Kyler

Thank You guys. You are helpful as usual.

New doctor prescribed DDAVP for my son's worsening POTS symptoms and I have some questions before we start it. I read everything on here in the archives but the most recent discussions are from 2012. I understand the whole fluid sodium balance thing. We will be starting with 0.2 mg during the day on Monday. Kyler's symptoms have gotten worse and he had to go completely homebound for school and he has been having excessive urinating as one of his many symptoms. My question is if you eat high sodium foods steadily throughout the day can you still drink small amounts of liquid? My son currently takes in about 8000 mg/day of sodium. The doctor said only a few sips of liquid for 8 hrs after taking it. That's not a problem at night but during the day it might not go well. For those who have taken it or are currently taking it how much fluid (estimated ounces per day) do you take in? My other concern is that if this makes his body "normal" while he is on it then what will his other meds do to him while he is on ddavp bc he take a lot of meds.to try and have normal vital signs. I am worried that for instance that with lots of extra fluid in his system that the 60 mgs if midodrine may hurt him by raising his bp too high. I plan monitoring him closely but I am SUPER freaked out by this one. We are only trying because he has basically become house bound at this point. Any experiences or tips would be appreciated. I'm so glad that I have this wonderful resource. Totally love you all!!!

Thank you

Kyler (just turned 16) has to get his wisdom teeth out. I am assumong that there is some really awesome article that someone has to help explain POTS to the surgeon and any special considerations for the anesthesia. I was also wondering if we should try and skip general and just shoot for him getting local numbing (that's how I had mine removed cuz I was afraid of dying under general). Please share your experiences and articles with this if you have been thru it.

The article that POTLUCK posted said that it increases vasodilation: "Improved vasodilation has been demonstrated at an oral dose of 500 mg of vitamin C daily" It seems that would go against the goal of vasoconstriction with midodrine for people that have pooling. Based on this article it also seems like it would help in some ways but with Kyler still having purple feet when he takes 60mg of midodrine a day I don't want to risk any extra dilation.

My son has had his potassium and magnesium checked several times with no change and he can't take vitamins but everyone is different.

We started 30 in the am and 30 in the pm and it was too much - sent us to the hospital due to severe chest pain, muscle spasms, and low BP and low HR. It really just dropped his HR too much for him - he also takes a beta blocker with it. We waited a year and when his symptms increased we tried it again at 15 and 7.5 and that is a magic number for him despite being 6'3 and 243 lbs. It really helped with his constipation and nausea.

I am a medic and what I learned from my training and a lengthy lesson from my son's POTS doctor about being orthostatic and shock is that the human body has methods of compensating for malfunctions, illnesses, and injuries.He said that POTS pt.s are basically in a state of compensated shock every time they stand up. All parts of the nervous system are involved and it really explains the mechanisms involved in POTS (considering it an illness) . Here is an example. If you get hurt and you are bleeding heavily your body senses it and jumps into action. The main things that need blood flow in this order are #1- your brain, #2-your guts (organs and intestines),#3- your skin (it's an organ too). So when your brain senses that it is running low on blood (from blood loss, severe dehydration, blood pooling in your extremities from POTS, extreme vasodilation etc.) it freaks out and kicks out Epinephrine (adrenaline) to #1 - increase your heartrate in order to get more blood/oxygen to your brain,#2- to constrict your blood vessel (epinephrine is a natural vasopressor). One of the reasons that POTS patients are often pale and have cold sweaty hands or feet is because another thing your brain does in this situation is that it "steals" most of the blood from your skin to use in your brain and guts - this is called shunting from your extremities - unfortunately with POTS this isn't alll that effective because the autonomic nervous system doesn't allow your vessels to constrict enough to fix the problem . So this initial burst of adrenaline is meant to increase your blood pressure which is why it will initially drop when you stand but then can spike as the adrenalin kicks in. For some people the high HR maintains this BP and others can not maintain the BP despite their HR. The problem with super high HR is that your heart doesn't have time to fully refill before it contracts again so your brain may loose needed blood as a result and after a certain point you pass out so your brain gets the blood/oxygen that it needs - it's a catch 22. This is where beta blockers can both help or hurt. Your HR MUST increase to compensate so if you block it too much (or get an ablation) then you pass out but if you under treat it you have other problems and you still pass out. It was tough to find the perfect dose for my son - He takes 2.5 mg of betaxolol (a 1/4 os a pill) in the PM and 5 mg (half) in the AM. The doctor origanally prescribed 5 mg in PM and 10 in the AM but it dropped his HR too much which in turn almost made him pass out. Along with the doc we tweaked it to it's current level - his sitting HR has to stay above 90 and his standing HR has to stay above 120 or he feels faint - without the bb it would go above 200 which is WAY too high. A POTS specialist would understand this whereas a normal doc feels that everyone should have the same HR parameters so some people are debilitated by too much beta blocking. Back to the whole blood flow thing. So this is where some other POTS symptoms come in to play. Your body has to steal blood flow from your stomach and intestines sometimes because your other organs (liver, kidneys) need it more so you end up with nausea and other various GI symptoms because of the disruption no matter how brief. Every part of your body is affected by the decreased blood flow and increased adrenalin issues. There are obviously other affects that a malfunctioning autonomic nervous system has but the whole high HR part is mainly due to the lack of blood flow tothe brain caused by venous pooling. there are articles that explain this all over the net and in many medical books. You can read about compensated and decompensated (when your BP starts to drop) shock as well as POTs and put the 2 together to help understand it. The hardest part is that every human body compensates and respond differently. My son's doctor told me that testosterone plays a huge part in the fact that men can compensate WAY better than women because progesterone is a potent vaso dialator. He said that my son has severe POTS so he can only become upright because he is a boy - he would be bed ridden if he was female - scary!!! My son's vitals look almos exactly like yours when he is under medicated. Pulse pressure usually narrow when there is some external force compressing the ventricle and keeping it from filling - this can occur from a blow to the chest and cause a condition called pericardial tamponade. I asked my son's doc about the same thing bc it freaked me out and he told me that the reason in POTS i because there is not enough blood or time when the blood is pooling and the HR is increased to adequetaly fill the ventrilcle so it mimics tamponade. He showed me on echocardiogram that while my son was lying flat his left ventricle was the size of a golf ball when it filled and then he stood up and it was the size of a grape at it's fullest. I hope that this helps - sorry it's so long. Please PM me if you have any more questions. Serena

My son is 15 and has been taking it (0.1 mg) for 2 years. He has grown 2 inches since then. He is 6'3 and weghs in at 243 lbs. It doesn't appear to have stunted his growth. I was told by a doctor that if something does stunt your growth it doesn't matter because eventually your body will acheive it's genetically pre determined height even if it just takes a bit longer due to something like not having food or some other reason. My son had no side affects. I was worried when I read the brochure from the pharmacy about the medication because it sounded scary but it has been very helpful in making my son feel better and we didn't notice anything but improvement. With all of the new meds. that my son started we decided to start with half of what the doctor said (unless it is time release - florinef is not). This has worked well and we found that we had to stay at a lesser dose on some of them but the full dose of Florinef is great for him. good luck. Have you been to a POTS doctor for evaluation??

I didn't try him because it says he sees adults. Does he see adolescents? Have you had a good experience with him?

Your best bet is to only exercise in a sitting or laying position until you can tolerate standing. My son uses a recumbent bike/ rower combo - it's great. We also saved up some money and bought him a real recumbent trike for use outside in cool weather. The design is suck that he is almost laying on his back when he rides it. He just has to rest and let his heart rate go down BEFORE he stands up and gets off of it.

My son takes 10 mg of Midodrine every 2 hours which usually equals 60 - 70 mg/day. He definitely has a better appetite when he takes it. I assume that it's because he has more blood flow to his gut when he remembers to take it so it decreases his nausea significantly. He has to take it so often becasue the doc says that his young metabolism is super fast and kicks it out. He is 6'3 and weighs 243 lbs. When the pharmacy messed up his beta blocker he was miserable and his HR wouldn't go below 160 each day and he lost his appetite even with Midodrine and he lost 20 lbs in 1 month til we figured it out. That's the only weight loss he has ever had. He has permanent goose bumps but doesn't complain of any other side affects.

I am so sorry that you and your daughter have to go thru this - the illness itself is bad enough but having to deal with ignorance from the people that are supposed to help you and her thru this just adds insult to injury. It is clear that they are either very uneducated on their responsibilities OR they are playing dumb to try and get out of helping. Depending on how severely this affects your daughters ability to learn, she may qualify for special education. I had my son tested early on because his SOL scores and grades dropped like a ton of bricks in 6th grade and he was diagnosed on the last week of school that year a age 12. At the beggining of the next school year we started the testing process and the results were shocking. His "verbal comprehension' scores were near genius levels and his "working memory score" was borderline mental retardation level. This qualified him as special eduction under OHI (other health impairment) and we have been set ever since - the hjave to do whatever you ask for to educate her properly if you get this qualification. My son gets picked uo at 11am and goes to school for one block (90 mins.) and lunch for the socialization and they bring him home at 1:30. He does hios other classes with a homebound teacher and the SCHOOL bought him Rosetta stone to do spanish. He is on track for a normal advanced studies diploma. They CAN NOT by law deny you a 504 or an IEP if you have a good doctors note that describes the illness, how it affects her ability to learn, and some of the accomadations that would help her. If they do you can get a lawyer that will help you own the school and then you can name it after your daughter and fire all the idiots that discriminated against her - sorry this just makes me so mad. They are violating the law by not giving you what you need for her and you need to let them know that you know that. We are so lucky that we have had very few problems but I am sad for those who have to struggle to get what they need. You definitely need to start by contacting the Head of the special education department for the entire school system. If you don't get results then go higher and higher even if you end up going all the way up the local government - they will listen eventually. Feel free to PM me - I would love to help any way that I can. Good luck and hang in there. Serena

I'm searching for a good Doctor for a 16 yr. Old near Hanover PA. She is not officially diagnosed yet. I called the docs listed on dinet.org and had no luck. Any ideas would be appreciated. They are in central PA so Baltimore isn't too far but im afraid that my sons Dr. In Reston Va will be too far. Thanks in advance. Serena

My son is 14 and headaches were one of his first signs of POTS 2 years before we knew what it was (he was 9 at the tiem). We called them "motion headaches" because at first it was only when he stood up he would get a shooting intense pain that would cause him to grab his head and yell out but it would resolve after he was up fpr a few minutes and then start all over the next tiem he stood up after sitting. These progressed into semi daily headaches that are sometimes from standing but sometimes constant. The headaches usually go away with tylenol and motrin taken together or by laying down. Hydration really helps too. I can identify with what you said about the Topomax - my husband took it for migrains and had to go off of it after 2 weeks of "sadness" for no reason as he described it - he didn't smile at all for almost 2 weeks - it was terrible. Now he takes low dose amytriptaline for migraine prevention and it works most of the time. Another thought that some others have mentioned is dietary causes. My sister is lactose intolerant and her only symptoms are a headache and getting very angry for no reason - no GI affects at all. My best friend gets severe migraines from aspartame or caffiene and it only has to be a tiny amount. You could try an elimination diet to try and figure out if food causes the headaches at all. Good luck - I feel your pain - when your child suffers you suffer with them. Hang in there.

Thermo tabs made Kyler very nauseated and gave him diarrhea. They work for some people but the main problem is that they pull the fluid that you drink into your intestines faster than it can be absorbed into your blood stream where you want it - If it can get into your blood stream water follows it and creates the volume expansion that helps with POTS symptoms. He eats a lot of high sodium foods instead and that has helped a lot. Midodrine has helped Kyler the most with his nausea. He now takes 10 mgs every 2 hours and can take 15 mgs if he is feeling bad. He has goose bumps all the time but no other negative side effets - it really helps the major blood pooling that he has. The blood pooling steals blood from his intestines and that causes his nausea.

My son's doctor has an all inclusive take on this. He explained that the symptoms of POTS are all the same as FM and CFS. Just like any illness some people have all of the POTS symptoms and some only have a few - either way it all relates to the clinical definition of POTS. My son has FM and CFS symtoms but his only DX is POTS. He also has GI problems due to the lack of proper blood flow to his intestines caused by the blood pooling in his extremities but he never sent him to a GI doctor - each time Kyler had a decline in his condition with increased nausea and abd. pain his POTS doctor adjusted his meds and fixed it. The all inclusive approach has saved Kyler from many unneccesary tests in my observation. In the beggining I thought that he needed to be tested for everything but his doctor works magic and makes everything make sense and proves his expertise with real results. Kyler is still sick but his quality of life is pretty good all things considered. I just wish that POTS would stay the same and not change every 2 months or every day for that matter - so annoying.

Just a word of caution - Vitamin water is SUPER yummy but it has lots of niacin in it. Niacin has a hidden effect of vaso dilation. Until a year ago G2 also had niacin in it. Niacin causes some people to flush really bad. It makes me feel like I'm going to catch on fire and I look like a beet for about an hour after I drink it. It makes my son flush as well but because of his POTS it made him vaso dilate and his BP dropped - scary and unexpected. Also beware of some broths - ramen broth has MSG in it and so do some of the others. Kyler gets about 8,000 mgs/day (by dr.'s order) mostly from foods. He hates to add salt but so many foods have a ton in it like mission brand flour tortilla shells have 630 mgs in 1. He loves a lunch meat wrap and just the piece of cheese has 200 mgs. in 1 slice. It takes close to an hour for the sodium to move thru your intestines and get absorbed and then pull the fluid into your vascular system to give you the volume expansion benefit so eating the sodium isn't a bad choice. We usually manage abot 2,000 mgs/ meal (he is a 6'3 teenage boy so he probably eats more volume than most). Good luck with whatever works for you just be careful of hidden things that can make you feel worse. It has been a learning experience for us. Serena

The reason I want to get him a scooter is to do activities this summer like going to museums and maybe an outdoor event or two if he can tolerate it. I also think that he will need it next year for school because the high school is much larger than the middle school - he is going to attempt 2 classes a day at school instead of just 1. He can only walk for 10 or 15 minutes at a time in a climate controlled area and even less above 75 degrees and he gets fatigued very easily no matter what the temp is. Unfortunately a regular wheel chair wears him out to push it himself and every parking lot or outdoor event is hilly around here - he is 14 but is 6'3 and weighs 220 lbs. he does not need a reclining chair but that would allow him to last longer I have a almost 2 yr. old and I am expecting in Nov. This makes outings very difficult and he craves some independence. I want him to have the closest to a normal childhood as he possibly can and his mobility makes this almost impossible even in air conditioning. Sam 76 - How did you get your insurance to cover it? Our insurance says that they will only cover it if you need it to perform daily functions for living inside your house - he doesn't need it for in the house. His doctor wrote on a regular perscription paper "scooter - medically needed" but I am pretty certain that they will deny it. I feel hopeless that they will even consider covering it and I am not sure how to even try and get it covered or if I should even try. Thank you for the input and advice. Please keep it coming. Serena

I want my son to take a multi vitamin but the last few we tried made him feel very bad. The best that I could come up with was that they all contained niacin and that makes me and him flush even at low doses. Any suggestions for niacin free vitamins.

I am going to get a scooter for my son but I am having a hard time picking the best one for us. The travel scoot is definitely the smallest and has really good reviews but is unable to go in grass or gravel due to the drive system - I am very upset because I love everything else about it. I am looking for the experience of others. We need a portable and small but durable and versatile scooter. You experiences would be greatly appreciated. Thank you in advance.

I wish so badly that you all could see my son's doctor. Dr. Abdallah is the most listening, caring, compassionate, and knowledgeable doctor that I have EVER met. He has been a miracle worker with my son. Every time something changes with his condition he knows exactly what it is and how to make it better or tolerable. If you can make a trip to Northern Virginia , I strongly recommend a visit - he will work with your PCP and you thru e-mails from afar as well. He has patients that live in Spain and other countries. He is a peds. cardio but he treats adults as well. The ONLY down side is that you have to wait a while in the office sometimes because he takes his time with every patient but that is what makes him so great. I want everyone to get a good doctor and feel better. Good luck.

Thank you all for your love and support. This is so difficult to deal with-I wish that it was me and not my son that had this. We were supposed to go to a cook out today at a lake and he had plans to stay in the water and play games inside in the ac if he felt bad but he went to his bf's bd party yesterday and he is too sick to do anything today - he didn't even participate in the sleepover part bc their house has wimpy AC. I wish that we could just live in Alaska every summer and here in the winter - maybe we will win the lottery. I feel like the good weeks are over until about late October but I am going to do my best to make them as good as they can be. Hoping and praying that everyone feels better. Thank you again for understanding and listening to my emotional rant.