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CallieAndToby22

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  1. https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/
  2. I have stopped doing the salt tablets in water for now because I've done it for years and it just makes me nauseous. The cardiologists always tell me to drink loads of fluid and I can't because of my bladder which already keeps me from rest, sleep, and I am in constant horrific bladder pain. I wish I could drink all the gatorade in the world because it does help but it's not an option. When I was at Mayo getting ready for scan I had to have full bladder and drank about 4 bottles of water that morning and I was flared for a few days because with IC our bladders are so sensitive. I wouldn't complain but it has cost me so much sleep and simple things like not being able to go to the movies or concerts b/c of going to the bathroom so much. In my state they won't give any pain medication for this condition they want to do amitriptyline, a tri-cyclic anti depressant, but when I asked a group of IC patients about weight gain they collectively said they gained about 50lbs and it didn't help that much plus it interfered with my other medications; so I think it's sad that people are left in pain so often. The good news is the saline iv's help so much and my body retains it and it actually helps my bladder and I actually don't go to the bathroom so much and overall it helps tremendously with getting more cerebral blood flow, the bad news is the doctors won't do it for me and I need a port. Everything I've read said hey it's just saline the side effects are minimal but they are just worried about ports.... In regards to IC there isn't much treatment because they don't know what causes it and the one FDA approved medication for it called "elm iron" was recalled because it made long term patients start having terrible vision and eye problems and I took it for years without any benefit, glad I quit it when I did.
  3. I only get shelter dogs too. Both Callie and Toby were from the shelter. And my next dog will be from the shelter, the shelters are overflowing and we need to save these animals. I want another dog too but too sick right now but I will be there looking when the time comes. Yea Toby hasn't really realized what's going on but in time I think he will miss her as they were best friends....... I did DNA kit test on them not too long ago so it was really interesting to see what Callie really was, all mixed up! Here's a photo from 7 years ago when they were young and spry.
  4. Well the problem is I have severe Interstitial Cystitis and I can't drink anything with acidity, citric acid, potassium, cabonation, caffeine, etc. So I can't drink electrolyte drinks or anything flavored with fruit and V8 is tomato based and all would flare my bladder for weeks then I would be urinating every 5 minutes. Unfortunately I am limited to water, salt water, and vanilla almond milk and that's it. I also have bladder problems from the dysautonomia like bladder outlet obstruction so it's been a mess for me trying to get any rest or sleep since I was very young.
  5. So ridiculous!!!!!! These doctors need to become informed and do some research!!!!??????
  6. I can't retain fluid just urinate it out so I have to drink filtered Walter with salt tablets dissolved in it. Still I'm going to the bathroom constantly. If I get saline iv's that is the best treatment for me thus far. For me it's never enough salt, my blood pressure is still desperately low. My ex boyfriend used to urinate a lot as well and I told him to increase salt intake and it helped, we both have the same rare blood cancer. Edit: Also there is a thing called "low blood volume POTS" and I read about a guy getting saline infusions every week and after a year with continued infusions he recovered.
  7. I just wanted to update because this is getting weirder and weirder. So my testosterone tested normal most recently but DHEA tested extremely high and has tested high in the past like 10 years ago. I did 24 hour urine for catecholamines and the epinephrine is way too low and the neurepinephrine is barely in range so the E+N total was way too low. I'm very confused because my mom sees I have this constant adrenaline and then I'm barely sleeping these days. I have a good endocrinologist fellow at Mayo but I'm so concerned like what is going on?
  8. Yea I'm having great difficult finding anyone and most have horrible reviews online and in a FB florida dysautonomia group my mother is in. There is a Jacksonville Jaguars football player whose wife has POTS and I watched a video and he is a big supporter for awareness etc. but the neurologist they had on the news just talked about fluid intake and salt and it's like um no, my case is so severe I can't even sit up or stand for more than 5 minutes without passing out. So frustrating.
  9. On a whim my urologist gave me rapaflo which is normally for men but it helps with urination and it fixed a lot of my urinary problems and it took away my nightmares but I started getting very dizzy upon standing then I began having near syncope so I had to discontinue. I found out later it was an alpha blocker but it was mostly only supposed to affect my bladder but it was terrible for dysautonomia. It has been the most effective for my urinary problems and ptsd but I couldn't tolerate the lowered blood pressure. For my bladder I could use the bathroom and actually feel empty for the first time in decades!!! Very sad I can't take it because it helped with bladder pain as well. Nothing else helps with my nightmares either. It's very hard because we have to duck and dodge medications that could help in one aspect of our lives but make dysautonomia so much worse. An endocrinologist recently wanted to prescribe me something that would lower blood pressure and I had to keep telling her I can't take it and I had to keep explaining, we really need some awareness!
  10. I don't know. I get it too. I start having neurological symptoms with it as well, tremors and weird movements in my hands. Very bizarre.
  11. Thanks. My other dog is getting sick too. It's part of rescuing animals but still tough.
  12. Thank you. I am already at Mayo for oncology and endocrinology. I tried to make an appt with a local cardiologist who had a review that said he was great with POTS and they set me up with someone else and couldn't tell me if he treated POTS, they had no idea what I was talking about with "dysautonomia", "orthostatic intolerance", etc. Edit: And so sorry you lost your insurance.
  13. Thank you both. I don't have social media so I'm glad I could share this here and get support. And you can see of course that she and my last living dog make up my screen-name not just here but many places.
  14. My dog passed away tonight. I will leave some lyrics, a song, and a photo. ""And how the grace with which she walked into your life Will stay with you in your steps And pace with you a while So long, so long So long, so long" - Dashboard Confessional
  15. In new city (I'm moving) we stumbled across a place that does hydration infusions and I'm so so glad b/c the doctors won't do it but also they would do vitamins and simple things like zofran. Zofran is very good for nausea so maybe if you find one of these places you don't need a prescription as I just paid for the lactated ringers saline iv and a NP administered it right then and there and that helped with the tiredness from the trip. They said with membership I can get up to 3 times a week so that's what I'll do.
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