jpjd59

Christy:

So glad you are getting some answers to the pieces of the puzzle. I hope your son starts feeling better soon.

Abbyw:

My daughter has "just plain POTS". She was diagnosed with POTS after a viral infection..

My daughter gets a burning sensation in what she says feels like her brain. Do you get this? When this happens she says she can feel it coming on (describes it as feeling a wave coming on) and after it she gets really panicked/anxious/angry.

I am so frustrated with the medical system that I could just scream right now!!!

My daughter has been waiting for 9 months to see a cardiologist at a clinic that deals with POTS.. Her appointment was supposed to be in August. They called yesterday saying that they had a cancellation for this morning and would she be interested in coming in today. Of course, she jumped at the chance to see the cardiologist earlier than August. We were a block away from the office this morning when the cardiologist's office called to say that they had made a "scheduling error" and that the doctor would not be able to see her today and that they could "squeeze her in" in June.

I took the day off work to bring my daughter to the doctor, my daughter got up early to make sure she would be on time (and you know how hard mornings are for POTS patients) and then they cancel. So far not impressed with this doctor's office!!!!!

PetuniasMom:

I know exactly how you feel. My 23 year old daughter was diagnosed with POTS in November of 2011 (right during her senior year of college). It is sooo hard for a young person to see any light at the end of the tunnel. Just keep on trying to give her your love and support. That's really all we can do.

Pam

(mom to Jennifer)

Kayla:

Good luck with your event!!!

CarrieJessica:

I know how frustrating ER trips can be. My 23 year old daughter has POTS and we have made multiple trips to the ER (they didn't know what POTS was so we had to explain what happens to her body). They also told her that she had acid reflux and sent her home with the suggestion that she take antacids. For now, when the crushing chest pains happens she just rides it out instead of wasting at least 4 hours in the ER to have them tell her it is acid reflux. It's scary!!!

Don't worry, the test isn't that bad. Hopefully tou will get some answers from the test that will lead you on the road to recovery!!!

Welcome! You will find that this site is a great place to go for information and support. I hope you get some answers to your situation soon.

Sarah:

Welcome! I am sorry to hear that you have POTS but glad to hear that you are getting better.

My 23 year old daughter also developed POTS suddenly (after a viral illness). She came down with symptoms in July 2011 and was diagnosed in November 2011. One day she was an active college student living away from home and the next day she had to move back with us (she has been with us for the past 8 months).

I am so encouraged to hear that you are getting better. I also notice some improvement in my daughter but it is VERY SLOW.

She has not tried Midodrine because she has not been able to tolerate any meds but I'm sure that some people on this forum that have tried it will let you know if it has worked for them.

I would love to hear the results of the research study that you participated in. Please keep us posted..

Pam

What state are you in? Was it a research center that said that you were too old for their study?

Cat Lady:

You poor thing!! My daughter has also had those urinary tract symptoms since developing POTS. We are not sure what causes them. She asked the doctor and he said that he did not know but that since her entire nervous system was out of control, and that the bladder has a lot of nerves connected to it, that it made sense that the bladder would be affected.

Hope you feel better soon!!!

Elfie:

My daughter traveled from California to the Mayo Clinic in Arizona for autonomic tests. She found it was very hard on her to travel that far so, after the testing was done, she found a specialist in California that was closer to home.

I'm sorry to hear that you had such a bad experience. My daughter had a very positive experience with that doctor. She had been to over 15 doctors (including the Mayo Clinic in Arizona and the this doctor was the first to really explain to her what was going on with her body).

I hope you get some answers soon!

What kind of doctor was this that you saw? Was he a neurologist?

This is a question my daughter struggled with as well.

After trying numerous meds (beta blockers, SSRIs, SNRIs, calcium channel blocker) she decided that the side effects were making her feel worse and they were not worth taking. Every time she tried a new med and had a side effect it seemed to set her back even more on her road to POTS recovery. As far as medication, she is now only taking Vitamin B12, Vitamin D and magnesium. She also started an exercise program last week through a cardiac rehab facility (so that they can monitor her carefully while she gets used to exercising). Hopefully we will see some improvement within a few months.

I hope you get the med situation taken care of. I know how frustrating this is!!!!

Anyone else have severe car sickness with POTS? My daughter gets nausea the minute we start to go anywhere in the car (she never had this before POTS). She has had extensive inner ear testing and everything comes back normal.

What would cause this?

Wow! That is such great news that you are feeling better. It gives all of us who have family members with POTS, or who themselves have POTS, encouragement that there is light at the end of the tunnel.

I am the mom of a 23 year old daughter who was diagnosed with POTS in November 2011 (symptoms started in July 2011 after a viral illness).

My daughter also has vision issues that come and go (so many that she has stopped driving). She had an MRI of her brain and everything was normal. Her vision issues are just another one of the many symptoms that she has with POTS.

She has not been able to tolerate meds so she is salt loading, drinking a lot of liquid and she just started an exercise program (through a cardiac rehab facility so that it is monitored). Hopefully the exercise will help alleviate some of the POTS symptoms, including the vision issues.

I hope your daughter gets some answers soon.

There are a list of doctors on the dinet.org website. Some are located in the UK. I don't know how far that is from you or if you are able to travel but you might want to take a look at the list of doctors.

Also, you can search throughout the forum for the word "Scotland" and see which other forum members are from Scotland. They might be able to give you some ideas.

Good luck!!

Jangle:

That's exciting news!! My daughter has had POTS since July of 2011 (diagnosed in November 2011) and just started an exercise program. I hope it will work for her as well as it has for you. I am hopeful that since she was diagnosed relatively early on that she will be feeling better soon.

Keep up the good work!!!!

Kayla:

My daughter has POTS and also has a Vitamin D defiency. From what I have researched, this appears to be a common problem with POTS patients. She has been taking a Vitamin D supplement for a few months now. I do believe it has helped her feel a little bit better.

Brenda:

I know what you mean about wanting to punch walls!! Keep taking those walks to help relieve the stress. You are obviously a great mom who is trying everything you can do for your daughter. I have to believe that there are better days ahead and that our children will be even more amazing than they already are after going through this.

Stay strong!!!

Pam

Katie:

Thanks so much for the encouraging words of support!

A POTS mom

Brenda:

Oh I know how you feel!!! It is so hard as a mom watching your child suffer (even though my daughter is 23 years old). It is so hard going through the roller coaster of symptoms and emotions. There are days I just want to vent too!!!!

Please know that there are many "pots moms" out there who know what you are going through. Try and stay strong.