Lethargic Smiles

Sounds like a great place!! I'm happy you're seeing so much benefit.

Me too! I think it is so helpful for people who are able to get back to living a normal life just to drop by and explain what was (or wasn't) figured out. Should we all be waiting around for spontaneous recovery... or should we be looking for a particular specialist who will find the root? Hearing other people's recovery stories can help us be more at peace with whichever route we choose. I'm inclined to find the root since this is genetic in my case. Still, in my sister's case, it seems she sort of just had a spontaneous recovery since she wasn't doing anything targeted at POTS/dysautonomia.

My older sister was diagnosed with POTS in the late 90s as a teenager. Back then, there wasn't much info out there on the internet and the doctor she traveled to see said it was no big deal. She was instructed to just eat more salt and she'd be fine other than having palpitations. All of the other symptoms (not getting out of bed, pounding heart) were labeled as severe anxiety, agoraphobia, and major depression. After about a decade, she became her normal self again. It happened over about a year or two that she rapidly improved. We thought her depression/anxiety were better, but actually, it is her POTS went away. She didn't do anything special since she didn't know POTS was causing her many issues (shaking, sometimes instantly dropping to floor (but not fainting) upon standing, fatigue, racing heart, etc...) Since my diagnosis she has been retested and she is POTS free. She works one full time job requiring quite a bit standing and a part time job requiring standing the full time totally about 50-60 hours a week. If she does too much (say, takes on extra hours and goes out a bunch and is under extra stress, all at once), she has issues with painful joint swelling, but no POTS issues. We have some sort of autoimmune issue going on in my family, so I think the joint issues is more due to that than POTS, and perhaps the autoimmune issue makes us more susceptible to POTS.

You're not the only one! I think this happens to most of us. I am getting ready to go see a geneticist and am going to have to go through my pre-doctor routine. It takes lots of energy but is worth it. I haven't been to a medical establishment yet where they turn me away when I nicely (and pathetically) explain I really need somewhere to lay down while I wait to be called back.I always point out to the doctor, "You might notice I don't seem quite with it, this is a symptom." I'll explain how I would have been prior to becoming ill (for example -- alert, probably with just a post it note to remind me of major issues)Is there anything you really don't want to happen? For example, you don't want to leave without a certain test ordered or without a certain symptom discussed. Write down your goals for the appointment. For example, "I made this appointment for 3 reasons. I want to talk to you about my dizziness. I want to talk about medication x and I want to find out if you have any thoughts on my abdominal pain". This lets the doctor know your goals for the appointment so if you start getting foggy midway through your first topic, the doctor will know its not that you are done with him/her, you just aren't feeling well.Record the appointment. Most cell phones can do this.I ask doctors to write down things for me. I don't ask for an essay, I just ask if they could write down any possible disease/diagnoses discussed and courses of action. I've never had one even look at me twice for asking this. If anything, it makes them realize I need their help to get the most out of the appointment. Of course... I've never asked a doctor who is a jerk to do this because I always just want to get out ASAP.I always write everything ahead of time. It depends on the doctor. I find the most effective way to communicate via paper is to make a chart with symptoms on the left, then in the right column, I go into detail using bullet points. For each symptom, I include the severity, how often you get it, if anything seems to make it better or worse, how long you've experienced it, if any symptoms seem to occur with it, and what has been tried to help it. This way if the doctor sees "fatigue" s/he can easily look over to the right and read more, or if s/he already knows about this issue with me, can keep moving along. If I am going to a gastro, I'll highlight the gastro symptoms, but still give the full chart because you never know what will be handy.Don't leave without finding out "what next" or if the plan of action doesn't work, what should you do?Know you'll probably always leave and think "Darn it! I wish I would have asked ______!!" I think this happens even to healthy people!

I drink about 60 ounces of fluids (half water, a quarter broth, a quarter unsweetened almond milk) over 30-40 minutes first thing in the morning. It really helps and I'm a mess without my morning fluids. Now I know one more reason why it is so helpful -- thanks!

Mine is normal but I also take a vitamin with it in it and tan occasionally. I've heard some people argue vitamin d our bodies make from sun exposure isn't used the same as oral vitamin d, but I've never researched it looking at scientific articles. My guess is its like most anything where if you can get it naturally from nature's intended source, our body can use it best. If we can't get it from nature, our body will make do with the man made/extracted form. My aunt who tends to have autonomic and immune type symptoms when she comes down ill, but not POTS (although my POTS does come from that side) was feeling so tired. She thought her thyroid medications needed adjusted base on past experience. It turned out she had low vitamin . She was skeptical when the doctor said they needed to get her D levels up and see how she feels before adjusting her medication. She felt much better with a supplement and medication adjustments were unnecessary! My conclusions were if low D can make a fairly healthy, active person feel awful, imagine what it does to us and that oral vitamin D must do something if she saw a change. Phew! That got long!

Hormones are so important to how our body functions. I'm wondering if hormonal birth control could have played a part in creating the perfect storm, allowing dysautonomia to take over my body. This would in addition to a genetic predisposition, inadequete medical attention to symptoms, nasty case of mono, high stress levels, and hectic low-rest schedule. I was a late bloomer and I used to get my period so frequently, I became anemic. No amount of iron supplementation seem to help. (As I type this, I wonder now if not responding to iron supplements could at all be related to low blood volume?) After 2 years of this, I went on the pill. 2-3 years after that, is when my decine began. My full out rock bottom was about 5 years after starting. I've been on hormonal oral contraception for about 7-8 years. I currently take Seasonale and do really enjoy only having a period every 3 months. I'm just thinking, everything is already so messed up with my body having dysautonomia, could I be messing it up more? I'm a bit scared to go off it after so long, but I think I'm going to take the plunge. I also find it strange how doctors discuss/ask me about all of my medications, in depth... except birth control. It is never mentioned. I suppose this is because it is personal, but I don't think it is that far out there to suggest perhaps the hormones aren't ideal for someone whose body is already out of whack. Ctat, I've had my eye on the copper IUD. I don't know that I am a fan of how it works -- by causing "localized asymptomatic inflammation" -- but its probably closer to natural for my body than hormones made in a lab... Or my body constantly being in a fake hormone induced state. I also like its high efficacy level. Have you had children? Hholmes, I've considered the Nuva Ring. What an awful experience you went through throwing up each month with the pill. I wonder why that happened? A con of the ring (to me) is it is still hormonal. However, at least it is supposedly localized and also, it doesn't have estrogen. My sister (who had POTS for about a decade and recovered) responded well to it while she still had POTS, so that's probably something I should think about. MedicGirl, I wish I'd never taken them! Not because I'm convinced they've made me sick, but because I've put manmade, unnecessary hormones into my body nearly each day for 7 years. That can't be good! My body has enough to deal with! Looking back, I wish after a year or so the doctor would have suggested going off of it to see if my cycle became more regular.

If I'm talking to a doctor and they ask me if I'm experiencing a symptom and I am not sure, I ask for their definition of the symptom or how I would know I have that particular symptom versus another one.

Have you ever had the "medicine head" feeling from something like cold medicine? Especially, the feeling of not being able to really focus, remember after taking nighttime cold medicine? To me, that's what brain fog feels similar to. For me, it's more of a mental feeling than a physical one such as lightheadedness or dizziness.

I'm finding there isn't a ton of research out there on the long term effects of its use which is concerning to me, and it is making me think about taking the plunge and switching over to a non hormonal contraceptive option. Let me know if you'd like any options changed/added!

I have an "as needed" standing order and have had it with 2 different insurances. Both have always paid almost all of it, but when I see the statement, I'm pretty sure each infusion (includes basic metabolic panel blood test to check electrolyte levels) was billed 500-800 dollars. I think once (prior to getting secondary insurance) I had to pay something less than $50.00. My first prescription said "for severe dehydration due to POTS" the other said "for POTS attacks", but I know they code it as orthostatic hypotension because POTS is not something they have in their system. I'm not sure if it being a standing order I call in when I need rather than a weekly appointment makes a difference. It shouldn't since technically, I could go 2 times in 1 day with the order I have written, but insurance companies can be strange creatures! Would it be cost effective it to get a insurance policy with a little more coverage?

Biofeedback aimed at improving circulation, specifically focusing on increasing peripheral skin temperatures, has helped me in addition to the previous recommendations. You can get a biofeedback hand thermometer cheaply on Amazon.

Taking care of kids with a dysautonomia flare is awful. I don't know why, but nothing triggers my symptoms quite like a kids voice/squeals (how depressing is that) or kid's shows/movies/toys. It's awful. Then I feel awful for hating the sounds when the reason TV is being watched is because I'm so sick. I have a stepdaughter (4) and younger kids require so much up and down. I can't imagine TWO of them. They also require a lot of talking even if you are all just hanging out, watching a movie. They have lots of questions, they need corrections, they need instruction. Even when I ask for things to be brought to me or when I announce I'm getting up now, if you don't have me do something now, you'll need to wait 15 minutes... It's still really hard on my body. When the sounds are going on and I'm having a bad health day, even laughter (again, sad to say it), it makes everything worse and my brain just freaks out and can't think of anything except the over stimulation. It melts my heart when my stepdaughter asks me to do something, I say I can't because I'm not feeling so hot, and then she thinks of a way to modify the activity so it can be done in bed. It also makes me feel so awful for the sound of her laughter making me feel so much worse during a flare. I always felt so terrible about that and thought it might be an "evil stepmom" thing until I heard a birth mother say she felt the same way about her own children's voices during flares and other moms chimed in saying the same thing. I love her so much, but she makes me so sick. I have this ideal in my head of the parent I want to be, but I can't be that woman right now. It is such a terrible, conflicted way to feel. The little person you love more than anything in the world... you'd jump in front of a bus for them, make you more sick than anything. In terms of when I'm in a flare and what makes me worse... I'd rather be in the ER with a drunk guy in the bed next to me. I'd rather be in a restaurant with annoying music. I'd maybe rather be in a sauna. I guess I just wanted to let you know, you are not a wuss, taking care of kids + dysautonomia flare = worst thing ever. I think you shouldn't feel guilty. Imagine you looked back on a memory and your Mom was as sick as you are and you were the kid, would you resent her? I'm guessing not. Every single moment doesn't have to be "magical" with your kids for you to be an awesome Mom. You'll always put your kids first, but there are times when your body leaves you no choice but to focus on your own well being more than you would at other times. Sometimes, parenting is just putting your head down and getting through the day in one piece!

I think the problem might be you're asking for them at home rather than asking for them to cover an order you go to the hospital or doctor to receive. I've lived in 3 different towns, and in each town, the hospital had the ability to give me IV fluids in outpatient/ambulatory care. My insurance (3 diff providers over years) has always covered it with the reasons for the orders being labeled as either severe dehydration or POTS attacks. I just have a standing order so if I go twice in a week or twice in a month or twice in a year -- it's up to me. I hope you can get something figured out. It shouldn't be so hard to get IV fluids!!! I'd go crazy.

While you still have some of what you know is safe Midodrine, could you break both Midodrine pills into fourths or even eighths, and just take an eighth or a fourth of the new Midodrine and then 7/8 or 3/4 of the old Midodrine? You could screen for a reaction and, if you do, maybe it won't be as major as it would be with a full pill.

I basicslly run fevers when I overdo it. Nobody knows why, other than its pretty clear to the various docs I have seen, something is living in my lymph system. My lymph nodes swell up in the throat, armpits, and abdomen, I get very fatigued, and I also run fevers. Sometimes my spleen is enlarged as well. I had these issues, which seem to have been triggered by mono, awhile before the autonomic dysfunction came on. My theory is when I do too much, my ANS which controls the immune system, is overwhelmed. This maybe leads to the immune system being unable to suppress whatever is in my lymph nodes the way it normally does. I think my fatigue is largely from constantly fighting a virus. POTS runs in my family, but was triggered by mono in my case. I've had mono symptoms ever since I first got it back in 2008. My DNA blood levels of EBV are fine. My antibidy blood tests for mono were never positive, but I guess 20% of people don't test positive for active mono virus even though they have it. This makes me wonder if there's a disease that closely mimics mono but isn't mono. Maybe I should do a poll of how many of us with immune issues who had mono tested positive for an active virus!

I'm happy you're doing a little better! I wonder if you had a cold coming on, so your immune system was less able to handle the flu shot and what you're experiencing is a cold/flu shot combo. Lucky you! I try and avoid taking anything for my fevers if I can, but at a certain point, I figure there is no point be uncomfortable if I don't have to be and take it.

I never look to see if the manufacturer has changed, but I will from now on. That's something worth knowing, sensitivities or not. My Midodrine pills (10mg) are made by Upsher-Smith. They are purple, have a break line in the middle, and dissolve pretty quickly. They've always been this shape, consistency, and color, so I'm assuming I've never had a different manufacturer, but who knows. If anyone is having trouble figuring out who makes theirs by looking at their prescription bottle, on my label, there were the letters "MFG" followed by an abbreviation "UPSH-S". I typed the abbreviation followed by "drug manufacturer" into Google and got the name.

Mayo Clinic and other doctors I've been to all recommend exercising as parallel to the ground as possible. Using a recumbent bike or rowing machine are popular options. I looked up and put together a list of exercises I can do at home that are fairly parallel to the ground. You should not become dizzy, nauseous, etc. from exercise. I would recommend consulting your doctor to figure out what is best for you and to make sure you know how to monitor your exercise regimen.

This is sort of what biofeedback can do for some people. For example, I have a hand thermometer and my goal is to get my hand temperature up to 96.0 or higher. I do this through diaphragmatic breathing. I have one I hook up to my finger and a less accurate one that I just put my thumb on. Anyways, if something is bothering me, I notice I can more easily overcome letting it overwhelm me when I am doing my breathing and focusing on raising the number on the thermometer rather than breathing and focusing on how it is impacting my emotions. I think this is sort of what you're describing. Biofeedback has actually gotten me into meditation which (with the way many people practice it) is about being able to let the thoughts enter your head, and exit without feeling the need to hold on to them, analyze them, think about them further etc. I don't think I would have gotten into meditation if I hadn't seen the benefits of phasing out everything and focusing on my breathing during biofeedback!

I hope this has passed by now. I get fevers a few times a week, so I definitely know how cruddy you are feeling. I sleep under a soft blanket in just my undies since my skin gets super sensitive during fevers. I take Tylenol. If its bad enough, I set an alarm so I don't miss a dose. Also, do what you would do to help yourself cope with the flu since that's what is causing this fever!

Medic Girl, that's probably my answer. They didn't want to come right out of the gate with Mestinon. I'm happy they had other options they could offer you than the beta blocker/Midodrine approach.

I will report, I tend to overheat easily in the summer and to be sort of cold in the winter. When I do biofeedback and get my circulation going, I warm up, but otherwise, I'm in a heavy hoodie and sweats... With a blanket! It's day 2 of the Muira Puama tea at a weak dose, and I'm getting hot more easily than usual despite it being quite chilly here in IL and me having been freezing all of the time until today. I'm not having hot flashes, but if I move around (just walking around house and such), I'm warming up quickly and in general, I'm not getting cold as rapidly. I found this interesting because its thought Muira Puama may inhibit acetylcholine. Mestinon does thisas well and people report feeling quite toasty on it.

MedicGirl -- Had you been taking heart medications prior to Mayo? I see Mayo is conducting a study on Mestinon, so maybe something about my case made them recommend beta blockers/Midodrine and not add in if those don't work, perhaps Mestinon. I wasn't on any blood pressure/heart rate medication prior to Mayo, so maybe they were just recommending the first line of defense? Lynnie -- Its always neat to hear when someone has similar readings as you with how varied we all tend to be! How frustrating your blood pressure can't decide if it wants to be high or low. Personally, I require Midodrine but I don't have the high readings like you do. I do take more in the evening than in the morning. I think the Adderall I take in the mornings increases my BP a bit. I will maybe make a new topic on the teas or maybe just link a blog post back here. I've gotten superstitious because whenever I say something is helping or even just that I think I understand how something effects my body... it's like the chronic illness gods get wind of it and strike down! So I'm keeping my mouth shut for at least another 3-4 weeks.

Kisekis -- I've never benefited from an SSRI or a SNRI I felt like a zombie, but otherwise, no worse. Wellbutrin sort of helped with my energy, but caused hair loss (my sister had the same symptom). It is quite unique as an antidepressant in what neurotransmitters it works on and typically is used alongside a SSRI, but in my case we used it alone. I found it increased my restin heart rate a little, but it didn't increase how much my heart rate changed in response to posture changes. I now take Rhodiola Rosea instead. Maybe others can chime in with their experiences. MedicGirl & Sarah -- I went to Rochester Mayo in August 2012. MedicGirl, when did you go? At that time, they didn't recommend Mestinon. My GP is the one who is currently helping me manage medications and IV fluids and the like, mostly based off of the advice from Mayo (I call as needed) and journal articles. Maybe I should call Mayo and get their stamp of approval on Mestinon so my GP will feel comfortable. She just e-mailed my saying she'd be more comfortable first trying to increase my beta blocker because of the negative effects of too much acetylcholine. Much to my frustration, one of her reasons is most of the research is on post-viral POTS. Uhhmmm, hello? Mine was triggered by mono! I know she's just having a mind blank, and is probably thinking of how my sister had it as well, but it is frustrating! Sarah, I've been feeling about the same. Thanks for asking! How about you? This week I've been starting my experiment with some not too well known bark teas from the rainforest that have varying properties such as anti-viral/bacterial/parasitic/fungal and blood cleansers. They taste really gross, but I definitely have some sort of immune issue going on that needs tackled and this is an approach I haven't tried. From what I understands, the teas often offer benefits the ground up, encapsulated bark does not. My Muira Puama should be here soon which I've mentioned as possible acetylcholine inhibitor. I've also started an herbal supplement commonly referred to as "Brahmi". It is known for boosting memory (although it hasn't been empirically studied for more than 3 weeks at a time) and in some, it decreases heart rate, so I thought why not? It takes a few weeks to see any benefit, and many report it taking up to 6 weeks to see full benefit. I'm monitoring my blood pressure closely while I do these experiments as I know many herbs can effect blood pressure. It isn't like me to start so many new things at once, but I want to sneak attack the virus (possibly EBV) that I suspect has been living in my lymph nodes for the past 6 years all at once, not giving it time to adjust! I suspect whatever is living in my lymph nodes, causing them to swell, is what is weakening my ANS.