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brethor9

Scary Pots Attack After Saline Infusion...anyone Else Experience These?

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Hi everyone!

So I had a very bad day yesterday :( I had the home nurse come by to try to start me again for the saline infusions. In some of my recent posts I mentioned I have been having huge difficulty in getting these due to poor vein access...reaction to subcutaneous infusion...just on and on. Yesterday after some go around my lovely nurse managed to get a line and started the IV....this is when things got ugly....right away I started to itch all over and my chest started to flush, dizzy etc. The bag that was to take 4 hrs to go through wnt through in 1.5 hrs not sure why?

At the end of the bag I decided I had to go to the bathroom (only to pee most of it back out even on the florinef) it would seem standing up added to a cascade of symptoms already winding up.....I could barely hold my balance, my head was pounding full of pressure, and I started having serious body tremors.....the event was so bad my nurse videotaped it. I have posted it on you tube hoping some of the masties and potsies could view to see if anyone experiences anything like this?

http://youtu.be/HyCNt3mcET4

....I would love some insight.....it was terribly scary!!

Bren

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Hugs .. I watched part of the video and had to turn it off. Fwiw, I'm not sure what was going on but

the nurse who administered my meyer's cocktail iv's would've stopped the iv and consulted my

doctor. But I was getting those in her office.

If it were me I'd contact the doctor who prescribed this for you.

Sorry I'm not more helpful. Tc .. D

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Guest Alex

Bren,

goodness gracious, my heart goes out to you!

Please get a hold of your doctor and let him/her know what goes on.

Hugs,

Alex

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thanks guys! unfortunately my specialist is away until the middle of August :( I have been asking around on the mast cell forum and some patients are saying it could have been a mast cell attack....who knows? with POTS its anyone's guess......I have small ones in the past but this one was by far the worst....I am worried this may be a new phase for me ....praying its not :(

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So sorry Bren! I had an IV on Monday night in the ER and it was sodium chloride and they put 2 bags together and he opened it up to go as fast asit could which I have never ha done and I started getting sick and the chills and made them stop it and after a while it went away . But nothing like your experience.

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My first thought is maybe your potassium or calcium got diluted and got "low" in relation to the new fluids? (That is just off the top of my head and I have no real theory behind it, so take it with a grain of salt!!).

You look like you're feeling horrible, and I hope some doctor can help you sort this out before next time. Maybe way less fluids next time to try it out?

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Holy Moly, Bren!!!! I am SO sorry!!!

Could it be an adrenaline dump because of the stress of the IV?

(BTW, I take Florinef & salt, too, and the last time I had to get an IV, I had to get up from the hospital bed and go pee twice in two hours!) I always wondered if everybody else did that, too?!

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thanks guys :) I am feeling better today but still very shaky and incredibly sore from the severe muscle contractions. I have been taking lots of benadryl and zantac and it seems to be settling things down even more. My nurse theorized perhaps it could have been over vasodilation from the fluids and as soon as I stood up all the vessels opened which caused a massive adrenaline release to compensate and in turn caused the episode coupled with mast cell release. Sounds plausible I guess....the funny thing is that I wasn't really feeling horribly dehydrated before the infusion and I felt pretty good before the treatment. Needless to say I am not going to be having another one :(

Sue....I don't think it was Potassium because I take in a lot of potassium through coconut water and other foods......but thanks for your input it is appreciated :)

I am just amazed that the body can totally be out of control like that with no warning and then a few hours later it shakes it off (well after lots of meds ;)..) I was reading today about autonomic storms and wonder if that could be what I experienced?

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((Hugs)) Bren. I don't know what could have happened. This is why we need to know what's causing our problem, so we don't inadvertently do something that will worsen the situation. My PCP told me he'd go along with the IV saline idea because it "wasn't going to hurt me," but he didn't think it would work. Well, how do you know it's not going to hurt me?- what if I have some weird leaky blood vessel disorder or some odd condition where my body can't process lots of salt.... these may be silly examples, but you get the idea. Glad you're doing better now - let us know what your prescribing Dr. says... I'm really curious.

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Scary. I responded to you on the other forum, but I definitely get those shakes as part of my anaphylactic reactions as well

when I say anaphylactic it's just for ease of lumping all of my POTS, MCAS flares etc as I think of them all as a mast cell degranulation cascase of one sort or another

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Anaphylaxing..... yes the saline was just regular saline and at room temperature.......the IV was set on a very slow drip but the fluids still ran right through me...I suspect reaction as the first symptoms were itching and flushing...especially my chest. Is that familiar to the mast cell episodes you have? we also tried a subcutaneous pump in the past and the area where they tried to insert the needle immediately swelled and turned red.....do you get the severe muscle contractions with yours? like every single muscle is contracting at the same time?

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(((((( Bren ))))))

I am so sorry that happened to you. The other day (well middle of the night) my husband saw me have an episode where all my muscles clamped. He said my hands were spread wide too. My body was twisting up. All I can say is the clamping was excruciatingly painful. It happened after my muscles felt very weak. Once the clamping was over, I was sore but the muscle strength had improved.

This wasn't related to IV fluids or anything though...

My heart goes out to you! I really hope that doesn't happen to you again. I reckon there is a possibility it was a kind of autonomic storm.

Take good care

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That looks so familiar. I used to get them about once a day, but now that my blood pressure is stabilized, it's been a couple months. I think (my theory) is that the vagus nerve got stimulated somehow and then you start with the uncontrollable shaking or our blood is so thick from dehydration that when it starts flowing normally, our muscles have no idea what to do with the extra oxygen and nerves start firing when they shouldn't. Often this happens if I'm exhausted AND if saline is run too fast. I used to get weekly infusions and when they ran them over an hour I'd start twitching like that (Reminder, don't do this in the ER or else you'll get valium/ an anxiety diagnosis), along with chills and the dreaded D. 4 hour infusions were fine. Doctors have NO clue about this. They all tell me saline can't do that- but I assue you, it can. Gentle hugs.

Sara

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Ohhhh, Bren!! I have no idea what happened but just wanted to send you another hug! Just the picture on here looks scary. I can't imagine how scary it was to have to live through it! I hope you figure it out soon. As other people suggested, the only things that pop to mind are anaphylaxis and some sort of electrolyte imbalance.

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You poor thing!! I'm so sorry you had to go through that. No advice or insight, but sending positive thoughts your way. Hope you get it figured out soon!

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Bren,

So sorry, you had such a terrible episode. I've never had it quite that bad or that sudden. But, I do have the tremors and worse on one side of my body and I do have muscle spasms that cramp me up. I use Bental daily for the muscle spasms. It helps, but doesn't totally stop it. With the itching and flushing it does sound like some sort of histamine reaction. When I have the mast cell things happen - I get hot flashes and the shakes. Since the anti-histamines seemed to help - another sign that this is a possibility. Were you already on H1 and H2's or did you take them after the fact?

I think someones idea about an imbalance in your electrolytes makes sense. With the extra sodium - even if you have the other minerals (magnesium and potassium) on board - it still might not have been balanced well enough. That can also cause cramping.

Hang In There Darlin! You're a strong person. Hopefully, they will figure this out and really soon.

Issie

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Looks like an autonomic storm. You feel like your going to die but you don't... Weird that it happened after saline. Perhaps the sudden change on volume status spiked the symp or beta receptors too quickly. I feel for you. Its hard to watch because it brings back memories.

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I'm sorry you had to go through this. I hope you feel better today.

I had my last episode, in January, during saline infusion. I went for IV because I was fasting that day to prepare for colonoscopy. I had a headache (I always do with skipping meals) and thought saline will make me feel better. I had the first 1l. bag in 2 and a half hours and the nurse put a second one on faster drip. I get my saline in doctors office and they were closing in 1 hour, so she wanted me to get as much saline as I could. About 10 minutes into a second bag I got really cold, soon after, I felt a squeeze in my chest, my heart started racing, I had shortness of breath, red blotchy spots on my chest, tremors for about 20 minutes and frequent urination for several hours (always happens with my episodes). I was in bed for 2 days after that tired and unable to do anything.

I had to cancel that colonoscopy appointment, but they admitted me to a hospital a week later, put me on a slow dripping IV saline with glucose and I was able to go through all the preparation with only a headache. I went through a colonoscopy and sedation without any incident. It must have been the fast drip that caused my episode a week ealier.

Our bodies are so sensitive to sudden changes. I think the theory of imbalance of electrolytes makes sense.

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This happened to my daughter about a month ago when she was getting a saline infusion. She had a saline infusion the week before and it went fine. This time they didn't even get a chance to get the saline going in. Just the needle going in caused this kind of reaction. The doctor had no clue why.

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thanks guys :) yeah it was very scary! after all of my specialitsts reviewing it the video they believe it was mast cell related and autonomic in nature.....I just had a skin biopsy done that I reacted very poorly to also. The mast cell specialist said even the pin prick itself can degranulate the mast cells so now for any procedure of any type I just make sure I have benadryl. I have had similar episodes....not quite as bad thankfully and they respond well to H1, H2, and benadryl so in my case I think as long as the mast cell stuff is under control the episodes should get better.....crossing my fingers ;)

Bren

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I have had those shakes/ tremors/ attacks for many years and have been witnessed in many medical settings. Usually they come out of no where for me and no doctors or nurses were very concerned they would give me a warm blanket and they would pass after 30 mins to an hour. I think they thought it was just a panic attack but from experience its usually some sort of over stimulation prior to me getting them. Like being scared, overly angry something of that nature so maybe its a adrenaline attack.

Hope you get answers soon.

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