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.
I’m happy you got to give IV fluids a shot! They blow my veins too sometimes. What it means is the nurse has puncture the wall of a vein after entering it. As I understand, it’s fairly common. For me, it mostly just hurts and bruises because blood leaks out a bit into the surrounding tissue, but doesn’t seem to cause any problems. Sometimes there’s also a bit of puffiness in the area. After awhile, you learn which veins are best for IVs and can direct the nurses accordingly! I’m thinking of getting a tattoo with “x” to mark the good spots.
Sounds like a big ordeal was had in just getting it done, I´ve heard a lot of good things about IV therapy for ME so this was interesting to read. I´m glad you were able to go out on your scooter (great pics!) but not so glad to hear of the negative effects. I hope you feel ´better´ after some rest. hugs x
MAN, IF I HAD ALL THOSE EFFECTS EVERY TIME, I WOULDN’T BE TRYING ANY EXPERIMENTS–WHICH I DON’T!!
Really wonderful photos. I love thinking of you there with your boys. Whether the saline was a plus or not, I honour your courage in trying it. ❤️
Sorry to hear about the crash after – would you try it again at a different time (no period) or in shorter sessions to see if that stops the post-exertion crash afterwards?
Amazing photos by the way – that park is just stunning!
I’m sorry to hear you had almost as many bad repercussions from the saline as you did good. But you were brave to try! I hope you feel better soon.
Very brave of you to experiment on yourself, no wonder you crashed after 6 hours out! IV saline is usually about as benign a treatment as it can get, but with us ME patients, never know how the body will respond. How lucky for you to have found a Doc who is not only willing to work with you trying out new treatments, but one you are also able to email with follow-up. Few and far between. Love the photos. Hope tomorrow has you feeling better.
Thank you so much, Kari! Yes, I also don’t know, with mast cell issues, you want to make sure the saline is warm, has no preservatives and that the patient is warm and calm. None of that happened. I hope you are having an ok day.
Wowsers, you were very brave trying it. I love your pictures and was delighted to hear you got out and about even if the retaliation is horrific, one good outing was enjoyed. Thinking of you. xx
Thanks for thinking of me! I can’t just sit idly by and not experiment. I need to know I tried something! X
The whole 6hour ordeal almost cancels out the benefits of the saline. It’s almost like you either need to stay in the hospital or have these treatments at home. If you increase your water intake and salt intake daily, it is supposed to helpe with the POTS. I know it’s hard to control, mine isn’t controlled well, and I take midodrine 2.5mg 3 times a day (to increase my blood pressure) and metoprolol 12.5mg twice a day (to slow down the heart beat).
I have a lot of problems in the shower, so I got a shower chair, and it’s been a great help.
Don’t give up on the saline, it IS a temporary “fix”. All that fluid probably was gone by the end of the weekend, just as if you were drinking lots of fluids. Try to increase your fluid intake, sip on water or tea or whatever you drink all day, maybe try gatorade or pedialite or something that is designed for replenishing the body from dehydration.
I will say it again, that whole ordeal of having to be gone for 6 hours just to get the IV is a lot of energy to spend, so there will definitely be repercussions from that. You may have to get saline twice a week or so for a while to really have any benefit longer-term.
I’ve gotten to a point where I just do nothing, because the more I try to fight it, the worse I get. I haven’t tried saline IV as a treatment yet, but I always think of it during the hot summer when I am the worst.
I am sorry I haven’t replied lately. I’ve been overly exhausted for a long time and sleeping 12+hours a day again, many times not even waking up and getting out of bed until after 1pm or even later. Yesterday it was after 3pm before I got up. I wake up several times, but always go back to sleep.
[…] 2-week repercussions to autonomic testing. November: Tried low-histamine diet for 5 weeks; tried iv fluids and caused anaphylactoid reaction; saw allergist. December: New nephew G. was born; Christmas with […]