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About Julyrose

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  1. 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.
  2. 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 m
  3. 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!
  4. 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.
  5. 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 a
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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.
  11. 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
  12. 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 th
  13. 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.
  14. 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
  15. 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!
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