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Emily, I had an abdominal CT 3 years ago and I vaguely remember the liquid stuff. It was yukky but mostly it just set off major diarrhea!! My GI system is very sensitive and it didn't like it at all. If I didn't have to drink so much of it, I think I would have been fine. This is a question I have always wondered about....does everyone, regardless of size or weight, get told to drink the same amount? When is your scan? I hope you do fine with it and can learn something useful from it that will help you feel better.

Nina, thanks for the link. I have read all about Hida scans and at least feel more knowledgeable for when I have my first appointment with the GI doc. I think the reason all these dyes and radioactive IVs concern me is because of how I got POTS. WHo ever would of thought I would be the one in 10 million who have a terrible reaction to something as common as the flu shot and yet that is how POTS began for me. It only took 2 seconds to change my health and life forever so I guess that explains my nervousness about any new tests. Goldicedance, it is good to hear your experience as well and about the CKK. When I read about it, I thought it would be like what Nina described so glad to hear for some that it is painless. My diet, even before getting POTS, was healthy and gallbladder friendly so if they give me something that is the equivalent of a meal at McDonalds, my system will go nuts!!! Is there some magical % that determines whether they need to remove the gb or not? GD, were you able to have the outpatient type of surgery? I hope you are having a good recovery. I know anesthia alone can cause a bit of setback. Take care and thanks for sharing your experience. I really love that there is always someone on this site who can help answer questions....it is really great!!

In answer to your questions, I really don't know the exact amount I put into each 24 ounce of water. I just turn the salt shaker over and pour! After a while I just know by the taste. Sorry I am not more specific. At night I prepare 2- 24 ounce bottles of water with salt. I also take a 20 ounce bottle of gatorade - pour about 6 ounces out in to another empty bottle and replace with water and then add salt. So the original 20 ounce bottle of gatorade has about 14 ounces gatorade, and 6 water plus salt. I also take the 6 ounces of gatorade which I removed, add water, and salt. On an average day I drink 48 ounces of water, 20 ounces of the diluted gatorade and 10 to 20 ounces of broth. My total fluid is usually between 64 and 84 with at least 40 in the first 4 hours when I get up. I have found for me that it is best not to leave home before I have at least 40 ounces of fluids. I had tried going off gatorade because the sugar was a problem for me but found I really needed it. Too much water and I just deplete electrolytes. Someone on here suggested diluting the gatorade and it works well for me. I have been ill for 4 years and have been drinking high salted fluids from the onset but when I went off Florinef I just became more vigilant about the numbers. Managing hypovolemia for me is a all day affair -- before and after Florinef. Because I had been reducing my Florinef over a long period of time, I was down to only 1/2 a pill a day before I went off. Nothing different happened overnite but with time my bp dropped and I have to monitor closely. but the wild bp swings up and down I had so often have been reduced and that is a blessing. I just feel better off Florinef but of course in the beginning I needed it. Everyone is so differnt with meds and for some it is a great drug. I was fortunate that I was able to go off it after 3 years but am realistic enough to know that I might need it again in the future. Hope this answers your questions!!

I know there are several posts about others dealing with gallbladder problems. I am seeing a GI for the first time and I suspect he may want to have my gallbladder checked. Several years ago a previous doctor talked about the HIDA scan procedure and as I understand, a radioactive pill or something is swallowed and tracked. When I learned the test was done in nuclear meds and the technician said that reactions to the pill thing was "rare" my family and I feared that meant ME! so my doctor back then said she didn't think it was that big a deal and I didn't have it done. Have any of you had any problem with the test? BAck then I was much sicker and while I am better, I still react to everything. I guess I sound like a real wimp but I would appreciate hearing from you before I see the doctor.

I am glad to hear that Nicole has made some progress in the last few weeks. I just wanted to make a comment about Florinef and the adrenaline surges. I know it is not true for all/most but I found that the Florinef kept my body "wired", even on low doses. I was on it for 3 years beginning with 2 full tablets and working my way down to 1/2. WIth any stimulation my BP would soar to the point that I was staying away from going anywhere. In Feb, with my doctors consent, I went off it and within 3 weeks my body was SO much calmer. I still am over stimulated easily but since my bp is lower, when it jumps it is still at an OK level. It is very hard to manage hypovolemia without a drug like Florinef -- and I don't use salt tablets -- but it is worth it to me. I start every morning with 20 ounces of salted water BEFORE I get out of bed in the morning and continue drinking all day with at least 16 ounces of gatorade diluted and salted. The hardest part is to never get behind. One round of diarrhea and it take me several days to catch up. I agree with Nicole and others. Salted drinks are good, but salted foods are even more effective. I have never hear of another med that does the same as Florinef but if there was one I might try it. Florinef just really caused me a lot of side effects. I would be 10 times more dizzy on the higher doses. It is all a trade off of what symptoms will be better and which worse when we try all these meds -- soooo confusing! all the best to Nicole.

Kathleen, you are in our thoughts and prayers. Hope you can look forward to improvements following your surgery and recovery.

this has certainly turned into a very entertaining subject!! Emily you are NOT a wimp. You shouldn't compare yourself to Nina either and her ability to keep on moving.....remember she is part super hero...hence the name mighty mouse!! I hope you both get answers and there is something "easy" that can be done to improve how you are feeling but if the results are "normal" just remember thats not so bad either, just frustrating.

Gena, I have had MRIs of the head, neck and spine as well as a doppler ultrasound of the carotoid arteries to determine if any of that could account for the pain that I had vertically down both sides of my neck and at the top of my neck/base of my head. Everything proved "normal for a person of my age". I find that it happens most when I have been on my feet too long or may happen the next day after doing mild exercise. If my neck muscles are tight it is much worse. I have been fortunate to be able to go to a massage therapist for the chronic pain weekly for the past year and a half. It helps but lying down is what helps the most.

Oh Michelle, that is SO funny because I got the same look on MY face the first time I had one done and the technician also laughed!! I had to reschedule the test the first time because when I had to drink the 32 ounces of water in such a short time my GI system "awoke" and I was running for the ladies room. The second time I only drank 24 ounces. Glad your test is over Nina and hope you and your doctor will learn something that can help. Emily, hope you did OK also. Going without fluids would be really hard I would think.

paige, I am so happy you shared your good news! I hope that this will give you peace of mind and relieve some of the stress you have been going though. You deserve it.

I got POTS following my first ever flu shot and would never take one again even if someone offered me a million dollars.

Jessica, I am SOooo happy for you. I know this has been a very long road for you but you must feel great that you stuck to your position. I guess the lesson for all is never give up!

WOW, Nina, you have a lot going on. I am so sorry to hear about the escalating pain and I hope you don't end up in the ER either. It wouldn't be so bad IF they could actually do something to help you but unfortunately that isn't always the case is it? I wound up in the ER on my birthday a few years ago with the same severe lower back pain and pelvic mild pain. I could hardly raise upright. When the tests came back OK, they said I must have strained my back which I knew wasn't true. Although I had 2 cultures, I asked them to send it off to the lab for the extended process and sure enough I had a bacteria infection which I learned about days later. I went over and over with the ER doc about my med sensitivities, ANS etc, etc and even checked the med he ordered with my GP....they gave me Levaquin which **** near killed me! I stopped after 2 doses and somehow got better. Hope you can rest this evening without the pain. TAke care.

Gayle, your original post also describes me. I used to be able to take Ceftin but for the last year I have the same problems you describe. We are down to 1 antibiotic and even it causes problems. I usually need them for sinus infections or bronchitis in winter. I really work proactively to keep sinuses from getting to the point of an infection and in the winter flu season, I stay home and avoid people! Anitibiotics and anti-hypertensives are the worst for me. Florinef helped but the side effects finally convinced me to go off earlier this year. Just know you are not alone!

It is so good to hear from you and I hope you will keep us posted on your progress. Do take care and I hope you have a quick recovery.

Nina, Have a relaxing weekend and feel better!

sorry to hear you have been diagnosed with dysautonomia but you will find lots of support here with the group. Many of us have improved over time but this is such an individual condition that what works for one, doesn't for another. btw if I stand up first thing in the morning without having first taken in 20 t0 24 ounces of salted water, I would have the same problem you describe. welcome to the group

Oh, Jessica, I know this is a big step...for YOU! Ethan is at the perfect age to enhance his social skills and will probably love being with other kids. Just remember he will also probably "share" all the germs from his new friends (LOL)! You are smart to get him adjusted to day care before you start school. good luck to both of you.

How exciting for both you and your husband. Hope you are doing well.

Yes, I love yoga! I started working one on one with an instructor 6 months ago and she has modified the poses when necessary to meet my needs. We mostly do easy stuff but on the days when I can handle it, we do some strengthening poses as well. And, just learning the breathing techniques has really been a benefit for me. I find that just having a reason to get out of the house and feel I am DOing something to help myself has really been a boost as well. I spend so much time at home alone that I really enjoy getting out for yoga.

jessica, so sorry to hear you had this experience. I was put on Levaquin and had a horrible reaction to it. As said before it is a very powerful drug and my doctor said for me to never take again. It sure sounds like your boyfriend had an allergic reaction. I hope he is better.

Hi and welcome to the forum! Sure wish more of us could meet in person. I've never met another person face to face with POTS! Sounds like you had a good time. Looking forward to your posts.

I can relate. Some mornings, like today, I felt like I was in what I jokingly call my "coma" sleep. Just deep sleep and hard to wake up. For me, that usually means my BP is low. I can easily test this because if my BP is too low, when I stand up, my HR will be very fast...guaranteed. Sure, enough, today it was racing. I keep a 24 ounce of water- with salt added- by my bed and try to drink all or most of it before I get out of bed. That makes me feel much better. I used to be very concerned about this too but over time learned that for me it seems to be OK. Most of the time I get very poor sleep so when I get a nite of deep sleep it is welcome. I just know I really need to drink a lot of fluid on waking. You might want to ask you GP if this should be a concern for you. He/she might be able to help you as low bp is something "normal" people occasionally deal with and your doctor may determine if it is bp or as you say cortisol levels. BTW, if I woke to an alarm clock, I would become hyperstimulated immediately I think from the noise and that would probably trigger symptoms. I wish you the best and don't be so hard on yourself about "freaking" out. Who wouldn't? Over time and with the help of a good doctor, you may be able to define what is "normal" for you. I also hope you will see improvements as many do. Good luck.

Ernie, I am so happy for you and hope that now you will have some peace of mind, knowing you have a doctor who understands and I hope will be able to help you. It is great to hear that you got to have some FUN time. YOu so deserve it!!

hello Stacey, I hope that you had an enjoyable birthday. I, too, wish I could be there to give you a big hug! Mine is Friday and I understand how you feel about another year going by living with this awful condition. Thank goodness there are so many wonderful people on this site to share our deepest feelings with and find just the right type of support when we need it most. And here, it feels OK to ask for that help. A wonderful environment! I try to remind myself on my birthday that when this illness first took hold of my body I thought I was dying and really wasn't sure I would see any more birthdays. So, I remind myself that being here for another birthday is a GOOD thing, despite the quality of life challenges. I try to identify at least 1 or 2 items that I have done that I couldn't do a year ago, no matter how small or insignificant they might seem to others and that is how I measure progress. If I think hard I can usually come up with several things to make myself feel better. I hope that you can find something that you can count as progress in the year ahead.