Clb75

Not sure what’s in the eye drops they gave you but assuming that is a type of anesthetic, some of them have epinephrine in them which can cause a flare of symptoms. Talking to a doctor about the anesthesia options and how it reacts with dysautonomia may be helpful.

Birth control expands blood volume which can be helpful in Pots. The other symptoms are still tough to deal with though. Hope you find something that helps.

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I know, lol. I’m on several, so it’s been inconvenient when I’m trying to get my meds all at once. They did say that you can fill it earlier with a doctor’s authorization, I just haven’t tried it yet.

I’ve been on gabapentin for years, but it’s prescribed by a neurologist for a separate autoimmune disease I have that causes neuropathy. The only issue I have had is that the pharmacy will now only let me refill it every 29 days, where as before I could fill it a few days or even a week ahead of time.

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I’ve been on acebutolol for several years now and have had a good result without any side effects. I tried atenolol and betaxalol before that but had problems with both. I agree that it’s definitely trial and error, hopefully you’ll find something that works.

Wow, sorry it’s been so difficult for you. I hope you find a solution.

Hi, I’ve had a port for a few years for ivig due to CIDP. I don’t have any experience with home infusions, but the port has been really helpful and made the infusions easier. My veins were getting bad, before I had it placed the nurses had to stick me around 7 times before they got a vein that would work. Have you considered a picc line? If your doctor won’t go for a port, maybe they would consider a picc line instead? Though I think it’s easier to get an infection from a picc compared to a port. Another thought...have you tried looking up journal articles about saline therapy in pots? Maybe if you come across several articles justifying saline therapy, it could help change your doctor’s mind.

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Thanks for the heads up. I’m sorry this happened to you, it’s a shame what some practices will do in order to get more money. Do you have any way to fight this? What about the state department of health or whoever accredits hospitals in your state? You can maybe report them for unethical billing practices. It seems that they shouldn’t be able to charge you the uninsured rate when you do in fact have insurance.

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Yes, I think losing blood volume is very important to consider! My neurologist doesn’t think plasmapheresis would be a good idea for that reason. Plus it’s very invasive, he told me you have to get a catheter placed plus the first treatment is on an inpatient basis for about 10 days. You’re right about this being a new avenue for pots patients, I’ll be very interested to see how this develops, especially now that the antibody test is available from Germany.

Hi, I have CIDP, it causes motor and sensory neuropathy. I had it about 2 years before I got POTS, and I suspect the small fiber nerve damage from it along with it being autoimmune in general may have been a trigger for my POTS though I don’t know for sure. Ivig has been working great for CIDP , it just didn’t do anything to prevent the onset of pots or help me now that I have it. Ivig is very hard to get insurance approval for, I think it’s smart to get the test for the antibodies so you will have more evidence to push for a reason to try Ivig. I’ll check out the link, thanks! Hopefully the shipping is sorted out, Good luck with everything!