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What I Nightmare!! - I Certainly Could Use Some Help:)


Guest danielvasel
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Guest danielvasel

hi everybody... i?ve been looking for a POTS forum for a while, i?m so happy i found this one... 60.000 people!!!!! uow!!

i just found out i have pots... it?s just so sad to know that symptoms are more likely to NOT got away, and that ill probally die in this condition(im saying this because i know that spontaneous recovery only happens for post viral and teenagers cases)....

and you know what the worst thing is? i was actually feeling great(by great i mean AWESOME) some weeks ago(when i didnt?t have pots).... i was so excited about my life, and also about LIFE itself....

now everything has changed... i?m a "living dead"(in my country id say im a ZUMBI).... if i stand for more than 3, 4 hours during the day, i feel so exausted, so tired... and then at night, i can?t sleep AT ALL.... if i stay in bed(actually in the couch) the whole day, things aren?t that bad....then i actually can read, can write, etc....

so this is not a choice one would have to make, when he?s 22... it?s like "god", the "universe" is giving you 2 options:

1) forget about all your plans in life, forget about having fun, forget about having the life you always wanted to have and lie down for the whole day, every day, until you die

2) do whatever you want to do... but im warning you, you?ll have to pay a price(you probally know what the "price" is)

i was never a big crier... i only cried when my relatives died... but now i can?t help it.... i can?t help thinking that ill never get better, and maybe ill get even worse.... and then I cry

as for parents support? forget it.... they don?t even acknowledge im sick.... for them, it?s just something in my head... or even worse, they think im pretending to have it, as an excuse not studying or working(i remember one day when i told them that most of people with pots are unable to work full time, and sometimes are unable to work at all.... they just ignored me, and some days later said that that?s exactly what i want, to be useless, to do nothing)....

one day i was crying, and my mother looked at me and said " i know you are pretending.... you shouldnt do this.... one day you?ll have a serious disease, then you should cry"... she had told me some pretty nasty things in the past, but this was by far the worst... and you know what? my parents are actually threatening me, they are saying that "if you dont get your shi... together in a few weeks/months, we?lll throw you out of the house, you?ll live on the street"..... and they really mean it.... they are getting it all wrong.... they actually have no idea of what?s going on with me.... they said that IF i have something, it is psychological, FOR SURE.... they said that the only help i should get is from a psychologist..... but i don?t want to go to a psychologist, i already waste too much time trying to sleep...

unfortunally they don?t speak english... my native language is portuguese(im from brazil), and you can?t find NOTHING about pots in my language!!!!!!!!!!! so they just hear what the doctors say about it....when i tell them i already know much more about POTS than most of the doctors, the laugh at me, they tell me im going crazy... they totally underestimate what one can learn through the internet....

one of the doctors said it was nothing, it was just due to DECONDITIONING....(yeah, right, i was an athlete until very recently, i exercised every single day, i was feeling great some weeks ago, i could run, i could do whatever i wanted without feeling tired, and now, for no reason, im deconditioned? haha, that?s a laugh, the doctors really have it all figured out, dont they :) ?)

so im trying to find an specialist in POTS.... i know there is at least one in my country, but its in sao paulo, very far from where i live, my parents would never take me there(not unless they realized that my "condition" is "real")

well, i just have one more thing to say, this is actually the most adequate expression for my situation:

"WHAT A PICKLE"!!!!! :):D:D

so i thank you for reading my post, and if you can give me some ideias of what i should/could do, it would be great

i actually have lots of questions, i thought about asking them in here(in this topic), but i think it will be better if i post them separatedly

take care you all

and I sincerely wish that all of you will get better.... and let?s hope the scientists find a cure for us all!!(wouldn?t that be awesome? then we?d have to get together and party for at least a month :):) )

PS: sorry about my bad "english"

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Hello danielvasel,

Your English is better than mine and I live in England!!!

Maybe you could write to or Email a DR. in the states and explain your situation, and ask if they have any litreture in Portuguese, it may help your parents to understand your problems if they can read something from a Dr. that knows their subject.

Please take care,

Anna

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Guest danielvasel
Hello danielvasel,

1 - Your English is better than mine and I live in England!!!

2- Maybe you could write to or Email a DR. in the states and explain your situation, and ask if they have any litreture in Portuguese, it may help your parents to understand your problems if they can read something from a Dr. that knows their subject.

Please take care,

Anna

1- hmmm, an english girl... that reminds of something very nice, the first and the only girl I ever "loved" was english too :)

2- Yeah, this is actually a pretty good idea, I?ll start by emailing some important clinics like Mayo for example*, thanks :)

take care Anna

cheers!!

* can anyone tell me the name of other clinics that are speciazed in treating POTS?(could be anywhere in the world)

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Welcome and sorry to hear all that you are going through. It is very difficult to struggle with the illness and not have family support. Unfortunately, for too many this is the case- especially when little is known by the general public regarding this illness. I always say you can never fully understand unless you are living in that persons shoes.

Do you have any other family support or friends?? Would your parents really ask you to leave? I would be concerned that all the additional family stress would certainly affect your illness, emotionally and physically.

What about a medical translator? Someone in your country, area who is qualified to translate the material from perhaps the DINET website for your family and medical providers? Someone from local university?? Not sure what is available there?

I have to say the line about deconditioning makes me so angry--- we are deconditoned because of inability to tolerate exercise!!! Well, I should speak for myself -- but I assume most would agree. I was never an athlete, but certainly was someone who enjoyed walking at least!!

Hang in there and I hope you find someone, perhaps from the website to guide you. :)

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Guest danielvasel
Is there anyone else beside your parents who can take you to the doctor in Sao Paolo?

i?ve actually been thinking about it... unfortunally i?ve spent all my money travelling(yeah, yeah, young and stupid, i know i know :) )... i could ask help from good friends, but none of them are rich, and I know that I would only be able to pay them back when I start working(and I?m still not sure if ill ever be able to work)... i know they wouldnt mind borrowing something like 300 dollars, but i can?t ask them for 3.000 dollars, ya know what i mean?

so I definitely have to rely on my parents.... it?s up to me to try and convince them that what I have is real, and is not something psychological(actually, even if it was psychological it would be real, but they don?t seem to understand that), and that im not "making this up"(which would be insane....)

thanks for the answer "futurehope"

take care

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Hi Daniel, I am sorry to read about your struggle. It is hard when your family and friends are not suportive, my family was not especially supportive. I found the most support from other people with POTS who co uld relate to my experience.

Let me just say that many of us felt hopeless like you in the beginning! It's depressing when every day you wake up and are hopeful maybe it will be better and it's not...it's not like the flu where you know in a couple of weeks you'll be better.

Once I got on medication (about 6 months after my symptoms started) I began to feel a little better, not great, but more functional...then over time and trying new medications, it became something I had to learn to live with...2 years later I am better than I was in the beginning and after seeing a POTS specialist in June I was told there was a reasonable chance I would continue to recover over the next few years and lead a pretty normal life...he said I may not ever be back to where I was before, but I'd likely be much better than I was at the onset.

One thing about the focus everyone has on the "post viral" thing. Yes, this is what all the articles say and that is the best prognosis but I was told that there is post viral subgroup of POTS and abrupt onset subgroup and they are similar in terms of prognosis...meaning if the onset in sudden, not slowly over the course of your life, there is a pretty good chance of recovery over 2-5 years. I did not remeber having a "virus" but I had abrupt onset after diagnosis with an autoimmune gastrointentinal disorder -- that was likely the cause of my POTS.

I was also told that exercise was the best thing I could do to help my recovery and that the BEST indicator in terms of future recovery is whether you show any improvement over time, if you do that's best.

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Guest danielvasel

Welcome and sorry to hear all that you are going through.

thanks :D

It is very difficult to struggle with the illness and not have family support.

yeah, exactly... things would be much better if my mom tried to put herself in my shoes... but for her, the only thing that matters is what the doctors say.... and unfortunally, all the doctors so far said that my "condition" is not something one should worry about... i can?t help to think that they are all irresponsables for saying such a thing.... i think i would rather have diabetes, for example....

Unfortunately, for too many this is the case- especially when little is known by the general public regarding this illness.

really? do you know other people in my situation(with no support WHATSOEVER from their parents)? well, i might be wrong, but i think most parents would be fully supportive(at least those parents who really love their children)

I always say you can never fully understand unless you are living in that persons shoes.

yes, that?s exactly what i think... one would have to go through what I am to understand the seriousness of this condition.... maybe people "understand" it intellectually, verbally, but that doesn?t mean they understand it.... im sure people in this forum know what im talking about...

Do you have any other family support or friends??

i only have my parents(i also have a brother and a sister, but we don?t like each other)

well, i used to have friends until very recently, i just moved to a new city... but yeah, their are still my friends, i could count on them for sure... but as i said before, none of them are rich, so i can?t ask too much, as Im not gonna be able to pay them back anytime soon(i could take me years and years)

Would your parents really ask you to leave?

yes, they would... they?ve actually done it one time last year, but that?s another story, doesn?t have nothing to do with this situation, i don?t want to bore you all(more than i already am :) ) with other stuff

I would be concerned that all the additional family stress would certainly affect your illness, emotionally and physically.

oh yeah, no doubt it?s making things worse....

What about a medical translator? Someone in your country, area who is qualified to translate the material from perhaps the DINET website for your family and medical providers? Someone from local university?? Not sure what is available there?

i can?t really hire professional ones, cuz i don?t have money, and my parents would never pay for it... my parents don?t believe that what i tell them about pots is true, cuz i take the information from the internet... here in brazil you hear all kinds of things about the internet, that it is made for people who have nothing to do, that you can?t trust anything you see there, that it is dangerous and so on.... im sure things aren~t so different in the U.S.

I have to say the line about deconditioning makes me so angry---

haha, it?s just outrageous, isn?t it? there should be a legal way to sue this "doctor" for it

and you know what? the doctor got so pissed when i started telling him about POTS, about my symptoms etc... i was only telling him FACTS.... and you know what he told me? WHY DID YOU COME HERE IF YOU ALREADY KNOW EVERYTHING?(he actually yelled at me) that?s just stupid.... i was just trying to help him figure out what i had

Hang in there and I hope you find someone, perhaps from the website to guide you.

yeah, i won?t give up.... sometimes i think about suicide, but it?s just no worth it, maybe things will get better...

so take care nadine(by the way, that?s a beautiful name...when(if) i have a little girl, that will be her name for sure :) )

Hi

Welcome aboard,

You can take a look at this section. It will answer many of your questions:

http://dinet.ipbhost.com/index.php?showtopic=1954

Have a nice reading.

thanks a bunch!!!!!

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Daniel, send me an email off group and I will be willing to send you a recent article on POTS that was sent to me by the expert I saw, he has written and researched much about POTS. Maybe you can show it to your doctor and your parents. I sent it to my parents which helped and I gave it to my regular doctor who also treated me like it was all in my head.

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Hey there,

Wanted to welcome you and let you know that even though you feel so alone that your not.

The lack of support doesn't help in your situation, but I do understand how it feels to not have support.

Of course mine is a bit different, but it hurts the same. The ones you need the most are the ones who let you down.

I wish I could help more but all I can do is offer MY support, it's not much, but I'm here for you. This group is the best and I hope you find comfort/answers or whatever it is your needing from this forum.

Take care,

Amber :(

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Guest CyberPixie

Welcome to our potsy home :( Another English girl (well, woman!) here.

Can totally relate to everything you are going through and you're certainly not alone. (hugs)

Drink lots! Up your salt intake, up your potassium, so get gulping those bananas, apricots, veggies etc. Take a magnesium supplement up to 350mg a day. Make sure you get your calcium too. Oh and don't lay down too much, it makes things much worse!

Try and reduce whatever stress you have, hard I know.

As time goes on you'll get to know what you can and can't do and will adjust. You'll still have bad days and feel down sometimes but you have us here to get you through it.

Don't worry about your English, it's perfect!

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Guest dionna

i am sorry that you haven't found any support. but you have found us and i promise we all know what you are going through in one way or another.

this place is my second place for support and i visit this site just about everyday... depending on how worn out i am. my first place is my boyfriend... who has the same condition. we actually met at the hospital. he has been the best thing to ever happen to me and i did drop all the plans i had for my life... but for the better. my plan is to spend the rest of my life with him. get married and have babies. be each others- other half. we talk about it all the time and how blessed we both actually are.

so with that (... i am a christian...) i believe that everything happens for a reason and that it isn't our plan but rather God's plan for us to be in the condition we are in. if He wants us to get better, we will... if not, there is a reason. i believe that i found my reason. my man! you too will find something good come of this. hopefully, just keep your eyes open.

you were talking about the deconditioned theory... i don't know if you know much about the US military but i was a UNITED STATES MARINE about to ship out to IRAQ! when i got POTS. i was 18 at the time but now i'm 20. i was one of the most fit females in the entire marine corps. i had some of the highest scores in all training categories. so no. you are not just deconditioned! let that comment from the doctors just roll of of your back, please. actually let all of the negative comments just roll. i had to and still do. i hate it when someone tells me that i am NOT in pain! yeah how they know? so what if they have a degree? i am still more intelligent about my own body... even with the brain fog and memory loss!

i am a fainter. i faint a lot actually (350 to 400 times in 2 years now) and if i didn't, i don't think many would believe me either. in fact that is what it takes for me to convince someone that i am for real... i have to bust my head open or dislocate something. that brings up my question... do you faint? if so... how could someone watch you and fall like that and think you are just bluffing?

people would always ask me if i was okay while i was still in the military and i would tell them yes, that i felt fine. although i didn't. you see they were trying to discharge me and i didn't want that. finally i got so bad that i realized if i didn't get out i would be jeopardizing the LIVES of everyone else. so i decided to give in... okay i had a point.... they all knew that i really wasn't okay. they could just look at my face or my body to see something was wrong... red or pale face, swelling, lack of sweat, my pupils weren't dilated correctly, my posture, how i walked- dizzy or lightheaded, sometimes vertigo- so i was stumbling or holding on to something, the fainting of course- that was hard to miss, ummm and some other things. perhaps you could show your parents that. that is a visual! you could also show them your heart rate when you stand. do you vomit when you feel nauseated? that is another visual! gross but hey it would get the point across. i puked on my boyfriend before he was my boyfriend and that was just a few days after i had met him. embarrasing. i was totally crushing on him and then i puked all over him. he believed me the entire time though. he had seen me faint a few times before that.

like i wrote a while back ago. it is hard to just believe something you can not see. so if you can make someone see, then i think they would just be ignorant to not believe you! it would be on them, not you.

doctors you could see... i went to NIH, but a lot on this forum go to Mayo or Vanderbuilt. so any of those would be an option.

any questions you have... they would be welcome and someone on here would know what you mean and would be glad to answer the question. i hope you take care and i hope you have some good days.

dionna :(

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Guest danielvasel
Hey there,

Wanted to welcome you and let you know that even though you feel so alone that your not.

Yeah, as i said before im glad i found this forum...

The lack of support doesn't help in your situation, but I do understand how it feels to not have support.

Of course mine is a bit different, but it hurts the same. The ones you need the most are the ones who let you down.

exactly, i need my mom to believe me right now.... and it?s not like im asking to much, im just asking her to analyse the facts...

I wish I could help more but all I can do is offer MY support, it's not much, but I'm here for you. This group is the best and I hope you find comfort/answers or whatever it is your needing from this forum.

you?re already helping :(

take care amber.... thanks a lot for your reply :(

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Guest danielvasel
Welcome to our potsy home :( Another English girl (well, woman!) here.

thanks!! hehe, good memories, good memories :(

Can totally relate to everything you are going through and you're certainly not alone. (hugs)

hmmm, im aware of it, but i do wish I can find some people in my city with POTS...and im sure they are out there, 400.000 people live here.... hugs to you too!! :(

Drink lots! Up your salt intake, up your potassium, so get gulping those bananas, apricots, veggies etc. Take a magnesium supplement up to 350mg a day. Make sure you get your calcium too. Oh and don't lay down too much, it makes things much worse!

thanks for the advise :)

Try and reduce whatever stress you have, hard I know.

well, i guess this situtation itself(this condition -POTS) is what makes me so stressful... but i?m trying some things, like meditation for example...

my mom tells me I should forget about it.... haha, i can?t help myself not to laugh when I think about this "suggestion", how could i possibly forget something that is ruining my life... it would actually be great if i could just "forget about it"

As time goes on you'll get to know what you can and can't do and will adjust. You'll still have bad days and feel down sometimes but you have us here to get you through it.

hmmm, the bad days!! it?s actually going on right now!! but im sure it will get better in a few days..... and then it will get worse again!! and then...... hehe

Don't worry about your English, it's perfect!

thanks :)

so talk to ya later cyberpixe:)

daniel

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Guest danielvasel
you were talking about the deconditioned theory... i don't know if you know much about the US military but i was a UNITED STATES MARINE about to ship out to IRAQ! when i got POTS. i was 18 at the time but now i'm 20. i was one of the most fit females in the entire marine corps. i had some of the highest scores in all training categories. so no. you are not just deconditioned! let that comment from the doctors just roll of of your back, please. actually let all of the negative comments just roll.

yeah, i know a little about the U.S. militaty, in fact, i almost became a U.S. soldier myself(thanks god my mom talked me out of it)

i?ll make sure i tell my father about your story.... he is still saying "if the doctor said you are deconditioned, you should listen to him, he might be right", haha... let?s see what he has to say about your case...

i had to and still do. i hate it when someone tells me that i am NOT in pain!

exactly!! my parents keep telling me that "it?s not so bad", "you should face it like a man", and blablabla..... but what the f... do they know about this disease? they barely know what tachycardia means!!! when i start explaining things, they just tell me "well, i dont want to hear your bulls... stories, the only person i want to hear it from is a doctor!!"

yeah how they know? so what if they have a degree? i am still more intelligent about my own body... even with the brain fog and memory loss!

i keep telling my parents that... they only know(the doctors) what they studied, that?s obvious.... i doubt it that they spent more than 2 days studying about "orthostatic tachycardia"... but unfortunally, everybody thinks that doctors are real Gods when it comes to health, which is just no true

i am a fainter. i faint a lot actually (350 to 400 times in 2 years now) and if i didn't, i don't think many would believe me either. in fact that is what it takes for me to convince someone that i am for real... i have to bust my head open or dislocate something. that brings up my question... do you faint? if so... how could someone watch you and fall like that and think you are just bluffing?

i?m sorry to hear that dionna... fainting can be a pain(i guess)... and it could be really dangerous!

thanks god i don?t faint... i just feel like i?m going to faint, but then i sit down and things get back to "normal"

but believe me.... i would rather be a fainter than a "insomniac"... not being able to sleep is the worst thing that ever happened to me.... and the worst thing is , things are more likely NOT to get better

so consider yourself lucky if you can sleep...

people would always ask me if i was okay while i was still in the military and i would tell them yes, that i felt fine. although i didn't. you see they were trying to discharge me and i didn't want that. finally i got so bad that i realized if i didn't get out i would be jeopardizing the LIVES of everyone else. so i decided to give in...

well, i admire your courage dionna... i can?t imagine having to go through military drills and everything else that is involved in being a soldier, WITH MY CONDITION(actually with our :( )... that would be impossible....

okay i had a point.... they all knew that i really wasn't okay. they could just look at my face or my body to see something was wrong... red or pale face, swelling, lack of sweat, my pupils weren't dilated correctly, my posture, how i walked- dizzy or lightheaded, sometimes vertigo- so i was stumbling or holding on to something, the fainting of course- that was hard to miss, ummm and some other things. perhaps you could show your parents that.

well, actually i just have all this symptoms(or most of them) WHEN i stand for too long...(that is, 3 hours, hehe, "too long")

i can only prove to them that im not sleeping..... that?s easy.... if they look at my eyes they will see it, which is just horrible!!:(

that is a visual! you could also show them your heart rate when you stand.

they already know I have tachycardia... the doctors told them.... but my mom keeps saying that it?s anxiety(that pisses me off... she knows NOTHING about my condition - because she doesnt want to- so how could she conclude that it is anxiety? and why am I not "anxious" when I?m lying down? haha, it doesnt make sense)

do you vomit when you feel nauseated?

nope, never vomited...

that is another visual! gross but hey it would get the point across. i puked on my boyfriend before he was my boyfriend and that was just a few days after i had met him. embarrasing.

haha, alright, next time I puke I?ll make sure I?ll do it on my mom, haha :(

i was totally crushing on him and then i puked all over him. he believed me the entire time though. he had seen me faint a few times before that.

did you actually puke ON him? that could be awkward :) so you are lucky you found a man who listened to you, who understood you, etc.etc.etc....

doctors you could see... i went to NIH, but a lot on this forum go to Mayo or Vanderbuilt. so any of those would be an option.

ok, vanderbuilt... ill write to them as well...thanks :)

any questions you have... they would be welcome and someone on here would know what you mean and would be glad to answer the question. i hope you take care and i hope you have some good days.

thanks dionna!!!!!! I appreciate your willingness to take the time and answer me thoroughly

i too would like to be helpful to someone in this forum, but unfortunally i still know nothing(or very little) about this disease

take care

daniel

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