Post

Just Diagnosed.

Hey there, i'm Emily, i am fifteen and have been living with Postural Orthostatic Tachycardia Syndrome for five months now but i was just diagnosed today. For a long time me and my family thought i had Pots although doctors wouldn't take it seriously but after having a tilt table test last week, results showed that i do infact have it. i have litteraly been bed bound for these five months and unable to go to school. over this time have had so many tests you wouldn't believe! a year a go i was a perfectly healthy teenager but that all changed in December after going to a concert one night. i had been stood up for the whole evening when i suddenly felt like i was going to pass out, i could hardly hear anything and had to leave. Ever since that night i have been ill and had faintness when i stand up. Soon i will be put on medication but i'm scared what's going to happen if they don't help, will i just have to stay like this? my friends and family have been so supportive and it means so much but sometimes it's hard when they can't understand fully how i'm feeling. We're all going through pretty much the same thing and i'd love to talk to anyone who is willing. thank you! 
EmilyJanee EmilyJanee 13-15, F 6 Responses Apr 20, 2011

Your Response

Cancel

aww dont be sorry! i tried flourinef and it did nothing for me... a also tried midodrine, cymbalta, mestinon, toporol, metoprolol, neurontin, adivan, seroquel, and some others. they were all for different symptoms though. some good news and bad... good news is ive had some much better days! mornings are very rough for me, but for the past few days i was able to get out and see some of my friends who are home from college now. bad news.. today is kinda a crapy crash day for me. i guess thats just how pots is. right now, i am on zoloft and ridalin, although i don't feel the ridalin has kicked in yet. every patient is different though, and ive spoken to ppl who have had success with welbutrim, provigil, mestinon, midodrine... all depends on the severity ofyour symptoms and how sensitive you are to meds. thats whats good about talking to other ppl, you can get recommendations about what meds to try. unfortunately, im one of those ppl who gets sick from every med haha so luckily what i am on now doesn't give me side effects. also, i take a quarter of metoprolol which is a beta blocker. when i took a whole, it made me tooo fatigued and dropped my pressure, but i take like a baby amount and it works great. compression stockings are awesome, but you can't really wear them once it gets hot out. hm i also have a lot of trouble showering in the morning so i put a chair in the shower, which helps a lot. as for exercise, i do what i can. the drs. say 30 mins of aerobics a day but i can't do that, so i do waht i can. i always do leg conditioning and when i can i use my rower. pots is terrible, and it seems that everyone has different recovery rates and successes, so its hard to predict how you'll feel. but my best advice is to seek out as much drs and medical help that you can, and if one dr doesn't seem helpful, find another. like i said, i have been to over 20 drs and we even went out of state twice. even though its a year later, i finally found a dr. who i think can really help me, so its better late than never. i hope your doing well! hang in there with school.. i wish i could tutor you but thats kinda hard over email hahaha. if you have any questions feel free to message me whenever u need!<br />
rebecca

Hello! i'm sorry this is a very late reply to your message! i'm sorry you had to wait so long to be diagnosed! i know exactly what you mean though, i was told by so many doctors that it was probably anxiety which was horrible when i knew how physically ill i was. i've had to take a year out of school and i might not be able to go back next year, i'm in year 10 so i am meant to have a lot of GCSE exams this year which i can't do and the only time i'm able to get out is to go to the hospital because of how ill i feel. which medications have you tried? i was recently put on my first medication, Fludrocortisone but had to come off it because of how bad the side effects were. Thank you so much :) it really means a lot, would be great to be able to talk to you more! i'm not sure how soon you'll get this but would it be easier to email? it really would be good to talk about what's worked for you and everything. sorry again at how late this is! hope it's not too bad with your POTS at the moment lovely! x

hi emily! im 19 years old, and was diagnosed with pots just before turning 18, so i have been sick for just over a year. basically, the past year has been a terrible whirlwind of drs, treatments, meds, and tests. i had been to over 20 drs, had 6 mri's, 4 tilt tables, misdiagnosed with lymes, fibromyalgia, pheochromocytoma, vasovagal syncope, "depression/ anxiey," and of course, i was told i was just fine. i had been on countless medications, most of which made me violently ill or had severe side affects. i was abe to graduate high school, however, i do understand how hard it is to miss so much school and be isolated. i had to defer my first year of college, and i will probably be taking classes locally this september. im not sure how much of a help i can be, but i have been sick for over a year and have come to understand this syndrome pretty well, so im willing to answer any questions and provide any info that i can! id love to share the rest of my story with you and recommend what has and hasn't worked for me, as well as what meds i tried. i hope to hear from u soon! hang in there!<br />
-becca

It does seem like POTS is becoming more and more common. So far my doctor has put me on Atenolol, Lexapro, Vitamins (recommended), Florinef, Pindolol, and a sodium chloride tablet. Of course I wasn't on all of those at the same time. First I was on Atenolol and Lexapro. The Atenolol helped tremendously at first with the POTS symptoms. Unfortunately, that was short lived. The Lexapro helps with my depression and the stomach pains I have accompanied with the POTS. I wasn't prescribed vitamins but my doctor strongly recommended a multi-vitamin. POTS tends to dehydrated the body of a lot of necessary things so taking the vitamins helps with energy and your body's overall health. I think you should think about taking a multi-vitamin as well. Be sure to check the ingredients though! Sometimes there is caffeine and fructose corn syrup. Also, if you are sensitive to glucose, then look out for that as well. Once my POTS symptoms came back ten-fold, my doctor switched my medications around. I was put on Pindolol instead of the Atenolol. My doctor said more people had luck with the Pindolol. I had no results what so ever, however that doesn't mean it wouldn't work for someone else. My doctor also put me on Florinef and the sodium chloride tablet to help raise my blood pressure. Even though I am on those medications, my blood pressure in still like 80/40 on average. I go back to my doctor soon to hopefully figure out something else. If you have a really high heart rate around 120 or over, I recommend the Atenolol. If you have the really low blood pressure under something like 100/60 I would recommend the sodium chloride tablets. Another thing is try to stay away from pain medications, they make your blood pressure lower. My heart rate was the main problem at first but my blood pressure is getting worse. Soon you will learn your limits as to what you can do. If you can walk a little at a time and see how far you can get. Hopefully you will see an improvement! I have a feeling after the some medications, little improvements will start to appear. And believe me, those little improvements mean so much! I'm always here to help. =]

Yeah, in a way it's a relief to know that the doctors are taking it more seriously although it's a hard thing to deal with. i really think Pots needs to be known about by more doctors when it does seem like it's becoming more common. Okay, the doctor seemed to make it out as if the medication wasn't likely to work very well and it could have bad side effects but i'm hoping that one of them can help me. My parents have to choose a medication for me to start on this weekend, i know it's different with each person but what did you find helped you the most for a while? my heart rate is very high and my blood pressure tends to be too, the tilt test bought my heart rate up to 280. We often borrow a blood pressure machine from my next door neighbour which does seem to prove useful although my heart rate is the main problem. Thank you so much for the tips on feeling faint, it's awful barely being able to stand up at the moment and i really want to slowly get myself doing things again. i haven't put much about my symptoms on her but i get; Faintness (being my main problem), Dizziness, Fatigue, Nausea and sometime vomiting, Headaches, Stomach pains, Depression, Breathlessness, Bad temperature control (getting very hot) the list goes on but those are my main symptoms, it annoys me how I never really seem to have better days. I always have to use a wheel chair going into hospital and if I carry on like this we probably should look into getting one as it would help me to get to places. Thank you so much for your quick reply, it means a lot to have support from people who know what I’m going through. i agree, We all need to stick together :)

I'm glad they were able to diagnose you so early. Unfortunately, the doctors didn't believe you at first. That's what is messed up in the medical field. They should put everything into consideration no matter how rare the condition. I know what it's like to go from the average teen to the sick teen. Have faith in the medication. Every POTS patient is different. Some people benefit from it, some don't. For me, it worked for a while, but then it had no effect. There are also many different medications to try so it might take a while to figure out. have some tips for you about the faint feeling you get when you stand up. Never stand up quickly. Take your time. When you stand up quickly, your tachycardia will be higher and your blood pressure will go lower. Like I've told other people, if you don't have a blood pressure machine please please please get one! It's a great thing to have around especially if you are increasing your salt intake. Some people with POTS have been known to have spikes in their blood pressure. I really don't know much about your case. Do you have really low blood pressure or is it higher and do you have high heart rates? There is a lot of questions I actually have for everyone who has POTS because everyone is different. When you go to the doctor be sure to tell them everything. And I mean everything. Even if you don't think it is related to your POTS, because you never know; it might end up being related. Speaking up is the most important thing to do. If you are having trouble going places, don't be afraid to use a wheelchair at the places or even buying one. I will probably end up buying one for myself, because I want to go places and I can't walk that far without feeling faint. If you ever need support or advice, I'm always here for you. Just like everyone with POTS; we're like family.