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About Tobiano

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  1. An update.... I've been getting subQ infusions for a while. It took a lot of trial and error before finding what would work for me. Right now I get 1L of N/S over 10 hours every night. I get 500ml simultaneously through 2 sites since the max rate is 50ml/hour. I have Cleo infusion sets placed in my leg and stomach, which are changed every 5 days at a clinic. I hook up the infusions myself each night. It's slightly inconvenient because I need 2 ambulatory infusion pumps and 2 lines running at the same time but I have worked out how to keep everything organized in a backpack. I find that the Sub
  2. Thanks Corina. I'm getting my first dose right now as I type. I'll let you all know how it goes (I think there will probably be some trial and error with this and only time will tell if it's useful). Hope you are doing well.
  3. Got a phone call today that the order is in. I'll start the subQ hydration tomorrow. It feels like a bit of a science experiment but my Dr. thinks it will help. Worth a try I suppose. I'll keep you updated.
  4. Hi Bellgirl, Thanks for your thoughts. I'm on 0.2 mg florinef per day. It's the max my doctor felt was safe. You're the second person to mention hydrating dogs to me in the past few days! Life with dysautonomia is always 'interesting' for sure, to say the least.
  5. Thanks Becia and Liz. It might be worth a try just to see... if it helps great, if not I'm really no further behind. Has this been suggested to anyone else?
  6. Hi, It's been a while since I've posted here. I'm at another turning point and am interested in everyone's thoughts. I'm currently on several meds (midodrine, mestinon, florinef, bisoprolol, NaCl tabs) and drink 3 litres of water per day and wear compression stockings. The meds and lifestyle measures definitely help however I still tend to crash up to several times per week when only these measures are in place. From May to August I did a 4 month period of receiving routine IV hydration (1L over 2 hr, 1-3 times per week as needed). Magic bullet! The litre of saline could get me out of a crash
  7. Restaurants have many triggers - prolonged upright sitting, heat, eating large meals (I do much better grazing on small meals during the day). I also find the loud noises and bright lights irritating. Now I sit with my feet up in restaurants (probably not the most socially appropriate but makes things a lot easier for me).
  8. Sorry you had a rough morning. I agree with showering at night... but I know that this isn't always possible. Things that I have found helpful are using warm water (instead of hot) and putting my compression stockings on right away after. Also, you could try a shower chair to see if sitting helps.
  9. Sometimes I get this as a side effect of Mestinon. But I know you mentioned you aren't on any meds so I'm not much help.
  10. I'm doing cardiac rehab right now... mostly recumbent biking (5 days per week) with some light resistance training (twice a week). Been doing the program for about 3.5 months. Honestly, I have not noticed a difference in my dysautonomia symptoms, which is disappointing. But still want to go ahead with the exercise for general health reasons. Cupcakemomma- I definitely agree that I'm the misfit.... one of these things is not like the other... Everyone else does laps around the track and I watch from the recumbent bike - I do wave to them as they circle me.
  11. I'm so happy for you Becia. Sounds like a good plan. All the best
  12. Becia, Hugs to you. Was the ER not concerned about your swallowing issues?! Have you had any evaluations for that...either a speech language pathologist doing cervical auscultation (listening to you swallow using a stethoscope) or a videoswallow study? I'm concerned about you possibly aspirating. You seem to be having challenges with multiple consistencies of food/liquid. Love how the ER discharges people without addressing these things...ahhh... you must be so frustrated. I hope your appointment goes well today.
  13. I can relate! My reflexes are brisk upon testing. I startle easily, especially if something jumps out of my peripheral vision.
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