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Hi everyone!

My name is Hannah and I am seventeen. I was diagnosed with POTS at the Mayo Clinic in May 2008.

I have had various health problems since January 2000, when I was eight. That year I got a sinus infection then had horrible stomach aches until June. I missed a lot of school and when I went I went for partial days. I had an endoscopy that showed nothing. The stomach aches were diagnosed as unexplained abdominal pain. They got better.

In fifth grade, I got multiple sinus infections, accompanied by stomach aches. I got tested for allergies in sixth grade and started shots in seventh. My health was under control until freshman year whenn I got stomach aches and a horrible reflux cough. I was diagnosed with some food sensitivities in january 2007 (my sophomore year) and cutting the food out made a world of difference, until I got sick again this fall.

During the fall of junior year I got really sick. I had horrible chest pain that was diagnosed as pleurisy. Throughout the year, different doctors heard rubs on and off. The pleurisy wasn't getting better. I went to a rheumatologist and was tested for immune system disorders. I didn't have any, but I was diagnosed with joint hypermobility started physical therapy. I got better but then had a relapse in February. We decided to petition the mayo clinic. I went in may and was diagnosed with POTS.

This year has been really hard. I have horrible pain that doesn't go away. I missed over 40 days of school. My parents were sent a letter from the school in November calling me a truant (they weren't very happy, especially since my mom had just been promised that the school would stop harassing us). I had to drop one of my AP classes. Luckily I was able to keep up with the other two.

Most of my friends have been good. They help me when they can and deal with me when I am freaking out, but they still don't understand. I am excited to find a group of people who know what I'm going through and probably have it worse than me. I look forward to chatting with people here!

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Hey Hannah! Welcome. I just joined the other day too, and everyone here has been so friendly and welcoming!

I'm sorry you have had such a rough time. I know how it is having to compromise schooling...How dare your school call you a truant! That is the downside to this illness...It is so unknown by most people (and hey, most doctors too) that nobody understands... Have you told any of your teachers specifically about it? If not, I recommend it. Most teachers will be very accomodating, I'm sure.

If you are looking for people to relate to, this is the place to be.

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Hi! Welcome!

It sounds like you have been through so much already! I wish your school was more understanding! Now with a formal diagnosis maybe you can file the disability with the school and get assistance where and when you need it so that you can continue with your education. I hope that they begin to understand more soon and learn to help you with your studies.

I know somewhat what it is to be in that position because I was sick throughout high school and missed a good amount of school at times, but without a formal diagnosis and teachers etc. thinking I was just lazy etc. it made things difficult and even disrupted my graduating on time.

What are your current symptoms? You listed pain, is it pleurisy pain?

I hope you find useful help here and a wealth of support!

Good luck! :huh:

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Thanks for the support. I do have a 504 plan with the school. Most of the school is actually very understanding. I had amazing teachers this year who were really understanding. I have the administration tied around my finger after the whole truancy thing :huh:.

I have trouble explaining everything to my teachers. It gets very tiring. I work really hard (probably too hard sometimes) so my teachers don't always realize if I'm not feeling well, but, if I say something, I can always get an extension. I also have friends who are always willing to help me and cut me slack on labs or other group projects.

My symptoms are headaches, stomach aches, joint pain (not that bad), and chest pain. The doctors at mayo weren't sure if the chest pain is caused by POTS, because it is so localized. I think it is mostly muscular skeletal stuff. Physical therapy really helps. I'm also trying to get a TENS unit, but the insurance won't cover it and I don't think it will help enough to be worth $800.

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Hey, I already sent you a PM but after reading your post I have a few things to add.

Your "main" symptoms are how mine started out last year when I first got sick, they have since all stayed but I just can control them more, however I have added fatigue and dizziness with some fainting, so hopefully that wont happen to you.

I actually ended up buying a TENS unit last year, yes the $800 is a lot, but we were just starting out renting it paying $50 a month, and then eventually ended up buying it. It has been a life saver some days, but I don't end up needing it as much lately, now that things are more under control which is good, but its still awesome to have, because I definitely do still need it!

It sounds like we deal with school in the same way, I usually work myself really hard, and most of the time teachers wouldn't know that I am in a lot of pain during the day at school. But if I do ever need extensions and such, they are very good about giving them to me, without me having to go through higher people. I actually do not have 504 plan, and my school is small enough that everyone kinda knows. And my father is on the school board and has been for years, so I am kinda just "trusted" more than the average kid, however that doesn't mean that I don't have to earn that trust, I guess you could say. So fortunately I have not had to make a 504 plan, but I might end up having to in the future. I'm really glad that you are able to stay in school through all this, because there are so many kids I know who drop out and home school once they get sick, so stick with it, I really think thats the way to go, to be happy and get better!

Feel free to PM me anytime!!

Mary

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Hi,

Have you tried or looked in to the smaller hand held TENS units that you can get for under $100? Or will they not offer everything that you need in a unit, settings, intensity etc?

Have you been told specific things to look for etc.? I get a lot of brochures etc. with TENS etc. in them and know that I have seen cheaper ones, it would depend on what you want and need it for.

With my education I have been trained to prescribe and set up etc. TENS units, so I maybe able to help, but is hard to know everything from a distance.

And, I am definitly not an expert yet! ;) But, I can try to help! :)

Let me know! :)

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Welcome Hannah, you have come to the right place. I am sure you will find good advice and comfort here.

HUGS, Pat

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Can I ask what sort of TeNS unit in the USA would cost $800? In the UK a standard 4 channel TeNS machine costs <$100 (about ?40). I have just been doing some googling and have discovered something called "inferential" which sounds like a more advanced form of TeNS that allows treatment much deeper below the skin and is supposed to help reduce inflammation as well as treat pain. I used to use TeNS a lot and bought my unit about 7 yrs ago, for the last few years I haven't been able to use it because it may interfere with my cardiac Reveal devices. Even the new fancy inferential units cost ?250 (but can be bought online VAT exempt for ?150) [?250 = $500, ?150 = $300]. I can't find anything on the market for ?400.

Just wondering if there was something even fancier that I haven't yet heard of, otherwise if the USA prices are high you could look at buying from a European online store.

Flop

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I've looked at that unit Mary - it certainly does have a few fancy settings that you won't find on a standard TeNS machine. However some of those functions are only needed for patients with very complex situations - personally I would be tempted to buy one of the more basic units (go for 2 channels though) and see if it helps (I got a lot of help from the ?35 I spent), if no help maybe try renting one of the expensive ones to see if it is any better? Just my thoughts though.

Flop

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Hi Hannah!

Welcome! I'm a pretty new member myself and everyone here is SO helpful and understanding! I hope you find what you need and feel free to PM if you ever need to talk! (I'm 23, so around your age-ish!)

Take care!!!

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Hi Hannah! Your high school experience sounds a lot like mine did. I wasn't diagnosed until almost the end of my senior year. It was awful! I'm halfway through college now, though, and studying in London (although I'm having a bit of difficulty adjusting to the time change with less sleep and such...) You'll find some good support here!

Meg

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