My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.
I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).
The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.
Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.
Hi Dr. XXX,
My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.
The good repercussions:
- My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
- My BP was higher than normal Friday night (109/67), but went back down the next day.
- My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
- My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
- I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.
The bad repercussions:
- The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
- It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
- I felt terrible Friday night. Heavy, inflamed, wiped out.
- My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
- The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
- I slept poorly Friday and Saturday nights and woke up too early both days.
- I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.
Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.
I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.