What should I do next?

[sdtme@msn.com]

I was diagnosed with POTS last year, I was put on Adderall, Midodrine, Toperal and an aspirin. I felt better for a while. For the past 2 months all I can do is shake, sit in my chair and watch my family do everything for themselves. I've also went from being 180 lbs to 128lbs and I'm 6ft tall. I went to my cardiologist yesterday and he dicided that the Adderall and Midodrine must be causing my symptoms (to long to list), he instead wants me to take Ritalin. My grandmother has PD and my mom has Hypoglycemia, my dad has Aortic Stynosis, my doctor says I have nothing to worry about it is just the medicine. How can I get him to test me for these problems or send me to a specialist? I have never been tested for anything other than a TTT to diagnose POTS, I think there is something causing POTS. If you have any sugestions please let me know.

Thanks

[mindylee1]

So sorry to hear what you are facing. Please know that you are not alone. I know that I if not all of us can relate to your symptoms. I went through a period of about eight months where all I did was shake. My whole body...could not write, eat, drink...ect. They put me in the EEG unit and ruled out epilepsy. I'm not quite sure why it happens to us... it may be due to the fact that we are all on soooo many meds....it could be part of the pots.

What I have learned through this battle is that we are worth it. What I mean is you smiply need to be blunt with your doctors. If you feel something is not right and you want to be tested for these issues... you tell them to do it. It is your right as a patient to never leave the doctors office with worries.

I think about all of the drs that passed me around, drowning me with drugs because they just didn't know. It was my final decision to tell them to send me to the Cleveland Clinic. Which lead to my diagnosis after years.

Don't be afaid, this is their job. I always make a list when I go to an appointment so that I won't forget what to say.

I wish you the best, let us know how it goes.

Mindy

[Guest tearose]

welcome stdme,

Mindy gave excellent suggestions. I echo her statements. Be proactive, be assertive. Get a good pcp get a good work-up. Ask questions about everything! Don't just accept the doctor or the medicine without doing some homework. It will probably be tiring to you, but you will better live with your decisions if you approach this from a position of strength and knowledge.

Feel better soon, tearose

[violahen]

Hi;

I agree with what everyone has said so far. Let let the docs make you feel like you have no say...it's your life after all! I am 38 now and was born with POTS/dysautonomia, and I wasn't accurately diagnosed until I was 36! Persistence definitely pays off. You are worth it! You have every right to express your concerns to your doc and to make requests.

As for the change from Adderall to Ritalin...that seems odd because they are very similar drugs...I am not convinced that the switch would alleviate those symptoms that he/she feels are a result of the drug. I was on adderall for a while....it didn't help at all....I was shaky all the time as well...and I am a professional musician so I couldn't even play! My doc had prescribed adderall instead of ritalin because he said the side-effects would be less! If that's true, I can't imagine what ritalin would have done.

As the others have said, do as much research on your own as you can, and go prepared with questions and concerns for your doctor. If he/she won't listen, I would start looking for someone who will!

Good luck....I really understand what you are going through.

Kristen

[sdtme@msn.com]

Thanks for all your concerns, It is so hard for me to talk with the doctors, I do take a list everytime with all my symptoms, medications and family history. I don't think they even look at it. I saw Dr Low in August and he told me I have POTS and sent me on my way. I was told I would get a paper on what it is in the mail and never did. I have done so much research I'm tired. I have 4 children (2 because I had bllod clots and couldn't take birth control) ages 13, 8, 3, and 1. I also have 2 stepchildren every other weekend. I sit and watch my babies and wish I could get up and play with them. My pregnancies were awful. Preterm labor for the last 3. All were born at 32 weeks. I'm getting so skinny that all my clothes are falling off of me. I'm weak, thirsty, shaky, cant think of the words to use when I talk. I'm only 32. I sound as if I am 80. Anyways thanks for listening to me complain. Maybe I'll go to a dr in Tennesee. Know any GOOD ones.

[Merrill]

Vanderbilt in Nashville is one of the premier centers for research on Pots and dysautonomia. Dr. Robertson is the leading researcher. (Someone here has that web site if you want to learn more...maybe they'll post or you can google it.)

Have you tried the non-pharmacalogical approach? Adding these things to your current regimen may help you enormously--they have for me! Salt (lots and lots--take salt tablets if you can), 2+ liters of fluid daily (I make sure a glass or two of that is gatorade to help w/electrolytes--other drinks also available), and wearing 30-40 compression hose or thigh-highs. The hose are key to my survival! (They're also covered under many people's health insurance under category of durable medical goods ... so if you have insurance, ask your doctor for a prescription and get it filled through a medical supply place or get them online at ames-walker.com and file a claim later. You're tall, so be sure to get recommendations from others on this site or ndrf.com for what brands may fit you best. I'm 5'7" and love mediven brand.)

Mayo should be able to send you the info you need if you call Low's office back. It's hard to find the time, I know ... and it's frustrating when someone says they'll do something and then doesn't follow through. But obviously there was a miscommunication with the office staff, and you should be able to reach someone there who can help you!

best,

m

[MomtoGiuliana]

So sorry about all you are going through. Many of us unfortunately have also been where you are, since this condition can be hard to get a diagnosis for and proper treatment. It might help you to read about others experiences under the stories section of this website--as far as some peace of mind. Most people do eventually get better, however, most people do even better and get well faster with appropriate treatment, which will vary from person to person.

It sounds like you and your doctor may not have found the treatment appropriate for you yet. There are many, many different medications used for treating this condition, plus other non-medicines you can try, like increasing salt and fluids intake, or wearing compression hose, for example.

There are specialists at Vanderbilt (you asked about TN). http://www.dinet.org/physicians.htm

Check the above page for a physician's list.

As far as pursuing the cause for your POTS or whether you may have an underlying condition, within reason, this certainly makes sense, and like others have said so well, you have the right to ask for thorough investigation when you are this sick. That said, many of us find no explanation in the end. But, certainly, there are sometimes underlying and untreated conditions that exaccerbate POTS (e.g., infections, allergies, other conditions). If they can be found and treated, that can possibly help you improve.

I know how hard it is to be a caregiver of a young child and to be this ill. Be gentle with yourself as you continue to seek answers and treatments that may help.

Katherine

[calypso]

Welcome to the forum. So sorry to hear you also have POTS.

Sounds like you have lost A LOT of weight. My goodness, I have been complaining about having lost 20 pounds and you have lost 50. That definitely deserves investigation. I am assuming 180 is your normal weight when not pregnant, and not from before your most recent pregnancy?

I don't know if you have pursued rheumatological testing, but that might be something to look into, because these conditions are difficult to diagnose (autoimmune diseases) and can sometimes involve blood clotting abnormalities. Particularly, if you read up on lupus, there are some clotting tendencies in many of those who have lupus. I am NOT saying you have anything like this wrong, but just make sure you've had the correct blood tests and such so that it can be ruled out.

Another possibility is endocrine problems -- thyroid, low cortisol, etc. These diseases can cause unintentional weight loss.

Or you may just be one of those people like me who has no identifiable cause. But don't give up hope or stop searching for answers. Have you lost any weight in the last few months or has it leveled off, at least?

I developed POTS after having my first child last year. The last year has been exhausting, so can't even imagine if I had FOUR children! Bless you.

Good luck,

Amy

[sdtme@msn.com]

Hi Amy, I lose about 1-2 lbs weekly and cant seem to stop. I get so hungry during the day that my stomach aches and when I look at food, it doesnt look appitizing. By the time supper comes I'm really starving and pig out. The Adderall and Ritalin are a appitite suppresent and I really dont need that. Thanks for all the suggestions I will take them to my family dr and see what she can do. I really appreciate all the responses. I feel much better knowing all of you are out there.

All my love,

Terese