Lethargic Smiles

Prior to being diagnosed, I had so many doctors tell me I am anxious, depressed, or experiencing medication side effects. Now that I have my diagnosis of POTS, I take a simple, short journal article with my to appointments with specialists. Rather than explain everything, I say I have an autonomic disorder that is fairly rare and I brought information that could explain it to them better than I probably could. I hand them the article and let them teach themselves. I circle/underline symptoms I suffer and put check marks next to all of the tests I have had (ALL of them!). I insist it be put into my chart even when they say it is unnecessary. Here is a link to an abstract of my personal favorite article. I like it because it has figures/ boxes outlining symptoms, treatments, and tests. It is short, but covers most of the bases, even the different types of POTS. I'd link the actual article, but you need to have a subscription to access it. I access it through my library. http://primaryhealthcare.rcnpublishing.co.uk/archive/article-postural-orthostatic-tachycardia-syndrome Ever since I went to Mayo Clinic's POTS Clinic and can throw in that disclaimer, I never get doctors who don't take me seriously. It's sad we need a "disclaimer" to be taken seriously by certain doctors. At this point, if a doctor is dismissive (which I haven't had happen since my diagnosis except once with a homeopathic doctor), I would find a different doctor. This is an autonomic disorder which therefore has the potential to impact every one of our body systems... They should take it pretty seriously. I don't catastrophize my illness, but I do ask that it be considered along with their existing knowledge of their area of expertise.

Unfortunately, I have a lot of experience in this area. Fortunately, I've got it fairly under control these days. Here is what I do. I eat small, spaced out meals.I consume tons of water and broth first thing in the morning as well as eat plenty of fruits/veggies throughout the day to keep myself regular. My body already seems to have a difficult time with digestion, so I like to keep things moving along.I try and avoid difficult to digest foods such as meat. For me it is also difficult to digest dairy, egg, soy, and gluten (IgG testing). Ever since I quit eating meat, I don't get abdominal pain any more.I take Ginger Root (550mg) for an upset stomach or with at least one meal a day.I take probiotics to make my gut as happy of a place as it can be. I've had most success with Orthobiotics Probiotic. It's multi-strain. Everyone has a different gut environment so find what works for you.When I eat anything except a small meal, or choose to eat difficult to digest foods, I take a digestive enzyme to help my body with breaking down the food. (I love Source Naturals Daily Essential Enzymes).When I get gastroparesis (delayed stomach emptying) I take Reglan 10mg. It forces the stomach to empty more rapidly. It works for some.When I get to the point of almost vomiting and ginger has failed me, I take a Phenegran. Zofran tends to have less side effects, but for some reason did nothing for me. Phenegran makes me feel very drugged, but it is better than severe dehydration and 5 night hospital stays.If I do vomit, I go to the hospital to get IV fluids to avoid a downward spiral that will land me in the hospital overnight. I used to have to go through the ER for fluids (I'd take a journal article explaining POTS). Now my doctor just has a standing order and I can go to an infusion room which is where people who get IV antibiotics and IV chemo go.

Could you collaborate with other autonomic specialists from around the world (with varying focuses) and make a list of tests people should look into if they want to find the root cause of their dysautonomia? I want to know the "why" of my illness.

I just wanted to say I am going here. My treatment dates are July 22-August 2. I know it is not a cure, but it is something that makes sense as to why it'd help with some symptoms, and I haven't tried yet, so I'm going for it. I will be posting tons of details on my blog throughout my visit if anyone is interested.

Excellent thought Margie! The toeless ones are also nice because I can wear flip flops still.

I just wanted to throw in that I've had most success with thigh high compression stockings. I've tried several brands, but Jobst is my favorite for softness, comfort, and breathability (still not very breathable though).

Thanks for the ideas. I'm wanting to get this done before I go for 2 weeks of intense biofeedback treatment (POTS Treatment Center) July 20. I think it could really help me notice improvements I may otherwise overlook. When I get it done, I will post a link. In the meantime, keep the ideas coming!

Sorry about the tangent everyone. But... Freaked, I'm planning on writing a generic letter of what was wrong with me all of this time and sending it off to about 20 doctors. The cardiologist who I asked for a tilt table test and she refused, saying POTS is a ridiculous explanation for my symptoms, is getting a very special letter. At the same time, I'm going to write thank you letters to all of the doctors who, despite not diagnosing me, never doubted there was something wrong with me other than anxiety or depression.

I was going to say what angel said, could we add sometimes to the last question? It typically takes an hour of laying down to undo the headache. So maybe yes -- relief in less than 20 minutes and yes -- relief takes more than 20 minutes?

Although I tend to agree with others that the hospital probably won't be fruitful based on my own experience, I think going to a larger hospital is a smart idea if you go the hospital route. You know your body better than any of us, so do what YOU think is going to help you most. If that is going to the hospital -- do it! Even if it just gives you peace of mind, that is something more than you have now. I'm sorry to hear about the long wait for the specialist and how your family wants you to wait it out. That must be frustrating to not feel validated by them when you're working so hard to be a trooper. I think I'd just tell them I need to go and they don't have to agree, but could they please drive me so I don't have to pay for an ambulance ride. I have two thoughts on the insurance situation.. 1) If you explained your symptoms got worse and you were afraid something life threatening was going on, they'd probably pay. 2) If they didn't pay, hospitals have financial assistance programs that complete free you of the bill so long as you meet income requirements. Could you call and be vague -- just asking what the financial requirements are for their program? Typically you can use them once a year or once every other year. I've had some hospitals want documentation such as last years tax returns and some hospitals who just want my last pay stub. When I say I don't have a pay stub, they typically call and just ask how I get by and such, and once I explain I live with my fiance and my parents help us with groceries, they accept me. Would getting medication to help with pain control until the specialist appointment be an option?

My local doctor didn't do the endocrine testing, I had that done at Mayo Clinic's POTS Clinic. I haven't been tested for Mass Cell Activation. I'd be interested in learning more about it. Dysautonomia runs in my family with several members having had POTS or EDS. I'm the first one to have it so significantly alter their life.

I rarely eat large meals for this reason. I just eat one piece of a meal (beans/ some fruit/ a piece of bread/ half an avocado) every 2 hours or so. If I do eat a large meal, I take digestive enzymes so my stomach has an easier time digesting and can get the food out of there more quickly. My favorite combo enzyme pill is Source Naturals Daily Essential Enzymes. I pop one of those and sit in the recliner for an hour after a large meal. I gave myself esophogitis from laying down right after drinking acidic drinks or eating. It makes it too easy for the food to get back up into the throat which is why I now go to the recliner instead. If I WAY overdo it and its a flare up day... hours later, I can still feel the food just sitting. I then know I've delved into gastroparesis territory and take a Reglan to force my stomach to empty.

It depends on the situation. If it is results for a test that I know is in, I'm a bit of a stalker and call every other day from the date it is supposed to be in. If it is something serious, (like the time I had internal bleeding) I also am not patient. Luckily my doctor was very quick with follow up on this issue. Had she not been quick, I would have called and asked if they feel they'll be able to help me continue sorting it out or if I should go to an ER. That gets their attention in my past experience. Other times, with questions such as noticing possible mild side effects with new medications, I give them 5 business days before I get impatient. Mostly I would just focus on finding a doctor who is attentive and you don't have to worry about if you're bothering them or if they'll get back to you. My current doctor never makes me feel annoying or burdensome. Like someone else said, you are paying them for a service. They should be providing it!

I don't have experience with this. I just wanted to say I am so sorry you are going through this on top of everything else.

Wow! It's wonderful, thank you.

I just wanted to share for anyone who may look through this topic, wondering what to expect at Mayo Clinic in Rochester, that I had a wonderful experience. I had two insurances when I went. BCBS of IL was my primary and BAS was my secondary. I felt so blessed because all of the tests and appointments came to a total nearing $20,000 and I paid nothing out of pocket. The insurance was not (and never has been) happy about Tilt Table Tests and always ask for an explanation of why that particular test needs done. Once they understood it is the only way to diagnose POTS, they were okay with it. I wrote in detail about each test they run in their autonomic clinic as well as my doctor consults. Here is a link: http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/

To find out if it is hyperadrenergic, they do an Endocrine Test and look at your dopamine, epinephrine, and especially your norepinephrine levels. Here's an explanation of how it goes down... 1) Put in IV (this is to draw blood later without triggering stress hormones in reaction to the poke) 2) Leave you in quiet dark room for 30 minutes (this is to let you relax and your stress hormones come down) 3) Quietly come in and take blood sample 4) Have you stand up/walk around for 10 minutes 5) Take another blood sample The doctor will compare your relaxed and laying flat versus the upright results to see how much your norepinephrine levels increase. My doctor at Mayo said it is normal for it to double. Also, high starting levels can indicate other problems sometimes. Mine was on the low end when taken lying down but skyrocketed when I stood up. Different doctors have different definitions of what qualifies as hyperadrenergic POTS. Some say you need hypertension plus high norepinephrine with standing in order to have it. Others say all that is neccessary is high norepinephrine. Someone recently posted an article from Vanderbilt's Autonomic Center that said the type isn't all that important in treatment.

Autonomic issues run in my family. My Mom has EDS and my aunt has a weak autonomic nervous system. My grandma has passed away, but we think she had POTS. My sister had POTS (but healed!) and now I have it.

It is so hard to adjust to the changes dysautonomia can bring. I had a lot of trouble in the time period after I had to quit my job. I had just graduated college and gotten a dream job. It felt like the girl I was died and I was mourning her death. For me, the best coping mechanism is the support of my family and friends. I write all about how I cope on my blog. Here is a page devoted to what helps me cope: http://lethargicsmiles.wordpress.com/coping-with-illness/having-a-chronic-illness/

I did the interview. I keep thinking of things to add and messaging her. It should be in print Monday.

Joann, it sounds like this is already your thought process, but if you are this concerned for you health, just go to the ER in my opinion. I know it isn't the common wisdom here since often there's nothing they can do to help you. However, if the annoyance of explaining dysautonomia and the exertion of an ER visit sound less terrible than going longer without seeing a doctor, just give it a shot. Explain you feel like something is seriously wrong and cannot deal with the pain any longer. Something needs done. The worst that will happen is they'll say they can't help you.

My latest gastro told me something very interesting. Gastroparesis may come and go depending on how my ANS is doing on a given day. She said just because I didn't have it the day of the gastric emptying study doesn't mean I never have it. It just means I don't have it all of the time and it is secondary to ANS issues.

I'm looking for a printable dysautonomia checklist that is categorized by area (neurological, digestive, vision, endocrine, etc...) I was thinking for chronic issues there could be a check mark and for symptoms that occur only during flares a circle or x or something like that. Does this exist? If not, I'm going to create one myself. I just don't want to recreate the wheel! I found this thread that will be a wonderful start for a checklist: http://forums.dinet.org/index.php?/topic/22986-the-symptoms-we-get-from-pots/?hl=%2Bcheck+%2Blist#entry214500 Feel free to give suggestions of symptoms that I should be sure to include that you feel are commonly forgotten. I'd love for this to be useful for people to print out and take to doctors.

I have standing orders for fluids from my PCP. I just call the hospital and go to an infusion room (where people get IV antibiotics/chemo) and receive fluids. This is pretty much all the hospital can help me with. The one time I was admitted to the hospital is when I had a 102 fever, severe dehydration due to vomiting, and my CRP was sky rocketing. They were worried something was seriously wrong. I ended up in there for 5 days and they never figured out what was wrong. The CRP went down on its own. It helped being admitted because I could get meds through an IV since I couldn't keep anything down. Other than that, I don't see a reason being admitted to the hospital would help. The doctors were willing to learn about POTS and were eager to help me find doctors who could help me, but really nothing was learned from this experience.

Margie, I like the idea of going in depth on the ANS rather than super in depth on POTS itself. When I first explain POTS to someone, I always start with how it is caused by the ANS which controls all our involuntary functions. I get much better results than when I used to start with "Well my heart rate goes up to 135...." Instead I say, "Well my body seems to think it is being chased by a bear, reacts accordingly, and stays in the state all day long."