Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Tuesday

  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
  16. So it's been a long time since my first cardiology appt, but here's my experience: After referral and a description of my symptoms and history, they ordered a tilt table test (TTT) and an echocardiogram. They will usually do an EKG, also, in the office. This requires them to place electrodes on your chest, and for a minute or so they will record the results. It only takes about 5 mins total. The TTT and Echo you will probably need separate appointments for. Here is a good description of the TTT: http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879 The echocardiogram is just like an ultrasound, only of the heart. It takes about 20 mins, and you'll be asked not to have caffeine or nicotine prior to the test. Other tests I have had include the 24 hour, and subsequently 30 day holter monitor. This is where they place electrodes (like they do for an EKG) and the leads/wires attach to a device about the size of a beeper that clips onto your belt. You'll be asked to record events (like palpitations, or increased/decreased heart rate) when you feel them, and then write in a journal. The recordings will be transmitted to a monitoring company over the phone, generally. In my case I had to hold the device up to a land-line phone and press the send button - just like an old school modem. You may also have bloodwork done, depending on what is going on in your case. Edited to add: I had fainted previously, but it was not a major symptom for me. However, I was having problems with being faint and dizzy a lot, which is what generally prompts the TTT.
  17. Palpitations are really common for me, moreso when I'm dehydrated and not eating well. Also, going on Fludrocortisone (Florinef) made a big difference for me - it may be worth checking with your cardiologist if you're not already on it.
  18. I went in to my GP (walk-in clinic) this weekend to see about a prescription renewal and to discuss another flare of joint pain, headaches, rashes, and dizziness. In the past, every time this happens they do blood work on me. It usually shows a slightly elevated ANA, but nothing directly to indicate the usual suspects (thyroid, lupus, lyme, rheumatoid arthritis, etc) and I usually wind up with no answers. I was expecting the same again today. Instead, the doctor is referring me directly to Shands rheumatology dept. I am trying to contain my excitement and not get my hopes up, but I'm super thrilled! I went to a local rheumatologist several years ago, and he was very dismissive of me. Apparently he is the only rheumatologist where I live, so I was not hopeful of getting any new information until/unless blood work showed something new. I'm very happy to have the opportunity to pursue additional testing at a major facility like Shands!!! Has anyone else been there for testing? Any advice on what to expect for the first visit? I'm trying to make a list of all the tests and records I should gather to bring with me.
  19. I have been gluten free for over a year now, and it has definitely helped with some symptoms. The primary benefits for me are reduced brain fog, dizziness, fatigue, and body aches/joint pain. I've seen some reduction in GI symptoms, but I still have a lot of problems in that area. I can definitely tell when I cheat - the next day or two I feel awful and I crash pretty bad. I was not tested officially, but during my last endoscopy my doctor told me that I had esophagitis, gastritis, and duodenitis, all which would be consistent with celiac, but the villi were intact (where as if I had celiac, they would be cut off). So my body is definitely reacting to it, but it doesn't appear to be celiac.
  20. Thanks everyone! I did start reading up on some EDS forums about hiatal hernia but I hadn't found that one yet, thanks! I think they kept me on the meds during the Bravo because they wanted to see just how bad it was even with medication. I'll definitely bring up my concerns about EDS or an autoimmune source of my autonomic dysfunction when I have the surgical consult. It may be worth waiting to rule something in or out before I make the decision on the surgery. In the mean time I've got a purse full of prevacid, gaviscon, ranitidine, and dexilant to tide me over.
  21. For testing, my GP ordered some testing to rule out H Pylori. I've continued to test negative for that. I've had two endoscopies, one with the Bravo ph monitor, and a barium swallow. The first endoscopy showed esophagitis and gastritis, and the hiatal hernia. The barium swallow revealed a filling defect, so the second endo was ordered. During that they took out several polyps, and told me that my duodenum showed inflammation which is normally seen in celiac patients, but because the villi were in tact it wasn't actually celiac. All biopsies came back normal, no Barrett's. My Bravo was done while I was on medication. I had 22 events of acid/bile reflux with regurgitation the first day and 24 the second. My de meester score was 9.2, which isn't bad, but considering I was on all of my medications (Dexilant, Lansoprazole, and Ranitidine) it's not great. I've been eating gluten free for about a year and a half now, and don't usually eat dairy (other than cheese) and red meat, so I feel like my diet shouldn't be contributing that much to any issues. But I've also tried eliminating anything with acid for weeks at a time and didn't really see an improvement, so I didn't stick with it much. I'm very torn on this. If I had a clear diagnosis of EDS I think I would not even consider the surgery, but the time I went to a rheumatologist to get it ruled in or out, he told me I didn't "look" like I had it. I'd need to convince my GP to refer me to someone else if I wanted to try again, and that's been a hassle. I may try to get an EDS diagnosis ruled in or out for sure before I go ahead, but I don't know how long that would take. It's all just so frustrating!
  22. Thanks, Michelle! Your situation is exactly what I'm worried about, especially considering I don't know the underlying cause of my Dysautonomia yet. My doctors suspect either EDS or something autoimmune. If you don't mind my asking, what are the complications you've experienced from the surgeries? Right now I'm at my wits' end. I've been dealing with severe symptoms for years. During the 48 hour ph study the monitor recorded 22-24 instances of acid/bile reflux per day with regurgitation. I've woken up in the middle of the night choking on acid several times, once so bad I thought for sure I would choke to death. Nothing is really comfortable to eat, everything causes pain (some things more than others). I'm taking PPIs 2-3 times a day plus using tums/gaviscon. I've tried eating nothing but bland, low-acid food with little to no improvement. I used to have chronic recurrent sinus infections, which I now understand is from the reflux. Since going on PPIs I have only had one or two in the last few years, instead of the 3-4 per year I used to have. But I still am in pretty much constant pain from my esophagus on down. I'm still struggling with the decision, but I'm leaning towards gambling on the possibility of relief, even if it's just for a short time. I've been reading up a lot about all of the surgical options, including the TIF and the LINX. Unfortunately there aren't a lot of places near by me that seem to offer the procedure. I've found another GERD forum too, that seems to have a lot of great info, but it's hard to know how or if any of it is still relevant when you're dealing with POTS! Thanks so much everyone!
  23. Has anyone else here had a Nissen Fundoplication? I've been dealing with severe GERD for the past four years, and I've exhausted every PPI available with little improvement. I've been recently diagnosed with hiatal hernia, esophagitis, gastritis, duodenitis, and polyps.My GI doctor is sending me to a surgeon to discuss getting the fundoplication. I've done a lot of research on the surgery and what to expect, but of course things change when you bring Dysautonomia in to the mix. Since I won't be able to eat solid food for several weeks after, I'm trying to figure out how to keep myself healthy. I normally take many different meds, so I will have to see if there are liquid versions available. What was your experience like? Any special considerations for dealing with recovery with Dysautonmia? Did you have trouble getting your medicine, or staying hydrated? Anything you wish you had known or asked before hand? Thanks!
  24. I have been on and off Florinef over the past few years. It definitely helps for me. It helps me stay hydrated more easily, and it keeps my BP up. This has reduced the brain fog and wooziness, but I still have issues with them. The reason I have been on and off of it, is that after a year or so my body seems to over adjust and my BP becomes too high. I'm on an ACE inhibitor to keep my BP down, but it doesn't seem to be working, so I'll probably be going off Florinef again soon. It has helped a lot for me, but eventually my body gets acclimated and I have to go off it until my body is ready for it again. Not the best cycle but it's better than nothing, and much better than Midodrine was by itself.
  25. I've been on Florinef two different times. Each time, it took about 6 months for my BP to be consistently high, and now, over a year later, it's too high. I'm on an ACE inhibitor to help keep it down. You're very likely to see results, but it will probably take months for it to really stabilize.
  • Create New...