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Tuesday

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  1. My cardiologist is referring me to Vanderbilt. I'm excited! But I know it will probably be 6-8 months before my appointment. For those who have already been, what should I expect? Thanks!
  2. I've had a similar effect, and I really can't explain it. Just know that you're not alone! I generally don't get hangovers, and a night drinking generally makes me feel a little better. Could very well be the increase in blood pressure and increase in blood volume from just drinking something liquid.
  3. I just started taking Mestinon this week, after being on Florinef for a few years. My immune system was too weak to stay on a steroid medication so I'm giving this a shot. Glad to hear it's working for you! I'm keeping an eye out to see how I feel. So far I'm not on the full 60 mg dose yet but working my way up while I'm trying to taper off the Florinef.
  4. Three weeks into the antibiotic (Minocycline) and I had an allergic reaction. Staph is back. I've got another appt with my doctor and an appt with my cardiologist tomorrow to see if there is any other option for me other than Fludrocortisone. I think that my immune system is just too weak to consider staying on it.
  5. I've just been diagnosed with my third staph infection in three years. The first two were on the surface of my skin, but this time it's in my lymph nodes. I'll be on antibiotics for a month. And unfortunately I'm allergic to the antibiotic that works best on staph, so I'll have to keep my fingers crossed that this one does the job, otherwise I'm looking at having to have them drained (I've already been through that once and I'm not looking forward to dealing with another open wound ever again). Has anyone else here dealt with multiple staph infections? I'm wondering if being on Fludrocortisone is weakening my immune system too much. In the side effects it states that it can lead to greater susceptibility to bacterial, viral, fungal, and parasitic infections. In the last three years I have dealt with a whole host of other infections, too. I'm taking about .1 mg of Fludrocortisone daily (dose varies from .1 to .15 mg daily depending on my symptoms). I've been on Fludrocortisone on and off for years, and it's been the only thing to keep my BP and heart rate in check. I just hope it's not at the cost of easier susceptibility to infection. I'm going to follow up with my cardiologist at my next appointment, but I wanted to see if anyone else has been through something similar?
  6. When I'm resting on the couch, my HR goes as low as 38. Sitting working at the computer my HR is in the mid 40's. When I stand up to walk across the room, it goes up as high as 120. I'm on Florinef now, which has helped my BP but my HR is still kind of wonky.
  7. I agree with katybug - talk to your doctor about how much you can adjust your own meds. I've been on and off Midodrine and Florinef for years. My doctor and I have discussed how much I can adjust my dosages myself, and I've come to understand when and how to dose up or down. It's helped me manage my symptoms better. Sometimes, for whatever reason, a particular medication stops being effective, or your body changes and you may need a higher or lower dosage to achieve the same effects. It's incredibly frustrating, but the more you can monitor and adjust your doses, I think the better you will feel overall.
  8. Great explanation! I've always thought of hypovolemia like this: In your car, your fuel gauge tells you how full your gas tank is. So, when it's full you know you don't need to top it off. In our body, when we have hypovolemia, our "gas gauge" is broken and tells us the tank is full when it's really not. So, we are not making as much blood as we need to in order to serve our body's basic purpose. Dehydration is about your entire body not having the fluid it needs to operate properly. While blood is part of that, dehydration is throughout the body. Edited to add: So yes, you can be one without the other. Your blood volume could be low, but you could have adequate hydration throughout the rest of your body's tissues, or you could have adequate blood volume, but not enough hydration in your body.
  9. So much of Dysautonomia has us bouncing between extremes - high or low BP, heart rate, extreme reactions to temperature or other stimuli - why should we take an extreme in our philosophy of coping? I'd argue that it's far more important to foster a balanced approach to coping and seeking treatment.
  10. The most frustrating thing about this illness is that it is seemingly impossible to predict how it will progress, and patients often yo-yo between being extremely symptomatic, and enjoying relatively symptom-free (or reduced) times. I'm glad to hear you've improved! Just be pragmatic about your outlook and try to find some way to enjoy your life whether you are up or down
  11. I've had similar experiences. I think part of it may be due to a temporary increase in blood volume.
  12. I just had surgery last month so I haven't been training for awhile, but in the past years I've played roller derby, completed three Tough Mudders, a half marathon, and dozens and dozens of smaller races. I've likely had Dysautonomia my whole life, and my diagnoses are all over the place (POTS, NCS, IST, OI/OH, MVP and more), so I've never really known what it's like to feel normal. I was never very athletic growing up, but I decided when I found roller derby that I wanted to make fitness a part of my life. I find that while exercise does seem to take a lot more out of me than others, in a strange way I actually feel better. So, while I need longer to recover, ultimately when I'm exercising regularly I generally have fewer or less severe symptoms. However, light exercise doesn't seem to make a huge difference. It's usually the really long, strenuous endurance training that gives me the most benefits, hence my addiction to things like Tough Mudder and half marathons. I've been involved with a Facebook group for Athletes with Dysautonomia, look us up if you are on Facebook. It's a touchy area, because so many people with Dys really can't get to the point where they can exercise, but there is a stigma of Dys being caused by laziness or deconditioning. And yet, it also seems that strenuous exercise really does help. It's a catch-22 for many. With Dys, if I fall out of a regular routine with exercise, I drop out of shape much more quickly than others, and it takes longer/harder work for me to see the same gains. But - it's totally worth it, and one of the only ways I can find myself experiencing long stretches of relief from my symptoms. When I am able to train hard regularly (lots of cardio, plenty of strength training) I come as close to feeling normal as I'm going to get. But when I slack off - it's a slippery slope back down into dizziness, fatigue, and everything else that goes along with a wonky nervous system. It's a blessing and a curse :/
  13. This is something that's really hard for me to define, because it varies so much day to day. I have days when I feel perfectly healthy. Those days are fewer now than they were about 7-8 years ago when I was first diagnosed. Most of my days fall somewhere in the middle: I'm tired, feel weak if I don't eat something every few hours or get enough water. I can work, but sometimes I need an extra cup of coffee to wake up my brain enough to be focused. I take my meds every day or I will feel awful. I have to watch what I eat or I will feel awful. Then there are days when I feel sick or would say I'm in a flare. On those days (or weeks) I'm flat out done. I can't get out of bed without feeling dizzy and about to pass out. Sometimes I'll wake up in the middle of the night with joint pain or stomach issues. I've had vertigo that kept me out of work for two weeks straight once. The balance of healthy/meh/sick days used to be something like 50%/45%/5%, but lately it's more like 20%/60%/20%.
  14. Not all POTS and Dysautonomia patients have problems running. I know several of us have competed in many races, and Angela Yendes completed a 50 mile run last year. Here's a link to an interview with her: http://transpersonalradio.com/interview-angela-yendes-dysautonomia-international-73/ That's not to say that it's easy, or that all patients are affected the same. There are days when I simply can't run, and days when I can. I ran a half marathon back in February of this year, but the last time I tried to go out for a short mile last month I had to turn around halfway and walk home. It's just another area in which everyone's results are going to vary. I do think it's important to show that exercise is possible, although difficult. A lot of doctors will seem to chalk Dysautonomia up to deconditioning - which just isn't true, and can be proven by those of us who still do exercise and are still symptomatic.
  15. You had a very good cardiologist. Most will just do the echo and ECG. I was seeing both a Cardiologist and an Electrophysiologist. I don't know who ordered which test, because they have the same office and I usually see the nurse practitioner but I agree, I have a pretty good team
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