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Poll on the effects of IV saline on ME/CFS symptoms

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Gingergrrl, Oct 31, 2014.

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How did IV saline affect your ME/CFS?

  1. IV saline made me dramatically better

    21.9%
  2. IV saline made me minimally better

    15.6%
  3. IV saline had no effect whatsoever

    9.4%
  4. IV saline made me minimally worse

    0 vote(s)
    0.0%
  5. IV saline made me dramatically worse

    3.1%
  6. IV saline had varying effects- sometimes I felt better, sometimes worse

    3.1%
  7. I have never had IV saline

    46.9%
  1. Gingergrrl

    Gingergrrl Senior Member

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    This is the first poll I have ever created (and I am technically challenged with these types of things) so am hoping that it worked!

    I have been posting a lot about IV saline in @jeff_w thread but decided it was time to create my own thread and let him have his back! I also wanted to do a poll to hear as many reactions and experiences with IV saline as possible. Here is an overview of my experience:

    I had IV saline while in the hospital in Sept but while lying in bed over a very slow drip (6-10 hours) and did not notice any effects from it. Since leaving the hospital, I was given a prescription by my cardio for one liter of saline 1x/wk (over a three hour drip) at the outpatient infusion center of the same hospital.

    I had my first IV saline treatment and literally felt like a normal person for 48 hours. It was miraculous and I thought that combined with increasing fluids (Pedialyte and coconut water) plus taking low dose Midodrine, that I had found the miracle cure to increase my low BP and low blood volume. I was able to breathe better and it was easier to walk and carry things. The effect wore off in 48 hours so I was pushing to get my prescription increased to 3x/wk.

    Yesterday I had my second IV saline (exactly one week after the first) but not only did not get the positive reaction, I had a horrible increase of fatigue and a severe headache with pressure behind my right eye. My BP stayed in the 90's over 60's so there was no issue of my BP going too high. I also got very agitated last night and had a severe noise sensitivity reaction. I could explain the incident but the details are not that important.

    Is it possible to have that kind of bad reaction to one liter of saline (over a 3 hr drip) or does it seem more likely that I just crashed from 1-2 weeks of overactivity and unrelated to the saline?

    My doctor has been out of the country but ironically last night, through his PA, I got the approval to increase to 3x/wk starting next week. But now I am not sure if I should due to the weird reaction I had plus not getting the benefit. I know it could be a fluke and am planning to try it again just 1x next week, and if it goes well then increase to 2x the following week, and then 3x/wk times. On a side note, I have bad veins but the nurse at the infusion center is excellent and did not have any problems the two times I went.

    I would love to hear any feedback on how to proceed as well as other people's experiences with IV saline. And thank you to anyone who answers my very first poll!

    Question for @Sushi- Is there a way to add one more answer to my poll which is "IV saline had varying effects- sometimes I felt better, sometimes worse" or something to that effect? I can't figure out a way to edit my poll and realize I want that as one of the choices. Thanks!
     
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  2. Tired of being sick

    Tired of being sick Senior Member

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    I just had a saline 2 hour drip IV in the ER the other day 6pm to 8pm.
    This was my 1st by the way.

    I felt no effect until the following morning around 10am.
    I felt great,checked my heart rate by standing and it stayed in the 90's.
    So I went grocery shopping from about 2pm to 4pm and I crashed pretty hard around 4pm
    which made me feel worse than usual.

    I don't know how much saline they gave me but I know it was a full regular size bag..

    So I know it works but I most likely need the max dose as with every med I've been prscribed..
     
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  3. Tired of being sick

    Tired of being sick Senior Member

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    Therefore my answer on your poll would be inaccurate at best.
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl I added:

    Have a look and see if this is the way you would like it.

    Sushi
     
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  5. zzz

    zzz Senior Member

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    The timing of the reaction, combined with the fact that you had no positive effect whatsoever from the saline, would seem to imply that this was a reaction either to the saline solution, or to something associated with it. For example, this article from the Medical Journal of Australia describes an unusual reaction to chlorhexidine, which was used in a very small amount on the alcohol swab used to sterilize part of the equipment through which the saline solution passed. One of the patient's reactions was periorbital edema, which means an accumulation of fluid behind the eye. This would have caused a feeling of pressure behind that eye, such as you experienced.

    An allergic reaction is typically accompanied by itching (anywhere on the body), a rash, and in severe cases, hives. Did you experience any of these?

    Alternatively, if you received too much saline, you can have reactions such as diarrhea; cramps; nausea; vomiting; increases in heart rate, thirst, sweating, saliva, urine or tears; dizziness or lightheadedness; sleepiness; restlessness or irritability; swelling in the extremities; headaches; muscle twitching, convulsions or rigidness; or difficulty breathing. These reactions come from a list compiled by Dr. Stacy Wiegman, a licensed pharmacist, in answer to a question about the side effects of normal saline. A number of the reactions you had would seem to fit in this list. The pressure behind the eye would be in the headache category.

    The fact that you experienced this with your second IV infusion is consistent with an allergic reaction; the first infusion would have sensitized you to the allergen, while the second would have caused the reaction.

    Sometimes the problem is simply that the infusion was done too quickly, and doing it slower may alleviate the problem. This is especially true if you did not have a full allergic reaction. However, at this point, I would think that it would be important to confer with your doctor and determine exactly what is going wrong. Otherwise, chances are very good that you will have a repeat of this experience at your next infusion. In any case, I certainly wouldn't increase the amount of IV saline infused before you determine what's going on.

    As with many treatments, various unusual reactions can occur. One woman had a number of reactions and nearly fainted (very rare!). Her HR dropped to 21 at the low point. When she asked the nurse why, the nurse explained that it was probably just a nervous reaction.

    No healthy person has ever had an HR that low - that's severe bradycardia, not a nervous reaction. So it's important not to have your question brushed off by someone who doesn't know the answer. I mention this only because you said your doctor is out of the country.
     
    Last edited: Oct 31, 2014
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi thank you for adding that choice to the poll and it looks great!
     
    Last edited: Nov 1, 2014
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Before you have your next saline IV you should talk to your doctor about the reaction you had. If your doctor is going to be away for an extended time I would run it by another MD before proceeding ahead.

    I haven't taken any saline IVs for CFS/ME, so I'm sorry I can't add anything to the poll.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @zzz

    That's what I was wondering but was not sure how to figure it out!

    Is periorbital edema something dangerous and could it happen again if I do the saline again? Are you saying it was not from the saline itself but from the sterilization chemical? Both yesterday and today when I woke up from a nap, I had a bad headache with pressure behind my eye. Could this reaction still last into the next day? Have I done some kind of damage to my eye?

    I had some itching on my arm during the IV but the nurse had this blue tape holding the IV in place that was really rough and itchy. When she removed the tape and replaced it with some white gauze the itching went away completely so I had thought it was unrelated.

    I don't think it was too much saline b/c it was only one liter over a three hour period. I didn't have the symptoms you mentioned except for the restlessness/irritability (more like extreme agitation) and I couldn't figure out why.

    This part is confusing to me b/c I had several saline IV's in the hospital over a five day period and also had saline in the ER during mono and in a prior surgery. So it was the second time at an outpatient infusion center but not the second time in my life (in case that info makes a difference?)

    My doctor is back on Mon and I have an appt with him on Weds. My next saline is scheduled for Thurs so I will definitely not do it again before speaking with him. I had thought IV saline was totally benign and had high hopes that it would help me and feeling very discouraged right now.

    Luckily nothing like this happened to me and I have never had bradycardia (only tachycardia!)

    In my case, no one brushed off my question and when I left the infusion center, I thought I was doing okay. The nurse was very good and if I had told her I was having a bad reaction, I am certain she would have gotten a doctor.

    ETA- I just looked at the article you linked re: chlorhexadrine and I did not have any visible reaction on my skin like in the picture. Also, I had multiple IV's in my arms & hands during my five day hospitalization that they contantly cleaned with those alcohol wipes (don't know if it was chlorhexadine?) but I never had a bad reaction. Not sure what to make of this?
     
    Last edited: Nov 1, 2014
  9. Gingergrrl

    Gingergrrl Senior Member

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    @CFS_for_19_years Thank you and will definitely not do another saline before I see my cardiologist on Weds. I am so glad I posted this question and you guys are awesome b/c I was trying to convince myself that my reaction was not from the saline and now I am thinking that maybe it was. Thank you for the reassurance b/c I had felt like my ME/CFS had sunk to a brand new level of functioning but maybe it hasn't and I just had a bad reaction that is temporary.
     
  10. ahmo

    ahmo Senior Member

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    I had an IV saline drip once when I'd gotten badly imbalanced during detox. From ER stayed overnight in hospital w/ IV. The MD wanted to keep me longer, but I declined. I returned home and gave myself saline by enema. The IV left a nasty bruise/discoloration, which I felt was quite likely due to some additive rather than injury at the site. Having learned what I did wrong to become sodium-depleted, I'm unlikely to find myself in this situation again. I would always opt for enema or footbath rather than IV.
     
  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    There's very little that is benign. Even drinking a glass of water can raise blood pressure:
    http://www.mc.vanderbilt.edu:8080/reporter/index.html?ID=9047
    http://circ.ahajournals.org/content/101/5/504.full

    In my working life as a laboratory manager, I helped patients recuperate from feeling faint, so in addition to getting their head down and giving them smelling salts, a glass or two of water helped them feel better.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @CFS_for_19_years Thank you for those two links and I did not realize that plain water could raise a person's BP so much and thought it had to be salt water or electrolyte drinks (like Nuun or Pedialyte.) From the very beginning of my illness, my husband kept telling me that I was dehydrated and that I needed to drink more water/fluid and I thought this was irrelevant if my symptoms were caused by a virus & CFS. I guess I was totally wrong and drinking water is more important than I thought in raising BP and calming autonomic symptoms.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick Do you think you will try IV saline again? Is this an option for you or was it a one time treatment in the ER?
     
  14. zzz

    zzz Senior Member

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    I'm not aware of any case where edema itself is dangerous; I've found that it's always a symptom of some other problem.
    Possibly. It all depends on what caused the problem in the first place.
    It's hard to say at this point; that's just one possibility, although what you said later makes it much less likely. Whatever happened to you was a rather rare reaction.
    Yes; this sometimes happens. It just means that some fluid has gotten trapped up there. Over time, though, it will gradually get reabsorbed, and the pain will go away.
    I see absolutely no reason to believe that you have. I can't even imagine a mechanism by which that would happen in your situation.
    It sounds like it was unrelated. From the additional details you supplied, it sounds more and more like this was not an allergic reaction, but you simply got overhydrated and your symptoms were a result of that.
    That's certainly a modest amount of saline, and it was infused at a reasonable rate. But some people have unusual reactions to things that are easily tolerated by others; the pages of this forum are filled with unusual reactions. You need expert medical advice on this. Fortunately, you're seeing your doctor on Wednesday, and you can dump this in his lap. :)
    Also the headaches. The list is basically a standard drug reaction list; it doesn't mean you would get all of the symptoms listed there, but that the symptoms listed could all come from excess saline. From much experience, I can tell you that "restlessness/irritability" is often experienced as agitation, especially among those of us who are sensitive. The "irritability" is also related to the noise sensitivity, even if you wouldn't describe it as "irritable"; basically, these symptoms indicate an overaroused central nervous system. The source would be the same source as the headache - too much fluid in the brain temporarily creating too much pressure.
    Probably not. You can become allergic to something at any time.

    On the other hand, it's interesting that you had no problem in the hospital, and that this started on the second infusion at the center. I'd recommend pointing this out to your doctor. It could mean that there's something different at the infusion center that's giving you a reaction, and if so, once you identify it, you can fix the problem.

    And on the other hand (we're up to three hands now), if you had accidentally been given a two-liter bag of saline yesterday instead of a one-liter bag, that would be a simple explanation for what happened.
    Saline IVs are almost always totally benign. Something very unusual went wrong, and I'm sure it can be identified and fixed. Then you can go back on the saline. Saline solution is just sterile water with salt in it, and as both of those components are necessary for life, no one is allergic to saline solution itself; otherwise, they couldn't live. This is just another bump in the road, nothing more.
    This means that chlorhexidine is extremely unlikely to be the culprit.
    Exactly. I don't see how this could be a reflection of your ME/CFS.
    Very true. I remember at a talk in Boston to the local CFS support group given by Dr. David Bell, he said, "You're all dehydrated. Look around - how many people are carrying water bottles with them?" Almost everyone was. On this page about saline solution on PR, Dr. Bell is quoted at the top as saying, "It is the most effective treatment for severe ME/CFS that I have found in my 21 years of looking." When I'm feeling really weak or having a hard time, I've learned to drink a couple of glasses of water (or more), and that usually makes me feel better quickly. And when I drink a lot of water, I take a Saltstick capsule with it. The salt just helps the body retain the water (which is obviously important). But as Dr. Bell's quote implies, this is all true whether or not you have POTS. Basically, if you have ME/CFS with low blood volume (and low blood volume is pretty much a given in people with severe ME/CFS), saline IVs are an excellent treatment. In fact, they're so excellent that I've decided after recent conversations here that I'm going to talk to my doctor about getting some myself - something I should have done a long time ago.
     
    Last edited: Nov 1, 2014
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  15. taniaaust1

    taniaaust1 Senior Member

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    Yeah drinking plenty of water is very important for anyone who has ME.

    ................

    Im wondering if your crash was just cause you may of done too much esp with the addition of hospital visit to get the IV. I wouldnt rule out that possibility just yet.

    Ive had two bags of 1000ml saline this week (at same hospital trip).. for myself its essential and I wish I could get it regularly rather then just when Ive collapsed. For me it means the difference between safely being able to get around my house without falling or being able to walk to not being able to walk or do that.

    Thou the saline helps me greatly at the time (for the POTS), I can crash from ME the next day thou not due to the saline itself but due to the wait in the hospitals emergency room (thou Im on stretcher but there is still often too much noise, too many lights and too much going on around me) and just the fact its a trip out to have that saline when Im basically a housebound person.

    Not many who have ME do have bad reactions to saline.. and I think was 70% (or it could of been 76%) find them helpful, it was near the most helpful treatment for ME. (If I had more energy, I'd copy the poll/study someone did on this in us (34?? ME people) and the affects it had and send to you... Im feeling too wiped thou to be doing anything like that .
    ...............

    That pressure behind the eye, can be actually a quite common ME symptom which many of us get. (it can actually end up sending pain into the eye, like a whole eye ache with the pressure in the head just behind the eye).
     
    Last edited: Nov 1, 2014
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @zzz

    Thank you and that is re-assuring to me.

    Pretty much everything that ever happens to me is a rare reaction. I guess I shouldn't even be surprised any more.

    Thanks I will definitely be asking my doctor (but still would like to pay you a consulting fee as well ;).)

    I definitely had some kind of central nervous system arousal and that is exactly what it felt like. It was not quite as bad as when I had the over-methylation reaction but it is frustrating in retrospect b/c while it was happening it was so scary and felt so out of control but I did not connect that it could be related to the saline until tonight.

    The infusion center is part of the same hospital so I would imagine they use the same supplies and protocols but I will definitely ask them.

    The bag said one liter and I really don't think that happened.

    Thank you and I am really hoping to identify what happened so I can go back to saline and get the benefit like I did the first time which was amazing. If no one is allergic to saline itself, then do you mean my only reaction could be to the alcohol wipe or another chemical that is involved?

    I actually read that tonight (before you posted the link) and had felt even more hopeless that the most effective treatment found by Dr. Bell in 21 years may now be ruled out for me b/c I have some freak of nature reaction that no one else on earth has :mad: :bang-head: :eek:.

    Have you ever had them before and if so, how were they at the time?

    ETA: I also wanted to ask you, is it possible that the saline created some kind of detox reaction and I am reacting to that?
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @ taniaaust1

    Hi Tania, I still think this is a possibility but the reason it feels different is that I had a headache with pressure behind one eye (which I have never had before) and because of the agitation which usually only happens when I am having an over-reaction to a medication or treatment. If it had just been the fatigue or a typical crash from over-doing it, I would never connect it to the saline.

    I am so sorry you have to go through all the noise and chaos of the ER to get the saline. In my case, I was at an outpatient infusion center in a very quiet private room. But I had to walk from the car to the center and then down a long hallway to the room (we had not brought the wheelchair b/c I didn't think I needed it) and walking is very difficult and can cause a crash for me.

    I know and that is why I was shocked to have had this reaction. The first time I did the saline last week, it was so helpful that I felt "normal" for 48 hours almost as if I had been cured. That is why I am so thoroughly disappointed in myself after the second treatment.

    I searched to see if there was already a poll before I started this one but didn't find it! Why do I never find these things when I do a search?!!! Don't worry about trying to find the link for me.

    I guess b/c it is not a normal symptom for myself, is why it concerned me. If this was a symptom that I'd had before, I would not be connecting it to the saline.
     
  18. Revel

    Revel Senior Member

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    I have never been offered iv saline as a treatment option. I wondered if it's because I live in the UK?

    Has anybody received regular iv saline for POTS through the NHS?
     
  19. xchocoholic

    xchocoholic Senior Member

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    I'm not really awake lol but wanted to mention vasovagal response as a possible reason for having a bad reaction to an iv. I'm not sure how these work. I suspect it can take our bodies awhile to undo the biochemical effects.

    I had uncontrollable arm movement once in response to getting an iv at the ER. They gave me drugs to counter it because I was miserable and it wouldn't stop.

    I was too ill to know if I suffered lingering effects from my vasovagal response.

    Also, I was just googling saline iv cfs and found an interesting article by cort. The number of ivs appears to have played a significant role.

    I never noticed any improvement.

    Tc .. x

    Eta. I was looking specifically into venipuncture problems but couldn't find what I wanted from dr. google. I want to know exactly how our bodies respond to being stabbed in a vein. We know a healing process is initiated because we stop bleeding but what else is happening. I'm sure our adrenals aren't happy.
     
    Last edited: Nov 2, 2014
  20. zzz

    zzz Senior Member

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    If you saw the bag and it said one liter, I think we can assume that's correct. A two-liter bag would have explained everything... :rolleyes:
    From the answers you've given to my questions since my first post in this thread, I think we can rule out an allergic reaction - you've described absolutely no signs of one. And periorbital edema doesn't really fit the eye pain you described; that example was from the allergic reaction that we've concluded you don't have. As implied by @taniaaust1, the pressure behind the eye is best explained as part of the general headache.

    So the symptoms of excess saline solution that I referred to in my first post seem to fit your experience the best. As for what exactly is happening, the best explanation seems to be hyponatremia - low sodium levels. The symptoms for hyponatremia are the same symptoms in that list from my first post, which certainly implies that that's where that list came from. Hyponatremia can also cause fatigue, which is the one symptom you had that wasn't in that list.

    From that point of view, this all makes perfect sense. But how can you get low sodium levels from a saline infusion? The Wikipedia page on hyponatremia explains how this can happen:
    So even though you're increasing your sodium levels in line with the additional water, due to the fact that the body has two separate systems for managing sodium and water, your total sodium level may decrease! This is apparently what is happening to you. Very rare indeed! Fortunately, assuming that this is the problem, there are various treatments for this condition; your doctor would know which is best for you.
    No, I never have.
    As sodium, chlorine, and water are ubiquitous in the body, I can't imagine how they could lead to a detox reaction.
     
    Last edited: Nov 1, 2014
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