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A Quick Pots Syndrome Survey


TopHatKat
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Hi Everyone,

My name is Kat! I am currently in a business statistics class at Northern Illinois University. For this class we have to go a linear regression project. So, I decided that it would be interesting to find out more about Pots Syndrome (since I have it) and what effect the treatments that the doctors have come up with so far has had for myself and others who also have this ailment.

To do this, I need your help! It's just a short, anonymous survey based on numbers. Your participations is GREATLY appreciated!!

You are welcome to email your results to me (I will not use your email for any other purpose, except to send a personal 'thank you' directly to you) or post them in the forum (I know that this defeats the anonymous part, sorry, your identity will not be used in my results, I promise).

If you could please do this ASAP, that would be great!

Thanks So Much,

Kat

Click here to email Kat!!

Pots Syndrome Survey

This is a statistical survey, so numbers are the most important information needed. If you would like you include more information, you are welcome to.

1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years)

2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number)

3. How long do you exercise per week? (please state your answer in minutes per week)

4. How many grams of salt do you ingest per week?

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Kat,

1. My doctor told me that I might never recover from POTS, but it was possible for some of us, especially those who got ill when they were children/young adults.

2. 0 (I can't tolerate them)

3. 150 minutes

4. 21 grams

Hope this helps, and good luck!

Cheers,

Jana

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Let us know how you made out Kat. Sorry, my answer upset some people. I removed it and was saddened as this is where I come for support. I have a wonderful team of doctors and a difficult case of Dysautonomia including POTS.

Blessings and love to all~

BellaMia~

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HI there Kat.. I love students and their projects!!

1= 0 Never even mentioned it. I have a chronic complex case

2= 2 beta blocker and now Clonidine

3= 30 mins weekly on Gazelle..but results in muscle fatigue

4= 0 I have hypertension

Let us know how this works out for you

Warmly Jan

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1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years)

Never, I've always had it and probably always will. Recovery was never mentioned, only the control of symptoms

2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number)

3

3. How long do you exercise per week? (please state your answer in minutes per week)

80

4. How many grams of salt do you ingest per week?

around 10 grams

At the end of this, please post your results and how your report was received. The last "school report questions" that I responded to were never heard from or seen again and we don't know what kind of reaction the student received!

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Guest tearose

I understand you are doing this for a class but the "effective treatments" you are doing a sample population survey for do not line up with your questions.

I am still dealing with pots since 1991. If the doctor ever gave an estimate of when I would be better it was "SOON". I am still waiting.

The effective treatment for me is : electrolyte and hydration, compression, seat cane, meditation, rest, activity and balance.

No medications, they first ones made me sick and now I have medication allergies and sensitivity, I use daily behavior modifications.

I do get exercise induced relapses so exercise changes day to day, or week to week.

I have another condition, so I must be careful with salt.

Good luck with your class.

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Hi Kat,

1. Recovery never mentioned because doctors think it's genetic; try to control symptoms- My neurologist recently told me I had paf since so many systems are involved now.

2. 3

3. exercise intolerant; occasionally ride a recumbent bike for 30 minutes

4. 20 + grams

Good luck with your study!

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1. I was told by my dr. pots is not cureable and is a permanent condition. 2. I take 4 meds daily for pots. 3.I exercise in small amounts like several 10 min walks. 4. I am guessing 1000mg or more per day. I was drinking 64 ounces if Gatorade a day but am getting sick of it so have been focusing on high sodium foods like cottage cheese, canned tuna, and adding other fluids.

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Ill try not to be too annoying here. But the first question is loaded - it assumes a doctor actually knows enough about the condition to give you a real answer to this question, and secondly that these answers are based on some form of science when they wouldnt be.

No study has really examined the longterm outlook of POTS patients and every doctor Ive talked to has told me very different information - if you read the literature from Mayo, Blair Grubb, Vanderbilt, etc they all have quite different opinions.

Also it depends on the mechanisms or the type of POTS that you may have.

So with that little disclaimer here you go:

Onset - mild then sudden/abrupt at age 26 - male

1. Doctor 1 told me remission was possible but unlikely, doctor 2 told me that I could expect improvement

2. No medications for me - none have made me better. Beta blockers are ok when needed.

3. Exercise varies - when well running 1.5 miles three times a week - riding, swimming, at worst unable to stand. I try ti keep active.

4. I dont measure it - i drink lots of gatorade and eat a bit of bacon. over-Hydration is more effective for me than salt.

that I'm suffering a severe form of multl system dysautomonia that is a varity of clinical conditions including the postural orthostatic tachycardia syndrome, Raynaud Symdrome, Irritable bowel syndrome and other peripheral neurorolgic manifestations. This is a chronic condition, highly debilitating, and not clear, when, wheather, and to what degree I may recover from these disorders

Possibly, but most POTS patients have all those symptoms from POTS.

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Ramakentesh,

I THINK MOST OF US know this is not a contest as to who suffers from POTS the most and it's interesting to see the responses. I have a, "SEVERE," Form of multi system dysautomonia. DO I WANT TO? NO WAY! I used to think the letter alone as it was hanging on my fridge would help my kids, family, friends, understand their mom was ill after I received it. It made me cry, when I first got it...

We all woke up this week realizing the ugly truth. They don't even know if I can even be alone much longer and no one has room for me. So, to assume we all have the same symptoms is not necessarily right. My friend with Pots is fully functioning and works full time, with totally different symptoms. I'm going to stop right here as this is really a survey. I just wanted to make myself clear that I wrote what my HIGHLY TRAINED DOCTOR TOLD ME, as that was what the question was. I removed it as I come here for support not to be as you stated, "Sorry dont mean to annoy/cause alarm" and "I think the medical advice that you have received is inflammatory."

I pray that you have more understanding for others living with pots as we are all different, and that your pots never gets like mine as I wouldn't wish it on anyone....

God Bless all of us! : )

BellaMia~

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SOrry dont mean to annoy/cause alarm.

But I have heard of zero patients who have required a heart transplant from POTS. There are different types of POTS sp different presentations would be expected. But I think the medical advice that you have received is inflammatory.

Infact I am forever wondering how doctors can presume to talk with such definitive knowledge about any of these conditions - the research is in its infancy. Ask your doctor if he can definitively demonstrate why you have dysautonomia? I assume you have a hyperadrenergic presentation?

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Hi Everyone,

Thanks to those who have participated in my survey! Your willingness to share your personal information has been really helpful. As for sharing the results with you, I will if I can. There are graphs and such. Right now it is looking like there is no linear relationship between and of my independent variables (medications, salt, and exercise) and my dependent variable (recovery from pots). There are many reasons for this.

I never meant for this to turn into anything more then a simple survey. Sorry for the confusion, or whatever sparked the heated discussion that followed.

Thanks Again,

Kat

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This is a statistical survey, so numbers are the most important information needed. If you would like you include more information, you are welcome to.

1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years)

He asked me that question actually. And i said i read 2-5 years, and he said "yes that is true, but sometimes people don't get over it, and its life long." He also said its life altering to me and not life threatening.

2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number)

Currently i don't take anything, i was prescribed florinef and mitodrine but i did not take them, im not a medication kind of person, sounds crazy i know.

3. How long do you exercise per week? (please state your answer in minutes per week)

I usually do 20-30 minutes 3-4x a week of weight lifting.

4. How many grams of salt do you ingest per week?

Probably no more than average, salt i don't think has helped me much. But i haven't given it a big fair chance either im sure probably.

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SOrry dont mean to annoy/cause alarm.

But I have heard of zero patients who have required a heart transplant from POTS. There are different types of POTS sp different presentations would be expected. But I think the medical advice that you have received is inflammatory.

Infact I am forever wondering how doctors can presume to talk with such definitive knowledge about any of these conditions - the research is in its infancy. Ask your doctor if he can definitively demonstrate why you have dysautonomia? I assume you have a hyperadrenergic presentation?

i thought a heart transplant didn't really make sense either for the doctor to suggest. I thought in POTS the heart was not defective but the nervous system, so would a heart transplant really do anything?

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Hey Guys... I just wanted to add my 2 cents about the heart thing and POTS. Pots can wear out your heart. It can become enlarged (like and over-worked muscle). POTS maybe a problem in your brain but the side effects can wear out other organs. I have had untreated POTS for almost 11 years (at least). Hopkins was convinced that I had a Pheocromcytoma tumor that was just to small to see. I was just diagnosed in May... so my point is you can damage your heart, kidneys, brain when you are running around with untreated blood pressure problems. I am 36 and have "only" Dysautonomia problems but many people on this site have other helath issues and/or are older. Just my thoughts.

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1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years)

My doctor did not talk about recovery.

2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number)

Currently, 0 prescriptions and 3 OTC supplements.

3. How long do you exercise per week? (please state your answer in minutes per week)

150 - 240 (usually closer to the 240 mark)

4. How many grams of salt do you ingest per week?

I have no idea! I usually put about four shakes of salt from my shaker on every meal I eat, plus I usually have one salty snack (like chips) a day.

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Honestly I just wanted to add that I have heard of the enlarged heart thing. One doc had mentioned that my heart would probably get enlarged if I did not do something to slow it down (but that doc wasn't a cardio guy).

I am sure you have already done your survey but I need to also say that it is hard for doctors to say how long it will take to recover if at all. :( No on ever gave me a time line. Not even a guess.

So anyway...so much for my staying out of it...but that has been my experience. Please let us know the results of your survey. I think another important point is whether it is a secondary condition etc.

Good luck...Erika

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Im often amazed what people believe as fact. Doctor presumptions dont constitute fact.

It is possible based on hyperthyroidism and other conditions where elevated norepinephrine increases sympathetic drive, but I think there has been 1 confirmed case of cardiomyopathy out of all the patients that have had POTS - and im sure many have had POTS before it was properly diagnosed. I know a guy that has had it 22 years and his heart is 100% fine.

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