I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) six years ago.
Over the past nine months however my condition deteriorated significantly to the point where I could no longer walk; I could only sit up for a very short amount of time and I would spend most of the day and night sleeping. My heart rate would randomly go up to 200BPM for no reason and my blood pressure would drop. I had no quality of life at all and I was basically just existing in my bedroom 24/7.
At this point my Cardiologist recommended weekly IV saline infusions to try to help me regain control over my symptoms.
I now have two litres of saline every week and it has completely changed my life.
For thirty six hours after the fluids I can walk around independently and I experience hardly any POTS symptoms.
It is the first time in six years that I can be on my feet for longer than a few minutes.
Even though it’s only one day each week this has been incredible and greatly improved my quality of life. For a day I can walk around my house, spend time in the garden and carry out physiotherapy sessions.
After a month of regular IV fluids I have begun to notice the long term permanent improvements starting to take effect. My fatigue has massively improved; I am no longer sleeping for most of the day. The severe headaches I have suffered for six years are considerably better. I can now sit up for longer periods of time without becoming symptomatic.
IV fluids have also enabled me to carry out regular physiotherapy sessions each day and I am finally getting stronger.
By continuing to use IV fluids in combination with physiotherapy I can hopefully build up to having a normal life again.
I still have a lot of dreams that I want to achieve and for the first time in six years with the use of IV fluids and physiotherapy I finally have hope that I might be able to do this.
Thanks to IV fluids I no longer just exist, I am living again.
Thank you to Sam for sharing this brave and empowering story.
For more information on POTS, please watch this video:
Keywords: POTS; IV fluids; I.V saline
Thank you for posting this! I’m just now getting into the more severe symptoms of POTS and am seeking an official diagnosis, but this gives me hope! Thanks!!
Thank you for this post & look forward to more regarding POTS. I am currently going through all different tests through my cardiologist. He is currently sure i have POTS as i have all the symptoms but difference with my symptoms compared to the normal POTS symptoms is that i have low blood pressure aswell as low heart rate. When i stand BP drops even lower, heart rate may increase slightly but still low or borderline normal at its best.
Symptoms started when i had Gastric Sleeve surgery in 2016 but now gotten considerably worse & effective everyday life.
Iam so happy for you iwish you are doing well
For how long did you take the iv?
I have suffered since 11/2019 I had a horrible episode as I call it and was diagnosis with vestibular disorder. I truly believe I was miss diagnosed and recently since having covid I am sick again with the same exact symptoms. I do suffer from very low blood pressure as well. I recently did a tilt table test and was confirmed I have pots. I was opposite and when lying back I thought I was dying. I wish you were in va
Thank you for sharing your story. I am glad it worked for you and you are feeling better. IV treatments really are very helpful. I have never experienced POT but I did receive IV treatment for a terrible common cold and I was as good as new with in just a couple of minutes of receiving IV treatment.
Thankyou for sharing your experience of POTS & IV fluids. IV treatments really are very helpful.
This is my first week of receiving IV fluids. I haven’t noticed a change in my symptoms. Did it take you a month before you noticed a positive change?
What Dr in the UK will prescribe IV fluids for POTS? Is it Dr Sanjay Gupta? I noticed that they were really useful for my POTS when I was in A&E for a few days
I’m so thankful I don’t have POTS and even more thankful to have access to Dr. Gupta’s thorough and easy to understand explanations and “teachings” of heart related issues, including POTS. I was diagnosed with A FIB and discovered Dr. Gupta seeking information. I’ve learned so much from him about A FIB and many issues. It’s a habitual practice now to seek his expertise and knowledge because I treasure them. Thank you so much, Dr. Gupta, for giving your time and knowledge so generously!
Okay, stupid question…
Why anyone who is conscious and can swallow normally and who’s organs function fine would need to resort to IV saline instead of just drinking fluids that contain enough electrolytes and salt.. be it
home made chicken broth or likes of that or even salty water?
What is the point of having it intravenously?
Just don’t get it because every time you get a poke in the vain, there is a chance for problems.
The majority of pots patients have gastroparesis or dumping syndrome. So my GI system doesn’t work fine. I throw up if I try to drink the amount of fluids I need in a day.
It’s not just about hydration or electrolytes but increasing the actual blood volume. Just drinking electrolytes doesn’t have the same effect as it goes through the digestive system and most of the liquid volume is excreted.
Dysautonomia can cause gastroparesis and gut malabsorption
Nobody knows why yet, but a high percentage of people with POTS have low blood volume (about 10% lower than it should be) despite adequate oral intake of fluid and salts.
It may be to do with the system that regulates blood volume not working properly.
There have been a few research papers on this topic. Here’s one thay lays it out pretty clearly:
Another possibility (no published research yet that I can find, but it has been discussed informally) is that the low blood volume is caused by increased vascular permeability – basically, leaky veins.
Sadly, it is very hard to test blood volume because the equipment to do so is no longer available. Only a handful of hospitals still have the capacity. New testing methods and equipment have been developed in recent years, but uptake has been slow.
How do you get weekly iv saline if you are not in Yorks or under Dr Gupta? Thanks
It’s great to see this effective therapy being used to help people whose illness hasn’t responded to other medications and interventions.
Another possible option for people with refractory orthostatic intolerance is IV albumin. Some preliminary research by Dr Zaeem Siddiqi and colleagues in Canada showed that people with POTS who don’t respond to IV saline or LR can still improve on IV albumin. The mechanism isn’t known yet, but it may have to do with elevated vascular permeability, making albumin easier to “hold onto” than saline.
Also important to point out that, with any medical intervention, the doctor and patient have to discuss and weigh the risks and benefits.
This patient was bedridden, and, as Dr Gupta is an excellent doctor, we can assume that all other possible treatments and interventions had been tried prior to him ordering IV saline.
IV saline carries a risk of infection and vein complications. But being so ill that you are confined to your bedroom and can barely sit up also carries a risk.
Now the patients feels better for a day after each infusion and is able to be somewhat mobile and undertake physiotherapy, and they are also noticing improvements in their symptoms generally as well as getting stronger.
I would love to see Dr Gupta publish this story or similar as a case study.