Lethargic Smiles

My older sister developed POTS as a teenager and outgrew it in her early twenties. At that time they did not know what we know now about POTS, so she was told she had severe depression and a major anxiety disorder. When she was diagnosed with POTS (late 90s) they said it wasn't a big deal and just to eat extra salt. Looking back it is pretty clear she had a bad case of POTS. She couldn't stand to quickly or she would faint, she hardly got out of bed... She was only treating what she thought was depression/anxiety, not POTS, and still got better. So her improvement story did not include exercise, beta blockers, blood pressure medication, or any of that... Just a young woman trying to overcome what she believed to be anxiety. She now works 1.5 jobs, both on her feet without a problem.

I know how scary this is. Suggestions... - If you can, lay in the backseat of the car on the way there. If you can't do that, recline your seat and prop your feet up. - Make sure you hydrate plenty tonight and tomorrow. - compression stockings - Is sitting cross legged at the funeral home and option? I know it may be a bit strange, but not more strange than passing out! - I think after you pay your respects, just sit somewhere. When people come to talk to you, inevitably (at least in my wake experiences) what is going on in your life will come up. Just mention you are having health issues with your ANS and your doctor has forbid you from standing more than 5 minutes at a time because you could faint. If they ask more, explain, if they don't, don't. - I don't think someone sitting at a wake is that unusual. If anything, people with just think you are reflecting. - At an appropriate time, let someone who is close to the deceased know you are so sorry for their loss and you are currently having health issues and your doctor said you cannot come to the funeral, but you wish you could. You could phrase it like, "I am so sorry for your loss. I wanted to let you know I won't be at the funeral tomorrow due to health issues. I wish I could be there to say my final goodbye, but my doctor will not allow it. I hope "insert deceased name" would understand." That's not whining in my opinion since the focus is on others feelings, not yourself. - Have your husband go start the car and cool it off, then go take a breather from the wake and lay flat.

I've heard of the tilt being anywhere from 60 to 90 degrees depending on the center.

This is all so interesting. My situation of not feeling as though my breaths are adequate but my oxygen levels being fine seems to be a common issue. Before I share my thoughts, I am going to tell you my brain is foggy so please be forgiving. Chaos -- That is all really interesting. Thank you for sharing! It sounds like you are on to something with your abnormal O2/CO2 ratios... too bad they cannot identify a cause. Freaked -- Are you saying that the rapid/inefficient breathing is the body's response to tachycardia? My understanding of breathing in relation to heart rate when someone has tachycardia is different than this, but I may be mistaken as I didn't spend a ton of time on researching it. It does make sense they would be related and I do notice many people with POTS being told their rate of breathing indicates they are hyperventilating. TCP -- I'm so sorry you have been abandoned by specialists. I found many specialists in my area just didn't know what to do with me, or they would act like they did and I would find out their recommendations were complete wrong... It was such a frustrating experience. Ever since I went to Mayo Clinic, my PCP helps me follow the plan given to me by Mayo doctors. When we hit a road block or are unsure of if a symptom is due to POTS or how a medication will effect my POTS, we give them a call. I like that she isn't too proud to reach out for guidance. Ashley -- It took a long time for people to understand what is wrong with me and I can relate to your frustration. There were times when someone would suggest exercise, I wanted to sarcastically say, "Really!? What a WONDERFUL idea, I've never thought of that!!" and slap them. I stuck it out, and now people in my life tend to understand why I cannot exercise in the same way as everyone else. I explain how my body is stressed by being upright, so it is important all exercise is horizontal. I explain how my body is fatigued from the rapid heart rate and battling gravity all day and all that jazz... The ultimate silencer has been that ever since I went to Mayo Clinic, I can say that and people kind of shut up because most people sort of bow down to Mayo. I'm happy to report that the instances of people suggesting interventions has been much less since I started my blog. My whole family (extended family included) reads it and takes it to heart. At our last family function, everyone was scolding me to lay down and not be in the heat too long. I am really lucky (not to rub it in!). I wonder what supplements help support our cells using oxygen properly? I've noticed a difference since I started using d-ribose. It is said to help our body recycle ATP (the fuel source for our cells) more efficiently. I have no idea if that has anything to do with our cells utilizing oxygen. As you may or may not have seen other places on the forum, I am going to The POTS Treatment Center (in 2 weeks!!) where they focus on breathing exercises to control the ANS. I will spend a couple hours a day for two weeks hooked up to machines measuring oxygen levels, muscle tension, pulse, blood pressure, and maybe brain waves... I wonder if breathing differently can impact how our cells are able to utilize oxygen? How does one go about finding out their CO2 levels?

I just wanted to add that I get this too and was also put on Tramadol! My HIDA showed a very low ejection fraction, but still high enough that it was left up to me on whether I wanted my gallbladder out or not. I voted no. I don't have much wisdom on helping this problem other than small meals and digestive enzymes to ease digestion... but I just wanted you to know you're not alone.

I have noticed it often seems like I cannot get a deep enough of a breath. It is almost as though I am breathing through a straw. However, my oxygen levels are amazing! They are always above 98%. The other day, I was symptomatic and dehydrated enough for an IV of saline, and they were 100%! I was shocked and am wondering about your guys experiences.

My PCP said she thinks it would be worthwhile to see a hematologist as they are good at doing work ups for lymph nodes. In the meantime, she has my symptoms on her mind and is racking her brain for tests to run (outside of the stuff the gastro will do). I am amazed this has never been recommended to me before!

From what I understand, for a healthy person, the tilt table would hardly effect their pulse/blood pressure for long at all because the body is laying at an angle and supported by the table. So, in short, it's less stressful on the body than standing in "real" life. I have more dramatic heart rate changes doing a poor mans TTT than I do on the real deal. Someone correct me if I'm wrong. I just wanted to answer with what I've read since no one has responded. That is a VERY low blood pressure you got when you feel faint. This may be why they don't want to give beta blockers. Beta blockers drop blood pressure. I couldn't take them if it weren't from Midodrine, but my blood pressure doesn't tend to go below the 80s on top when I am experiencing hypotension, so my case isn't nearly as severe.

I think I'll write a post about this, but recently I've started wearing a heart rate monitor on days I will be stressing out my body or "bad" days. I shared with my family how, while I can feel sick even with a mild heart rate, my heart rate is often a good indicator of how my body is feeling. I find them frequently looking at my watch to see my pulse. It has been very educational for them... Kind of like biofeedback for the family. For people who doubt POTS, the heart rate monitor could provide objective proof of the stress being upright puts on our bodies. I've never been like "LOOK!!", they just asked about the hideous huge sports watch, I explained, and they starting looking at it sometimes. I don't think anyone should have to prove their illness or the legitimacy of their symptoms to anyone, let alone loved ones, but I know it would be really hard on me if people in my life didn't understand.

Thanks for keeping your eye out Lynnie. They checked my stomach for h pylori, but I believe that is it. Katy, you're right. I just emailed my PCP who always runs a lot of tests for me prior to referring me to any other doctor to let her know the latest. She has always been understanding of how difficult it can be for me to come into the office amd works with me for free via email when it is viable. She loves learning new things and reading the latest research -- that type of doctor. I will mention bacterial infections when she emails me back. The gastro is great and aware of how Dysautonomia causes so many GI type symptoms. I'm hoping this is a sign she is a thinker and will have some ideas... Between the two of them, maybe something can be figured out. That is horrible about your friend. I don't know how insurance can get away without paying if its the only option for treatment. Poor thing!

You guys are great! Katy -- Thank you! I also often use Wikipedia as a starting place for research. Maia -- I don't eat gluten, soy, dairy, egg, and only eat meat when I really crave it (about once every 6 weeks or so). I also limit any sort of refined grains and reserve them as treats. Thank you for the suggestion. It has been very helpful for bloating, regularity, and such, but not helpful at all for the abdominal pain and lymph node issues. Lynnie -- The lymph nodes swell at least three times a week during "good" spurts and are constantly swollen during flares. It just started with swollen throat lymph nodes following mono. After that, anytime I'd overdo it, my throat lymph nodes would swell. So during flares, I tend to get a few hours of peace and as the day goes on, they become more and more swollen. It's not major, deforming swelling, but it is definitely there and is able to be felt. Over time, the armpit lymph nodes joined the party. At times, I cannot wear anything except loose clothing because the pressure on my armpits is painful. I've been checked for tons of infectious diseases, immune problems, and even chronic epstein barr virus... nothing! I agree gut health is so important. Currently, I take a quality multi-strain pro-biotic, ginger, and occasionally take enzymes for more difficult to digest foods. I eat small meals and have eliminated foods I've been shown to be IgG intolerant to. I don't eat acidic foods (tomato for example) on an empty stomach and combine it with foods to balance out acidity. I limit simple carbs. Are there are other things I should be doing? I really hope you are able to resolve your GI issues! You've got enough on your plate already. I'm hoping to come up with a thing or two I should ask my doctor to test for. I know that is her job but you know how we crazy patients are. I'm pretty bummed this is hitting me right now because I leave for Dallas to go to The POTS Treatment Center in two and a half weeks and will be there for two weeks. Thank you everyone for helping me brainstorm -- keep the ideas coming!

E Soskis, your right about how the lymph nodes being swollen is a clear sign that needs looked into. I have just gotten so used to them being swollen off and on for 5.5 years now that I quit even thinking much of it. I have seen infectious disease doctors, immunologists, internal medicine doctors, gastros, integrative medicine, rheumatologist... Sigh. Over the past 18 months, I've had liver/gallbladder/pancreas tests. I've had a full abdominal ultrasound, a CT scan, and a gallbladder test (I have a low ejection rate but its still good enough to keep). The GI issues going along with the lymph node symptoms is relatively new and I am guessing a sign that whatever the root cause is has progressed one step further. I plan to really press the gastro when I go in 2 weeks. Thank you for lighting the fire.

I'm sorry your life is consumed by health issues right now. Take care of you too!

Hey Katy, what would count as being thoroughly evaluated? I've had an irritable bowel blood test as well as a colonoscopy and endoscopy. My Mom has ulcerative colitis that was missed by 2 colonoscopies, but the doctor who did mine is the one who found hers and was aware of this going in. Hope, I feel the same way. Ever since I got dysautonomia following mono in winter 2008, I've had issues with swollen lymph nodes. The ab pain started in fall 2011. I was not diagnosed with dysautonomia until 2012. The bleeding started in winter 2013. The bleeding and severe abdominal pain now coinciding with the lymph node flare ups each time I have gotten the flare ups this year just makes me nervous. I am fairly certain the bleeding is a hemmorrhoid issue since it was red rather than dark like it is when it comes from higher in the GI tract. The GI office called back and suggested Prevacid until they can fit me in in 2 weeks. This was despite me explaining my main concern being the lymph nodes and ab pain coinciding... And the ab pain mostly being on the lower edge of the upper right quadrant. The nurse was good intentioned and said if the pain is too severe or the bleeding excessive to call back. It did not seem as though she had consulted the doctor. Good intentions don't make me any less frustrated...

I was just wanting to get people's thoughts while I wait to hear from my doctor. Short Version My POTS gets terrible when whatever this problem is pops up. Something causes bleeding in my upper and lower GI tract and my lymph system goes crazy over it. I have a history of small inner hemorrhoids and suspected bleeding ulcers. Thoughts? Long Version The past few weeks, I've felt really sick. My lymph nodes have been swollen in my armpits and throat. I started getting stabbing abdominal pain in the upper quadrants of my stomach. It isn't effected by position, how much I eat, or what I eat. I ignored it as we all know we get all sorts of random symptoms from POTS flares. Well, today there was blood in my stool. A few months ago, I had issues with bleeding in the GI tract. It started with a worsening of POTS symptoms, abdominal pain and blood was found via an occult stool test, indicated the bleeding was high up in the GI tract. I was started on a proton pump inhibitor while I waited to get into a GI. A few weeks later, blood was visible in my stool. I became mildly anemic. By the time I had the colonoscopy/endoscopy, the bleeding was resolved. The doctor found a few small inner hemorrhoids and that is it. No ulcers. The problem was deemed to have been bleeding ulcers that healed. I was encouraged to not use NSAID pain relievers, sit up after meals, and avoid acidic food on an empty stomach. I've had on and off abdominal pain for 2 years, but the bleeding issue is relatively new. The blood in my stool could just be hemorrhoids. Whatever is going on really makes my lymph system crazy. Any thoughts or experiences would be appreciated!

I haven't used these specific oils, but I am into using essential oils. Essentials are very concentrated so a carrier oil is a good idea. To give you an idea of how concentrated... it takes about five pounds of leaved to make one ounce of oil. How many drops you should use will vary based on the essential oil and what you are using it for, so I'd suggest doing some searching. My favorite carrier oils are sweet almond and grape seed. I also like coconut oil. It being solid at room temperature and melting upon skin contact makes it nice for topical use. You will need to melt coconut oil to add essential oil to it. Don't add the essential oil until after heating the coconut oil and only heat it enough to make it liquid.

Go you! I feel guilty a lot and every member of my family (siblings/in-laws/parents/fiancé) are always saying I shouldn't feel guilty. I don't know how I'd cope without that reassurance and you are really strong for vowing to not feel guilty. I found that once I wrote my blog about POTS, everyone in my extended family was able to understand what it is I go through and how I put on a happy face. They now get that (generally) they cannot guess how I am feeling by just looking at me or observing what I've been up to the past week.

I had this done at Mayo Clinic outpatient. I think any doctors office would have the necessary tools to do this, it'd just be a matter of them knowing exactly how to do it. Like Alex said, it's important they put in an IV, leave you in dark quiet room for 30 minutes, quietly come in and draw blood, let you stand/walk around 10 minutes and take more blood.

I just wanted to throw Sjorgens Syndrome out there as something for people with Dysautonomia, dry eyes, and vision disturbances to look into. Especially look into it if you also have muscle/joint pain without swelling or swallowing issues. I'm no expert on Sjorgens, I just know someone with POTS who has it.

This is an old thread but I wanted to throw what I do out there. My first line of defense is a ginger capsule or two (550mg each) since they have way more ginger than ginger ale while my second line of defense is Phenegran. I have a standing order for IV fluids so I can just go to the hospital any time and get them. If I know I'm going to have a bad nausea day, I just go get them rather than letting myself get dehydrated. Dehydration always makes me more nauseous.. During the day, I call and make an appointment. They get me in right away. Outside of 8-6 I have to go through the ER to get fluids but still do not have to see a doctor since I have standing orders. Honestly, unless I'm going to actually throw up, I prefer the IV route over Phenegran-head followed by a 36 hour Phenegran hangover! Like someone else said, less fluid at meals helps. The gastro at Mayo recommended this for what he called "cyclic vomiting"... Although my vomiting is fairly predictable based on what kind of Dysautonomia day I'm having. Anyway, point is I stopped drinking with my meals and the nausea is more manageable.

I think it's because a lot of the medications we take are just band aids for symptoms of a larger problem. The root cause of all the symptoms is likely to still be there even if we've managed to cover it up with medications.

Aw sorry for the long wait for the doctor jkoconne I hope they have a cancellation and can get you in earlier.

Good suggestion looneymom. I had the basic test as well as the DNA test -- expensive but worth it to be able to rule out something! I highly recommend the DNA test to determine the virus levels of EBV in your system.

I got my POTS after a bad bout of mono. I haven't stopped getting swollen glands since I came down with mono. When I do too much or get sick, I get swollen glands in my throat, armpits, and abdomen. The throat lymph node issue is pretty chronic. The armpit issue is my body telling me to slow down. Sometimes it is bad enough that I can hardly stand clothing touching my armpits or laying my arms against my body. I spent months trying to figure out the cause of my abdomen pain when those lymph nodes first started swelling. No doctor thought of lymph nodes until it was finally gone, but now he feels that is probably what it was. It would get worse when I ate but wasn't dependent on the type of food. I'm guessing just the added pressure on the lymph nodes from my stomach being more full was causing the pain. I still get this intermittently and it always comes after the throat and armpit lymph nodes swell. When the pain becomes too much, or the flare up lasts more than a month, I do a round of steroids. 2 weeks titrated works best for me. We just have to be careful using steroids and they cannot become a frequently used tool. However, two or three times a year hasn't hurt me so far and has allowed me to beat some pretty bad flares that involved swollen lymph nodes.

I can't speak to other clinics that may be similar to this one. Biofeedback is not an uncommon therapy. What is uncommon is Dr Kyprianou being a physiopsychologist who conducts biofeedback on a very regular basis (I believe 3 patients per week) for POTS. As with any specialty area in the medical field, finding a doctor who understands POTS is important. I can confirm the cost is $5,000 for 2 weeks. The cost includes equipment to do biofeedback at home following the 2 week accelerated program.