iheartcats

These sound like they've really helped some people!

Where do you get them in the states? And insurance covers them sometimes?! That'd be helpful!

From reading through the boards, it looks like a lot of you hold down full time employment.

Do you have any tips on getting through the day and keeping POTS somewhat under control? I was recently diagnosed and I'm doing the fluids/salt and some days are much better than others. Unfortunately, a Flu Virus has made things miserable and I've been out sick for 3 days (which just cannot be a recurring thing for me as I only have a few sick days a year).

I can't afford not to work - I'm sure there has to be others who are in the same situation.

Fortunately, I have a mostly-desk-job and am thankful for that. I don't think I could handle a standing job.

Are there medications that have made things better (or worse) for any of you? My doctor suggested Midodrine...does anyone have any feedback on that?

Any other tips on 'getting through a work week' are appreciated!

I've been suffering from a bad flu virus all week and my POTS has been bad...my primary care physician said virus/fever will often raise normal people's heart rates so for POTS patients it's even worse.

I've been trying to push fluids/salts, as advised, but it's not easy when you don't feel like drinking/eating!

Has anyone on here tried Nasacort AQ? It's a nasal spray for allergies, but it also supposed to help congestion. My doctor gave me samples so I'm thinking of trying it because the congestion is unbearable.

Sandy - Did they give you any additional advice dealing with virus/infection and POTS?

Welcome to the POTS gang!

There is so much to learn and I am sure you will find a lot here to read through. It is great that you will be ready for the February appointment...are they going to discuss a full autonomic workup with you? (Remember to take that list of questions with you.)

Sometimes, after a thorough workup, they will have more information and can come up with a more personal treatment plan for you.

I can't do any meds so I have a "manual" treatment plan. I do the layers of compression, the additional vitamins, water and electrolytes and have a seat cane more for the seat than the cane.

I hope you find a great medical team to help you and we are here for you too!

best regards,

tearose

Thank you!

They told me to expect to be at the appointment for 'hours' - but they don't go into what details of testing they'll do. I know they don't do Tilt Test (at least not the first visit because that requires pre-authorization).

It seems like once you go through the testing, appointment, etc. the doctor works with you on a treatment plan since it varies so much by individual.

The seat cane sounds like a good idea - I've had to 'crouch' waiting in line and I know people are like, what is wrong with her?

It's still hard to get my head around all this - and my husband doesn't know what to think at this point...pretty much just get it treated and get better. So I hope that works!

What are layers of compression?

Cheers,

Cat_Lady J.

I sometimes have this and always thought it was just sinus/allergy and I kind of just go about my day.

So this, too, can be POTS related? I wonder how POTS causes facial pressure?

I appreciate everyone's comments and it's great having a place to discuss this. No one I've talked to so far has even heard of POTS - so this board is just great.

I'm going through all the information here, and am preparing a big list to discuss with my doctor.

Again, I appreciate everyone's insight.

Hello, Everyone,

I've been reading through the board to gain insight into POTS. I was diagnosed this week by my electrophysiologist after years of on and off symptoms.

What really triggered my visit and diagnosis was the extreme increase in heart rate upon waking/standing. I've also had IBS (better now), frequent urination (how I wish this would go away!), migraines, sleep problems, etc.

I hadn't heard of POTS before and when I went home and researched, my symptoms made more sense. I still can't get my head around how one thing (POTS) can cause so many other issues.

I'm seeing a specialist in the area in February, but my hopes are to avoid medication. I've increased my water and Gatorade (thank goodness for G2) intake, eating more salt (I'd cut down in the last year), etc. Has anyone had luck treating/improving POTS without medicine?

I am a bit confused about what medicine does what and what side effects to expect. If anyone can share info with me I'd appreciate it so I can fully discuss the options I have with the specialist.

I do get fatigued, but I try to push myself as much as possible because I know it's important to stay active and hopefully will be able to get on an exercise regime after seeing the specialist.

This has been a shock to me this week...I've only told my family. I don't even know how to approach it at work!

And finally, has anyone had issues with insurance coverage of POTS? I have known people with Fibro and CFS who've had to go through many hurdles with their insurance.

Thanks for all your help.

Cat Lady J.