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Julyrose

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  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. Update: I saw a new cardiologist yesterday. My vitas absolutely sucked when they did orthostatics at 5 minute intervals: heartrate laying down 90, sitting 160, standing 189. He was not comfortable with those numbers. We went through the medication options. Myblood pressure can be erratic, but is usually low and beta blockers have been intollerable. I have a shunt because of Idiopathic Intracranial Hypertension (pseudotumor cerebri) and so volume expanders are contraindicated. We are going to add Ivabradine to the mestinon, but ultimately, he feels that my chronic dehydration from the gastroparesis makes controlling the POTS with meds alone impossible. He is going to ask interventional radiology what kind of indwelling line they think is most appropriate, but he is recommending a port as he believes I need more frequent fluids, and over longer term. I have Hypermobile Ehlers Danlos Syndrome, and have poor wound healing that looks like classical EDS more than is typical for my subtype, so that will factor into what kind of line I can get, and heightens the immediate risk of infection. Still, This treatment is badly needed. I will just have to pray, learn all I can, and be diligent.
  12. This is beyond frustrating then. I understand if she feels an indwelling line is simply not justifiable but as evidenced by the massive improvement in my vitals listed in my orrigional post, and this is my typical response, I get huge demonstratible and replicatable positive results from IV Fluids. Having known what it feels like to be more stable, it is devistating to have this improvement taken away, and know this likely will relegate me back to bed or a wheelchair most of the time.
  13. I have been getting 1 to 1 and 1/2 liters of IV saline once a week since last June. To say that it has been life changing is not an exaggeration. I also take 90mg of Mestinon 3 times a day to help manage my POTS and Orthostatic Hypotension. Between these two interventions, I have better quality of life and stability. I have not been to the ER since I started, and it used to be about every 6 weeks for fainting and resultant injury and needing fluids. My veins are incredibly fragile because of EDS, and so getting consistent peripheral IV access has been a great challenge. Two nurses tried 9 sticks collectively over the last 3 days and were unsuccessful. As a result, my prescribing doctor, my neurologist, has discontinued this line of therapy. The reason: "I have heard of patients becoming dependent on the saline" so she stopped it. I understand that at this point, to continue IV saline, I would need an indwelling line of some sort, be it a PICC or a Port and that the risks go up exponentially at that point. But, I have severe gastroparesis which makes it incredibly difficult for me to maintain adequate fluid intake, let alone the volume needed to keep the POTS stable. I am chronically dehydrated to the point I make lots of small kidney stones. Today, now several days past my normal infusion, my vitals standing for 3 minutes were 113/78, hr 166 and sitting quietly were 106/84 hr 143 My vitals last week before saline were: 87/66 hr 136 and then after saline: 93/74 hr 87. The mestinon really helps, but nothing has even come close to how the saline helps me feel, or how my vitals respond. The effects only lasted for a few days, but I could count on some relief, and that was worth so much to me. I am devastated.
  14. thanks! I have a running note going of things to ask/see if i can try. I feel so much more hopeful when I am in a state of action. It may work out, and it may not, but it feels good to fight!
  15. So I saw my rhumatologist today for follow up. My Lupus is clearly flaring, so I got 125mg steroids by IV. My bp is already up from it. My resting heartrate is higher, but I feel better. When you have POTS in addition to other chronic illnesses, It can be very hard to suss out what is flaring what. If I feel radically better in a few days, then this time, we can assume the Lupus was flaring the POTS. I loathe steroids, and have some complications with the intracranial hypertension when my BP is elevated from them, but as it is short term, my doctors just moniter it closely. Thank you all again.
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