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.

Thanks Janet, updated the list. I also added 2 helpful things like Xylimelts and canker sore patches. Sorry to hear about the coconut oil reaction. I'm fine with regular virgin coconut oil but get nauseated from the smell of coconut oil and oxygen combinations (PurO3). Like the other posters suggested, baby products are ideal because they are sensitive, unscented, and more natural (or softer on the skin). At the top of my head, California Baby lotion might be good. It's alot of trial-and-error to see what works. I wish I could change this thread title to "What Do You Use For Daily Care Needs" or something along those lines.

I don't exactly buy it but perhaps it's being outdoors that lowers the stress factor, makes you feel good, and results in a placebo effect? I'm going to lie down on some grass at my parent's front lawn. I think the last time I stepped on natural ground barefoot was 2 years ago, about the same time my POTS started. Who knows!

Hi there! First of all, I LOVE your POTS goal checklist. I think those are awesome goals. I have had to be careful of long term goal setting with my Type A personality, because when I wasnt able to reach them I was incredibly hard on myself. I still am. Short term goal setting has been really helpful for me, though. I also think it's super important to have a positive mental outlook on this disease as it can be really frustrating and difficult to navigate through. This site has been really great for me as I've been able to identify with others for the first time since i got sick almost 7 years ago now. Clonodine is really helpful in reducing my BP and it has an effect on lowering my hr as well. I had no idea it is used in ADHD too, but am not suprised. It's got a lot of great benefits... However, in the beginning I did have a lot of really negative side effects and hated it. I still have a little bit of dry mouth but that's so tolorable and not even worth complaining about. Are you on the pill form? I know the patch can be a really good option for some people too. Thanks Sarah! I also think that society, comparisons, and peer pressure around us are factors in what makes us work hard to achieve some sort of success and be harder on ourselves when we fail. There is so much "rushing" and the "NOW" factor going on around us. Definitely not good on our mind and body! I think it's really important for folks like us to just take it easy and pace ourselves in a relaxed, carefree manner. Dysautonomia does set us back, but we have a lifetime to reach our goals. I haven't gotten a hold of Clonidine yet but I will definitely add it to my list and see if it works. It's all trial-and-error for alot of us.

Hey Sarah, may I ask how Clonidine is working for you? I really think I have ADHD and hey, what do you know, Clonidine works for it too! lol

I also share my concerns with not wanting to "depress" my body with meds. Maybe there's a sort of alternative medicine/herb to reduce adrenaline surges?

Glad you guys could confirm this. 2 years ago when I had insurance, I had a sleep study done and was diagnosed with Upper Airway Resistance Syndrome, pretty much Sleep Apnea from what the doc told me I recall... It is physical narrowing of an airway so not alot of O2 is going through. On X-Ray, they found a stricture on my hypopharynx in 2011 (again, when I had insurance). On a separate matter, I had Allergic Esophagitis one time but that must've been something I drank (Apple Cider Vinegar, I think). So yeah, I'm going to talk to an ENT when I can and see what happens. I might also bring up TMJ that I'm getting and that some potsies reportedly have as well. I can't really put the patho together with strictures and dysautonomia.

I strongly feel the same. I recently moved out to TX and haven't really been happy despite having family out here. I feel more depressed and stressed out, recently had some crazy things happen (car accident, failed an exam I should've passed, etc). I have tried deep breathing technique, distraction, imagery, everything, nothing really helps. I have had mental breakdowns where I want to drive myself to the point of suicide but I know when to hold back. It's worse when you have insomnia and don't get enough sleep. Worst combination ever. When I get insurance soon, I'll bring up the suggestion of Zoloft to the psychiatrist. Anyone else have any other recommendations for what works for them? I have tried quite a bit...my worst experience was on Xanax and the benzodiazepine withdrawal effects. Nearly killed myself on it, that's why I try to tell people to avoid if possible or taper off the medication little by little at the right times. Benzo's are terribly addicting. You'd think some young potsies shouldn't even be on an antidepressant/antianxiety/antipsychotic med but it's really all we can do. I fear for the long term effects. It stinks.

Good stuff! Biotene, Ology, and baby products are now on my checklist. With regards to the dry mouth, I think we are also prone to Sialolithiasis, or salivary stones. I remember having an odd pain sometime when the dry mouth started and it turned out I had a stone blocking the duct. It got removed after a swish of pickle juice, though. http://en.wikipedia.org/wiki/Sialolithiasis I figure if we can gather up what works for the minor symptoms, then we can improve our lives a little bit better.

Awesome info, great tips! Thanks! I'll definitely look into Secret, Aveeno, and coconut oil. Speaking of coconut oil, I found out there's a coconut oil that is mixed with oxygen and is supposedly great for skin. Might be something to look into. Do you guys have unusually bad breath as well? Sorry, I know the thread is about skin care but don't think I want to make a separate thread just to ask if other potsies/dysautonomia people have bad breath haha

Apply for disability (SSI) and then apply for caregiver assistance. A caregiver would come to you (home health) and help you with daily living needs, depending on how many hours the interviewer grants you. I think every state has some sort of caregiver program for the disabled and 65+.