Lethargic Smiles

I'm just clarifying -- are you saying you were moving a bit when you were taking the blood pressure reading or you were moving, then stopped and took the reading? My blood pressure will be 140 on top if I am talking or moving during the reading, but if I am still, it is typically in the upper 90s/lower 100s. I believe what I experience is pretty normal and is just my body adjusting to my movement and also the movement/talking can mess with the machines ability to read.

Maybe you would be surprised by who and how many people care. I know I was when I had a fundraiser. People I didn't even think cared or noticed I was ill donated. They often expressed how happy they were to finally be able to do something. I feel really lucky in that most people I was close to in my life prior to becoming as ill as I am now, "get it". I think a lot about what makes me different than others who seem to have no one. I don't have any answers. It breaks my heart to see people without support because my support system is so important to me. Most of my support system is my family. I haven't had a single member not understand ever since I started my blog on my condition. They all are always telling me to lay down and rest during family functions. My extended in-laws understand too on a basic level. I've always been a quality over quantity type of person when it comes to friendships. I think having such deep rooted relationships has also lead me to be fortunate in people being understanding. My best friend is still my best friend and she is so understanding. I think the key is education. We need to tell our family and friends what POTS is. We need to explain facts. We also need to let people know how they can support us. Sometimes people just don't know so they stay away. For example, if you have a friend who you always did a sport with, and suddenly you can no longer do said sport, they just may not know how to engage with you. In answer to your question... I'd say 5% don't understand (believe/see something is wrong, but don't understand POTS) and 95% are supportive and 0% don't care. If someone didn't care how sick I am, I don't think I'd keep them as a friend. Luckily I haven't had this happen, but maybe that also means I don't know what I'd do. I don't expect constant visits. A few phone calls a year to catch up is fine for friends who live far away. However, I cannot imagine keeping someone around who didn't believe my illness is real or as severe as it is.

Do you take your meds prior to getting out of bed? I keep mine by my bed with a glass of water and take my "get up and go" meds prior to rising (propanolol/midodrine/adderall). I wait about 20-30 minutes then get up. I notice if I wake up and really have to go to the bathroom and can't take the meds prior to getting out of bed for the first time, it is rough!

I know we're getting sort of off topic, but I just wanted to throw in that during college, the school insurance was secondary to my parents. I had no medical bills at all throughout college despite all kinds of testing and surgery. I feel it is the least they can do for how much a 4 year degree costs!!

Naomi, some universities provide insurance to their full-time students in the US, maybe it is something similar to that?

Hey KareBare. Fevers are so frustrating and your case sounds especially so! Yours is different than mine in that when mine comes, it tends to stay for at least a few hours. However, like you, I also sometimes have low body temperature. In my own experience, Tylenol doesn't bring my temperature down to the weird low temps I get some days. I wonder if you could ask your doctor if you could take tylenol (if you wanted to of course) as a preventative measure? Fevers can be very debilitating, especially on top of everything else we deal with! The biofeedback therapy I've received is from a doctor experienced with POTS and is a combination of thermal, EMG (muscle tension), and galvanic skin response (GSR) biofeedback in addition to HeartMath's emWave software which helps me learn to control my heart rate variability. For more on what all of those are, see my link to my blog below. On the page I linked, I explain each type of biofeedback and why it matters. I'd just copy/paste, but it'd make a looongggg post. It has helped some, especially with symptoms like nausea, lightheadedness, muscle aches, pre-syncope (helped a ton with this), and some with the fevers... It helps some of the time with how much I can exert myself which is a nice change. It has helped with other stuff too but I am pretty foggy right now, so I am sorry I am not very concise! It hasn't been a cure-all as of yet for me as it has been for some, but I definitely don't regret going or spending the money on it. I've written all about the whole experience thus far on my blog as much as I can. Here is a post to get you started and it explains how biofeedback helps/what it is/how it works: http://lethargicsmiles.wordpress.com/2013/07/26/pots-treatment-center-equipment/ Also, here's two threads on the center I went to for the biofeedback. http://forums.dinet.org/index.php?/topic/21303-pots-treatment-center-dr-kyprianou/ http://forums.dinet.org/index.php?/topic/23567-pots-treatment-center-in-dallas-texas-dr-kyprianou/

I got a fever in early February of 2008 which was shortly followed by a terrible bout of mono that included your normal, high fevers. That was followed by years of all kinds of stuff that I won't get into, but it all got me to where I am now... including still having low grade fevers. Every "normal" day, my comfortable temperature is 98.6, but toward the end of the day, especially if it is a "bad" day or I've done too much, it creeps up to 99.8-100.2. It feels awful. Biofeedback is the thing that has helped my daily fevers most and now I only get them a few times a week. Beta blocker, pain meds, Midodrine, steroids, all had no effect (good or bad) on my low-grade fevers. I don't have much additional input other than be careful with ibuprofen if you use that to bring down your fevers. I always used it. When I continued taking it even when I couldn't eat, the effect of it on an empty stomach gave me bleeding ulcers! I now use Tylenol once a day, sometimes twice. I miss the NSAID action, but Tylenol is a bit safer for me so long as no more than 4000 mg a day is taken which can lead to accidental death.

I have hyperadrenergic POTS (norepinephrine increases way above normal going from laying to standing) but not the high blood pressure. Different centers/doctors have different definitions. I take 10mg of Midodrine 2X a day.

I typically only go once a week in an "advanced" bed for 10 minutes. Sometimes I'll go 2 times, but generally my limitations financially and physically don't allow that! Tanning beds have been found to be helpful for people with MS because of the immune system involvement. After tanning, the immune system is a bit suppressed. I wonder if this plays into why it helps some of us? I also wonder about the body using vitamin D from light differently than that from an oral supplement. Racer -- Thanks for the links. I don't only tan for the look of it. The effects are what I am mainly going for as I always feel better when I am tanning than when I am not. I'm constantly indoors as the humidity where I live makes being outside unbearable for me for half the year, then the other half it is freezing with hardly any in between. I know going once a week for 10 minutes isn't safe, but considering it is my only vice, (no added sugars/alcohol/smoking/sleep 10 hours a night etc...), I allow myself to enjoy it despite the risks. Kay Jay -- The woman at the salon excitedly told me about their stand up beds. I had to laugh at the very idea of someone telling a POTSie that standing up in a heated tube for 10 minutes is a wonderful option to have. I agree the ingredients in lotions can be pretty scary. I make all my own body products so can thankfully avoid this. Sarah -- This is great advice on checking on the meds. At the tanning salons I have gone to they check this for you, but it'd be easy to forget to check on a new med, especially a short-term antibiotic like you had. That sounds like an absolutely awful experience.

I know this is old, but I was searching on tanning beds because I feel so much better when I tan at least once a week. It isn't low Vitamin D because my levels are great even without tanning. I also get it in a supplement and in my almond milk. I know some people theorize the way our body uses vitamin D from sunlight/tanning beds is different than how it uses oral supplementation. It seems some of us do great with sunlight and tanning which, to me, points to possible autoimmune issues, while others feel awful after being in sunlight. My tricks are: Go mid-morning or mid-afternoon, this way you'll miss the people who tan before work, on their lunch, or after work. You'll be more likely to get a cooled off bed.If you are able, pay a little extra for the nicer beds. They tend to be ventilated much better. Ask to look at the beds prior to buying a package. Check for fans. The bed I currently use has fans along the top inside of the bed as well as on the end and outside. It is AMAZING for my POTS.I don't tell the tanning place I could faint from heat (I think they'd tell me they can't let me tan), but I just ask if I could have a bed that hasn't been used in the past hour if at all possible.I go to a place where the mostly do hair, but happen to have tanning beds. It isn't well known or popular for tanning. It actually looks quite run down, but their beds are nice. This also makes it more likely I will get a cool bed because they don't get a lot of tanning customers.Try and go somewhere where you can make appointments. It is the worst to go to a "no appointment necessary" type place and have to wait 15 minutes to get in a bed, which is of course hot. The place I go to, I call and ask if I can come in half an hour, so not much advance planning required, but at least I know there will be a bed waiting for me!I'd love to hear other people's experiences with tanning.

Do you have friends who are understanding of you not being able to be up much? I feel that makes a difference in the types of social activities you could do with friends.

I'm happy for you that you are able to push through it! I was able to do that for about 4 of the 5.5 years I have been sick. Doctors would applaud my resiliency and devotion to school, part-time work, exercise, and healthy diet. Those around me saw me as the health-nut, fit girl and never imagined how ill I felt all of the time. Pushing through is the reason I graduated college and the reason I was able to get an awesome, satisfying job right out of college. It's the reason I still have muscles even though I've been unable to intensely exercise for 18 months. It is the reason for a lot of things. In my case, I'm much worse off now for having pushed through and ignoring my body when it was telling me "no". I told it I knew what it needed, it didn't, so to shut up. I've seen cases where it has helped people and it sounds as though your doctor and you have pegged yourself as one of them. Knowing your body is key! Whereas I used to be able to push through as long as I needed to when my body was symptomatic, now my body takes that option off of the table by making it impossible for me to stand or by vomiting to the point of syncope. I'm happy you have the option to push through, I'd do anything to get it back!

Adderall helps me, but you just have to be careful not to overdo it because it is what I call "fake energy". It is a bandaid, not a solution, but does allow me to be more alert during the little bits of time I can do things. Also, d-ribose helps me. The reason it helps has to do with ATP -- the source of energy for our cells. Maybe research ATP production and recycling. I think it's pretty interesting and many believe our bodies are unable to do this properly, resulting in fatigue.

The information is a combination of fact and experience. It is a fact illness and stress puts our body more into sympathetic mode and being in sympathetic mode produces all of those effects I explained. If you're in the mode most of the day everyday, it really takes a toll. That is a fact too. I learned a lot about what this means for me as a POTSie at The POTS Treatment Center in Dallas with Dr. Kyrpianou. I hadn't really connected my high school biology on the basic sympathetic versus parasympathetic to my symptoms until that point in time. Simple measures can be used to help predict if the body is in sympathetic or parasympathetic mode such as heart rate variability and skin temperature and then be used to teach ourselves to get into parasympathetic mode. Then there are obviously much more complicated and accurate measures used in research: article. People with POTS, in Dr. Kyprianou's experience, consistently tend to have low peripheral skin temperature (poor circulation) and low heart rate variability as well as heart rate variability not in sync with the breathing. I've had family members try using my thermometer for skin temp (hands or feet) and my heart rate variability software. While they don't always come in at parasympathetic mode, they typically can get their peripheral temperature right up and their heart rate variability stable within 5 minutes max. In contrast, I've known several POTS patients, and both of these things are a struggle for them and starting out, require intense concentration and quiet. This study found POTS patients show sympathetic abnormalities. If you look up sympathetic activity, you'll see it is being researched in relation to all sorts of diseases. For example, a very common phenomenon, stress related fatigue, is attributed to the sympathetic over activity that comes with being stressed compared to not being stressed. My understanding (I am clarifying at my follow up visit -- please understand I'm not speaking for her) is Dr. Kyprianou believes POTS is caused by sympathetic overactivity. It is my personal theory that sympathetic overactivity contributes to a majority of our symptoms, but is not the root cause. I think the POTS triggers sympathetic overactivity rather than the sympathetic overactivity triggering the POTS. Overtime, all of the time spent in sympathetic mode with stress hormones releasing, digestion not being at its best, and not enough in parasympathetic mode with the good stuff releasing adds up. To me, it makes sense our body would go into sympathetic mode in response to constant issues with blood pressure, heart rate, and circulation and it would stay in that mode since any position change triggers it. It also a fact a well-behaved heart increases in rate as we inhale, and decreases when we exhale. With POTS, it kind of just does what it wants. Actually, it is my belief my heart is working its butt off and it isn't beating with my inhales/exhales on its own because it has more important things to worry about. The really neat thing is, since we can control our breathing, and we have built in mechanisms in our brain to repeat behaviors that reward us, we can teach our heart to respond as nature intended to our inhales and exhales. The "reward" is given by being hooked up to heart rate variability software and seeing our score go up rather than down. There are some days, where I am just too symptomatic and no amount of my score going up helps my heart get with it, but most days, it does! Check out Heartmath's emWave software if you're interested in learning more on that. You're welcome for my thoughts and sorry for this last post kind of going off of the main topic. I like to share every single thing I learn in hopes it can help someone else gain from my time and effort put into various treatments! It is my hope fewer people are coming to the site because they are feeling well and are out living life.

It makes sense to me certain symptoms persists even after lying down but the name makes it seems this wouldn't be the case (I prefer to just say a type of dysautonomia called POTS). It is sort of like how it hurts where you got punched even after the actual punching part is over.

They also make special gloves just for putting on stockings.

I also have low BP. It tends to be in the 90s on top. There's no way I'd be able to take a beta blocker if I didn't also take Midodrine! After I couldn't get my BP controlled with just sodium, we added Midodrine. A few months after that, the beta blocker was added.

I just wanted to put in for a positive experience with salt/fluid loading. For me, a fairly high sodium diet has been really helpful for me as has fluid loading. I don't bloat from it or have anything except less lightheadedness and controlled hypotension. I never leave the house without my little can of tomato juice in my purse for if I start getting symptomatic.

Which blood pressure medication do you use?

I just thought I'd throw in I have had gatsritis and suspected ulcers, but when they've done the endo/colonoscopies, there is only inflammation. I don't have IBS or Crohn's (do have celiac) so we seem to be in different boats sort of. I believe the root of my hyperadrenergic POTS is probably rooted in something autoimmune and my body probably overreacts to things normal people's wouldn't and that include my stomach reacting to triggers such as acids. A change I have made is I used to drink a pint of tomato juice first thing in the morning for the sodium, now I drink broth since it isn't as acidic. I don't take ibuprofen on an empty stomach... stuff like that to help my body help itself. I took a brief journal article providing an overview of POTS to my gastro. I just said, "I have a type of dysautonomia called POTS. It is complicated to explain so I figured it'd be easier to just bring you this." I also explained my history of nausea, vomiting, and gastroparesis. She read the abstract and skimmed the article and seemed to instantly understand the types of symptoms I'd have with my ANS not functioning correctly. So, while she didn't shock me with POTS know-how or anything like that, she was open to reading my article, learning about my condition, and considering how a malfunctioning ANS could impact my GI system. That's all I expect from my non-POTS specialists and anything above that is just the frosting on the cake!

Thanks!

Here's my understanding of it... Having any sort of virus or infection makes all of my symptoms worse. This makes sense because the ANS has control over the immune system, so ANS resources that may normally be used to help out with heart rate are being used to put the immune system into action against a pathogen. Not that our POTSie bodies do that impressive of a job managing our heart rate to begin with... Also, in an otherwise healthy person, illness puts the body in sympathetic mode more than when there is no a virus/infection/injury present. This is because the body views the illness as a threat. The body prefers parasympathetic mode because this is when digestion is at its best, "good" chemicals are released by the brain, the immune system does its thing, circulation is flowing away, your heart tends to work more in sync with the breathing the way nature intended, cortisol (stress hormone which hinders healing) isn't being constantly released... In a healthy person, when the body realizes there isn't a threat, it switches back over to parasympathetic mode because, like I said, this is when healing and optimum functioning for day-to-day life is at its best. As people with dysautonomia, our bodies tend to be in sympathetic more often than not and this what causes many of our symptoms and why symptoms are spread out across so many body systems. Our bodies tend to not switch over to parasympathetic often or very easily. When we get a routine illness such as a cold, our bodies are pushed even further down the sympathetic "hole", exasperating most of our symptoms. If you're interested, one way to help your body relax (outside of eating right and plenty of sleep) since it has trouble doing it on its own when it is feeling attacked from a cold on top of dysautonomia, is diaphragmatic breathing. Breathe in and out through your nose gently -- no big forced breathes through an "o" shaped mouth. If your cold won't allow using your nose, your mouth will suffice. A good starting place for most people is in for 4, hold for 2, out for 6. Put one hand on your chest and one on your belly. Only the one on your belly should move. Practice 20 minutes in a dim, quiet room without distractions. Chest breathing is a sign to your body to be alert, diaphragmatic is a sign to your body it is okay to relax. If you look at newborn babies, they breathe mostly through using their diaphragm. As we age and experience the stresses of life, we tend to become chest breathers no matter what is going on in our environment. We can use this built in mechanism to our advantage to force the body to relax.

Wow wonderful news about the lab. My fiancé went to pick up the container for me. When the receptionist told the lab techs my name, he overheard them saying, "it's the one that needs sent frozen and kept chilled -- So-and-so was on the phone a ton yesterday about it." They then made sure my fiancé understood the importance of me keeping the container in the fridge during collection and transporting it in a cooler. This is the Quest Diagnostics lab in Yorkville IL. My doctor is having me go directly through them rather than mess with transportation ourselves.

Welcome!

It is such a tough decision! I think I would call and see if they do all of the same testing at the Arizona clinic as the Minnesota clinic. Is neuropathy an issue or suspected issue for you? If it is and they don't have the thermoregulatory sweat test at the Arizona clinic, that may be something to really consider as it can help with detection of small fiber peripheral neuropathy in a way a QSART cannot. Here is a complete listing of the testing I had done at Mayo Rochester from my blog: http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/ The gastric emptying study and consultation with an endocrinologist were specific to my case (gastroparesis/thyroid nodules), but the other ones are what you would be booked with when making an appointment with the autonomic clinic for POTS.