Clb75

There is a clinic in Mobile called Victory health that sees people with low income or no insurance, you can google them and see if you meet their qualifications to be seen. Getting stuck with a large ER bill is no fun, so seeing a specialist or even a primary care may be worth it. Getting a proper diagnosis is so important, I know it's hard without insurance, but if it is POTS I agree it is not likely to get better on its own. Good luck!

I know it's frustrating but it seems like your doctors are trying hard to find answers for you. Good luck!

I get the same mottled appearance on my feet and sometimes legs if I'm standing for a few minutes or especially after a shower. My doctor told me this is common in pots because of the blood pooling but didn't go into specifics. If you google " acrocyanosis and POTS" there are several articles that come up describing skin changes seen in POTS, and a few pictures too. Maybe you can show this to the doctors. Midodrine (10 mg three times a day) and elastic knee high compression stockings have helped lessen this in my case, but it hasn't gone away completely. I keep my feet elevated when I'm sitting down too which can help. I hope you find some answers!

Thanks everyone for your replies. I did start with a small dose and agree since having POTS I am more sensitive to medications. I had no idea that one dose of an SSRI could have such an intense effect. jpjd59- I'm sorry to hear that happened to your daughter. I know how scary that must have been. Do you remember how long it took for it to get out of your daughter's system?

I know there has been a few posts about ssri's and any benefits to them. I was debating over the last two weeks if I should take lexapro or not, and last night took my first dose. This morning I woke up with dilated pupils and presyncope episodes every time I tried to walk. I went to the ER and my BP was 189/99! There wasn't much they could do besides saline so I'm home now. I'm still really dizzy when I walk and they said it may be 48 hours until it's out of my system. I was really hoping this would be something to help improve things but I'm definitely staying away from ssri's.

Thanks for your reply, it's always helpful to hear about others' experiences.

I was just offered lexapro and am still deciding if I want to take it. I was told it helps balance the whole autonomic system, but most people seem to say it only helps with one thing like heart rate or blood pressure. I'm already taking other meds for those and don't want to take another one that is unnecessary. My main problem is dizziness, despite the fluids and cocktail of meds, I still can't be upright for more than 30-45 minutes. Has anyone had any luck with ssri's improving the whole picture, not just one or two symptoms?

If he's not getting saline after the ivig is done, you could ask for that as well. It helps to clear it out of your system and cut back on side effects. I was told Ivig is like oil going into your veins, so the saline helps to clear it but you still need to drink the water too.

I've been getting these for a little over two years for an autoimmune disease and was just diagnosed with POTS in December. I was told to drink water to avoid headaches that can come with Ivig. I usually drink 6 tall glasses of water, straight water nothing else, throughout the day starting two days before the infusion, then sip water throughout the infusion too. I then get a bag of saline after. Once I'm home I drink two more glasses of water then another one the day after. This has worked out for me so far, but I know everyone is different. If he's having side effects, slowing the infusion rate down can also help sometimes too. Since having POTS, I've had some blood pressure issues with Ivig I didn't have before. It can temporarily lower your BP as a side effect during the infusion then typically comes back up, but in my case it started dropping really low because of the beta blocker. I'm on florinef now so it's come back up and the infusions are running smoother. I also notice when I drink straight water without gatorade or tomato juice, I feel worse throughout the day, but I don't want a post infusion headache either. It's a balancing act I suppose.

I just started florinef a few weeks ago. I have troubles with dizziness too. I can sit up for about 30 minutes before it gets so bad I have to lay down again. I'm not able to work or care for my two year old like this and I'm searching for anything to help. I'm taking a beta blocker and midodrine already but the doctor added florinef to increase my blood pressure and blood volume. I started at .1 and it took about two weeks for my BP to start coming up. This week I just started to increase it to .2 mg and the only thing I've noticed is a bloated stomach! My heart rate is pretty much the same because of the beta blocker but I might back down if the florinef looks like it's working ok. I just hope it improves the dizziness, that's my biggest problem right now. I'm glad to hear it's helped others, I've mostly heard good things about it.

Hello, I just started on this a few days ago to see if it helps with my dizziness. I am still getting dizzy after about 30 minutes being upright. I am hoping this will help. How long does this take to start working? Any tips on how to increase salt in your diet? I'm drinking coconut water for potassium and fluids is this enough? Thanks!

Mine ordered the ones for Pots, but I only had the outpatient autonomic tests which was less tests. I thought I was getting more but I guess they only do so much if you're an outpatient.

My primary care ordered the autonomic tests, and I had them send previous records. They already told me I was taking the tests before I came for the appointment though, so it sounds different in your case. As for the other doctor, You can go online to the medical center's website and call the appointment line for the department you need and try to make an appointment for the time you will be there. They book up quickly so it may be hard but it's worth trying. I hope it works out, good luck.

I went to the clinic last week. I live close by so I split the visit over two separate days. I went in the first day for testing. Be sure to read through the instruction packet they send, at the bottom of one of the pages they want you to not eat anything three hours before the tests, hold your meds the day of, and not have any caffeine for two days. I'm not sure what types of testing you will do, I only had a tilt table and some breathing tests. They measure your pulse and blood pressure while they are doing this. This was about an hour. I met with the doctor later for the results which was also about an hour. They go over the results and give you recommendations etc for you to follow up with your regular doctor. I'm not sure in your case how they will handle the other doctor you want to see. I know they are booked out pretty far in advanced so you may want to call the clinic back and see how they handle this. They may be able to work you in for an appointment if they know you are coming.

Thank you all for your comments. I see my cardiologist in a few days and will talk to him but I wasn't sure if this was something that goes away with the right treatment or something that is always there. I guess it's different for everyone. I'll see what my doctor says Friday.

Hello, I'm newly diagnosed with POTS. I'm on atenelol and midodrine and can sit up for about 40 minutes before I get dizzy again and have to lay back down. I'm drinking water, and trying to eat more salt too. Does the dizziness go away? Any ideas on something else I can try? Thanks.