Diagnosis Confirmed

[jbenz1772]

I'm sure you've all been there. Freaked out by the diagnosis, but relieved you finally have one. So I officially have POTS, dysautonomia. I'm starting on Midodrine today and then after I've been on it a while she is going to introduce a daily anti-migraine.(not sure which one)

My symptoms have been:

chest pain, pins and needles in right foot/ leg/ hand and arm.(almost restless feelings) Icy hot patchy feelings, muscle twitches(random spots, eye, left thigh, left upper arm), tachy(of course), migraines, aura, tunnel vision, dizzy, pre-syncope(fainted last month), shortness of breath(esp after shower and housework)flushing, wake several times a night with my arms completly asleep, mix up my words, brain fog

Any words of wisdom will be graciously taken.

Thanks,

Jennifer

[Lovebug]

You have found a wonderful home here with lots of help! Let yourself grieve anything you've lost and realize that you will have good days & bad days. Always remember: you are never alone!

[Chaos]

Yes, getting a diagnosis is definitely a bittersweet day! It's good to know what it is, but frustrating that there is so little known about "what" you have and how to treat it effectively.

Congrats on getting a diagnosis.... sorry that you have it!

Hopefully you'll get lots of good info on here. We all just seem to have be willing to live as lab rats and try any of the various treatment options of meds, diet, lifestyle changes etc that you think have a chance of helping. It's so nice to have a place like this to come and get new ideas.

[Babygirl1973]

Jennifer,

Welcome, I am sorry...and yet thrilled. It is a tough journey to go through, but once you get a diagnosis you can begin to heal, mentally and physically.

I would encourage you to watch the video Changes. Excellent video. My family and I watched it together in order to understand POTS better.

As the others mentioned, reading through the forum is a great resource as well. I read for a long time, without posting, and finally registered this week. I am glad that I did. The support is tremendous.

Please let us know if you need anything. We are all here...and we understand.

Keep the positive side up,

C

[Godsgal]

Hi Jennifer,

After I started on Midodrine, it helped my condition a lot. Hopefully it will do the same for you. As I have learned my new self with this condition, I have learned what triggers it and to avoid it. That has helped a lot. Staying away from the hot showers will help you. I sit down during them now, have lukewarm water, and a cool water rinse on the feet and legs helps with the POTS symptoms afterward. Also, can you tell a pattern to the flushing? Mine usually happens when I am in a stuffy doctor's office, after eating certain foods, or being exposed to certain chemicals such as hairspray or perfume. I have completely changed my diet, plus staying away from all of the girly products and that has helped me tremendously. I keep track of my blood pressure and pulse during housework duties and I pace myself. My physical therapist told me to make sure I breathe well during physical activity like that (sounds simple but sometimes we forget to really focus on taking in plenty of oxygen) and that would help with my heart rate. Try to sit for as much housework as possible....I have even mastered the vacuum while sitting on the floor

Anyway, hope this helps and I sent you an email too. Take care