Wednesday, January 16, 2013

I've Found the Golden Elixir of Life: Saline!

It's been a month of trying IV Saline for POTS, and my doctor and I have reached the decision that the saline infusions are working well and are helping me to feel better and keep my heart rate under control, and that we will pursue a port (portacath) for long-term use. Finally, a treatment that is a success! Saline: you are my fountain of youth, my tonic of goodness, my golden elixir!


My blood pressure is pretty stable with the meds that I am currently on for POTS: propranolol (beta blocker), midodrine, and florinef. The fluids don't seem to reflect much with regard to my blood pressure, as far as numbers go. My heart rate, however, is a different story. I can't keep it under control on a normal day. There are days when it stays in the 70s while doing minimal activity, and that is great, but there are so many other days when no matter what I try, I can't get it below 120. Laying flat on my back and having a 130 pulse makes me exhausted - I feel like I am running a nonstop marathon. The IV saline seems to help this. The idea being, we are tricking my body into thinking there is greater blood volume, so my heart doesn't pump like crazy. After running fluids for about a half an hour, I can see a drastic reduction in my heart rate. What I feel is a bit more energy, like I can breathe easier, I am not as dizzy, sometimes it helps with nausea, and I even notice it helps my GI system. I go from feeling out of breath and sluggish to feeling a bit more energized.

I'd like to reiterate that I do drink a lot of water. I average 64 ounces of water per day, I also have a cup or two of coffee, and sometimes I drink coconut water or juice (rarely), or Pedialyte when needed and I can afford it (stuff is expensive!). I would not account this drastic change to something I could do by just drinking more water. I drink A LOT of water. It never makes me feel this good, nor does it lower my heart rate like the IV Saline.

Right now, we have upped my visits to 3x a week. I have a nurse come out and hook up my IV Saline three days each week. I notice that the earlier I have it done, the better. If I have the Saline hydration in the morning, it helps me to feel better throughout the day; if I do it in the evening, it is almost wasted, as I end up sleeping not long after and the effects don't carry over to the following day. Some days, the nurses can't make it early, so I will gladly take the hydration at night; any is better than none. Once I have my port in place, I will be able to run my own fluids in the morning.

I tend to run about 250ml per hour, so it takes me about 4 hours to run a one liter bag. If I need to be somewhere, I can run it on "open" and be done in a little over 2 hours, or if I want to be lazy and lay around, sometimes I will run it at 200ml per hour, so it takes me 5 hours. It all depends on how I am feeling, how the IV feels (sometimes running it at open or even 250ml is uncomfortable, depending on IV location; it hurts more in my hand than my arm), how I am tolerating the fluids/pressure, and what my schedule is. I have so many doctors' appointments that I have to adjust my infusion schedule accordingly.

My doctor is in search of a general surgeon to install the port. Amazing PCP tends to take a while to do things, so I may have a bit of waiting on my hands, but he does come through. He is teaching me patience! Ha!

Just to get an idea, here are some numbers from random days I got fluids:

Day "A" - Nighttime Run of Fluids

Time:        Heart rate:          Activity:

9:37a         138                    Just got up - feeling very POTSy today, HR stayed this way all day
4:35p         93                      At rest - heart rate is too high, keeps jumping between 90 and 140
6:39p         89                      At rest - heart rate is still too high
7:18p         93                      Starting fluids - let's see if we can get the heart rate to drop!
7:36p         95                      Running fluids
7:52p         86                      Running fluids - heart rate starting to drop
8:09p         83                      Running fluids
8:56p         80                      Running fluids
9:18p         82                      Running fluids
9:52p         76                      Running fluids - still dropping
10:23p       78                      Running fluids - I am feeling much better at this point
10:32p       73                      Fluids done - So, I dropped 20 points. If I could have run these
                                            earlier in the day, I could have had my heart rate reduced and
                                            felt better all day.

Day "B" - Early Morning Run of Fluids

Time:        Heart rate:         Activity:

6:19a         102                    Just got up - resting heart rate of 102, too high
6:46a         78                      Been running fluids for about 20 mins, heart rate drastically dropped
7:04a         83                      Running fluids
7:50a         76                      Running fluids - big drop
8:13a         69                      Running fluids - keeps dropping!
8:39a         67                      Running fluids - feeling great
8:51a         68                      Fluids done - Here's the amazing part: After this run, I left and went
                                            to the doctor's. Afterward, I stopped and got groceries, then
                                            came home and had enough energy to put them away.
                                            Whoa! That is HUGE for me - I never have enough energy
                                            to do multiple things in a day, nor am I able to sort through
                                            my groceries when I get home. This was profound.
                                            I continued to feel good until the late afternoon, then my
                                            heart rate went back to its normal high. So, the effects lasted
                                            many, many hours. 


Hope this helps some of you - maybe you will decide to give IV Saline a try. It never hurts to talk to your doctor. I am so thrilled I decided to push for this, and I couldn't be happier with the results! Don't forget to read my guide on talking to your doctor about IV fluids.

Love and gentle hugs!
xo
dani

4 comments:

Lisa Simmons said...

I love reading your posts, I just got around to this one and I know what you mean about oral fluids and IV fluids being totally different ball games. Though I am allergic to IV saline even when they run it and treat the allergic reactions I feel more energized then my normal self. However I get very grouchy and swell up from the allergic part so we don't do IV fluids unless we're in the hospital awaiting a surgical procedure (even for a GI scope if you run a few liters you can keep mu vitals stable, otherwise I end up bottoming out on them and I take a huge POTS crash). IV fluids really do help and seems to be the #1 reason EDSers with POTS get a port.
Lisa Simmons
Care page: girlinchair

Anonymous said...

I have been diagnosed with POTS recently. It was discovered when I was taken off birth control pills at age 51 for menopause. I started with abdominal pain and weight loss. A GYN Dr. realized that I had POTS. I have begun taking birth control again and feel alot better! My heart rate still goes up standing still but I feel no symptoms! I feel that many POTS patients could be helped by taking them! The best one for me is Yasmin! I think that any woman with POTS should at least give it a try if not allergic or otherwise contraindicated! I believe it has saved my life! I was having chest pain and shortness of breath and too weak to get up. I decided to start taking my Yasmin again and felt better within 2 days!

sheepinabasket said...

My daughter was just diagnosed with orthostatic intolerance because of a connective tissue disorder (to be determined). She can barely walk (on a good day, less than 10 meters) nor stand. She can't sit with her legs down. We are waiting for the consult report to prescribe - salt tablets and some type of medication to "tighten" the arteries (not sure yet). Was it like that for you? I mean standing and walking? Thank you. :)

Kai-Lei Samchuck said...

Hi Dani -

Just stumbled on your blog while researching EDS and prolotherapy. I see you are due to have a kidney auto-transplant surgery for "nutcracker syndrome". I don't know if you are aware that there are less invasive procedures available for this condition (left renal vein stenting, for example is a day procedure performed under local anaesthesia). I also have pelvic varicocele (related to left renal vein compression), EDS, POTS, etc., so I have lots of articles and studies I could share with you if you are interested. You can find me on Facebook if you want to talk about it more.

Flutie Darbord