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Jacquie802
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Hi, I have been diagnosed with having POTS, as well as a heart arrhythmia, and vestibular hypofunction(very dizzy person!!!!!!!!) I was just wondering how I am supposed to deal with this whole thing. I am 21 years old. I had to quit my EMT classes which I spent alot of money on and worst of all it seems like no one understands a thing I am going through. My family thinks I am just being lazy and so forth. I try to explain what's wrong but no one hears me......I have been put on Florinef, but I didn't find any improvement. I have been put on high sodium diet but the salt bothers my ear problems, due to the vestibular hypofunction, not to mention the beta blocker I am on further lowers my bp. It doesn't even seem like I am going to get better, which is more depressing. The doctors think a viral infection may have caused this, because the POTS and heart arrhythmia started a few weeks after I had a sore throat, etc. So, for the last 2 years I have been afraid to do anything. I hate leaving the house, because I never know how I am going to feel, etc. If anyone has any helpful hints, advice, ANYTHING I would be greatfull. Thanks!

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Jacquie,

First of all, welcome to our little corner of the universe. You'll find a sick, but friendly and helpful bunch of folks here :angry:

I'm also pretty new in my diagnosis (~6mo) and have been spending much time trying to convince my family that YES, I am REALLY sick. It's frustrating, and painful when you feel so poopy and no one hears you.

One thing I did to combat this was take my mother in when I saw my POTS doctor. He's been treating Dysautonomia for ten years and told her that I had a severe case, and that it was serious...not life-threatening, but very serious nonetheless.

Sounds like you're not making much headway in your treatment. Do you have a doctor that's familiar with POTS? If not, I highly reccomend that you get one. There's a list of physicians on the Dinet website. You may also consider going to a larger hospital like Vanderbilt or Mayo and seeing a team that specializes in Dysautonomia (if you haven't already done that).

Ok, that's all the advice I have. Hopefully others will know more.

Cheers,

Lauren

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Welcome, and sorry you need to be here....But we enjoy the company. Families can be tough sometimes. There are family members I just don't waste my time on anymore, and the important ones understand. There are many articles, published, you can show them and get them involved in what's going on if possible. Invisible illnesses are buggers to work with. I too have significant vestibular problems, get carsick and all kinds of stuff.

I think it's a great idea to take a member of your family with you to your appts, so they can see fro themselves, this is very real.

I just take a very small dose of beta blockers and a tiny dose of valium for my inner ear. My bp is very high, so no salt, and it also wreaks havoc on vertigo. So you are a little stuck like me.

Hang in there, we all go through periods when we are overwhelmed by this, but do adapt. Sometimes it takes a bit, but you will. And hopefully you will recover as quickly as you got sick. It's been known to happen. Again, welcome to the site. morgan

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Hi, I have been through vestibular rehab, however I had to stop going because I couldn't afford to go the number of times they wanted me to go. I had to leave my job because of the problems I am having. I don't think anyone can truely understand about this whole POTS ordeal unless you are going through with it.

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Hi Jacquie

I am so sorry to hear that you too have been struck down with this nightmare condition but at least you have found Dinet-from here things can only get better!!! :)

As it 9.30pm here in the UK I am struggling to see what I am writing :D but I wanted to get back to you asap- I know how lonely it can be at first and I wanted to let you know that there are people here for you!!

I aggree with Lauren :D - that it great advice about taking your family to your appointments with you! I have my husband, mum and dad all alternating between appointments. They really did not understand until then. Also, if you can, convince them to take a look at the info on the Dinet home page- it is really helpful and explains it really well!

Another good source of very basic info to pass on to friends and family is on dynakids.org There is an excellent article called 'dysautonomia for dummies' and it is a really simple way of explaining whats going on. It is worth down loading and printing out to pass around. Sorry I am really bad with computors- maybe someone a little more IT literate can sort you out with a direct link? ;)

There are lots of things you can try to help with your symptoms such as movements to help the blood flow (try squeezing your fists when you feel symptoms starting or squatting to the ground- you look a nutter but if it helps!!):). I am sure you will reed lots about different peoples methods here.

The greatest tip I can give you is to get a seat stick- believe me, this is the greatest thing ever invented in my opinion!!! :lol: Basically it is a walking stick that turns into a stool, it is light to carry around and you can use it anywhere. Before I had this I rarely left the house. It is great for nipping to the shop- ques are no longer a problem you just sit down!! And it saves you having to sit on the floor in the street. Also, depending on how you feel about your condition, and whether or not you want to 'promote' it- I find it great to show people that I use a stick- it shows people you are actually sick :) - as most of is don't look it. Great for when using my disabled badge to park- people no longer look at me like a criminal!! :angry::(

Sorry, that is about all I can think of at the mo- I don't function too well at night! But please keep smiling :D , you will hear a lot of people moaning about how terrible life is with dysautonomia (and rightly so) but I am really happy with my life- yeah ok, it is not exactly what I had planned- aged 20 and stuck home all day, but really it could be worse. You will learn to adapt and although you will miss things from life before you got sick there will be a million things now even better- honest!! It is really really tough at first but you will get through it and things are good on the other side! :D:lol:B)

We're only young- there will be a cure before we hit 30, although I have asked father christmas for one this year, lol,!! :lol:

Good luck, if you ever need some one to talk to feel free to PM or Email me.

Katie x

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hi welcome to the site.

sorry you have the inner ear thing like many of us.

I go thru spells of eating LOW sodium when my ears feel plugged or my vertigo/spinning/nausea situation is acting up.

Has your doctor suggested BPPV exercises? They can be very helpful for helping ear problems.

I go thru spells of high salt, medium salt and or low salt for this inner ear stuff.

It's a real catch 22 but you can get some relief.

Good luck.

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Hi Jacquie,

Sorry that you have to experience this, its nice to know your not alone though isnt it! I am 22 so understand the hinderance to study etc. Its tough when family dont understand, i find people are ok if you are sick for a month .. but after that you are supposed to get on with it *sigh*. Have your family been to the dr with you? sometimes that helps... or they will just say the drs a quack and then you find another dr who believes you and take them there. Hopefully this forum will be able to allieviate some of the alienation and misunderstanding you may be experiencing from the outside world.

Hopefully the leaving the house fear will subside as your health (hopefully) improves. Otherwise maybe grade your exposure and take it a little bit at a time and always have a plan in case something goes wrong! it just helps you feel like you have a safety net which can calm you down a bit.

I have to run to lunch now and get started on this essay i need to write (ive been procrastination WAY Too much). I may try and write more later. Take care and welcome :)

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Hi welcome to our potsy world!! you will find some wonderfully supportive people here...

I understadn what you are going through ... I am 23... and was officially diagnosed with POTS when I was 21.. and have had pots since forever...

have you tried Cymbalta or mestinon yet?? I take both of these.. and they do help..there are many beta blockers that you can try..

you could ask to be started at a very low dose of a BB (beta blocker) and work your way up as you need too to the best dose for you.. see what doseage works best for you...

also I want to mention.. I agree with Morgan on the family thing...It is so hard for family to 'get it' and accept it too..

You are NOT being lazy.. please do not think that you are...

It has taken my father a long time to even begin to accept that I have pots.. and that there definately is something wrong with me that I am not making it up.. I have several well Known Cardiologist in the country backing me up that I have very bad pots...

and what really hit home the fact that yes, there is something wrong.. was when I called my parents early one morning from my home.. asking them to take me to the ER..b/c I couldnt stop pasing out.. and had spent literally 2-3 days on the couch.. and seeing me so white and pale.. then turn blue when I tried to walk... I really hope that you start to feel better.. and find some meds that will help you..

its kind of a hit and miss w/ meds and doseages..

hugs to you

Linda

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'We're only young- there will be a cure before we hit 30, '

What about by the time i get to 30 - one and a half years - fingers Crossed!!! :)

One and a half years gives them long enough!!!

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jacquie-

hello & welcome. i'm sorry you have reason to be here but glad you found us. there is A LOT of info on the site...both through the main page and the forum...so hopefully that will be of help to you.

it's definitely tough though. i'm 25 & was diagnosed at 17, with very varied levels of health/functioning between then & now. this past year i've been pretty ill at times & i feel like my family is just now coming on board...sort of. my mom's pretty on par with things but others are still tough. like i'm struggling to get through a few part time grad classes after 9 months of no school or work (and lots of hospital stays) and i have a 6 week break over the holidays prompting my dad to ask about my going to visit my grandma in florida for a bit. i know he means well, but i want to say "are you nuts?" i'd love to in theory but it's not something that i can do right now for various reasons. and my uncle was in town & took me to dinner last night & if he told me one more time how good i looked i think i would have slapped him...or started bawling. and this was/is after my parents gave him a pretty lengthy thing i wrote detailing a lot of this past year, so he "thinks" he gets it now. but i digress & am venting. sorry :) bottom line is there's folks here who get where you're coming from.

hang in there,

:P melissa

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