Hello.. New Member Here

[Meg.Limbach]

Hello,

I have been following this forum for a couple of weeks and am excited to become part of it. My name is Meg and I live in Pueblo, CO. I am 22 and I was diagnosed with POTS just a couple of months ago. I am married and have a 4 year old son. My symptoms started about 7 months ago where I would pass out for no given reason almost every single night. I was hospitalized all the time due to my cracking ribs, slamming my head, etc etc from the falls. They tested me for epilepsy (which I had been misdiagnosed with in 2002) and everything was coming back normal, except for my blood pressure averaging 80/40 and my HR averaging in the 40-50s. Until one night after I passed out, it was like a lightswitch. My HR did a complete 180 and I was rushed to the ER with chest pains. As I laid down my HR was in the 70s. As soon as I stood up within 10 seconds my HR hit 194. The doc said she had never seen a spike that quick so made me do it a few more times with the same results. Finally, in April I was diagnosed with POTS.

I am having a very hard time coming to grips with this. I can not even walk from my bed to my bathroom without becoming dizzy, out of breath, and pouring sweat. My dear husband has been fabulous through this all, but sometimes I feel like he should just leave because he didnt sign up to take care of me 24-7. I am also in school full time for nursing, and that takes the 2 oz of energy I have so whenever I am home, all I do is sleep. I actually just woke up from a 36 hour binge. I just feel so alone. My mom is my best friend and is very understanding and helping in any way possible. But nobody else seems to "get it". I get remarks like "yeah im super tired too" .. it just irritates the crap out of me, cause no, they dont get it!

Sorry for this novel. It just feels good to vent to people who do "get it" =) I look forward to getting to know all of you. Also, I have seen posts about losing appetites, have any of yall experienced massive weight gain with POTS? I gained over 100 pounds in just a year, and POTS is the only thing I can link it to.

Thank you for listening. =)

[Yolaclover]

hi Meg, Welcome!

Holy POTS, those are some crazy symptoms you have! Have you been to some great POTS specialist yet? Are you on any type of medications?

I can relate to how you feel about your husband, I think mine is actually depressed about how I am, he is just too nice to say so. I have two kids, 3 and 5yo, they are great, I am able to move about and do things without heart rate spikes and stuff. I just suffer from constant crappy symptoms, as I'm sure you've read about

So, a nurse? It's amazing how many nurses and nursing students have dysautonomia!!! I hope you join the dysautonomia connection website on facebook and meet Emily Cardwell, she was a nurse, in the nicu I believe, after she passed out at work she has been trying to become a nursing professor. she knows a lot about POTS and she has similar symptoms to you.

In this group there are nurses too.

How do you manage to be a mom and a full time student with these symptoms?

Well, just wanted to say Hi and welcome and look forward to you posting!

[Christy_D]

Hi Meg,

My son has also gained a lot of weight. He used to be very skinny and it was hard to find pants to fit his waist and length. He was 95 percentile height/20 percentile weight. He was also very athletic, playing soccer year round. Now, because of inactivity he has put on a lot of weight. He can carry it so far, because of his height.

Also, even though he is nauseated daily, the medications are part of his weight gain. Fludrocortisone, doxepin, and abilify, all medications he has or is taking, can put weight on you.

His pediatrician wants him to start physcial therapy to help with this. I am just waiting for her to set it up.

Try to find a good specialist, that will be of help.

Christy

[MomtoGiuliana]

Welcome Meg! Glad you found us, but I am sorry to hear of your challenges. I hope you find effective treatment soon.

[Meg.Limbach]

I will def have to look into the FB group. I am actually going to school so I can work in the NICU as well. Honestly, I was going to ask you how you manage with 2 kiddos? lol I am only surviving with LOTS of help! Without my husband and mother I dont know how the heck I could do this. I havent seen a specialist yet.. but I do see my electrocadiologist at the end of the month so he should be able to point me in the right direction. I have yet to start meds, but again, that will hopefully start after I see him. Thank yall for the warm welcome =)

[mwise]

Welcome Meg!

This is the best family forum to have for knowledge and support. Many of us have different forms of Dysautonomia, but we all seem to have similar symptoms. You and your family will be in my prayers. Just take each day one hour, one moment, one second at a time. You will get a lot of love, support and yes hope here too!

A friend of mine said it well recently, "When you are having a bad day, remember the good days that you have and will have again." I had a rare day with her going to a movie and actually doing a little shopping without a Wheel Chair or Rollator Walker. I even ate out too! It may have been only 6 hours out of the house, but it was a great 6 hours. It is those precious moments that are memorable. When I was 1st diagnosed in December 2010, I was bed and chair bound (extremely weak & symptomatic). With medications, proper diet, non invasive treatments and changes in my routine life style, I have been able to do little things around the house and work again (I do predominately a desk job). I would and still do set little goals for myself each day.

The network here has great information about POTS and treatment modalities. Trying some of the treatment modalities such as salt loading, support hose, small meals, drinking lots of fluids, Vitamins B, C & D, along with using a walker or wheelchair, etc....could help you starting feeling better. I hope also that once you find the right medications for you, this too will help you to feel better.

Hugs & love to you & your family