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I Hate POTS!!

So here is my story...

August 14, 2008: While driving down the road I have this sharp pain in my left chest and i start to black out. I manage to get pulled over and catch my breath, I thought I was having a heart attack and dying. So after a while I start to feel a little better but "dazed" and drive home. The next morning I still feel dazed and go to see my doctor and he thinks that i have an ear infection?(this was the first of many mis-diagnosis and worthless treatments that I have experienced in the past few years)   All of you who have POTS already knows what happens next so I will skip all of the Doctors and Testing which all results come back "normal", Now I am on the 3rd and 4th round of various doctors here in town. (this dazed, light-headed, heavy-headed, dizzy, confused, exhausted, painful, dreadful, like a dream feeling has been a non-stop constant 24 hours a day everyday for almost 2 years now)

Fast forward to October 2009, I finally find a doctor out of town who supposedly knows about POTS and he does the Tilt Table Test and determines that I do indeed have POTS, now he refers me back to my cardiologist here in town for treatments..

Well here is where the problem starts, My doc here says that I don't have POTS, he insists that I need a pace maker, now I left that detail out but he has also did the tilt table test on me 6 months prior and he wanted to give me a pace maker, instead he implanted a Loop Recorder in my chest (which has never shown any "abnormal" results) so now I am stuck with a device in my chest, a nasty scar and a doctor that will not treat me..

It seems that this is getting worse and I have not been able to get out of bed since Christmas, and everyone seems to treat me like I am just being lazy and faking it. Trust me I don't enjoy lying in bed all day everyday..as I am someone who has always spent most of my life outside with my job or even off-time I was always outdoors..

I am a single Father with a 15 year old son and unfortunatly I got sick the year he started high school, so I have missed out on most of his sporting events and stuff like that, which has really been hard on me.

Also I have noticed that most of the people who have POTS seem to be women, so I guess it is one of the reasons that my doctors have overlooked this the first time around.

I live in Texas. So, if anyone has suggestions on Doctors or can point me in the right direction, I would really appreciate it... As I am finding out most doctors are in the dark when it comes to POTS.. Any help would be great...

g04th g04th 36-40, M 15 Responses Feb 1, 2010

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Hi I just recently got diagnosed with pots and felt the exact same as you. I'm an 18 year old male and there's a dr in Dallas, McKinney, and Denton tx called the heartbeat clinic. He is very understanding and can get you in asap. I have already felt symptoms getting better through his care. I highly advise giving him a call

I live in Texas as well and have a background in medicine. I am 41 YO female and I get the same results from doctors and friends- that I am lazy and faking it and I am just depressed. There really are no doctors in Texas that treat POTS- most send you to cleveland or mayo. What part of Texas are you in. Dr. Ben Levine at the med school in Dallas does studies- it is probably a year wait and there is one guy at medical city that you can usually see the same week that is very familiar with POTS.

Thank you for your comment and to answer your question I live in the Texas Panhandle...unfortunately I have already been to "Dr Levine" (and I say that lightly) a few years ago...I was indeed on the waiting list for over a year and when I finally got the appointment and traveled all the way to Dallas, he basically spent 10 min checking routine stuff and says: "...yep, you have POTS...DEAL WITH IT" ...so needless to say I was NOT impressed, it was a total waste of time and money.

In 2010...I also spent two weeks at Mayo in MN. (now that place was impressive!) yet still no help for me.

So, here I am 5 years later and no more relief or answers really than day 1 (Aug 8 2008)...only more mysterious symptoms.

Hi, I was just diagnosed this week with POTS.... Like many of you have been told by doctors and even EMTs that I was faking or just didn't want to be home. that being said, I am a mother of two wonderful kids 6yr old and 11yr old. For the last year and a half I have had to have a total hysterectomy and 6 other surgeries and than in January of this year started having blood pressure issues. Anyway.... February I started having fainting spells, extreme exhaustion, pulse rate over 120, etc and in and out of the hospital ( have chronic migraines for 4 yrs as well and asthma). My mother has been going through things as well and it's also always the same thing "I DON'T KNOW or IT'S ALL IN YOUR HEAD, but JUST TAKE THIS". So I live in Tx and she lives in Ca and it is hard to get the information to our doctors to speak to each other. have found out hospitals have no compassion and don't care, they just want you in and out which sucks since it seems like most drs don't know about POTS....
Now I worry since they say this is also hereditary, that one or both of my kids could end up with this... and that breaks my heart, because I wouldn't wish this on my worst enemy!!!! now looking for support groups here to help me get through knowing that I have POTS and help dealing with the everyday symptoms. if anyone has info on support groups or anything else that will help I would be very grateful!!! Thanks for letting me vent.

Unfortunately I recognise the symptoms in my son as well. I've suffered from this my whole life and was labeled "sickly" and "lazy" by my family. It's so very frustrating. Fortunately I understand and he is supported and given the many things that have helped me over the years.

I am a 22 year old and was recently diagnosed with POTS. My endocrinologist prescribed me a cortisone style steroid called Florinef but it has a lot of side affects which has not helped me in the slightest. If anything, it increases the severity of my symptoms and caused joint and muscle pain. Apparently there is nothing other than that they can do for me. I would love to hear any other alternative treatments available here in Australia. I also have type 1 Diabetes (Juvenile) and the Florinef wreaks havoc on my blood sugar levels. Everyday is a struggle for me and I can no longer work or even go for a walk, and small activities have become difficult i.e groceries, getting around the house, cleaning etc. I am constantly dizzy, weak, extremely lethargic, experience sore muscles and joints, migraines and headaches and double vision as well as losing my vision upon standing. It is a somewhat crippling disorder and I feel like I am burdening my mother and my boyfriend who have to help me everyday when they should be able to live their own lives. I often feel anxious, stressed and depressed and I am a far cry from the out going, energetic, happy and care free girl that I used to be.

Idk if your son is in sports and your missing his games or if you just want to hang out etc. but I DO have POTS and it looks as though my dad does as well we are waiting on test results. Some things you can do to be outside like compression socks and being in the shade (COMPRESSION SOCKS!!)

Thanks for your comments...my son is now 18 and out of the house but I did indeed miss-out on most of his sporting events as well as other activities, also I have tried the compression socks (they did not do much for me) but i know they do help a lot of people...

I have had POTS since i was 14 years old, im now 23. It is hard disorder to live with and for many years i was wrongly diganosed. I found the most amazing doctor in victoria, Australia. She has improved my life so much. I dont have a pace maker. I have just finished uni and am now working full time as a radiographer. I know its hard and i have to travel to see my cardiology, but it is truely worth it if you fiond that doctor that can improve your life. Good Luck<br />
xo

Hi, my partner has every symptom relative to POTS. We live in Melbourne and she has suffered from this for years. Having seen dozens of specialist and having dozens of tests which come back normal, we are trying to find someone in Melbourne who is experienced with this. If you don't mind would you be able to notify me of any physicians you know of who specialise in POTS. Thank you so much.
Jules

Hi I am also from Victoria, Australia and i am desperate to find a doctor for my daughter who is 13 years old. She has been unwell for 12 months i really need a doctor who will test her for pots as she has every symptom. I would appreciate it so very much if you could give me the name of the specialist you know of.
Thank you.

Hi, was just wondering who your specialist was/is, we also live in Australia and we need someone who can help us with my 11 year old daughter. We have been through the ringer and really cant find a specialist. We are in Sydney Australia

I am 32 years old i started getting sick in 1996 in oct of 2000 (w/a 3yr old son and a 1yr old baby girl) i had a mri because my dr was looking for MS what they found was arnold chiari over the phn i got this news. I was sent straight to the nuro surgon and was on the operating table within a week. within one year of that i started haveing heart problems couldnt walk felt like i was dieing the heart doc i was seeing at the time did 2 EP Study and Oblations on my heart DO NOT LET A DR DO THIS TO YOU!!!! I HAVE A PACE MAKER NOW BECAUSE OF THAT!! I see Dr. Bruce at the Chattanooga heart Ins. I am treated for POTS, Dysautanomia,pace maker,familure trmors,fibromialgia...ect. one thing leads to another as the years go on whatch for new symptoms of these other health problems. like you i want more help some times i want to give up but my kids keep me going (now 14 and 11) when you feel the worst think of your son. Mabey one day there will be at lest answers for us. Good luck keep looking and be hopefull!

I am under the care of the vanderbilt cardiologists and specialists. They are wonderful! Like most people with POTS I had numerous misdiagnosis from various doctors Vanderbilt hit the nail on the head instantly.

Hi Sorry to here you are suffering. There is a Dr Benjamin Levine in Texas who has done research into POTS, Try a search. My Son has not been diagnosed with POTS I would love to keep in touch, You need to find a good autonomic specialist who will diagnosis the type of Pots you have and then suggest some treatment, Have you looked into allergies at all. How did you Pots start did you have a virus at the time. Please keep in touch as we are trying to find answers ourselves. It is very hard for you with a Son to look after. Financially as well as physically.

My doctor for pots, who is amazing and in the USA, is doctor Moak in D.C. at Childrens Hospital

Hang in there.<br />
I know how difficult it is.<br />
Good news. There are doctors who deal with POTS in TX. <br />
http://www.dinet.org/physicians.htm#United%20Kingdom<br />
<br />
Find TX in the list, and go to that doctor. <br />
<br />
<br />
good luck.

Hi simone71 , can you provide the names of some of the POTS doctors that you know of in Australia? Any names would be greatly appreciated. Thanks!

Hello, first off don't give up! I have had POTS for 3 years now and it sucks, but whatever you do don't ever give up. The reason your friends and family think your faking it is because they don't understand. I have lost many friends to this disease because I am always at home asleep. But I still have my grandparents (who i live with). Which part of Texas do you live in? I also live in Texas and have found a wonderful doctor in the Houston area. He specializes in POTS but sadly only sees children and teenagers. Send me a message with some of your symptoms and I will try to help you by telling you what I do. I hope you feel better soon! I hope to hear from you soon, maybe we can be POTS friends.<br />
-Ashlie

I don't know if you still check this but would love the name of your wonderful doc here in houston.

hey I'm from Texas. I have POTS and I am in desperate need for a doctor for POTS in Texas. I went to Minnesota, to Mayo Clinic and was diagnosed. but I really need a doctor here in Texas. Houston is a lot closer than Minnesota.. please share some doctor's names if possible.

I had suggested to you to go see Blair Grubb in Cleveland on my own story page, but now I realize that you are pretty far from there. If you can arrange the trip somehow, I'd encourage you to go. The other suggestion I have is that I know they are doing POTS research/treatment at Vanderbilt University in Tennessee. Here's a link for you to get patient information: http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788 <br />
I think that would be more doable for you, but probably still quite a trip. Best of luck! Hang in there.

As I'm in Australia my suggestions for doctors would be pointless, I now have a great one by the way, but I have noticed on the internet that the mayo clinic over there does a lot of research on it and are always asking for guinea pigs.<br />
I agree with you about the frustration of everyone thinking you are lazy and fake, it's almost as frustrating as the condition.

Hi i am also in Australia and desperately trying to find a doctor for my 13 yr old daughter who has all the symptoms of pots. I would appreciate so greatly if you could tell me the name of the great doctor you see. We have seen many doctors but keep being told she has CFS which i strongly believe after reading about pots that she actually has pots. Thank you for sharing your experience and i look forward to finding a doctor who knows more about this syndrome and can help us.