Pots Is Ruining My Life.

Back in Septemeber, I woke up one moring, with stomach pain, thinking maybe, I was just being a woman, I went on with my day, went off to school, in progressivly got worse, I couldn't stand anymore, I called my mom and made her come get me. I ended up in the hospital for the first time THAT DAY, for pain, I went home, all drugged up, and started fainting( I fainted a lot before, but my doctor kept saying all teens did), my mom concerned took me back, but to a different hospital, who told me "You're perfectly healthy". Inside I felt my body shutting down again. I ended up going home that day, and only on pain medicine, I passed out everyday after that, I went to about  25 differnent doctors, trying to figure out "what is wrong with me". I finally fainted in front of the office staff at my school, and ended up in the hopsital again. After about twenty minutes of throwing bigeminies and trigemines (sp?) I was admitted into childrens of Detroit Michigan. I was there for a week until the finally diagnossed me with POTS. I got on a few pills, which didn't help at all, I was still fainting all the time, ended up in the hospital a couple of those several times. During all this, doctors kept saying "its all in your head". This week, I was out on a date meeting my boyfriend of a years family members, I still had to meet, and I fainted once, right in front of them, they wanted to take me to the hospital but I told them this is a daily thing, don't worry about it, I'll be fine. I was out for a minute then. About twenty minutes after that, I started vomiting, and fainted again, him and his family afraid took me straight to the ER, which I didn't even get into a room, I was in the hall, throwing bigemines, countless amounts of times, along with trigemenies. Doctors were so rude, didn't even care. I have had constent chest pain since that episode, I have been passing out constently, and this monring, I had to resign from my job. This is ruining my life, but all but two doctors are saying its all in my head. I am become upset. I have lost almost all my friends, and am scared too loose my life. Does anyone have any advice. Help me out?


I'm only eighteen and already dying?
Katryna.
kantieau kantieau
18-21
29 Responses Jul 26, 2010

I got diagnosed with pots about 6 months ago after spending a week in the hospital because I fainted and put my head through a wall,they put me on midodrine that really has helped me with the fainting. I'm not sure what meds they gave u ,I hope this helps

I am 18 and suffer from POTS. Do you ever experience mild to extreme memory loss?!?! That is one thing my doctors cannot figure out. Anyway if a doctor said you are suffering from or showing signs of POTS, here is how I control it. If you feel yourself losing control of your body, sit down (NEVER LAY DOWN!!!!) and take nice deep breaths. Cut back on caffeine and stay away from energy drinks and alcohol, they could potentially stop your heart. Drink lots of water and some Gatorade everyday and keep the salt levels in your diet up! Make sure you are somewhat active but do not try and over do it.

Hi my name is Amanda and I was diagnosed with POTS when I was 17. Like you I was fainting a lot but also I started having seizures really bad because when I would faint my heart would stop. We didn't know this at the time not did I know I was having them because I would faint and not remember that whole day. My mother finally started to believe me when I said something was wrong when I fainted In the hall way of my school and my heart stopped. Went through over 45 doctors between two states. I am on medication and it helps sometimes but a lot of times it doesn't. I have been able to graduate but I understand how you feel about the doctors my whole senior year my school nurse and teachers didn't believe what I had and thought I was joking till my doctor finally came in and raised hell because it got to the point I was home schooled for half the year and they tried not letting me walk at graduation too. I was not allowed to go on senior Tripp either. I do work at a medical plan and also help younger kids at the hospital who have been diagnosed with POtS I refuse to let it control my life I already had to quit all sports because of it. Not letting it stop me from becoming something. I hope one day yours will ease like mine has some what. I wish you best of luck!!

My daughter has this too. It is treatable...In fact...It is not in your head. You need medicine. Here's my daughter....

Heyy my name is Hannah and i am 19 years old.. My symptoms started after i went to a field trip to cedar point in 8th grade and my life hasnt been the same since... i went to many doctors and had to go to a physcaitrist. i wouldnt give up to find out what was wrong with me. My mother and i were determined to figure it out. I went to the emergency room, drs, therapy, etc. I know how it feels to feel like an outsider and thinking that my body hates me. I struggle every day feeling sick dizzy anxious depressed, and much more. My senior year of high school my mother was taking chinese at a community college. I started fainted my senior year and had to be hospitalized... I ended up missing my prom and lost many friends. I had to take many tests at the hospital including a tilt table test. I fainted during the tilt table test and they had to stop it. They wanted to see if my blood pressure went down during the tilt table test because thats why people faint sometimes during that test. They ended up telling me that i had my heart rate going up and my blood pressure the same. i was then dicharged the next day telling my family and i that they dont know whats wrong with me and that i need more therapy. They told me that i prob fainted due to anxiety. I was soo mad and upset. I have always felt that nobody understands, After i was in the hospital i kept fainting every day even a few times a day. I also fainted at school and they took me in the ambulance a few times. After i was in the hospital my mom went to class and talked to her class mates. in her class This really nice man was telling her about this specialist in ohio. He told her to check her out because it sounds like i have pots just like his daughters. We called the dr and went to an appointment. she examined all my reports from the hospital , and told me that i have pots...she showed me the report and said that the reason why my heart rate went high was because it was fighting to keep blood in my head and to not pass out. Thats a reason why there is the word tachycardia in pots. I have been seeing her for about a year and a half. shes in toledo ohio and she is the nicest most understanding doctor i have had. she has pots too and her family also has it. I am on lots of meds and see her about every 10 weeks. She is a really great doctor and i reccomend her. Her name is Dr. Boehm. and here is her number (419) 724- 6888. Please contact her, You wont regret it. I am not a hundred percent better but i HAVE BEEN GETTING BETTER :)

also please please contact me- tweetlebee12@yahoo.com
I would like to talk sometime so you dont feel alone. After i was diagnosed i became friends with a few others who have pots too. I know it sucks and i feel the pain too but its not the end of the world and hopefully with doctors technology and each other we can get through this :)

I have the same thing and I've had it for 16 months, they didn't know what was wrong with me for 5 months, I got tested for every thing to Lyme disease to leukemia because it's in my family and after since they got me medicine I haven't stop fainting or anything, Im losing weight badly, I weighed 85 lbs over the summer now I weigh 96 and they told me the same thing, i can't remember anything nor I can hardly stand up, trust me it will get better, I've gotten alot better but I'm still very ill

I have pots. Too and its very hard to live with I'm 28 And two kids and everyday. Is something. New. But we will.get throw this

Does anyone know of a support group in MN for POTS sufferers or a dating site for people that suffer from such things such as POTS? Im 43 and hope not to spend the rest of my life alone which it feels to me is going to happen. My wife left me partly because of my POTS and it "all being in my head", luckily no children, but it just sucks- it is hard for people to understand. If you have a broken arm people can see that, but POTS you look normal from the outside. Ready to give up- I have had POTS for 8 yrs and the past year it has gotten worse. I taught high school and coached three sports up until two years ago, took a season job as director of a museum and wrote a book, barely made it through the hot summer! Anyway, guess Im just venting, so frustrating!
Dan

I felt the same way, have had POTS for 8 yrs now, fought though, unfortunately I am back to the hopeless feeling as mine has gotten worse in the past year. I am divorced with no children, and now feel no one would ever want to put up with what some days bring with POTS. It is so hard to stay positive-

Don't give up! I'm a 37yo female with POTS and I would love to meet a guy like you, who could understand that this is not all in my head. We may be hard to find, but we are out there!

I was first diagnosed with POTS at 16 this was after having it for two years prior. Now at going on 22, I am functioning fully and like every other person. Yes, I have my bad days but I can do almost everything that everyone else does. Most days that means I have to talk my way through feeling good. Drink LOTS of Gatorade 2 and try to do a little exercise mainly legs. Even though I know that's the hardest thing to do. When you start to get dizzy put your fingers in ice or ice water and pull your legs up, this makes a world of a difference! Okay now here is the biggest part of all! I now go every 4 to 6 months to get two fluid IVs this keep us hydrated and will be your best friend. It will all get better dont worry! Just be blessed that its not going to kill you!(which I know it feels like it might some day ;))

I am glad to hear you are totally functioning, I got Pots at 35, now 43 and had gotten worse, I am to the point I don't know if I can fuction normally anymore, one day is good, the next just sucks. I have done all the things you have mentioned. I am single and the worst part is I feel as if no one would ever want to be with me with all these problems. I am physically in shape, found attractive by females, but just looking at me they don't know about all the fatigue, the not being able to do certain things, even though I look normal from the outside. It sucks.
Dan

My daughter and I were just diagnosed with POTS. I suffered for years (12) with the symptoms and had no clue what was wrong with me. After taking myself and daughter to various specialists, I finally gave a Wholistic Pediatrician a shot, and sure enough, he had my child diagnosed (and me, essentially) in 30 minutes. I started gluten free diet and feel soooo much better. My daughter is starting one too, but have read a lot about the IV treatments and exercise. We are going the natural approach as much as possible. Heard so much negative feedback on the drugs. What exact process does one go through with the IV treatments? You really felt better after them?
Thanks--Aimee

I'm so sorry to hear about y'all both having it! At least you guys can work together to get through the days! With the IVs I first went to the emergency room and they gave me two bags and I felt better within two days. However that can get very expensive so now I have a family friend who is an anesthesiologist who gives me the IV at home. I get an IV every 4-6 months and I can start to feel when I need it. I do exercise as much as I can, but I did do physical therapy for a year in order to be in the place I am at. In regards to medicine I don't take anything! They made me feel worse and didn't help without changing "me".
Be sure also to drink 64oz of Gatorade a day!
I hope this helps and if you have any questions or anything please feel free to ask!

Excalty the same As Mine !!! I havent actually being digonised yet but not allowed in college or anything so upset i feel like my life is over too i carnt do anything without someone helping me it got me very depressed but reading all these comments has helped me to stay strong and im not the only one, im from england and all the doctors here say they have never seen anything like it and it is so heart breaking when they say your faking it!!! xxx

Does any one know if memory loss associated with POTS syndrome can be reversed.

You might ask for something called an UMMA test which measures the metabolites of B12 and is much more accurate than the serum B12. Low B12 can cause memory loss that even mimics Alzheimers. In the US they consider any serum (blood) level above 140 or so okay. IT"S NOT. POTS patients need to stay around 400. Supplement and don't take proton pump inhibitors if you don't absolutely need them--they keep you from absorbing B12! Nutrition is almost all we have to fight this with. Without B12 you won't make red blood cells or store iron. Just bc a doc tells you your red count is okay DOES NOT mean your B12 level is okay. Also need folic acid to make red blood cells....

Hi Katie,<br />
My son was diagnosed with POTS 5 years ago at U of M when he was there. The good news for you is that the countries most knowledgeable doctor is right near Detroit, at University of Toldedo! Dr. Blair Grubb and his partner Beverly Karabin RN PhD treat almost exclusively this particular dysautonomia and see people from all over the country. Call or look up online to get the info to make and appointment. We have had fantastic from these people, and although the POTS still comes and goes, our son has been well managed, and has had immediate help anytime he was having symptoms, or a change in symptoms. Good Luck to you. :)

Hi Katie,<br />
My son was diagnosed with POTS 5 years ago at U of M when he was there. The good news for you is that the countries most knowledgeable doctor is right near Detroit, at University of Toldedo! Dr. Blair Grubb and his partner Beverly Karabin RN PhD treat almost exclusively this particular dysautonomia and see people from all over the country. Call or look up online to get the info to make and appointment. We have had fantastic from these people, and although the POTS still comes and goes, our son has been well managed, and has had immediate help anytime he was having symptoms, or a change in symptoms. Good Luck to you. :)

Hello. I totally understand your frustration. I have POTS. Doctors also told me everything was in my head. I was even diagnosed with Conversion disorder before being properly diagnosed with POTS. Conversion disorder is a psychiatric diagnosis meaning all my symptoms were psychological in nature. You need to find a good nuerologist who understands POTS. There is medication that can help you, but you also need to make lifestyle changes ie... increasing salt intake, wearing tight full length socks, increasing fluid intake, and be especially carefull to not get overheated. There is a great DVD on POTS which you can get sent to you for free online called "Changes- Living with Postural Orthostatic Tachycardia Syndrome" Get the DVD, and watch it with those close to you. Good luck, and don't let anyone convince you it's in your head. IT'S NOT!!!

Hi Sweetie.<br />
<br />
Im 18 as well and suffer from the same condition.<br />
DW you are not dying! trust me iv gone threw the whole stage of giving up because i was sick of doctors and people telling me i was faking it or it was all in my head!<br />
<br />
i have finally found a good doctor that actually understand! <br />
<br />
<br />
just stay positive and i hope you find that doctor that believes in you soon :)

Hi Sweetie.<br />
<br />
Im 18 as well and suffer from the same condition.<br />
DW you are not dying! trust me iv gone threw the whole stage of giving up because i was sick of doctors and people telling me i was faking it or it was all in my head!<br />
<br />
i have finally found a good doctor that actually understand! <br />
<br />
<br />
just stay positive and i hope you find that doctor that believes in you soon :)

Hello, I have had POTS for a year now. I thought I would die too! It took me so long, and so many trips to the ER before I was diagnosed. Please hang in there!! I went to Cleveland Clinic to see Dr.Tanase and Toledo to see Blair Grubb. Being on medicine has changed my life, and will help you too! Also, they're doing a research study in Nashville to see if inhalers help POTS sufferers.

i am so sorry that you are constantly fainting. I am nineteen so I totally understand how pots ruins our life at this time in life (or any time in life) Luckily I haven't actually fainted yet however I have been extremely close. Does anyone know if POTS makes asthma worse? I have sports induced asthma and have had it since i was at least 12 and only have issues with it when I work out. But since I've had pots I've had 2 really bad asthma attacks out of no where. Luckily I was already at the dr's when I had the first one and my dad is a paramedic so he helped me on the second one. But i've been out of work and am scared to try and go back and it's making school so difficult. I hate this

I have POTS and migraine. It's taken forever to get diagnosed. You need to do a tilt-table test if you haven't already-- that's how they tell if you have it, and how bad it is. I went to the Syncope Clinic at the Cleveland Clinic and they found it no problem. The test will get their attention and make them believe you. It is NOT all in your head! As for meds, since I have both POTS and migraine, I'm on Cymbalta. It's supposed to reregulate your autonomic nervous system. It does seem to be helping, that plus 5 grams of salt and 2 liters of water per day, min., and also -- ugh-- support stockings. They DO help, although they make me feel extremely old! There's this guy named Benjamin Levine, a dr., in Texas, who's studying POTS and he is effectively curing it with a specific exercise program. <br />
My blog: http://catherine.blog-city.com<br />
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Hope some of this helps, best of luck to you!<br />
<br />
Catherine

i feel exactly the same hun i was in hospital for 6 weeks before i got diagnosed, they put me on meds and they dont exactly help! my fainting has got so bad that i cant go through the door by myself as im fainting 10-15 times a day, and its making my life a living hell and thats no life for a 22 year old! my legs feel like i cant move them quite a lot but as i also have ehlers danlos the doctor reckons that its due to that. hope your ok xxxx

I Know exactly how you feel..im in marching band..and i can't be normal it seems im a freshman in high school this year..and it's so hard to keep up with everyone..i faint..and i had the doctors say the exact same things that i was depressed it was all in my head..i went to childrens in Columbus Ohio..and it broke my heart to hear i had a heart issue..i wish the doctors knew more..keep you'r chin up and just keep pushing forward!!

dear lorlei, try everyday of my life! Sometimes i get tremors, forget how to walk, and sometimes can't even talk at all. I got diagnosed by my nuerologist. have you guys tried beta blockers? that's what i'm trying. even if you have low low blood pressure (which I have) it's suppose to possibly help.

I am new to this I have acutly have had symp. Sence my pregency 13 years ago several test and dr later I now have been told I have POTS. I have struggled with terrible memory loss also I just thought it was part of getting older even though I am not that old My husband and children think it is funny when I say the wrong words all the time. To me it is not so funny they don't understand how fustrating it can be. I feel lazy I miss being active all the time it takes all my energy just to make it through every day life let alone doing anything exta. I feel I am missing out on my daughters life I spend more time sleeping then anything. My hart goes out to all of the young ppl going through this. Best of luck

Yes I do. Especially when typing, I often forget how to type or spell. Its so weird. I also have a hard time focusing so writing papers for my online classes and such are such a struggle. I dont know how we will live the rest of our lives this way.

I have pots also. I go through Primary Childrens Medical Center in Salt Lake City. Theyve been a great help. My cardiologist is Dr. Susan Ethenridge. She knows a lot about it and has helped me a lot. She referred me to a POTS specialist in the Salt Lake area. I am on the waiting list for her and I'll be able to see her in a couple months hopefully. I cant remember what her name is though. <br />
By the way, is memory loss s symptom for you guys? I cant remember a lot of things and words that i wanna use, etc. I dotn pass out as often as you but I do sometimes. I am hoping that somehow I dont ever get to that stage. Anyway. God bless! Its way hard. But I guess we'll grow through it..?

Hi! I'm looking for a doc in the SLC area who knows a thing or two about POTS and wondered if you had found one? I hope you're doing well! Thanks for any help for a mom of three who might have this..?

Have you ever found one? I am looking as well!

Hi! just wondering if you ever met the specialist in salt lake and who it was? I am trying to find one as well! Thanks!

Hi, I'm looking for a POTS doc in SLC also! Did you ever find one?

HollySC, I have not found anyone but hope someone else on this thread has!!! My family doc said she can prescribe me a beta blocker and I am thinking of trying Propranolol. For some people it works wonders. Others it can make worse, but I'm willing to try it. You might try a cardiologist or neurologist. My original doctor was in Ohio that diagnosed me...he was a neurologist. Good luck! I'd love to know if you find someone!

Ok, this is what I've been able to find out. According to people who are very knowledgeable on the subject, these 3 docs keep coming up as great POTS specialists in Utah (other than Dr. Etheridge, who is also supposed to be very good for pediatric patients): Dr. Melissa Cortez (U of U neurology), Dr. Craig Coleby (Ganger Clinic in Riverton - only sees POTS patients under 21) and Dr. Jeffrey Osborn at IMC. I haven't actually seen any of these docs yet but I'm scheduling at appointment with Dr. Osborn so I'll let you know how it goes :)

Hi I had a thyroidectomy last year because of a lot of crazy symptoms and am still having most all the symptoms as prior to surgery. My thyroid doc finally referred me to Dr. Craig Colbey at Granger Medical in Riverton as a POTS patient. He confirmed the pots and has been extremely knowledgeable. I just wanted to comment because he is great and you mentioned he doesn't treat adults over 21 but I'm 30 and he treats people of all ages. If you are still looking for a doctor, I would recommend giving him a shot! I hope you all begin to feel better soon!

4 More Responses

I'm so sorry that you are getting the run around from the doctors! There just aren't enough of them that really know what POTS is. I don't faint like as often as you do, but I also feel the shutting down that you described, and I feel every day like I have the flu. That's exactly how I describe it. Keep working to find a doctor that knows about POTS. I was lucky to find a cardiologist that is familiar with it, but even he doesn't understand I think, all of the symptoms. There are so many. I agree with Sallie 84's advice, just keep looking for a doctor to help you. Call the cardiologists in your area until you find someone, or call the Mayo clinic and ask for a referral. Eventually you will find someone. When you do, hopefully they will find the right combination of meds to help you stop fainting so much. I have been on Bystolic for racing heart, and it does help some, so that I can get around a bit. Other than that, I'm learning to live with the symptoms. Best of luck to you, and don't give up!

Do you get neurological pains in your arms and legs and painful joints with cold spots Are you in the us. Also are you able to work/go to school/college?

yes, I always feel like I have the flu, and I have horible migraines. Thank you.

Bless you you are not dying you need to see a specialist in Pots Syndrome. Mayo clinic perhaps if you in the USA or do a search for that or Orthostatic intollerence. Please keep me posted. When you say you felt like your body was shutting down that is just how my son described it. Do you think you had flu at the time and do you get headaches? Good Luck