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Hello, all. I am wondering if anyone knows of a good POTS doctor near or in Texas. I currently need to seek a new doctor as the one I have is not meeting my expectations at all. Any help would be greatly appreciated. Thanks.

I am on Florinef and have been for about 6 months. It seems to be working fine but I have had to stop taking salt pills as they were causing vomiting. So, I'm not certain how much my Florinef is doing.

Midodrine makes my head tingle really bad and makes me very cold. It did seem to help when I first started taking it but now my body gets way too cold and the tingling makes my head foggy. But I know a lot of people have had great success with it.

Yeah! Congratulations! We always like to hear good news. It doesn't seem to happen that much anymore, though. Good luck with moving and everything else.

I still have my palps all the time but mostly when I first lay down at night. I take Zebeta as a BB but I don't know how the meds react differently. I just assumed that having palps was normal for those with POTS.

Hi Sue.

Holidays are rough on everyone! I know I'm not saying anything you haven't already heard or know but just wanted to say it. You have a friend in me. I don't know where you live but virtual friends can be just as nice. I completely understand though. Just know that you have a lot of friends here and that you aren't alone. There are many of us out there who are going through rough times. Anytime you need to talk or vent, just email me or come on here. You will feel better. Count the blessings in your life. It may not seem like you have a lot but when you stop and take a look at it all, you will be surprised at how much you do have!

Thinking of you,

Kari

Too funny. Thanks for the laugh. We would all be in a world of hurt without our salt!

PRAISE SALT!

I haven't worked since June of this year and feel guilty every single day that I am not working. My family and friends don't understand why I don't just get up and work. Oh, if only it was that simple. I simply tell them to count in a day every single time they stand and then to cut that number down by about 3/4 and see how much they get accomplished. Or to read The Spoon Theory. Either one will show them what we are up against.

Thanks for doing this. I feel a little less guilty about sitting on my couch for most of the day now!

Exactly what I need to hear. THANK YOU!

hi...

jupp one getts really sick and tierd of being ust that. But dealing whit life i gess is a chalenge for most of us, healthy ore not.

And dealing whit life demands diffrent ways at diffrent times. i am in my eraly 30is, when i was in my early 20 i belived i would grow out of this stuff. So i thouth my plans would be able to go in to actions then. That didnt happen. I am still sick. And somthimes very sick and tierd of being ust that.

The symtoms it self i deal pretty well whit, i am very used to them. But the side effect of them on my abilety to live my life i still strugle whit. how much depends.

Not being abel to leave the house much, end when having some one whit me. the strugle to try to keep some sort of sosial life. etc.

trying not to compear one self to others. because that is not very healthy to do, but i still do it in some ways somethimes. But i have found somethimg out, healhy people are unhappy too.. Sinsce stress is not god whit pots i try to avoid it. And mostly i do. The types of stress people around me have, i mostly dont have. being on welfare i dont have to worrie about climbing the coporate ledder, a bad boss ore stuff like that:)

We are all human, so try to give your self some slack. I use to think if i ust stayed positive all the time and fought (fight) hard i would gett healty. Because its all in the power of the mind. i have learned its not. U cant concer everything, U cant gett every where and be everything in the world. And u know what it doesnt matter because u can still be happy and content whit our life. Dispite being ill etc.

And being in constent war is not away to be happy. In our sosaitey we are so focused on being winners, that we forgett that in a contest, well there is only on that winn. Ther rest are losers.

So my coal is to be as healthy and happy/content as i can be. To find ways to gett the best i can out of the life i have now. Living whit the illnes, not fighting it, acsepting it.

is it easy? no, but hey esy come easy go...

I think its importan to grive, to be a bitt sad when needed. To rent and complain a bitt. ust gett the negative flow trhou and out of the system. So that one have room for the positive to grow. And to know that there will be blue hours and dark days. The thing is to find away in that darknes ore twilight.And crying is a great stress reliver actually. So since stress is bad for us whit dys, its medicin..

The thing is not to drown in ones sorrow or grow bitter. The one person u can never escape is our self. So i griev and are sad by rules. Somthimes i have to change the rules thou...

Somethimes it workes to remined one self that others in the world are much much worse of. But i must admitt that others saying that stuff to me often anoys me. it feels like they dont understand what i am dealing whit (and they probaply dont).

i feel belitled actually. But for me to reminde my self of it is difrent.=)

One allways hear the klisje of apritation the litle stuff. But its a reason it is ust that.

I have my prozac stuff, like diffrent types of movies i love or tv-seris. Since that often all i can manged to do, its importan to have does for me. And if i need to cry i have a cd for that;)

I have a book case full of books, i dont often have the consentration to read them, but they are there. Ready for me. And i have started to read easy read books, not bothering about remeber what i read.

I have learned to do some crafting i can to from my recaliner, like knitting. i dont do it fast, and a really not that god at it, but i am getting better. And i have somthing to be proud of..

When i started to write this i had a clear ide how what and how to write an answer. But my funny brainfog have interupted my plans so..

it might be imposible to read or gett somthing senible out if it.

But i are not alone. And this site have been very helpfull for me.

so hang in there, life might not bee what u dreamed of ore planned. that doesnt mean your life wont be wounderfull etc.

Thank you so much. I will definitely listen to the song. I do write a lot more and I try to read but it doesn't always work out. And you are right, I have been thinking about what others can do and what I can no longer do. It's very frustrating so I will take your advice and not do it. I think we can all use one less frustrating event in our life. I will cherish the moments more! Thank you for your virtual hugs and for sitting next to me. Know that I am accepting your virtual hug and sending one right back to ya!

Kari

Hang in there Kari!

It is normal to have times of frustration, we all have those days, weeks, years of moving forward two steps and then back two and then falling down. We are with you on this journey so do vent. You are not alone. Some people do improve. Maybe you just need to work on a new treatment plan. Rethink the meds? Upgrade compression? Hydrate with electrolytes? Take a nap?

As for what I do that may help you a bit.... listen to music, read, write your thoughts down, come here and share. This syndrome will wear you down faster unless you take time to recharge.

The worst thing use to do when I was in a potshole/rough time, was to stop and compare how much "others" were doing and how much I had "lost". Please try to learn from me and don't do this to yourself. Try to take what gifts you have and can use and maximize those!

On another thread "Maisie", posted a link to a song her brother suggested we listen to, the song is "War of My Life" by John Mayer. I think you may just find this a healing song to listen to. It is my Theme Song for now.

I'm sending you virtual hugs and sitting next to you while you are figuring this out. You will survive!

Best regards,

tearose

Hello, all. Just needing to vent as I am feeling very frustrated right now with my POTS. Since my diagnosis in April, I have not had a good year. I have not been able to work since June and have been fighting for disability. I'm 30 years old and I am struggling with the fact that I can't live the normal life that everyone else seems to be able to do with such ease. I know there are many of you, if not all, that will understand so I am turning to y'all for help and guidance. I feel like my medicine isn't doing anything. Exercising seems to make things worse. Due to financial difficulties, it's hard to eat healthy when you can barely afford food. My family thinks I am just being lazy and I feel guilty for not working.

Any suggestions as to what you have done to help you through these times would be greatly appreciated. Thank you

Signed,

Sick & Tired

I understand completely. It is a fine balance that each person needs to find for himself. If I push it too hard then I am out of it for weeks so my best advice is to listen to your body. Know when to say no! You have to get used to the fact that we aren't able to do the "normal" activities of those without POTS. It's a very tough lesson for me and I am still trying to deal with it. There are days I can do Yoga and there are days I have to crawl to the bathroom. Do the best you can on everyday and pay attention to what your body is telling you. Forget everything you were told about what you should do for exercise....it doesn't apply to you anymore.

I hope you find your balance of exercise!

Thanks for sharing this! I have trouble keeping the salt pills down. For some reason, my body rejects them and I end up really sick for quite awhile so I haven't been getting all of my salt intake. I shall try this to see if it works because I am tired of feeling thirsty all the time.

Glad to see it worked for you!

It is through my employer and I would go to my HR department except I am the HR administrator...

There should be someone above you that you can contact if its not just a small business. Someone in the corporate office that handles the insurance claims. Or a third party that can deal with the arbitration between you and the insurance company. I had to go through this and am still fighting with BCBS about a claim so I know about the process. You should definately not give up! It's been nine months and I'm still fighting. :3

We are a small business and it's just us two in the HR office. Plus, she doesn't believe me anyway.

Glad to hear you are still fighting. That makes me want to continue to fight as well. BCBS can be frustrating, I know! You hang in there. We should both never give up or anyone else for that matter. I will fight until I can no longer fight or I have exhausted all my options. I just filed a complaint with my state's department of insurance. If that doesn't work, then civil suit here I come!

I love your quote by the way.

Great health care system we have huh....................

We have got to change something! We suffer through enough without having to deal with all of this!

Thank you all for your words and encouragement.

I was denied because of my "alleged POTS". I was shocked because I figured with STD they would approve it. I printed out handouts and articles regarding POTS as I was certain the medical review team probably never heard of POTS. I even gave me them a few personal account stories about how it feels to live a day with POTS describing crawling to the bathroom and back to bed, being sick, dizzy, nausea, etc. They approved me for two weeks to "allow time for my cardiac work ups", apparently two weeks is suppose to cure POTS. Who knew?

They said I could bring a civil action suit against them and that other voluntary dispute options are available, such as mediation. I just never thought it would come to this for STD. It is through my employer and I would go to my HR department except I am the HR administrator and I am not positive my boss believes that I am sick as I have heard from other co-workers mention this.

I feel alone, defeated, and hopeless. I would love to go back to work this minute! I am not looking for a free ride or a handout. I just want to live my life but POTS isn't letting me to do that how I used to. I am afraid to apply for long-term disability because it's through the same insurance carrier and if they denied me my STD, they will deny me my LTD.

Currently, in the process of getting help with social security disability. Like we don't have enough to worry about with having POTS, now we have to fight the insurance and administration! Life is swell!

I applied for short term disability through my work and was denied. We then appealed it and were still denied. I did some research on the insurance company that denied me and, apparently, they are known for denying people. We are having a hard time finding a lawyer or any office that handles short term disability. We have found long term disability and, of course, social security disability, but not short term disability. We live in Dallas, TX. Does anyone know of anyone who can help me, please? Thanks.

Thanks for the updated info. It certainly will come in handy to many of us on the site, as some are currently fighting for Federal Disability (like me) or thinking about it. Thank God for long-term disability from work!

Cheers,

Jana

Hi, Jana. I am currently fighting to get Short Term Disability from my employer and was wondering if it was hard for you to get on Long Term Disability? Did you need a lawyer or were you able to get without any problems? I would appreciate any help you can give. Thank you.

Kari

I do. I will send you a message.

Actually, if I'm reading and holding the book up (or any movement that puts my arms over my head for any length of time) it usually happens to me.

This happens to me all the time! When it is really bad, I can't even use a hairdryer without my arms getting tingly from the shoulders down. Dr. Grubb told me it was improper bloodflow to the extremities caused by the POTS. My knuckles often get a dark, blackish look too which he said was from circulation issues as well.

I don't get it in my hands as much as I do my legs and especially at night, which tends to carry over in the mornings. Is there anything to do besides meds to stop it? I have been trying a heating pad but that doesn't seem to work. Any suggestions? Thanks.

That's really strange. I was just diagnosed with POTS about two months ago. I haven't smoked marijuana in over a year but prior to that I smoked for three years. Those were the best three years. My POTS seemed to be almost non existent. I wasn't dizzy, had no nausea, no headaches, little stress, and I could actually get a good night's sleep. Unfortunately, we have random testing at work so I had to give it up and I live in a state where it is not legal to dispense even for medical purposes. I guess just like with everything else, it works differently for some. It is the best "medicine" I have found so far and really wish I could continue.

Hi again!

After my poll here, I am not much more convinced that this works for most of us. I think I will wait, and put off buying anything. Depending on how my living arrangements go and what I have accessible in the future, I may give it a trial, but it does not sound promising.

Thanks for everybody's input!

It seemed to work pretty good for me. I just got two phone books and put them under the top posts of the bed. It is a cheap way to raise the bed without buying anything. My work had a lot of them so I was able to take them but you shouldn't have any problem finding them for free.