Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Disability hearing & Test Results Diagnosed

Dec 06, 2016 7:01 AM

At least I now know what's been going on for the past year or two, randomly at first but now daily. Please say a prayer, or lift up positive thoughts for me today. I'm a nervous wreck this morning! 😬 I didn't sleep well at all last night, mainly because of my disability hearing this afternoon, along with yesterday's doctor's appointment (see below). I won't be back online until later, but hope to catch up with everyone soon! Sending hugs, love & prayers that all of you have as good a day as possible! πŸ™‚πŸ’•πŸ™πŸŒΈ

Chronic veinous hypertension was dx as a result of finding more vein reflux in both calves in the vein center last Monday (ultrasound). I follow up with the cardiologist who will likely change me to thigh-high or waist-high compression stockings (as recommended by the cardio-electrophysiologist, next paragraph).

I was dx with POTS postural orthostatic tacchycardia, after I failed the tilt table test in November. I've been put on med (Pindolol) to level my heart rate. For those who don't know, POTS (postural orthostatic tachycardia syndrome) causes heart rate to increase (tacchycardia) which results in dropping blood pressure, which can cause passing out & dizziness ( or feel like blacking out). The cardio-electrophysiologist said many of my already dx conditions can contribute (autoimmune, thyroid, sjogrens, vein reflux & pelvic congestion syndrome, just to name a few). He said POTS is not caused from a heart problem, but rather it's a neurological "nerve" issue from the brain that causes the symptoms, and there are suspicions the vagal nerve may be connected. Vanderbilt University hospital did a long study on it and that's where my doc got his training. He says there's a patient community to chat, and the best info site is at a UK addy. He added POTS is basically symptoms I have to learn to deal with and hopefully through trial & error we will find the right med(s) to reduce the symptoms & risk of passing out or falling. He also stated most neurologists refuse to deal with the neurological aspects involved and that's why cardio-electrophysiologist are primary caregiver for it.

This is the link recommended by my doctor's office for my POTS - Postural Tachycardia Syndrome.


Here is another from the hospital he trained at.


Dec 06, 2016 7:07 AM

May God give you peace of mind and healing.

Dec 06, 2016 7:11 AM

You are in my thoughts and prayers Flappy. You have quite a long list to deal with. Wallpaper the walls with all your dx at the disability review and surely it will go your way πŸ˜€

Dec 06, 2016 8:20 AM

Praying for you with all your dx and this afternoon.

Dec 06, 2016 9:37 AM

Good luck πŸ™πŸ»prayers for u!
If you haven't left yet take a notebook w/ you write down symptoms so u don't forget.
When I had mine hearing the room was so small and had 4 of us in this small room (seriously we were crammed in there)and the video screen 2 computers. Feeling closed in stressed me out big time. I forgot everything so glad I had my notebook.

Dec 06, 2016 10:43 AM

Prayer goes up flappyslady

Dec 06, 2016 7:48 PM

Thank you all!!!! I was nervous but managed to get through it. I stopped a few times to drink water while answering questions, due to the sjogrens, but the judge was very nice and understanding. I had my own record/list of all my procedures, tests, diagnoses, medications and allergies, which I've been updating since i started out in 2001. I provided a copy for my attorney and the judge. I was questioned by the judge about an hour and then my lawyer about 15 minutes. I broke down crying at the end, answering his question of how my life is changed from before and after surgery. Then I was allowed to sit outside in comfortable chairs while my hubby answered questions about 10-15 minutes. Afterwards our attorney said he thinks I'll get approved but due to the holidays it could take 4-8 weeks. I'm relieved that it's over, all but the waiting. Thanks again to all of you, and especially to Beckstar for the laugh!

Now I have to focus on learning about these new diagnoses and meds. Hugs love & prayers for all to have a restful night! πŸ™‚πŸ’•πŸ™πŸŒΈ

Dec 07, 2016 12:31 AM

Hi Flappylady81 it's patsy Just wanted to check in hope you have a nice day pain free

Dec 07, 2016 12:33 AM

I wanted to change names but don't know how to any ideals for a chachey name

Dec 07, 2016 1:51 AM

I'm glad the hearing is now over. It sounds like it was an ordeal and very stressful so you must be knackered, be kind to yourself and take some you time to recover.
That's a long time to wait so please don't dwell on it, try to keep yourself distracted if you can.
I'm here giving you extra strength and positive vibes when you need it to lift you up and help you to move forward and to keep you thinking of happy things so that you are smiling and laughing thro it all xxx hugz xxx

Dec 08, 2016 10:20 PM

I was wondering. I will soon have a hearing. What kind of stuff should I have documented in front of me. I have a lawyer but I'm trying to get a list of questions they may ask. I have a problem with answering on the spot. Problems expressing myself or getting facts out

Dec 09, 2016 6:34 AM

The judge will ask you your name, ssn, birthday, and age than your lawyer will present your case to the judge and he will ask a little questions not like your lawyer will so be truthful and say everything that your lawyer went over with you and everything will be alright

Dec 09, 2016 7:42 AM

Patsy, I am so glad to see you posted!! How are you and star doing?? You've been on my mind. Sending you positive vibes and well wishes along with lots of {{{Hugs}}}πŸ’•πŸ˜Š
Flappsy, I am relieved to hear that you are finally going to get approved!! After all the waiting you've done, even 8 weeks will fly by. I will keep my fingers (and whatever else I can cross) crossed and hope that it goes the way it should. Sending you lots of love and {{{hugs}}}. I know you got this!!!πŸ’•πŸ˜Š

Ready to start relieving your pain?

Join Community