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New Pots Diagnosis


iheartcats
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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.

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Hello Cat Lady J,

welcome to the POTS club. Sorry to hear that you have got POTS but you will find lots of useful information here - both in old posts and on the main DINET website.

There are basically 3 classes of medications:

a) ones to reduce tachycardia - mostly beta-blockers, some calcium channel blockers

b ) ones to increase blood volume - fludrocortisone / florinef, with extra salt and water.

c) ones to make the blood vessels constrict - midodrine.

There are lots of other meds that don't fit neatly into categories or the doctors just genuinely don't know why/how they work. Also there are meds for specific symptoms like nausea, insomnia, anxiety.

It may be useful for you to work out what your main symptoms are so the doctor can try to target them with the right medication if you need to be prescribed anything.

Good luck,

Flop

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Welcome to the board!!!

I am glad you were able to find some answers!

Yes, there are some things (non-medicationwise) that you can try, but I think for most of us we have to use meds.

Diet things to try: high salt, lots of water, gatorade (watch for the artificial sugar in G2, with gastro/migraine type issues), low carb diet, high protein.

Multivitamin etc. Some people try licorace root. But make sure for all of these you discuss with your dr. first.

For meds. there are many avenues to try. Midodrine (for vasoconstriction) is one, Florinef (fluid retention), a beta blocker (to reduce HR), and SSRI/anti-depressants (for whatever they do! :) ). And there are a few others. It is a hit and miss thing, and there is no one miracle drug.

Good luck! :)

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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.

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Welcome! Sorry about your POTS diagnosis, hopefully you can find a treatment route that works for you.

A non-medication route you can try is wearing compression tights. I started wearing them last August and they've been a big help. I also use a cane whenever I need a little extra thing to lean on. I have one of the collapseable variety that I just shove in my purse when I'm not using it.

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Guest tearose

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

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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.

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Guest tearose

You will find many good topics here on how we deal with family, friends, the medical maze....try to curl up in a favorite chair and read some threads here.

Here is some suggestions as you begin to learn...be gentle with yourself, ask all your questions and write things down, be ready to hear both helpful and unhelpful answers from doctors. There are some uncaring and unknowing answers from some "experts" and be assured you are allowed to "fire" a nincompoop. There are some in the medical profession who are unable to be honest and tell you they don't know, or need to get more information and maybe because of lack of courage, lack of personal ethics, intelligence or maturity...will make you feel like this is a "non-issue". Then, you will find or "discover" a whole wonderful group of brilliant, talented, compassionate helpful professionals that will change your life!

We are here for you too.

The topic of compression is also among the history here. Compression garments are made from special types of fabric the have an elasticity to them that gently tighten/compress your body. These act as manual helpers to raise our blood pressure. Because of pooling in my legs and torso, this is what is working for me..

I use a girdle like garment that goes from my thighs to my waist and is under my pair of 30-40mm compression pantyhose.

As needed...I use an abdominal piece too.

best regards,

tearose

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Welcome, Cat Lady!

I'm glad you found us. I hope that you are able to find some good information and support here.

I haven't had any trouble with medical insurance coverage. So far they have approved everything. As for the prescription coverage...that has been a different story.

Have you checked out the treatments list on the main DINET site? It covers many medications and gives good explanations. You'll find a wealth of information there!

Rachel

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