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Everything posted by Tobiano

  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 SubQ infusions aren't as effective as the IV infusions. So, I need them every night. If I miss one I get dehydrated and start feeling crappy and if I miss two I'm toast. I still have to take all my meds (mido, bisoprolol, florinef), pace myself, wear compression stockings, and drink 3L of water during the day. However, they definitely help! I did wean off for a while to see what would happen and I started having pretty bad pre-syncopal episodes again. Also, I still have an order for IV infusions prn for times when I'm really not feeling well and need an extra boost. But, with the nightly SQ infusions I'm having approx. 2-4 IVs per month rather than the x3 per week I was getting before. I don't know of anyone else who has SQ infusions as part of their treatment plan so I'm not sure if this would work for anyone else. It's definitely not 'standard' but seems to be working for me for now. Also, it's a lot more convenient and safer than a central line or continuing to ruin my veins. Thought I would share if anyone else was interested. How is everyone else doing?
  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 very quickly. I also learned how to judge my symptoms and get the saline in advance to prevent crashes. I was nearly back to my pre-dysautonomia self in terms of functioning. Until...my veins were exhausted by all of the peripheral IVs. In Sept. I got a PICC line and had reliable venous access for several weeks. Things were going well until it became infected and had to come out. Scary experience. Back to square one regarding my venous access... My GP has suggested trying subQ hydration as a safer alternative (having a much slower infusion over the entire night, perhaps every night, rather than faster infusions during a few days per week). At first, I was thinking there was no way it would work. When I'm crashing, I only feel better near the very end of the relatively quick 1L infusion and then the magic wears off within a day to a few days. I doubt that having an extremely slow infusion would give enough of a hydration 'boost' to get out of a symptomatic period. But then my thinking kind of flipped. What if the nightly subQ infusions were put in place more for prevention rather than for getting me out of crashes? Sort of a similar principle to drinking the 3L per day orally (if I don't drink this much I feel horrible and am way more likely to crash and unfortunately I can't tolerate drinking any more - I already have to pee at least once an hour, sorry if TMI). Perhaps the subQ fluids overnight could give me a head start and, in combination with the 3L of fluids taken orally during the day, could be used to keep me as hydrated as possible in general. Maybe I wouldn't crash so much? Then I could save getting the peripheral IVs for only when I really, really, really need it - hopefully prolonging my veins? Perhaps this is a shot in the dark due to desperation but I thought it was worth throwing the idea out there. Any experience with this or thoughts?
  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.
  14. LittleOne- I can so relate to what you just said. PM me if you want to talk more.
  15. Same here. It took several months for the fatigue to improve. See what happens now that you switched the dose to evening. Good luck
  16. Hi LittleOne, I'm also on bisoprolol. It took me months to get used to it. I wanted to go off it after a week. The fatigue was unbelievable at first - although I was also extremely fatigued before so it was hard to tell how much was the BB vs. the dysautonomia. However, I'm glad I stuck with the med for a few months. It ended up being very helpful to reduce my tachycardia. My fingers are crossed for you
  17. Is Tyler on midodrine? I get something similar on my legs, neck, chest, stomach and lower back. I was told mine is likely a reaction to the midodrine. Sometimes it's itchy and sometimes not. It usually correlates with other midodrine side effects e.g. goosebumps (everywhere) and bladder issues.
  18. Congratulations!!! Such a major accomplishment. I think you will know what will work best for you. See what the accommodations office says. I really hope they can put things in place to make the event more enjoyable for you. I'm just brainstorming... maybe some of these could help... Asking for an aisle seat in case you have to get up (maybe on the wall side so that it's not as obvious if you get up - and that way you could get up slowly before you have to walk on stage), being allowed to carry a small bag with you (with your meds, water and other things you could need), and having someone to escort you down the aisle and up the stairs to the stage. Looking forward to your updates!
  19. Bren - One of my cardiologists has been involved with some advocacy efforts to bring the drug to Canada. Last I heard, it's not approved by HC yet (not even for compassionate relief). Will let you know if I hear anything more.
  20. I break open NaCl capsules and dissolve them in water or soup. Not sure if this would work or still be hard on your stomach.
  21. Very well said. Pushing through symptoms and acting strong willed buys me some time but the crash is inevitable, and usually worse than if I had just listened to my body in the first place. Over time, I have learned to be kinder to myself but still have much learning to do. It's hard to find and accept your limits with a condition that fluctuates. My limits one day can be different than my limits the next day. I don't really have any words of wisdom but I definitely can relate.
  22. Thanks Chaos! I'm going to look into the fitbit a little more. Take care
  23. Hi Chaos, You have to buy a chest strap as well if you want the polar loop to monitor HR. Does the fitbit monitor HR? Do you need a chest strap? I have seen good reviews for the FT4. I have the Suunto M2 for exercise. I wear the Nike+SportBand as my "everyday" HR monitor. Basically, I'm looking for something small that can go with dress clothes at work. I want a watch where I can easily flip between the time and my HR. I'll keep looking.
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