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I like honest company and a brand called Ms. Meyers. Though I’m not sure if those are fragrance free. Melaleuca is another company that has good products.

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If you’re looking for someone to manage Pots, you may have better luck with an electrophysiologist. These are a special type of cardiologists that usually manage autonomic disorders. A general neurologist may or may not have the background, they would typically work with general neurological issues like migraines, seizures etc. 

Some people get symptomatic after eating because blood rushes to your stomach to help digest food. When this happens it can trigger dizziness, BP issues, etc. Not sure if this is what’s happening with you, but thought I’d mention it. 

My doctor told me about a week when I first started it. I noticed a difference around 5 days or so. Are you drinking lots of water and increasing salt while taking it? Florinef only works if you’re increasing your fluid and salt intake. 

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POTS in hawaii

The pill expands blood volume. For some it can raise your BP...if it’s already low that can be helpful, but for others it could be too high. 

Your doctors seem to be saying you don’t have POTS or NCS. However, you could have other forms of dysautonomia like autonomic neuropathy without having Pots or NCS. A tilt table is typically for those, while there are other tests for your other symptoms. A rheumatologist would be a good place to go to rule in or out any symptoms and they could probably do the ANA there. A neurologist that has some understanding of autonomic disorders would also be helpful. Not all are experienced in autonomic disorders so you may need to check around. They could also look into the fasiculations. Can you go to a large teaching hospital in your area? They may have staff with wider experience in dysautonomia.

I know it’s frustrating, many of us have been in your shoes. It can take a while to get a proper diagnosis, and to overcome the ones who keep suggesting it’s psychological. Don’t give up, keep searching for answers!

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Ok, I’m glad they tested the IgA antibody. I’m sorry to hear about the sepsis, hope everything gets back on track soon. 

Hi,

I’m sorry you’re having such a rough time. I’ve been on ivig for 6 years for CIDP. It hasn’t helped my pots symptoms though. Ivig can cause a lot of side effects, and I have read that pulmonary embolism can be one of them. I had a thought...your footnote says you have an IgA deficiency. Were you tested before you started Ivig? I was tested for this before I started and I remember the doctor said that a deficiency can cause trouble with Ivig. I don’t remember what, but he said that you shouldn’t get it if you have the deficiency.  It may be something to look into. 

Also, maybe they can play around with the dose, like dividing it up over two days, slowing the infusion rate etc. I also find that drinking water before, during and after the infusion really helps.

Hang in there, hopefully they will figure it out soon. 

Have you tried exercising on a recumbent bike? This has been really helpful for me. I am housebound currently but was bedridden for several months when I first got sick. I think the bike is what helped me to be able to get out of bed. Swimming is also supposed to be helpful since the force of gravity is less while in the water. 

Thanks Corina  

Thanks for the replies. I’ll give it a try and see what happens.

Has anyone tried wearing an abdominal binder? My pcp wants me to try one. My main problem is dizziness when upright— I don’t have much time before I’m dizzy and I’m housebound as a result. I was wondering if others have tried this and what your experiences were. Thanks

I usually get dental anesthetic without the epi in it. It works but it wears off faster so they have to give me a couple of injections to make it through the procedure. I know you’re a physician yourself, so it wouldn’t hurt to touch base with your team beforehand and give them a heads up about your concerns. Even if they don’t know about POTS, they would probably take it more seriously since you are a physician. A lot of people are allergic to the epi in anesthesia so I’m sure they have an alternative. Hope everything works out ok. 

Thanks for posting an update. Once you hear from your doctors about their blood tests and treatment recommendations, please post again. I’m really interested to hear what their recommendations will be. 

I’ve  thought about the cell trend test myself, but wasn’t sure what to do once I had the results. I’m already getting ivig for a separate condition, and in my case it has not helped my pots symptoms. If there is something else that helps counter the antibodies, I’d really like to know. 

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I have small and large fiber neuropathy, most of the pain is in my hands and feet. I do have numb spots on my legs but not my hip. Have you thought about meds like gabapentin? Maybe your doctor could start a trial and see if your pain responds? 

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Yes I’ve been able to tolerate ivig, but still have some side effects after the infusion. If you try it, make sure you drink plenty of water a few days before, during and after the infusion. It can make the side effects worse if you’re not hydrated enough. 

I went to Vanderbilt and had a good experience. They only offer consultations though, not regular follow up care. It has been really helpful to have an official diagnosis from them.

I have another disease that causes small and large fiber neuropathy and have been on ivig for almost 6 years. It’s been really helpful for the neuropathy but in my case has not helped my symptoms of Pots. 

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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.