brethor9 Posted February 28, 2012 Report Share Posted February 28, 2012 Hi AllWow I think I am sooo lucky to have my POTS specialist! Went to my follow up yesterday and he actually asked me if he could treat me with bi-weekly saline infusions to help with my chronic dehydration issues. I was completely speechless considering we had discussed this topic on the forum recently saying how we wished dr's would do this. He said that he has 1 other patient he started doing this with and has seen good improvement and wants to try it with me now. (He said in some of us our thirst sensors are broken and need to be retaught and hopefully IV infusions will rewire the signal)I of course said yes please LOL! no fuss no begging...its done! I hope his open mindedness will start to rub off on other dr's treating us and soon we will all be getting some saline Bren Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Report Share Posted February 28, 2012 Can i come to the same doctor please LOL. Fantastic.I find it does make a massive difference for a short period and has helped me get out of a severe relapse. There seems to be some cumulative benefit at least in my case. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 28, 2012 Report Share Posted February 28, 2012 Bren that it EXCELLENT!! I hope you get that wonderful saline high that I do!! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 29, 2012 Report Share Posted February 29, 2012 Bren - that's amazing. I saw a CFS specialist last week who recommened weekly saline - if my primary Dr. would agree to it. I was shocked she even knew about this! I'm waiting to hear more from her and then I'm going to approach my Dr. with the idea. How does this work? You think we'd just need a prescription and take it to a local hospital? Did your Dr. give specifics - like how much saline? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 29, 2012 Author Report Share Posted February 29, 2012 Hi Naomi!He wrote orders on a script to be taken to my local emerg or the outpatient clinic for 2 litres saline infusion biweekly......he said they will probably want him to fill out more forms but this would get the ball rolling he said its the only way to help the chronic dehydration since my body cannot do it on its own even with meds....I am hoping it makes an impact Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 29, 2012 Report Share Posted February 29, 2012 Are you going to get a port put in for the infusions? You should maybe talk to your doctor about this, as your veins will wear out after a while, constantly being pierced, and sometimes being blown or infiltrated. I have a vein in my left arm that rerouted after I had a blown IV after my C section. I used to take care of the chronically ill, years ago, and those who would have a lot of IV's, began to get ports inserted in their chests for a central venous line to avoid all the needle sticks; they are also great for those who are dehydrated in emergency situations. Just asking Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 29, 2012 Author Report Share Posted February 29, 2012 I think at this point I will just see how things go regular access until the dr decides how much we are getting out of the treatments. I don't want to go through the hassle of getting a PICC or a Port just to find out the infusions arent worth it. I used to work in a Cancer Clinic and I have seen the upsides and downsides to the PICCs and Ports.......Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 29, 2012 Report Share Posted February 29, 2012 Oh wow, hadn't thought about the logistics of this - a weekly IV needle does sound bad. Guess if it actually helps, something would have to be worked out. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 29, 2012 Author Report Share Posted February 29, 2012 mine are just bi-weekly to start...he said only that for now because he has to monitor how much of that fluid my body holds on to because if you retain too much that can cause issues also with retention; ie heart failure, kidney problems.....so he felt 2 litres every 2 weeks would be safest to start with....my dehydration is very bad and chronic ...some days I only urinate maybe 5 times and I never have the urge to drink....I have to force myself and end up gagging on it half the time. Then when I do drink it just comes right back out 5 mins later so he says that is because my body has gotten used to being dehydrated so is on conservation mode constantly which apparently is not good for the bodyBren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 29, 2012 Report Share Posted February 29, 2012 Your Dr's advice sounds right - I'm going to mention it my primary Dr. when we have the conversation about this. Not trying to make things worse here. Quote Link to comment Share on other sites More sharing options...
forevertired Posted February 29, 2012 Report Share Posted February 29, 2012 If I may ask, what makes your doctor think you are chronically dehydrated? by blood tests?I am always thirsty. I drink at least 10 glasses of water a day. I also have to go to the bathroom all the time, usually within half an hour of drinking a glass of water. My lips are chronically chapped and bleeding. I get headaches if I drink less than 6 glasses of water a day. My urine is almost never clear, usually a medium yellow. If I don't drink enough, it hurts to pee. I told my doctor that it seems like I am chronically dehydrated. My doctor says I am not dehydrated because my blood tests would show a high level of sodium if I was, and I have a normal level of sodium.I am sorry to sound ignorant, but how does saline help? What does it do to help? I have seen many people on this forum say it does wonders for them. Does it only help with people who have low blood pressure? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 29, 2012 Author Report Share Posted February 29, 2012 Based on urine tests I dont put out enough fluids despite what I take in.... and on other days it runs right through me....I suffer severe leg cramping, headaches, my arrythmia gets worse, low blood pressure, syncope, etc etc....... and I literally could go without drinking for days because I just dont have that sense of thirst.... thats when I end up getting admitted to hospital and they have to fill me with 5-6 bags before I start putting fluid out. After a certain point you cannot orally hydrate enough to fix it because you are dehydrated at a cellular level and thats where saline comes in. The Iv fluids are actually able to get into the body tissues and rehydrate your system at a more cellular level...if that makes sense thats how it was explained to me hope that helps Bren Quote Link to comment Share on other sites More sharing options...
corina Posted February 29, 2012 Report Share Posted February 29, 2012 really happy for you bren! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 29, 2012 Author Report Share Posted February 29, 2012 Thanks Corina! I will be crossing my fingers I wish I could share lolBren Quote Link to comment Share on other sites More sharing options...
forevertired Posted February 29, 2012 Report Share Posted February 29, 2012 If I may ask what type of urine tests were those? I think I will ask my doctor to order those. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 29, 2012 Report Share Posted February 29, 2012 I thought you meant twice a week, not every other week, sorry . I wish you the best with your treatment! I have hypertension and have had some fluid retention, previously, and am on some medication for that also, so this is not an option for me. I guess dehydration is a way of life for me. I just drink as much as I can, balance my salt intake, and try to avoid bladder or bowel spasms! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 1, 2012 Report Share Posted March 1, 2012 I hope this is going to work out for you. There are a lot of people that probably envy you at this point .Good luck.Alex Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 6, 2012 Report Share Posted March 6, 2012 in the hospital they gave me saline IV for 24 hours straight. Didn't help much after the 1st hour. I was peeing like crazy so I dont think it helped me retain any water any better then drinking water... Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 6, 2012 Report Share Posted March 6, 2012 I wish I could share lolBrenMe too! But do you suppose we'd get arrested for "pharming" if you did? Do you think there's a black market yet for SALINE? LOL Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 7, 2012 Report Share Posted March 7, 2012 Bren - that's amazing. I saw a CFS specialist last week who recommened weekly saline - if my primary Dr. would agree to it. I was shocked she even knew about this! I'm waiting to hear more from her and then I'm going to approach my Dr. with the idea. How does this work? You think we'd just need a prescription and take it to a local hospital? Did your Dr. give specifics - like how much saline?Hi NaomiI was wondering what type of CFS specialist you see? A rheumy? A neuro? I want to get evaluated for this, as I have bone crushing debilotating fatigue, not sure if its my POTS or CFS, or if they overlap??? Very confusing. Thanks!Claire Quote Link to comment Share on other sites More sharing options...
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