okiedokie123

Yes, I also have Vitamin D deficiency. Mine was at 27 so I'm supplementing for that and going into the sun when I can. My doc put me at 10,000 IU a week lol In regards to CFS, I think it is correlated to POTS because with POTS, there is cerebral hypoperfusion so you get brain fog, dizzy, tired, fatigued, want to go sleep (for some folks, you want to but you get insomnia instead), etc. If I'm not mistaken there's been studies about this so I really think it's all connected. My colleague was diagnosed with CFS, only to find out she had POTS instead so who knows.

Look into kefir, they offer more probiotics for your buck than supplements, though supplements are really convenient. If you get the refrigerated brands, be sure to have a lunch pail on hand to keep it cool while driving home.

This is why I tell healthcare professionals. I look good IN person but horrible ON paper.

Now that's a specialist! Thanks Sarah.

This!

Oh gosh, whatever you do, don't get NurseMates. I was given the Medical Grade Compression 15-20 mmHg as a graduation gift from nursing school. But it looks like thin pantyhose for women. It looks funny on my legs. Thank God for scrubs, no one will ever know hahah

Wow, what a great topic! Taking notes for sure. Not trying to side-track the topic, but do the majority of you also use a PPO insurance to see all these specialists or do you use HMO's and have a PCP refer? I have Cigna Open Access so, it's like a mix between PPO and HMO. I can see specialists for $50 co-pay with no referral but it has to be in-network.

I'm actually seeing a regular PCP who's going to refer me to a neurologist the same day but right now, I don't know if they have a specialty in dysautonomia. I've been busy with my schedule so I just hope the appointment gets me somewhere. There's got to be some sort of help out in TMC or Baylor. I know some Dinet members said there's not much help here from the threads I searched. I'm about a 3 hour drive (240 mi) from Dallas. Are you thinking of Dr. Levine?

Wow, Xanax too? I remember being on that and it calmed me down for days, slept like a baby. I was thinking about taking it a few days before my license exam and then tapering slowly after it's over, but I might risk getting brain fog on the test, which is no bueno! I'm actually surprised SSRI's aren't on that list. I am on Lexapro 2.5MG and I'm getting some memory lapses, brain fog, increased anxiety, and insomnia side effects, and it's the 3rd week...

Wow Sarah, that's impressive! I am the same, hate failing, it gives me a mental breakdown everytime, but we have to learn to accept those failures, that we do have a disability that holds us back. Not to say we should use it as an excuse, but simply to understand there's something that may be contributing to our failures that other people don't have. If you ever decide to go into LPN school again, please look into Disability Accommodations at your school, they will sort things out and make reasonable accommodations in clinical and theory lecture. I did not take advantage of that until my very last semester, wish I knew before! I don't keep a record of my standing and supine BP/HR but generally have a good idea of what I have. I do have an appointment coming up so I'll bring that up to the Doc. Thanks for the information about not needing to do the Tilt Table "torture test" for diagnosis and about the Vandy research studies. I live in Houston where the Texas Medical Center is, and the Baylor Clinic is the one that handles special medical cases from what I've found. They recently received a $1million grant for research into EDS so I'm hoping this will jumpstart more research into the direction of autonomic dysfunction. I have met a few local POTsies from the Dinet Meet Others Program and have found that we really need more dysautonomia specialists out here in Houston. If not, I'll definitely look into Vanderbilt. I'm willing to shell out thousands of dollars if it means I could ease the symptoms that I have. That's a good way of putting things into perspective and I'll keep that in mind, never really thought of it that way. I guess we could be a little more grateful.

22, 18 when it started.

Hey Andy, I guess the bright side to that is that you now know what you have while you're young. So you can arrange lifestyle modifications and adjustments to make things easier on you as you grow older. I would say it's better to know what you have when you're young so you can take action as opposed to finding it out much later in life. Also, I wouldn't automatically suggest that things are going to progressively get worse from here on out, there could be much hope for the future as the medical field recognizes dysautonomia more and more. That or one day we might just be able to transplant our brains onto robotic cyborgs and escape dysautonomia once and for all.

Issie is correct, numbness anywhere from the extremities to your face is a sign of MCAS.

I'm quite fond of the nickname "okie" that I've been called on this forum lately. Ah, I really wanted to hide my gender lol.. My name is Justin. On another forum, the name "okiedokie" was mistaken as a girl so I wanted to see if anyone here thought that a picture of my nursing class + "okiedokie" = girl. I guess I am now exposed. I have a semi diagnosis of POTS. I say semi because I lack insurance atm and have not done a tilt table, but the doc 99% believes it to be a form of POTS. I'll find out in the next coming weeks or months with proper diagnosis and treatment. My systolic BP went from 120-130 sitting to high 150ish standing when I tested myself at clinicals. HR went from 80 to 120. That's insane. Thanks for the kind words! I actually graduated nursing school already but failed my license exam recently because of the usual - brain fog, insomnia, huge anxiety. That trio alone is horrible on any exam! So hopefully I can pass the 2nd time! And I really do think this disease will mold us into stronger, better individuals in the long run. Your experiences with the ER, my failure at my exam, others who are frustrated with the setbacks of this dysautonomia - it's all a testament to our strength and perseverance. In other words, we're one bunch of tough cookies and we never try to give up!

How low were your Vitamin D levels? Mine were about 27. 60-100 ng/dl is the optimal range I believe. Well, so much for "earthing." I got bit by fire ants while lying down at the park. I think it's mother nature's sign to go back indoors.