Improvement of POTS from IV fluid therapy

[Pistol]

I am starting this thread to list the major improvement I experienced from weekly IV fluids for hyperadrenergic POTS and welcome everyone who has found symptom relief from this treatment to respond on this thread. 

I have suffered from refractory hyperadrenergic POTS for 9 years and have tried numerous recommended medications without major improvement. Before starting the IV fluids I was mostly chair- and housebound, unable to participate in any activity that required extended periods of standing or walking ( like shopping, social events,  church etc ). I had problems sleeping or doing minor house chores, cooking, showering, spending time out-of-doors; I had severe GI issues and was taking PPI/ Zofran/ Zantac/ Compazine/ Carafate for the symptoms. I had no appetite and had to eat 6 snacks a day instead of meals but kept steadily gaining weight despite not eating well ( this has proven to be fluid retention weight ). I also suffered from frequent urination and bladder problems. Chronic fatigue, brain fog and lack of energy made life difficult and resulted in a degree of depression. 

I had chest pain, symptomatic hypertension ( up to 160/110 ) as well as hypotension at times, OI, syncope, autonomic seizures ( due to sudden sympathetic overcompensation with cerebral hypoperfusion ) and many other cardio-vascular symptoms. When I experienced ANY stress ( illness, procedures, temperature fluctuations, overstimulation, over-activity etc ) I became unable to stand, bedridden and hypertensive. This caused many ER visits over the years that ended up too often in Observation stays in the hospital for IV fluids, I ended up being hospitalized every 6-8 weeks. Every time I was given IV fluids my symptoms would miraculously disappear, BP and HR improved, chest pain disappeared, urination decreased to more normal amounts, strength and energy returned. I would essentially crawl into the hospital ( where I had too many seizures and syncopal events to count while waiting for fluids ) and would walk out skipping and hopping. Unfortunateley this seemed to be a temporary effect and I would over time regress again. 

Finally my PCP and cardiologist agreed and approved me for a port implant in September ( after many pleas and begging from my side ). As of October 2018 I am receiving 1 l LR IV over 8 hours once weekly at home and I am a changed person. Here are the improvements in my symptoms and quality of life that I have experienced since starting the weekly infusions: 

- BP and HR are within normal range ALL OF THE TIME. I have not had hypertension since beginning of the fluid therapy. I was able to stop using nitrate patch for chest pain since I have not experienced   chest pain since.

- Fatigue and brain fog are gone, I have energy and am no longer depressed. 

- Exercise intolerance has improved, I am receiving PT and have been able to exercise moderately but daily with great success, OI has improved ( within limits ). I am able to perform daily mild house    chores without exhaustion( provided I keep brief periods of rest ) . I am able to go on short trips ( church, shopping ) in my wheel chair without needing 2 days of rest afterwards. I am able to stand longer before my symptoms of OI start. 

- I have lost 5lbs of fluid weight in 2 months, this being contributed to improvement of my fluid balance ( less retention ), less diuresis and  increased exercise. 

- My GI issues like GERD and nausea have improved so much that I am now only taking PPI, all other GI meds are no longer needed. 

- I am sleeping well throughout the night most nights, without continuously waking to urinate or due to insomnia, I am achieving REM sleep most nights. 

- I have had 0 syncopal episodes or seizures ( used to have them anywhere from several times a week to monthly ). 

- I have tolerated several triggers without a flare ( colonoscopy prep, respiratory infection ). In the past these events would send me to the hospital. 

- I can take a shower standing up. I can cook a meal. I can vacuum one room without needing to take a break . I can take the dog for a short walk. I can watch a whole movie. I can enjoy company without needing to lie down. 

- Yesterday I danced because I felt so good. And nothing bad happened. 

Please - I would like the medical community to recognize this proven treatment as a way to considerably improve the quality of life in patients with refractory POTS. I am proof of that. 

[RecipeForDisaster]

This is wonderful. My experience has been very similar except for the port, hypertension, and seizures. I have my own version of this story-but I don't get fluids as often as I would need to to really feel better. I'm grateful for having them on hand and knowing I can get somewhat better anytime I get them. It was very surprising to me when I noticed my mood improving from the fluids-I was doing okay before, but was clearly happier after fluids.

 

What a shame it is that people are denied this very effective, simple solution. Of course it won't work this well for everyone, but why not try if you're doing that poorly? The amount of work we have to do to convince doctors to give us access to fluids is not fair.

[Clb75]

Thanks for the update, I’m glad you’re seeing so many improvements! Can you tell me more about the administration...you mentioned 8 hrs, is that with an infusion nurse at home with you? 

[Help4Me]

i  have  believed  this to be true  for a long time since having   iv   myself   no  matter  how   much  i drink  i cant get hydrated   i think  the  fluid i drink is not going to my cells for some reason  they  keep sayong drink more but i am    and  it is  constant  drinking it does not work   

[RecipeForDisaster]

For me, I have no port so I get a peripheral IV started each time. My husband is a nurse so he takes care of that. Once it's running, I am independent (only cause I can't start an IV on myself, although I am qualified and trained to... I'd need another hand) and run fluids as slowly as I can, making sure I'm done before I go to bed or have to go somewhere. I normally do 1500mL over about 7 hours. The slower I go, the more benefit I get. I could remove my own IV and can control the rate with dial a flow while it's running... getting around with a pole is a pain but it's doable. 

 

A visiting nurse would usually just get you started and you'd either disconnect and flush your IV after, or remove it. It'd be unusual for them to stay the whole time, but then again the "normal" rate for this is 250-333mL per hour so it wouldn't take that long.

[bombsh3ll]

It's interesting that some people find IVs more effective run slowly. I can only get them occasionally & have always had a litre over about 1-2 hours for logistical reasons. Also, I thought getting it in quicker would be better in order to try and exceed the rate at which I pee it out, but even then most of it is in my bladder before the bag is done so I may as well be tipping it directly into the toilet. Maybe next time I will try a longer infusion period.. Perhaps retention is improved at a lower rate. 

B x

[Pistol]

@Clb75 - I have a nurse come in the morning to access my port and I run the fluids over 8 hours, then de-access the port myself. If I need to I can run up to 3 litres over 24 hours (if I am feeling poorly). -- Many people can get the fluids in an infusion center with peripheral access ( normal IV ), but in my case I live 1 hour away from the nearest hospital since I live in a very rural area. We tried weekly infusions in town with a peripheral IV ( 1 l over 2-3 hours ) but it did not provide the long-lasting improvement as the 8-hour infusions. Hence the port and home IV's. For anyone in a city a trip to an infusion center would probably recommended first, since ports have risks. 

[Ragnar]

Please - I would like th e medical community to reco gnize this proven treatment as a way to considerably improve the quality of life in patients with refractory P OTS. I am pr oof of tha t .

I'm so pleased to hear that IV saline has such a good result for you. Unfortunately your comment above rings true for me. I've presented various papers, Grub et al, to the two 'specialists' treating me and they won't even take them from me let alone read them. Their opinion is that there is no diffference between oral fluids and those delivered by IV.

Those of you who have had to persuade your Doctors to try this therapy how did you do it?

 

 

[Pistol]

@Ragnar - I happen to have a very good PCP who has been with me sine my very first syncopal episode and he knows that I am capable of doing my own research ( I was a RN before becoming disabled ). So I presented him with articles, stories from people on this forum who get weekly infusions etc. But what mostly did all of the talking was that he could see with his own eyes how miraculous the effects of IV fluids were on my BP, HR and general well-being every time I ended up in the hospital. So when eventually a hospitalist refused to put me in the hospital for fluids because I "could drink " and I ended up in the ED with seizures and was admitted anyway … he finally agreed to let me have the port and home infusions. So in other words: persistence, self-education and nagging. That is what got me there.  

[RecipeForDisaster]

Repeat explanation of why this would help and a request just to let me see if it helped. All of my doctors were unwilling to prescribe it until my kind hematologist said "okay". That was after I suffered through a week of mostly being on the floor, blacking out and not being able to eat or walk. He knew there was nothing else that could be done for me and he has a heart.

 

One cardiologist said the same, "if you can drink you don't need IV fluids". Now that he has heard of how helpful the fluids were, he's willing to take over prescribing. Aggravating!! It took me months of hard work to be able to try it.

[MomtoGiuliana]

IV fluids has become standard therapy for POTS patients in my community.  Considering I am in a rural area this is kind of surprising.  When I became ill again with severe POTS this year, I was offered IV saline therapy almost immediately.  I live 5 min from the hospital/infusion center which made it very easy too.  My husband would drop me off in the AM, go to work, and pick me up at lunch time.  Typically I was getting 2 bags over 4 hours 3 times a week.  This very aggressive approach did seem to help me a lot.  After each session, I was far more stable/felt better.  At least able to sit up comfortably.  After a few weeks I was able to walk into the infusion center rather than in wheelchair.  In 6-8 weeks I felt tremendously better and was able to go back to work.

There were several other POTS patients also getting this therapy at the infusion center.

It really was like a dream come true after having had severe POTS in 2002 and most doctors did not understand what was wrong, or how to treat my condition.  The nurses at the infusion center seem to understand POTS and respect how severely affected patients are.  I so wish this were available to every POTS patient who could benefit from it.

That said I do know of POTS patients who have received intensive IV saline therapy and not seen much improvement.

[yogini]

My doctors did not give me IV therapy when I was sick.  I did have an IV a couple of times in the hospital and felt much better.  It does seem like a very good option, especially for people who don't respond to medicine.

[Ragnar]

Funnily enough I've just come back from A+E, I've had a severe headache for the last three weeks that suddenly got much worse, turns out my neck and shoulder muscles are all in spasm. The Doctor treating me had one POT's patient who had had IV saline and benefitted from it. So it is available here. I'll go armed with this info to my GP.

It seems such a simple and risk free procedure, at least to try it at first, with out a port etc.

Here's hoping!

[Pistol]

Update: as of today I have had weekly infusions for 3 months and am still free of ANY seizures or syncope. That is my personal record!!! And I have been able to stop my nitropatch that I was prescribed for chest pain ( angina ) because I no longer have chest pain. And my BP has been perfectly controlled. I believe IV therapy should be a much more widely and liberally used treatment, whether as an emergency intervention in acute flares or preventative ( as in my case ). 

[MomtoGiuliana]

That is great news.  I agree it should be more widely used.  It helped me tremendously last year too.

[KingConnection]

Great thread @Pistol. I'd love an update if possible. 

[Pistol]

@KingConnection - still doing great. Had a little flare from standing too much 10 days ago and had to be down for 2 days. I got my fluids earlier in the week to treat this and -- brand new!! All the symptoms went away and I could be active again. Still no episodes or syncope - nearing 4 months!!!

[Bluebonnet08]

That is awesome!  I have been using IVs as a treatment for almost 3 years.  I have seen major improvements in my POTS episodes and ME/CFS by using them.  I have to use lactated ringers (NOT saline) or I do not get the results.  The saline actually causes problems, I've found.  I've done some research into the two, very interesting.  

I get 500ML of lactated ringers every 6 days at a Hydration Clinic.  I wish I could go longer in between, but while Im nursing it's not possible.  

My benefits are:  significantly decreased POTS (tachycardia almost completely managed with IVs), increased energy, less crashes, does improve my mood (depression) significantly.  I have seriously gone into an IV crying and feeling very depressed and sick and left feeling almost "normal"... well, at least more normal than usual.  I would never, ever go back to living with these horrible diseases without this treatment.  It is VERY VERY important (personal opinion)... but there are also some studies that show it helps people with POTS and ME/CFS.

I do sometimes experience side-effects - sometimes some weight gain immediately following an IV (fluid retention), irritability following an IV, sometimes fatigue/jitteriness for a day after the IV, sometimes not.  My "best" day is usually 2-3 days after the IV.  

Keeping my ferritin up has also decreased my POTS episodes.  

[Pistol]

I agree with @Bluebonnet08 - in my case as well LR is better tolerated than NSS. With NSS I have fluid retention whereas with LR I actually LOOSE fluid weight during the infusion, lasting several days. 

[CarolineEJ]

Thank you for this thread. My daughter has POTS. She has gone to the emergency room for fluids twice which helped both times. Orally consuming her meds and fluids caused her so much nausea and accute stomach pain. Her cardiologist and gastro agreed to an NJ tube. (Naso-jujenum?) It basically goes through her nose past her stomach into her intestine. She gets 1.3 liters of fluids through the tube over 12 hours every night. She also takes her meds (crushed up and mixed with water) through the tube. She has had it for two weeks and it has helped a lot. But her nose is sore and I’m not sure how sustainable it is. 

Staying in bed for 12 hours to get fluids was very doable at the beginning because she was in bed so much anyway. But now she has more energy, so it’s harder to stay in bed as long. But if she misses her fluids (as she did last night) she feels much worse. 

[Pistol]

@CarolineEJ - would it not be easier on her to get her fluids IV? I do understand that current consensus is to avoid long-term IV fluid therapy for POTS due to the considerable risks that come with long term IV access ( blood clots, sepsis ). But in your daughters' case her quality of life is affected if she can not get out of bed to receive her fluids via tube. For me my energy returned once I received the fluids weekly and I am able to exercise more, be more active and can function more. This in turn improved my exercise tolerance, social life and just general well being, I no longer feel depressed. 

38 minutes ago, CarolineEJ said:

Staying in bed for 12 hours to get fluids was very doable at the beginning because she was in bed so much anyway. But now she has more energy, so it’s harder to stay in bed as long. But if she misses her fluids (as she did last night) she feels much worse. 

That makes me feel as though she could benefit from IV therapy b/c I do not have to lie in bed while receiving the fluids - I am attached to a pole but can still do things around the house. And once I am off the fluids I am a changed person!!! It also has greatly improved my anxiety b/c I have not been passing out or having seizures, so I do not have to try to constantly triage my activities out of fear to have an episode. ( If that makes sense ). --- I wish the best for your daughter and hope she will not need the NJ tube, it sounds terrible to have to ensure that long term!!!!!! 

[CarolineEJ]

Thanks Pistol- her doctor did not want to do the iv port. We will definitely discuss the possibility again. We need something that is sustainable long term.

The good thing about the NJ tube is that she can hook up by herself. We are going to talk to the doctor about increasing the rate (and decreasing the length of time) for the fluid intake. 

[Pistol]

Another update: had cardiology follow up today: able to decrease Diltiazem from 240 mg to 180 mg because since the weekly IV fluids my BP is running on the LOW side!!!!! Also I am just short of 5 months without syncope/ seizures/ hospitalization/ ER visit.  Current research does not recommend long-term IV fluid therapy for POTS ( just short-term and emergency fluids ) but in my case this was never enough to permanently improve my symptoms. How much more proof is needed to show that long-term IV therapy IS effective in severe cases? 

[RecipeForDisaster]

I'm so glad you are proving us right. If just a few thousand more doctors are convinced, we'll be in good shape! I'm so happy it's been so helpful. I know that if I could get my fluids more often, I'd have a much better and more normal life.

[p8d]

Congratulations @Pistol! That’s awesome news.  Decreasing a med?  I am jealous!  I will definitely be asking about IV fluids at my next neurologist appointment.