HopeSprings Posted June 7, 2012 Report Share Posted June 7, 2012 I went three times. The first time was a quarter liter, second time 1/2 a liter and last time the full liter. It did absoultely nothing. It didn't do anything for my blood pressure, tachycardia or dizziness. I thought it would at least raise my blood pressure because I think it would do that for even a normal person. My blood pressure stayed the same. I'm going to go once more - but if it doesn't work, forget this idea. It's disappointing because so many people have said it completely fixes them. I know only temporarily, but still... nice to know something can help. Also, I think a positive reaction to IV saline is also a great clue to the underlying problem. Could this simply mean I'm not one of those with low blood volume as a cause for symptoms? It appears I'm untreatable - not one thing that should work ever does. I'll take any input, thoughts, theories. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted June 7, 2012 Report Share Posted June 7, 2012 Me neither. Not ever .. I don't know how many who say it helped were given a ttt afterwardsand imho, that's the only way to know if it helped. Otherwise it's subjective. The cure for hypovolemia isn't saline iv. Imho, it's a goofy solution if you think about all the components in blood. I've found a couple of things that help me feel a wee bit better from time to time. No ttt's were taken tho. Taking 500 mg dlpa + 500 mg tyrosine once ot twice a day helps. Mainly it seems to motivate me so I don't care if I feel like poo. I have hashimoto's so these would be impacted. Eating more raw dark leafy greens eliminated my oh after about a month. My pots wasthe same tho. I need to retest to see if it's still gone. Fwiw. I believe based on what I'm seeng on the web that we're getting closer to getting answers on several chronic illnesses.Tc .. D Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted June 7, 2012 Report Share Posted June 7, 2012 Naomi, I'm sorry this doesn't work for you I hear what you're saying that you just want to know something can help even if it is temporary. It could possibly mean that you don't have blood volume issues. Or, I wonder if 1l maybe isn't enough for some. I know the first time I had it - I was really weak and had just had back to back syncope episodes, but it took 1 1/2 -2 liters to get me feeling close to normal. When I had it the last time it was 1 liter and I didn't notice an immediate change, but it was the next morning that I noticed I could get out of bed within minutes after waking which was a huge difference for me. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 7, 2012 Report Share Posted June 7, 2012 It helped break a cycle my son was in, in bed 24/7. He had 1 liter a day for 5 days in a row, done at home. After the third day, he was finally able to get out of bed, lessening his nausea somewhat and he wasn't as exhausted as he had been. It is something I would like to pursue again but have to wait to see if the MCAS meds work. They only want him changing or trying one thing at a time to see what is and isn't helping.Christy Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted June 7, 2012 Report Share Posted June 7, 2012 Naomi, I always ask for 2 liters. It seems to do much more than one. The other thing that seems to really help is a slow dispersal rate from the iv. For example 1 liter per hour with 2 liters total. I have to tell them to slow it down all the time because they think it is pointless and are just trying to get me out of there. If they do it quickly, I seem to urinate it all out. Another thing to note is that the first time they gave me saline was in the hospital. Two bags, slowly, before they wheeled me down for a ttt, as per the cardiologists orders. The ttt still showed pots but my blood pressure went up significantly from the laying sitting standing bp they did in my room that morning--my hr dropped from 170 to 130. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted June 7, 2012 Report Share Posted June 7, 2012 I haven't seen a change with saline either unless I'm actually dehydrated. If I'm dehydrated I'm more tachy anyway, so it just bring me back to my baseline ... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 7, 2012 Report Share Posted June 7, 2012 Doesn't work for me either. Dr. Grubb says salt loading doesn't work for hyperPots, do you know if you are? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 Sorry to hear that you did not respond but anything less than a litre would do very little. 1 to 2 litres is what is normally tried. Ive had it as 1 litre four times and on each occasion I had a dramatic improvement in my dizziness. Some POTS have 30% less blood volume - that is a massive amount.Me neither. Not ever .. I don't know how many who say it helped were given a ttt afterwardsand imho, that's the only way to know if it helped. Otherwise it's subjective.This comment would be valid if the degree of tachycardia directly related to subjective symptoms but it doesnt necessarily. The tachycardia being the only one of MANY symptoms that we report subjectively taht can be measured objectively by a doctor. But subjective is more relevant than objective. Personally I dont care about objective findings, but feeling better. And for me saline had impressive results.Many patients receive saline and then have repeated TTT - hence the reason the first paper on saline was published which did just this and showed objective improvements.But not all POTS patients are hypovolumic. That being said, increased volume should result in improved hemodynamics in neuropathic etiologies as well or so the theory goes... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 The cure for hypovolemia isn't saline iv. Imho, it's a goofy solution if you think about all the components in blood. Problem is in POTS with hypovolumia all electrolytes and other markers are normal - normal for that level of plasma volume. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted June 7, 2012 Report Share Posted June 7, 2012 Tachycardia isn't subjective since it can be measured. Feeling better is. I feel better at the beach but myoi is still there. ; )Can you give me the link to the study where ttts were done after a saline iv ? My oi definitely improvesAfter laying down for an hour or more. My hr will jump back up to pre-supine level if I get up too soon. Was it being supine that helped or the saline iv ? I haven't seen anyone look cosely at hypovolemia yet. The closest I saw was an article on the anemia if chronicillness. I admittingly still have a lot of terminology to learn in this arena tho. I would expect a hematologistto know this tho. Tc .. D Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 Tachycardia isn't subjective since it can be measured. Feeling better is. I feel better at the beach but myoi is still there. ; ) Exactly my point. As someone once said POTS is a description of a symptom, not a name for a disorder. Can you give me the link to the study where ttts were done after a saline iv ? My oi definitely improvesAfter laying down for an hour or more. My hr will jump back up to pre-supine level if I get up too soon. Was it being supine that helped or the saline iv ? I think what your indirectly saying is that because saline doesnt help you, for others it may be a placebo effect. LOL. There are several. Have you ever for an example done a google search for the words 'saline' and 'postural tachycardia'? I just did and I found the following but there are many:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/http://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=2&sqi=2&ved=0CF4QFjAB&url=http%3A%2F%2Fwww.jgc301.com%2Fch%2Freader%2Fdownload_pdf.aspx%3Ffile_no%3D201201010%26year_id%3D2012%26quarter_id%3D1%26flag%3D1&ei=-2LQT4KPAuewiQerzLmWDA&usg=AFQjCNEwKv4q6y1pw86p22_yMkdj94kQqQ&sig2=PGbI6_St9FYV6R0oJ6Jq6QI think the original study was done by Jacob who did many of the earlier studies. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Report Share Posted June 7, 2012 I haven't seen anyone look cosely at hypovolemia yet. The closest I saw was an article on the anemia if chronicillness. I admittingly still have a lot of terminology to learn in this arena tho. I would expect a hematologistto know this tho. Not true. Well it might be true that you hvent seen it, but not that it doesnt exist Its one of the main research angles and has been for a while now that autonomic factors are still sketchy. The renin-aldosterone paradox article is often pulled up here. But there is some interesting work coming out from Vanderbilt if you do a search on clinical trials website for POTS. Also the recent article on DDVAP.Anemia of chronic ilness results in reductions in blood cell counts, low plasma doesnt. But could inflammation result in reduced EPO mediated blood volume? The hypothalamus also regulates volume status as does both aldosterone/renin, kidney dopamine and ang II effects on renin.ald. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 7, 2012 Author Report Share Posted June 7, 2012 Thanks for the input. I had a blood volume test and am not hypovolemic. I guess I was thinking though since I pool that expanding the blood vessels might help somehow. At least raise my BP (still don't understand how it didn't). I had the 1 liter over two hours. The hospital pharmacist won't allow it done more quickly. They made me do the 1/2 liter over an hour. My Dr. said too much, too quickly can throw off your heart rhythm. I dunno maybe I need two liters, but then I'd be there for 4 hours! and I can't go check into a hospital for a week to try several days in a row. I just think it isn't targeting whatever my underlying problem is. Will give it one more try. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 7, 2012 Report Share Posted June 7, 2012 Naomi,Is there anyway you can get the IV Saline done at home? That is how we did it for my son, it was so conveniant! A nurse came to our house and got the line in and then gave me directions on how to disconnect the bag and how to start a new one. She came back on day 4 to check the line and she gave me instruction on how to take it out after the fifth day since that was the last one.Christy Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 7, 2012 Author Report Share Posted June 7, 2012 That's an interesting idea, Christy. Besides the nausea (which I know is the worst for your son) do you recall if the saline helped with tachycardia, BP or dizziness? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 7, 2012 Report Share Posted June 7, 2012 My son's dizziness has gotten better over time, I'm not sure if it was because of meds or what. While he still gets dizzy, it is less frequent. As for tachycardia, for some reason he can't feel when his heart is beating really fast. We have gotten readings of 160 for heart rate and he can't feel the difference..which I find so odd. So for him, the saline helped with the nausea and extreme fatigue. It allowed him to get out of bed by early afternoon instead of early evening. The last day he had his IV Saline was on the day we left on the trip to see Dr Afrin in South Carolina. It is a 13.5 hour drive for us, but he was able to handle the travel and I attribute that also to the IV Saline.Christy Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 7, 2012 Report Share Posted June 7, 2012 Saline has never helped me either unless I have heat exhaustion and that doesn't count IMO. I personally stopped salt and fluid loading after I saw the results of my first TTT. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 7, 2012 Report Share Posted June 7, 2012 When i first figured out I had POTS, I read about the salt loading and so I added salt to everything, that landed me in the hospital and my BP was up to 165/120. But surprisingly after 3 days of 24 hour saline IV my BP went down to 135/100... So maybe my adrenaline was the cause of the BP going up..? Quote Link to comment Share on other sites More sharing options...
yogini Posted June 8, 2012 Report Share Posted June 8, 2012 I don't remember how much got, but I could feel the difference immediately. I went from 155 HR to normal. When your body has enough fluids, it will flush out the extra. You will know if you got enough if you have to go to the bathroom. That being said, saline doesn't work for everyone. Maybe it isn't the right treatment for you. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 Exactly. I also noticed it straight away but my body soon went back to its crummy thirsty set point... Quote Link to comment Share on other sites More sharing options...
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