Can't Get Dr To Give Iv Fluids Help

[K8michele]

Hello

I've had POTS for 18 years. I am on the waiting list to see dr. Grubb because I highly suspect hyper or mcad. I've been to Cleveland clinic and found they have a great diagnostic facility but not so much treatment.

From the beginning of this awful life stealing condition whenever I'd crash so bad I'd be taken to the ER and be given fluids it was evident how well they worked, my dad would say you could see the change start from my toes and work it's way up.

My cardiologist refuses to give me an order for saline therapy. Over the years I have tried everything. Florenif I reacted too much to and my BP went dangerously high. Beta blockers I did not react well to either. Tons of water tons of salt. Lose weight gain weight workout, whatever I was told would fix me I did it.

Gatorade worked for about 18 months. So much so I thought I could finally start my life I was applying to schools ect. Then I started having a bladder infection that would not clear and finally found out I had ulcers in my bladder from all the acid in the Gatorade. So I had to give that up and well the good I was feeling

I'm beyond frustrated I've went to another Dr in the practice but he would'nt treat with out consulting my other cardiologist. That practice is the only in the area that takes my insurance. Are there other specialist that treat this that I might try?

To go to the ER everytime got more stressful because I never knew if I'd get a good Dr or one that would tell me pots isn't real it's a lazy persons disease (yes I have actually been told that). That I don't go to the ER until I can't stay conscious and my heart is swinging from 80 to 204.

I know IV fluids work and I feel like Dr's act like I'm asking for pain meds. They are perfectly fine giving me pill after pill with all kinds of potential side effects and reactions but not saline that helps. I know the benefits would far out weigh the risk and it's confusing why this is such a fight I'm losing.

I just want to be able to feel well enough to play with my twin boys and live life a bit not confined to this bed and these walls. I know you all understand :-)

What do I do?

[ks42]

I feel your pain! I've tried at least 15 different meds, at least half of which sent me to the ER with life threatening adverse reactions. I don't retain oral fluids well - gatorade, pedialyte, salt loading, you name it, I've tried it. They work a little, but I still pass such large amounts of extremely dilute urine that my PCP finally came to the conclusion that for whatever reason I can't hold on to oral fluids, and finally allowed me to get regular IVs. That, and the fact that I've showed dehydration / acidosis on my bloodwork before, and I also had a phone consult with an out of state POTS doc who endorsed fluids for me as well. However, I'm only allowed to do 2-3 liters a month in an infusion center, to avoid a PICC or port.

If you're doing fluids more often than that, you will need a PICC or port, and there is a risk of life threatening infection and/or blood clots with these. How high the risk is seems to depend on who you're asking, lol, but this is why one of my big-name POTS docs says he will never endorse fluids except on an emergency basis - he says the infection risk is just too high and benefits don't outweigh the risks. I don't necessarily believe that's true for everyone, but that seems to be the opinion of a lot of doctors when it comes to IV fluids and POTS.

If you're not able to get IV fluids from a doctor, in the meantime, would it be possible to look into alternatives to gatorade that are non-acidic? I can't handle the acidity of gatorade either - causes ulcers for me too. I'm guessing you've probably already looked, but in case you haven't come across these: Nooma is specifically formulated with something like 30,000 times less acid than gatorade and I think actually has more electrolytes. Although, I think you have to order it online - I've never seen it in a store. My favorite homemade "sports drink" though is about 1/4 tsp celtic sea salt (which naturally contains some electrolytes) in 16 oz water, sometimes with added Elete electrolyte drops. Gerolsteiner mineral water is also amazing - lots of electrolytes, very alkalinizing, and sometimes I'll use half Gerolsteiner / half salt water mixture instead of Elete drops. I also drink coconut water for electrolytes, which is still pretty alkaline. Although, of course, I'd recommend thoroughly doing your research before choosing any of these, just to make sure they're compatible with your health issues.

[K8michele]

I'd only want them once a month just enough to get a few good days. My twins gave a rare immunodeficiency they have gotten ivs every 3-4 weeks for 8 years and never developed an infection. I just feel the benefits do out weigh the risk. I don't knuw I guess I feel like they aren't the ones bed ridden never getting to achieve what you wanted in life.

Thank you I will look into those drinks! I take eletrolight suppliments for runners now to try and help, works a little just nothing like the Gatorade. :-)

[ks42]

You're welcome! I'm not sure if any of those drinks will work as well as gatorade did for you, but I thought I'd throw them out there just in case! I completely understand about the fluids. I can actually function pretty well after an infusion, and my POTS has been so severe that I've spent most of this past year in bed, so getting out of bed and being able to live is amazing!!

And personally I agree with you - I don't think getting fluids via temporary IV once a month is a big infection risk, since they're not placing a port or anything. I've heard that some docs swear by IV fluids for POTs patients. I wish these docs would publish more literature on it so the rest of them would be less afraid to prescribe them!

[Guest ANCY]

Hello, sorry you are having such trouble, I can certainly sympathize. I've had symptoms for about 4 years and several different experiences with iv fluids. Generally they have only given me long term fluids because of inability to get adequate fluids in orally due to gastroperisis.

I was on TPN for about a year at one point with extra fluid until my PICC got infected... That was my first blood infection and since then I've had 6 more semi permanent catheters placed and 4 more blood infections. (They were placed for TPN x2, Antibiotics x2, supplemental fluid, and IVIG) I have also got an infection with a peripheral IV. The risk for infection is often the reason many drs do not want to use IV fluids as a treatment. In my case, unless it's life or death they will not put in another longer term access.

I do have a friend in my city that is in a 2 month trial period using daily IV saline as a treatment for her dysautonomia. She has a different cardiologist who has several patients trying this. She showed the dr blood work proving she has poor metabolism and the medications that they have already tried and failed. Another prerequisite for her was having home health that could manage access, for her a PICC line until the trial is up and then a port. She has seen significant improvment since begining the IV therapy.

I hope you are able to work something out with your care team. God bless.

[Christy_D]

My son was originally diagnosed by a cardiologist, but has always been treated for his POTS by neurologists. My son's neurologist was always willing to try new things. When I suggested IV Saline, he had no problem with it. A nurse came to our house and set it up so we didn't have to go to the hospital or doctors office. Unfortunately, it wasn't much help. It helped him for a day or two, but not enough to keep going through it. My son has POTS and MCAS.

Here is a link about IV Therapy and POTS. Maybe show it to your doctor.

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

Christy

[elphabalover101]

I unfortunately don't know how to help you. I was only able to get my doctor to give me IV fluids because I have mitochondrial disease along with my POTS.

[K8michele]

Thank you all for the responses it's so nice to reach out and be reached so to speak :-)

Saw my neurologist yesterday who didn't see why it would hurt for once a month iv but she said she doesn't treat pots but referred me to a cardiologist she likes to see if I can get more help than my cardiologist now is giving.

Onward to another I guess. It just gets exhausting.

[bigtrouble]

What do they put in your IV fluid. Is it the standard salt solution?

[Becia]

For over a year, I've been on IV saline, one liter every other day, for my POTS. My gp was actually beneficial in getting this therapy for me, and it literally has been a life saver. I was being hospitalized for my POTS every few weeks it seems, but in the past year, I've only been in the hospital three times for it.

I just recently had a port placed in my chest for my access, as my veins were not that great for the PICCs anymore, and hen I was hospitalized a few weeks ago, they determined the last one needed replacement. Due to how I was there, they did some research, realized I've had two before this one, and the saline was a long term solution for me, so port was my next option. I'm glad I did it, even though right now, it's very painful.

I've had cardiologists and neurologists both say I needed the saline, but my gp was the one who did it. I cannot orally take in all we need in fluids and salt (gastroporesis, difficulty swallowing), so it made sense to get the saline and some fluids this way, to my doctor. My current solution is regular 0.9% sodium chloride, but I have also used ringers lactate solution and had amazing results. The "bad" part of it, and for me, it's not really bad, is I seem to get the maximum results from the saline, if I run it slow. That way my body seems to absorb the salt and the fluids and I'm able to hold on to it longer. So I run mine over 8 hours during the day (I'm usually too symptomatic to safely set everything up to run at night, plus, if I sleep, I move and end up pinching the line), which means I'm stuck at home, but hey, that's fine.