressure. it resolves completely after I lie flat for a while, but man! it is soooo uncomfortable. it is self limiting, because at that point, if I remain standing for more than 5 minutes of so, I faint. just wondering if anyone else feels “pain” at the upper end of their heartrate range?
  5. could you have been dehydrated? Were they positional (either for onset, or for relief?) Daily (like, as quickly as a week or two) use of pain relievers can cause rebound or medication overuse headaches. What did neuro say/do? Did you find relief? I have several compounding factors for headache, but it seems the biggest factor for change in characture or frequency for me, is my level of hydration, either oral or by IV.
  6. I want anyone reading this thread to understand that ports have serious risks. And getting fluids is not the answer for everyone. I was out of options, and dangerously unstable. So for me, the benefits outweigh the risks, but I feel increadibly vulnerable now all the time with this in me. I spent several hours in the ER yesterday because my port incision site has become infected. The infection is very superficial, but is impairing wound healing. I am on oral antibiotics and watching it closely. While in the er, with the use of ultrasound, after 4 sticks, they got a peripheral IV in, and gave me 1.5 liters of saline. This did help, but I am so dry at this point (high creatinine level) I needed more or more slowly infused to really feel better. This is my much improved vitals after saline. clearly, I have a ways to go yet.
  7. The order is in and the supplies have been delivered. We are going to start with 1liter 2x weekly, and if it dosent cause pressure headaches, we can increase. I am so excited that relief is at hand!
  8. thanks Pistol. Its so good to hear how it has helped you and how often you run them. I am going to call cardio tomorrow and ask if we can try every other day to start, and then adjust (hopefully down) from there.
  9. yogini: I have a vp shunt for Idiopathic Intracranial Hypertension that is only partially functional. As a result, we cannot use volume boosting medications. We will be careful to moniter for headache increase as we up the saline, but I am so dry, we have a ways to go before we hit a fluid load high enough to increase the pressure. In addition, volume increasing meds still depend on intake. I cannot ingest even a normal ammount of fluids, let alone enough to compensate for the venous pooling in my legs when upright. I am...complicated. Though I know my set of comorbidities are not UN common among EDS. Pistol: I was started on 1 liter saline weekly in June of last year. We had hoped to just do it temporarily to get me stable and while I was titrating up on Mestinon. Unfortunately the gastroparesis did not calm down and by fall, we upped the volume to 1.5 liters weekly. But my vitals just got worse, excluding the relief for a day or two after infusion, when before it had helped for 4ish days. Then we stopped being able to get peripheral access, partially from the EDS, but partly from how chronically dehydrated I am. Neuro stopped the saline, but refered me to a new cardiologist hoping that they would have some other ideas about meds instead. Cardio determined that until we get a handle on the dehydration, the meds are never going to be able to compensate, so he ordered the port. My labs yesterday show elevated hematocrit and hemoglobin indicating dehydration. I wonder if I need daily infusions for a few weeks to catch up and get stable, then decrease to 3-4 times a week.
  10. I had the port placed today. I am quite sore and bruised, but otherwise all seems well. My cardiologist is confused about how to write the hydration orders and for what frequency, so as yet, there really isnt a plan in place, but I do believe that this is a big and important first step towards consistant hydration, and better POTS control.
  11. I am scheduled for port placement on Friday with interventional radiology. I am terrified, but also filled with hope. I'll update once I'm back home and settled, assuming they are successful. I am so dry my lips are cracked and bleeding.
  12. Those sound like my mast cell attacks. I get chills like I have a fever, feel clammy, my bp plummets, and I generally feel like I've been struck by a virus. Along with this is a feeling of anxiety or doom, abdominal cramping, and lots of nausea and vommiting. I used to be wiped out for a few days after, and or end up in the ER needing fluids. Now, I have been instructed to take liquid benadryl immediately when I notice signs I even think are a reaction, and this often cuts off the reaction at the pass. In my case, I have a lot of mast cells in my gut, so will sometimes they get triggered (by a food, temperature, or even significant stress) and so I essentially have an allergic reaction. Mast cells release many many mediators, not the least of which is histamine, many of which can wreak havock on blood pressure, heartrate, vein dillation, ect. This is not to say that your attacks are the same, but it may be worth investigating Mast Cell Activation Syndrome, and or seeinv if an antihistamine helps in one of these times. For me, my POTS is WAY less stable if my mast cells are being extra trigger happy. or look into abdominal migraines. good luck in the search! be well
  13. for me, I noticed benefits at 60mg. Just be close to a bathroom for 20 minutes after you eat! Though, that calmed down after 3 months or so too.
  14. 90mg three times daily, or sometimes 60mg 4 times daily. Took 6 weeks to work up to the 60mg dose. For me helps a lot of things a little bit. quicker bp adjustment when first rising to standing, not quite as extreem of hr spikes, less fatigue.
  15. Thank you everyone for taking the time to reply. As you all know, this can be increadibly isolating, but this community helps remind me that I am in no way alone in this fight. The order for the port is in, just awaiting insurance clearance before I can schedule placement. I had an endoscopy yesterday in which reminants of food I had eaton 18 hours before were still present, so more evidence of severe gastroparesis showing why I have immense trouble hydrating orally. My Gastroenterologist is also in full support of the port. She is increadible, and I completely trust her, and she feels my nausea (and pots) being so nuts is a direct result of being severely chronically dehydrated. And, once we get that sorted with a port, we may well be able to control my symptoms with medications. They put the fluids wide open for the endoscopy to try and pump me up a bit, so I am farther from a crisis than I was, but am still anxiously awaiting clearance for a port, and the ensuing relief. Gentle hugs everyone.
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