The POTS Elevator Speech

I've found having a 60 second "elevator speech" about POTS can come in very helpful. I start by asking how much people know about the nervous system. Rarely does anyone know what it does other than that it involves nerves, but in the rare case that you're talking to a doctor you can skip a few steps and that way you don't sound like you're talking down to someone who knows about it already. Then I give a brief explanation of what the nervous system does focusing on the autonomic side. "Ok, so the nervous system basically controls everything your body does, the autonomic nervous system controls everything you don't think about. Thats what's broken with me, I have to think about all those things and control them myself with my treatments. Things like heart rate, blood pressure, digestion, temp regulation, immune system, and more. All that stuff doesn't work right when you have POTS." Usually this is met with faces of confusion and/or surprise. Then I explain some basics of how that effects me. "So when my heart rate is low I get chest pains, when my bp is low I pass out (a lot), when I eat I need to make sure I drink enough because the food doesn't always leave my stomach on its own." Here people usually ask how I control it all, so I explain some basics of my treatment plan. "I drink as much liquid and take in as much salt as possible. I take a handful of pills in morning and at night which control symptoms and help my heart rate and blood pressure. I avoid standing for long periods of time, can't push my body very much, and need to get at least 10 hours of sleep in order to avoid a flair up of symptoms."

I never know when I'm saying too much or too little, but I usually take cues from how much people are responding and what questions they ask. I personally would rather over explain than have people not understand what is wrong and think I'm just lazy or making things up. I hope this helps you out when you are explaining your condition to friends, that can be difficult and awkward for both sides of the conversation, so having some basic idea of how you want to explain it can help a lot in the long run.

I may not be there yet, but I'm closer than I was yesterday...

I keep trying to remind myself that no matter what I'm faced with, there is always hope that tomorrow will be better. I think its important to keep hope in your life. I'm not claiming that that is an original idea, of course its not, but it is important to remember. Sometimes when it seems like nothing is going my way I remind myself of all the things I'm blessed with and grateful for. I have a family that loves and supports me, I have food, shelter, a warm bed and access to medical treatment. I don't have a fatal disease, mine affects my quality of life rather than threatening to take it. I have a diagnosis, even if its not something I want to have, not know what was wrong with me was torture. And I have the little things.

My friends text me and message me on Facebook all the time which makes me smile. My puppies like to snuggle on my feet and beg for me to pet them. I got a new haircut (to hide all the fact that much of it has fallen out). I have endless hours of games on my iPhone. I have tons of nail polish to choose from for nail designs. I'm a guild master of a successful raiding guild on WoW. My sims just had twins. And tonight there may be snow. Its like the song goes, "I simply remember my favorite things, and then I don't feel so bad..."

Today I challenge you all, POTSies or not, write down your favorite things. The little things that make you smile that you may not think about often, but that make you smile when you do. When you're feeling down or bad, remember the things you have and the things you are grateful for...

And Daisey says hello... she wants to kiss your face.

Adventures in a backless gown...

Hello all,
I haven't been on for a week or so because I've been in the hospital. After seeing my cardiologist two weeks ago, we decided that my present treatment wasn't aggressive enough, and we wanted to try something new. I've been passing out again, and so what better time than the present to try something new. I got on the waiting list to see Dr. Grubb in Toledo, Ohio. He is said to be the best in the country, if not the world at treating POTS. The wait to get an appointment is over a year long, but from what I've heard, he's worth it. I also am filling out the paperwork to get a cardiac service dog. These dogs can actually sense when your blood pressure is dropping and tell you so you can sit down before you pass out! They can therefore also tell me to pull my car over if I'm driving and have a problem. How amazing is that!? My cardiologist has a patient who uses a cardiac service dog and LOVES it!. I hope I can get a dog soon, but again, the wait is 6 to 24 months to get one. It would be worth the wait to regain some independence and to once again feel completely safe leaving the house alone.
I went into the hospital to try a new treatment out that we had heard about from other POTS patients and read that some "super hospitals" were trying. The treatment is to give IV bolus treatments of saline or saltier saline. If it worked, the doctor could get a PIC line put in and I could have IV treatments everyday at home, but while it helped a slight bit, it wasn't anymore than if I had just pushed water and gatorade consumption like I usually do. It was a disappointing result, but at least we tried it. We were also running various other tests while I was in the hospital to rule out other possible causes for my worsening condition.
While I was in the hospital, my doctor tried doubling my atenolol (a beta blocker I take to lower my heart rate that also lowers my blood pressure) and my midodrine (a medication used to raise my blood pressure but doesn't effect my heart rate). Apparently this was a bad move, but I had asked him for more aggressive treatment options and thats what I got. The whole time I was in the hospital I was on a heart rate monitor, it was constantly tracking my heart and what it was doing. On my second day my heart rate went just below 50, which is very low for me. When I saw my doctor the next day I told him that I was scared about that and he said not to be nervous, that its when it goes below 40 that you should be nervous. Well wouldn't you know that the next night my heart rate went down to 38. I was so scared I couldn't sleep. I kept thinking about what would happen if my heart stopped or I had a seizure or a stroke or something. The next day, it dropped even more, 35. I called my nurse and told her I was scared. She said "Don't you worry, I have a crash cart right outside the door for you just in case, and I can have the crash team here in a matter of seconds if I need to. And if it goes below 30 I'll be calling them right away..." I sat there in my bed thinking "gee thanks, now I feel better..." I talked to my doctor later that day and we stopped the atenolol completely.
I was sent home to rest with the instructions to stay lying down as much as possible until the atenolol was out of my system. I've done just that. I've slept all the time since being in the hospital, I'm completely drained. Slowly the heart rate has risen as the atenolol has left by system, but now I have a new problem. My blood pressure has been bipolar again. It will go from 90/60 one minute to 160/90 the next. For those of you who don't have that happen, it makes you feel like you have a migraine, your heart is beating so hard it hurts, you are almost choking because the palpitations in your throat are so strong, you feel like you're going to pass out, you get hot flashes but you're cold, and you feel like just lifting your head takes a great deal of effort. Once everything evens out again, you feel like you just ran a 5k when dehydrated and hungover and then got hit by a train (not that I know what that's like, but I imagine it would feel like how I feel). Now I've been taken off my midodrine, so the only medication I'm on for my bp now is florinef, and I am on the maximum dose for that. We'll see what happens.
I had been hoping that the IV treatment would work. I am getting so tired of trying things and having them not work. This isn't easy. But I am even more tired of being cooped up in this body. I literally feel trapped in this body that isn't working, meanwhile I would give anything to be able to run or dance or ride a roller coaster or SCUBA dive. We need to find a way to get me better, everyday spent in bed is a day I will never get back and that kills me. I don't want to spend my life in bed, I want to live it. I want to get out of the house and run errands, I want to work, I want to go on day trips and not have to worry about POTS. I want to be able to leave the house alone and not fear what will happen if I pass out somewhere or have my bp drop and not be able to drive myself home. I want to not be scared of what my future will be, and because of that, I am trying to get better so I can control that. After all, I need to get better so I can change the world.

Translating doctor-speak

  Sorry the spacing of this is a bit off, the formatting was difficult to do. Hope it helps!

Term	Definition
Syncope	fainting
Hypotension	low blood pressure
Orthostatic	standing up or upright
Orthostatic Intolerance (OI)	the inability to tolerate the upright stance
Arrhythmia, arrhythmic	abnormal heart rhythm, irregular, too fast (tachycardia), too slow (bradycardia)
Ischemia, ischemic	too little blood
Long QT syndrome	an electrical heart abnormality that can produce dangerous arrhythmias
Cardiomyopathy	disease of the heart muscle
Myocardial infarction	heart attack
Cardiogenic	caused by the heart
Neurovascular, Neurally mediated, neurocardiogenic	caused by an interaction between the nervous system and the circulatory system
Vaso, Vascular, vasomotor	pertaining to blood vessels and their contraction
Vagus, vagal	a cranial nerve which when stimulated causes heart slowing (among other actions)
Autonomic nervous system	the part of the nervous system regulating many involuntary actions such as the heart rate and blood pressure
Venous	pertaining to veins
Right atrium	the part of the heart which receives blood returning from the body
Pooling	the collection of blood or body fluids in dependent portions of the body
Arterial resistance (vasoconstriction)	contraction of small arteries provides resistance against which our heart pumps blood. Different vessel resistances account for redistribution of blood throughout our body
Peripheral resistance	usually refers to arterial resistance in more peripheral parts of the body: e.g. limbs, skin
Vasodilation	arterial widening
Splanchnic vascular bed	liver, spleen and digestive tract: major venous reservoir
ARTERIAL BARORECEPTORS	pressure receptors intimately involved with the response to orthostasis
Cardiopulmonary reflexes	reflexes from the heart and lungs which affect vascular function; these are less involved with the normal response to orthostasis
renin-angiotensin-aldosterone, epinephrine, vasopressin	hormones involved with blood pressure regulation
cerebrovascular autoregulation	the ability of the brain to maintain its blood flow
Tilt Table test, head-up tilt, HUT	typically a motorized table with foot support which can take a patient from supine to upright or any angle in between. HUT is the de facto orthostatic stress test.
Hemodynamic	pertaining to the flow of blood
Asystole	heart stopping
Ventricle	pumping chamber of the heart
Contractile, contractility	pertaining to the intrinsic ability of the heart to contract
Hypovolemia	low blood volume
Dysautonomia, dysautonomic	malfunction of the autonomic nervous system
Familial dysautonomia	an inherited form of autonomic failure seen only in Ashkenazi Jews
Valsalva maneuver	a simple test of overall autonomic function
POTS	postural orthostatic tachycardia syndrome
Sympathetic, sympathetic nervous system	the part of the nervous system which when activated increases heart rate and blood pressure and causes vasoconstriction among other actions.
Parasympathetic, parasympathetic nervous system	in some sense the obverse of the sympathetic system, it slows the heart rate and may have effects on blood pressure among other non-circulatory actions. The vagus nerve and the glossopharyngeal nerve are importantly involved with these actions.

A Letter to Those Without POTS

I found this on http://notdoneliving.net/openletter/id.
I think it may be helpful for people who are having trouble explaining what invisible illness is like and how unpredictable it can be. 

By Ricky Buchanan

Dear Friends and Family,

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I dohave to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a lifewhile you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we wouldknow about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

POTS and contacts

I don't know if anyone else has contacts, but I found this and thought I'd share it since it explains what is going on with me. I've been having problems with too much protein in my contacts (this makes them dry and itchy). The eye doctor said that it just happens with some people. After trying different types of solutions, I finally went to the more expensive daily wear contacts, those worked out very well. Today I was researching POTS after passing out for the second time this week and stumbled upon some article that said that the autonomic nervous system controls the amount of protein in the eye. Maybe this explains my eye protein problem, if you have POTS and have the same problem maybe it will help you to know that it's likely a part of POTS. I rarely use contacts these days, but when I do, I use oasis dailies. I find they are much more comfortable, and I'd they get uncomfortable I don't feel guilty taking them out and throwing them away. Hope it helps!

POTS on youtube...

This is a mix of different videos about POTS and people's experience with it. Just like me writing my blog, there are people out there making video accounts of what is happening with them. Its amazing what the internet can do. I can't imagine having POTS without it.

The link wouldn't work to have the video box for these.

A POTS Perspective - YouTube

Mayo Clinic Interview on POTS

These are videos from the Mayo Clinic on teen onset POTS. This isn't the kind I have, I have adult onset (lasts longer usually), but I feel that the info could still be helpful for some of you out there who are teens. The info is the same for both types, with the exception of the prognosis. I hope it helps!