Lethargic Smiles

If you want to look into the reason for this further, maybe you should do a 24 hour urine collection to determine you sodium levels when you are fluid loading. I thought there was no way I wasn't getting in enough salt, but sure enough, I wasn't. What I did take in wasn't enough so rather than helping me hold on to water, it was just getting washed out by all of the fluids.

I am hoping people who have a standing order for IV fluids or who give themselves fluids at home through a port could respond and I will print this discussion out to share with my doctor. Thanks in advance! My question is: Does your doctor require a blood test prior to each IV hydration to check electrolyte levels or any other levels? Also, on average how often do you require IV hydration and how many liters do you usually receive?

I didn't follow the advice to take it easy, although I thought I was. I was out of the game for about a week with a 103 degree fever and I was warned to take it VERY easy for several weeks, especially with how enlarged my spleen was. I took this to mean just don't do too much physical stuff. I sort of took it easy, but to me taking it easy meant still working most shifts, still turning in all my college assignments on time (which required walking a mile), and just excusing myself from class for a week or two, still doing all sorts of stuff..... And 6 years later I'm still sick. I was fine before that. I was predisposed to POTS by EDS and mono triggered it. I'd do anything to go back and yell at that ambitious 18 year old girl to just rest in bed for 2 weeks! I'd tell her just because she is typing research papers from her bed, it does not mean she is resting. I'd tell her she is tired because she needs to SLEEP and repair. I would tell her not to view the fatigue as a challenge, rather to view it as a message. Point: take it very slowly and keep a symptom journal so you can assess if you're going at a good pace

Sorry -- too many thoughts! Has an occupational therapist been tried with your daughter? They could help her learn to plan with her illness in mind.

I don't like their assertion to you that kids going through chemo attend school, so she should be able to as well. I am sorry you have to deal with these people. First of all, they are different illnesses... Second of all, I'm sure some kids on chemo can go to school, but I bet some can't. Similarly some kids with POTS can go, others can't. If it were not a disabling illness, people wouldn't get Social Security Disability for it!

My sister had POTS in high school and a similar thing went on with her feeling worse come Mondays and developing school anxiety. It sounds as though she is aware school will likely make her feel ill and maybe embarrassed which is very stressful to think about and, as I'm sure you know, stress makes POTS symptoms worse. I agree she would benefit from coming to terms with attending school giving her anxiety. Personally, I think it is important she is working with someone who has experience helping chronically ill children with primarily physical illness rather than primarily mental illness. It sounds like her anxiety is secondary to POTS, and if POTS hadn't happened, she wouldn't have school anxiety. Who wouldn't get anxious if they were going to have to do something that makes them very ill (maybe for days) and is emotionally uncomfortable? She's always going to have a sense of dread come Monday -- that is not abnormal given what he's being asked to do, but hopefully the therapist can help her cope with those feelings more productively, identify any skewed thought processes going on, and help her learn to not isolate herself. I used to not think a particular person in my life who caused problems made me more ill. Looking back, I think the reason I didn't understand it is because I worked in mental health field, high stress jobs so I did not believe one person could make me so much more sick after all I dealt with regularly. I especially felt this way because I was aware of the stress and handling the situation.... so what was left for me to be worrying about? Then one day, it was crystal clear; this person causes me a lot of stress which in turn causes lots of flare ups. Once I acknowledged the trouble this person causes does indeed make me sick (whether I am good at dealing with her or not, whether I have helped others through similar situations or not), I was able to move on to learn new ways to think about the situation when she stresses me.

Please keep updating us. I am very concerned about your safety. We are here for you!

My chest tightened just reading this. How horrible! I'm almost positive your POTS wouldn't be flaring up quite so bad if you didn't have such stress and had a supportive environment. I know even small stressors can make me flare, not because I have anxiety, but because my ANS is already all messed up -- it can't handle extra stress! The worst flare I've ever had, which landed me in the hospital for a week, happened after a really toxic person in my life caused a ton of drama. I have POTS no matter what, but stress definitely impacts it. Maybe going to a psychiatrist would be a good idea. Not because I think you're having psychiatric problems, but because a psychiatrist could evaluate you and write out a report stating you do not have an anxiety disorder or depression and/or that isn't causing these symptoms. That's what I did! It was a Godsend prior to my POTS diagnosis because some doctors would say "well, you're just depressed" and I could show them the report stating I am not. The doctor said I scored as having depression, but he wouldn't dream of diagnosing me with it because the reason I scored high is because of my fatigue and inability to do things I love due to illness, not because of a lack of desire/ability to do things. I didn't score as having any abnormal level of anxiety. I agree it sounds like you need a thorough workup. What sort of testing have you had so far? How is your relationship with your boyfriend's parents, any siblings you may have, or your other family members? Could you possibly stay with any of them while you get things sorted out with doctors? I know I'd take in a family member going through what you are in a heartbeat! Have you spoken with the doctor since you got sent away from the hospital and asked what he recommends for you since your living situation is not safe and you are much too ill to go to some sort of shelter? I don't understand how someone would think your illness being nonfatal makes it insignificant. Would blogs where people write about POTS and how their family supports them be helpful at all to helping your parents see what a terrible decision they are making, or is it beyond that? What about medical journal articles? What about the fact there is a whole clinic at Mayo devoted to your illness -- why would they create that if it wasn't a big deal? I am sorry if I am ranting, but I am outraged on your behalf. You may not have support there at home, but we are always here for you!

I am 24. My Mom can tell with one look how sick I am feeling and can even tell over the phone by my voice. It's not even a symptomatic or not symptomatic thing, she can tell the exact degree of my suffering by looking at me. She can tell if I am going to get a cold in a few days by my voice over the phone and told me I was getting mono 5 days before I realized I was sick.... also over the phone. Mom powers! She will also notice changes in my coloring more than other people around me a lot do. Sometimes I will be talking to her and not really notice a sudden increase in symptoms (because I'm used to it), and she will say, "Your color just drained, are you getting sick?" I think it may be a Mom thing. When I feel incredibly bad and have been throwing up and such, most people can tell I am sick.

Here's a bunch of questions/suggestions based on what has helped me. Have you seen a GI doctor about this?I'd suggest look up gastroparesis and seeing if it sounds like you. People can have it to varying degrees and it can come and go.Have you tried digestive enzymes with meals? (I use Source Naturals Daily Essential Enzyme -- very broad spectrum and inexpensive)Do you take a probiotic? (I use Ortho Moleculars Ortho Biotic)Have you tried ginger? I take ginger after heavy meals or before eating on rough days. I also start each day with a ginger supplement whether I am nauseous or not. Surprisingly, the brand Spring Valley found in Walmart smells more "gingery" and works better for me than more popular/expensive brands.How are you doing on staying hydrated and do you have enough sodium in your body to hold on to the fluids you are taking in? Dehydration causes nausea in everyone, but I've noticed since I've gotten sick, that I am really sensitive to even mild dehydration.Have you tried diet modifications such as gluten or dairy free? I don't eat gluten, soy, dairy, or egg and rarely eat grains. Each person's "formula" will be different of course and may change over time.Once I got my nausea/vomitting under control using strong medications, I was able to start managing my GI issues with the aforementioned diet and supplements. The supplements really were not much help when I was throwing up several times a day The medications (Phenegran for nausea/vomiting and Reglan for gastroparesis) got me to a place where I could start managing it with supplements and avoid letting it to get out of hand again. Now I almost never need Phenegran and rarely need Reglan.

I agree with kJay that this isn't normal. We're you going through the autonomic clinic (the week long visit of testing and consults) or was it an isolated appointment with the neurologist? All of the specialists spent a really long time with me, even if they didn't have much to add. If they didnt have something to add or were confused by a test result, they set me up with a specialist who could help. Each consult was definitely no less than half an hour and sometimes as long as 2 hours. Also, they all were consultations so none of the doctors prescribed medicine, they said they'd put in the report my home doctor should try me on a particular medication.

For me, it's dehydration because I need to get in my morning sodium/fluids and also because I haven't had all my medicine and supplements yet. I keep the medications on my nightstand and lay in bed until they start to do some good.

Thanks for the tips! I may be on to something based on a Gallium Scan I just had done.... I will update when I know more!

I did some searching and couldn't see a thread on a sarcoidosis. Does anyone have this diagnosis? I think neurosarcoidosis would make sense in some POTS cases.

I also cover my other electrolytes by supplementing calcium and magnesium. I get potassium from foods.

I use Edward and Sons bouillon cubes. I'm not vegan, I just like them. 1.5 cubes (3 servings) heated up in a pint of water. It's quite the hit of sodium and helps me hang on to the liter of fluid I drink along with it. If I had it my way, I'd be making stock from left over animal bones and the like, but I'm not well enough.

I drink broth for sodium -- much healthier than the sugar load of most sports drinks and way more sodium.

How frustrating! That's strange she wouldn't give you the results over the phone, but I suppose some offices might have a policy against doing so or maybe the doctor hadn't released the results? Another possibility is there is something of interest in the results and the doctor would prefer to go over them with you in person. I don't know what I wouldn't have done with my Mom letting her Mama Bear out. Your daughter is fortunate to have a good advocate on her side. Watching my Mom taught me how to advocate for myself, so now I can do it on my own. My personal experience: I used to go through days of vomiting and become really dehydrated which lowered my blood volume, which made the POTS worse. I'd resist the idea of the ER, thinking I needed to be next to death to go there. I thought if I went and said I was throwing up and needed fluids they'd think I wasting their time. Now I know better and get on top of it early. For me, I found IV fluids worked wonders. At the ER, I didn't even explain POTS in detail, I just said I'd been throwing up a lot and becoming too dehydrated so I was getting pre-syncope which I am predisposed to. If they wanted to know more, I always had a peer-reviewed, recent POTS journal article with me to offer. They happily gave me IV fluids. Now, I have a standing order for them so I don't have to go through the ER, or if I do, I don't have to see a doctor, a nurse can just administer the order.

While Mayo didn't cure me, the trip gave me so many answers and I'm happy I went. In addition to the benefit of getting some answers, now local doctors unfamiliar with POTS still immediately take it seriously because doctors tend to respect the Mayo Clinic name. I did a daily blog post while I was there in 2012. Here is a link to the page of my blog with all of the posts on Mayo in one spot. http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/ Here is a post of questions I got asked a lot about my visit to Mayo, including the costs. Cost will be different for everyone depending on what additional testing/consults are required on top of the autonomic clinic, but in my case, the bill was $20,000. Thank God for insurance!!! http://lethargicsmiles.wordpress.com/2013/07/08/mayo-clinics-autonomic-clinic-a-guide/

I'm happy you're seeing benefit with this new treatment course and thank you for taking the time to do a write up for us. Keep us updated. I will be really interested to her which antivirals you are given and how they effect you.

I talk often with a POTS patient who went to Vanderbilt outpatient. She saw the doctor, then the doctor ordered the tests, the doctor created a report that was sent to referring doctors, then the doctor's assistant/nurse followed up with her with results via phone afterwards. I am guessing he is probably doing the driving, and maybe I took this comment wrong, but I don't think it should be up to your husband if the trip is worth it. I think it should be up to you!

I am a 10. I've always been drawn to the number 2 and 22.

Maybe someone will chime in on an app they find helpful -- but I know they make apps to track your blood pressure and symptoms. I need to do 24 hour urine collections to figure how I am doing with sodium. It's hard to figure out on your own and each specialist seems to throw out different numbers! I thought I was getting plenty of sodium, but turns out I wasn't getting near enough and I was washing out what I did have with water. I never would have figured it out without a 24 hour urine collection.

Have you looked into neuropathy?

I can add my experience which is during a flare that includes surges, Xanax has been helpful to me.