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I'M New... And Want To Know How To Control Pots.

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Hey, i'm new here. I'm Kathy and i'm 15 years old.

I was diagnosed with POTS and Orthostatic hypotension in July 2010, after a year long investigation.

I'm currently on Midodrine.

Although it helps, it doesn't always completley help and I do still sometimes get very dizzy. Anyone got any other secrets on how to stop this from happening? I try to keep well hydrated but this doesn't always work either.

Also is there anyone else here my age that has POTS... or anything similar? I've never spoken to anyone one else who has it before :)

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Hey, i'm new here. I'm Kathy and i'm 15 years old.

I was diagnosed with POTS and Orthostatic hypotension in July 2010, after a year long investigation.

I'm currently on Midodrine.

Although it helps, it doesn't always completley help and I do still sometimes get very dizzy. Anyone got any other secrets on how to stop this from happening? I try to keep well hydrated but this doesn't always work either.

Also is there anyone else here my age that has POTS... or anything similar? I've never spoken to anyone one else who has it before :)

Hi Kathy,

Are you trying to get A LOT of salt in your diet? Lots of salt and lots of water.

My son is 15, soon to be 16, and his POTS symptoms are very debilitating. In the last 2 years, he has only gone to school for a little over a month. I hope your circumstances are better than that.

Christy

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Kathy,

My daughter is 16 and newly diagnosed with POTS. It's been a rough year with alot of testing for her too.

We are just getting into the learning phase of all of this, but one of the main things I have found is rest. If Kay feels tired, dizzy, ect, she lies in her bed and watches movies, reads, sleeps, whatever makes her feel better. The longer she tries to stay up and push herself, the worse the symptoms.

I hope you find what works for you. :)

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Thanks for your replies :)

My mum won't let me take much time off school, because it's exam year and she says since it's something that isn't going to go away I should try and deal with it. It just ends up with me passing out at school and going really dizzy in exams.

I don't really eat much salt... well I really don't help myself, I have eating disorders. I'll try and eat more salt with food, thanks for the advice.

I hope both your kids are alright :)

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Hello! If you're 15 you are the right age also for a younger forum called Dynakids- Dysautonomia Youth Network of America (I think that's what it stands for- www.dynakids.org

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Thanks i'll take a look at it.

Yeah i'm from the UK :P

Thanks for the tips...

and what do you mean who do i see? I see a doctor...

EDIT: I took a look at DYna kids and it requires you to post forms with your signature etc... So doesn't look like i'll be joining.

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Hi Kathy,

Welcome to DINET!

I was first diagnosed with POTS at the age of 15 (which was 15 years ago now!) after about a year of searching and misdiagnoses.

There are other treatments available besides midodrine that may be helpful in preventing the dizziness for you. You can read the What Helps page on DINET. There is a list of medications and another list that has non-pharmeceutical treatments.

I'm glad you found DINET. I hope that you find this to be a helpful and supportive place. We do have some other teenagers here, but they don't always post regularaly. Hopefully some of them will pop up soon.

Rachel

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Thanks for your reply Rachel :)

I'm just wondering... did your POTS get worse, better or stay the same since you where 15? :)

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Hi Kathy,

I had some rough times with my POTS when I was 15 and 16, and then my health improved significantly for a while. I was able to work at summer camps from the ages of 17-21. I could tolerate the conditions of no air conditioning and hiking through the mountains. I was also able to go to college, something I had at one time thought would be impossible. My health has gotten a lot worse since then, though.

Sorry. I know I don't have the most encouraging story. :( The good thing is that about 80% of teenagers do recover from POTS by the time they are in their mid-twenties. I was reading that earlier this week in an article by Dr. Grubb. You don't find too many people here on DINET who have recovered because they are out living their lives, not stuck at home looking for information and support.

You do have a good chance of recovering or at least being able to lead a fairly normal life. Keep working hard and doing what you can to treat your POTS. I hope and pray that in time you will recover.

Rachel

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Hi, my name is Caroline, and I was diagnosed with POTS at around 15 (I'm now 19). I take a beta blocker (propanolol) and get IV fluids at home. I have had different times of worsening symptoms, but I finished high school, and travel internationally to volunteer a few times a year since I was 14. I did my first semester of college this year after taking a gap year, but am still finishing the work as I was in the hospital at the end of the semester. I am taking this coming semester off, and plan to start nursing school next fall!

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