Lethargic Smiles

I am on birth control and didn't get my period for a year after my I hit POTS rock bottom. I am talking absolutely NOTHING. The first cycle, I attributed it to stress and weight loss. Depending on if I was in a vomiting phase or not, I weighed 10-15 pounds less than my previous "normal weight", but still at the lowest end of my healthy range. After the second cycle,again, I attributed it to stress and weight loss. I was upset my body seemed to feel it could not carry a baby. While it was correct -- carrying a baby would have been a disaster, it was a sad truth to face as a newly engaged woman. After the third cycle, I finally went to the doctor. She said if I missed one more, to come back and she would do an ultrasound of my stomach. Her guess was that the reason was because I am so sick. She said it was good I came in rather than just assuming it was another random symptom because sometimes a missed period can be a sign of something serious. I have been doing a bit better lately, especially with the vomiting and I finally got it back last cycle. I am on Seasonale so only get it every 3 months, so it had actually been 12 months since I'd last had my period. I got it right on time and have never been more happy for my time of the month!!

You poor thing! I'd get nasty if they tried taking away my Adderall. I am prescribed 10mg up to 4x/day, but on a normal day only take 15mg. Without it, I am bedridden. I have one article that hasn't been mentioned. There is an article I have called Postural Orthostatic Tachycardia Syndrome (POTS) by Koichi Mixumaki MD PhD. It is a long one. Under pharmacological interventions, on the journal page 302, methylphenidate (Ritalin) is listed. Methylphenidate causes vasoconstriction by increasing presynaptic catecholamine release, decreasing reuptake, and inhibiting monoamine oxidase. Methylphenidate is useful for treatment of vasovagal syncope and suggested to reduce postural symptoms in POTS; however there is no evidence for this. It isn't ideal with the whole "however there is no evidence for this" but I thought I'd throw it out there anyway. Isn't POTS under the umbrella of vasovagal syncope? Due to my trying to save ink and paper, I do not have the page with the citation the author used for his statement about using Ritalin in its treatment, but there is a notation that he did indeed have a source. Maybe you could find peer-reviewed scientific articles about Adderall and vasovagal syncope? Early on, my diagnosis was hyper-somnolence and they gave me Adderall after narcolepsy meds gave me severe migraines. I'm unsure if this is an off label use or not.

I am going to be in my local (small town -- it'll reach <100,00 people likely) newspaper. The article will cover POTS and mention my fundraiser. We talk here a lot about what new POTSies, family members, and doctors should know, but what about just the general public? Ideally everyone would want to have an in depth understanding, however that is just not reality! My goal is for someone to be able to give a basic definition of POTS similar to how most anyone can give a basic definition of cancer. What I really want to get across is that our autonomic nervous systems are often the root cause of all of this. When I explain it to people, I tend to emphasize how the autonomic nervous system controls almost every function of our body, therefore anything can go wrong. This results in the wide variance of symptoms with the one commonality being tachycardia. I'd love your thoughts and concise ways to communicate POTS.

The search engine must have been messed up yesterday. Today when I search on here or Google lots of things come up on dinet, yesterday (even through google) nothing came up about it on dinet forums. Sorry for the repost everyone.

I'd love to hear anyone's impressions of this program. I feel hope when I read about it and hear testimonials, but I have been hopeful in the past back when I was diagnosed with CFS instead of POTS, and have been very disappointed. It is rare I let myself get hopeful these days, so I thought I'd see your guys impressions of the website and such. I can't find a ton of information about the doctor (a psychophysiologist) online which is a bit concerning. I was surprised to search and find no discussion of it on here... (or maybe I'm a bad searcher? ) I am either going to try out this or try out the Pain Rehab Center at Mayo Clinic. I don't believe any of these places will "cure" me, but I do believe they can help make my life more livable. I posted about Mayo's PRC and no one really said anything, so I'm guessing not many people have tried it. I'm a bit skeptical of it based on some of the things I've heard they promote, but I've also heard good things about it (for fibro). Here's their website: http://www.potstreatmentcenter.com/ Here's their Facebook page where lots of videos can be found: https://www.facebook.com/POTSTreatment

I personally feel feverish quite often. Sometimes my temperature is normal but a majority of the time, I do have a low grade fever when I take it. However it doesn't feel like a low grade fever (99.9-100.2), it feels like a bad one. It was one of my first symptoms. I was reading a journal article about Norepinephrine Transporter (NET) deficiency, and it said many with NET deficiency have a low body temperature.

Janet, I've always had terrible back pain since I was an itty bitty thing. It is relieved by intense exercise (60 minutes of interval training 6 days a week) but that isn't an option an anymore. Is your sore back relieved by massage or exercise, or is the abdominal binder the only thing you've found that helps? I'm just trying to figure out if perhaps the fact mine is helped by massage and exercise means it's muscular and not blood pooling. Or could blood pooling cause muscular issues in the back? I have pretty bad back spasming. Anyways, thanks for the response to my questions.

I've done some searching for people talking about their experiences going through a rehab in order to cope better with their new POTSy lifestyle. I've found a little bit on here, but not much. So has anyone out there gone through any sort of Pain Rehab Center? I'm looking at the PRC at Mayo Clinic. I went through their POTS Clinic last September and had a good experience. I have heard wonderful things about Mayo's pediatric PRC. Most of the patients that go through the pediatric clinic have autonomic issues. This won't be the case for the adult, so I'm wondering about it. I think biofeedback therapy could be really helpful! Here's the pamphlet on it: http://www.mayoclinic.org/mcitems/mc1400-mc1499/mc1459-02.pdf

I'm thinking of you!

Alex thanks for those articles. E Soskis, I just wanted to share that I used to get the baby belly after eating. My mom said when I was in high school, she'd be concerned I was pregnant and not telling her only to see that the baby bump was gone the following day. I found a food allergy (gluten) as well as intolerances (soy, dairy, egg). After eliminating these foods, I no longer get the belly. I also take enzymes with heavier meals. Sometimes I have gastroparesis as well. When its really bad, I turn to medication. Reglan has worked wonders for me. It makes the stomach empty more quickly. Based on my own experience, I won't be using abdominal compression instead of stockings, but I will definitely consider it in addition to them. It sounds like you guys have had a lot of success with abdominal binders and the research I've read is positive. I've taken pictures of my feet with toe-less stockings versus without stockings after standing for only a few minutes. There's such a huge difference! The picture with stockings kind of looked like vampire feet because they were so pale in comparison to the purplish/red tone they take on without them! Questions/Thoughts for Everyone... How tight do you guys wear the adominal compression gear? I've heard of doctors expressing concern over people wearing Spanx. I know there's a big difference between putting all of that compression on your abdomen for medical reasons versus vanity, but I'm guessing the long term effect could be similar. I wonder if some people feeling worse with compression correlates with them also tending to have a higher blood pressure. They did tilt table tests on people with orthostatic hypotension to see how abdominal binders effected the stroke volume and blood pressure. It showed an average increased stroke volume of 14% and increased blood pressure by 30/14 mmHg. That would be quite a jump for someone who doesn't have low blood pressure. Of course, based on this study, we don't know that it would jump that much if someone wasn't suffering orthostatic hypotension. http://www.ncbi.nlm.nih.gov/pubmed/15241645 Do you guys do any exercising? If so, do you wear your compression gear while exercising? On "good" days I try to exercise without it. For one, the gear is very warm to exercise in (not that I'm doing anything too intense to a "normal" person). The second reason is I wonder if I'm training my body to rely on the compression gear. There's no science behind this thought process, it just is what I think/wonder. Jackie

Thanks for the links Alex and everyone else for their input!

Like Meg, I got that feeling with Midodrine. It was constant during the first 10 days and now it's just every now and then.

Without medication, my resting pulse ranges from 80 to 100 depending on the day.

I had been diagnosed for POTS for about 5 months when I finally agreed to start wearing compression stockings. Prior to that, I was resistant. I thought they'd be very uncomfortable like the hospital ones. I thought they were unnattractive. Most of all, I thought they wouldn't help! My thoughts were, "I will wear these stupid hose so my doctor will leave me alone about it and move on to the next treatment option. " I was very surprised to find that after wearing them all day, every day for 3 days, I noticed a difference. On the day of day 4, I decided I'd skip them. I noticed how heavy my legs felt when I stood and noticed how my legs turned reddish. It turns out my doctor actually knew a thing or two, and I did have blood pooling. I've heard all different kind of recommendations as far as compression stockings, so I'm interested in other people's experiences!

The blood work itself shouldn't mess with it since they won't take much. However... Do you have to fast for the test? If so, learn from me and have your collection start time be after you are done fasting. For some reason, the doctors and nurses didn't stop to think that they were having me fast a bunch (including no fluids) and collecting urine at the same time. I had to fast part of the day prior to my 24 hour urine test for some tests, and then fast half of the following day which was the day I started the urine collection. That messed up my urine screen and made it look like my body wasn't retaining sodium properly. Unless you have to fast for half the time period you are tested, I wouldn't think it'd be a problem. Just eat/drink as you normally would so it is an accurate reflection of a normal day for you.

I'm so sorry to hear this. Was he/she a major support to you? I hope you still have someone to be there for you, and if not, we are here. People that cheat don't really need what most would consider a good reason to do so. (In my opinion there is no good reason anyway). If he/she did blame it on the POTS, I think it is him/her deflecting attention from the real problem.The cheating isn't a reflection of you or chronic illness, but of your partner. There are a good amount of people with chronic illness with faithful partners who don't go out and cheat. There is no good reason to cheat on someone! Were you guys together prior to the onset of your illness? If not, maybe when you find someone new, they'll be a better fit because they'll always know you with your current limitations.

I'd always gotten worn out easily growing up if I didn't get enough rest. For example, if I did slumber parties two nights in a row, I'd end up sick. It was never anything that kept me from living my life though. I just needed to make sure I always got enough sleep. In 2008 when I was almost 19 and in my freshman year of college, I got a really bad case of mono. I never recovered. At first my main symptoms were low grade fevers, severe fatigue, and sore throat. As time went on it got worse and worse. The fatigue was the most difficult symptom, but I also began to develop memory issues, trouble focusing, joint pain, and headaches. I went to all kinds of doctors. It's hard to say how severe my symptoms were at this time because of how heavily I covered it up with medication. Eventually I ended up on Adderall to help with my new focus issues and it helped with energy as well. I managed to graduate college in 4 years but it took Adderall, tons of caffeine pills, and not a big social life to do so. I got my dream job creating my own department at an agency at the age of 22. I developed dehabilitating stomach pains. I'd have to work from home some days (thank God thsi was an option) because I could hardly move. Long story short, I became more and more ill. I added Tramadol to my daily combo of medication. In February of 2012, only weeks after a quit my job and 4 years after the onset, I was diagnosed. When my fiance met me, I was pretty functional because as I said, I was heavily medicated. He went from being able to go out to dinner, movie, and drinks with his fiance, to being excited if his fiance is able to go to a movie with him. He's so understanding and I am so grateful. My current limiations are severe to the point that the state has found me disabled. Here's a few examples of what I consider big/small things these days... Huge Things: To do any of these things, I try to ensure I have nothing planned the 2 days prior and 2 days after as I'll need rest. take care of my stepdaughtergo to mall using wheelchairgo to a movie (the sound gets me)have someone over (that I sit up for) for longer than 30 minutesgo to a family eventBig Things: grocery shopping using a motor cart (this is a very big thing for me, it almost made the "huge thing" list)housework that takes longer than 7 minuteshaving a guest overexercise more than just simple stretchinga movie in the theater (the sound really gets me)research (I like reading/summarazing research journals)take a standing shower (versus a bath)type a blog post that takes some thoughtprepare a one course mealgo see a nearby doctorSmall Things: take a bathshave legsdo hairdo makeupread a few books to my stepdaughterempty the dishwasher or a similar quick tasktype a laid back blog posttalk on phone <10 minuteswater the gardenread an hour or so (I am a much slower reader than I used to be)make phone calls to doctor officesdo the billsprepare food <10 minutes (I love my raw blender creations)Bad Days: I can't do anything, I am happy if I can do one small thing such as looking at things on the computer. Normal Days: I can either do one big thing, or two to three small things. I can't do big things more than one day in a row unless I want a disaster on my hands. Good Days: I can either do one big thing and one small thing, or four small things. On all of these days, I will spend almost all of my day with my feet up and compression hose on. I will have started my day with 1.75 liters of fluid. I will have rested at least an hour, probably more like a few hours, between activities. I will have needed to sleep enough the night before. The activities I listed, are literally it. I never thought I'd count taking a bath as a major part of my day, but that is where I am at. I will not feel good at all during the day and as the day goes on, I will become more and more ill to the point that I can't really get up. I can't think at the end of the day. I try and think and my brain is like "no thanks, I'm good on thinking for today ". What I've listed is what I can do without needing the hospital or without winding up vomitting (my body's final assault). If you have any specific questions about how tasks effect me, let me know. I'm in a brain foggy week right now, so my writing may not be the clearest. Apologies.

I just want to say they have helped with the symptoms of low blood pressure (caused light headedness and presyncope and alleviating fatigue slightly) and tachycardia (caused rapid fatigue with standing and presyncope and was just uncomfortable), but I still am disabled. If we had my stepdaughter everyday, it'd be much more difficult. The most difficult symptoms for me are the severe fatigue, ocassional pre-syncope, and I get really bad sore throats after exertion.

I agree with Carrie that it may be a good thing if it is in the high range of normal as it is often called the "fountain of youth". Yours is out of whatever criteria researchers used to decide a healthy upper level of DHEA so it is probably worth looking into! Is your doctor going to do further testing? I've been thinking about my own symptoms from low DHEA and looked back at my research. I was concerned that the DHEA dose my doctor had me taking was a little high so I looked up what would happen if I too much DHEA. If my levels got too high I wanted to know what to look for. Along with my research, I came across some diseases too much DHEA is a sign of. I'm sorry for not having much detail, I just have bullet points jotted on a piece of notebook paper without a ton of detail. DHEA is a precursor for testosterone. If you are a woman, this can lead to facial hair, weight gain in the belly and other symptoms associated with masculinity.Polycystic Ovary Syndrome is often associated with high DHEA. They think the high DHEA is a result of the pituitary being overly stimulated in response to stress.There's types of tumors called androgen secreting tumors that secrete DHEA.Swelling of the adrenal glands has been found in some with high DHEA.High DHEA is not necessarily harmful. It may sign of adrenal and other disease. It does not need to be corrected in all cases such as the case of a benign tumor.I don't know about naturally high DHEA levels in the body, but supplementing with too high of levels of DHEA for too long can lead to heart palpitations and tachycardia.Let us know what you find out.

Florinef messed with my pancreas so I had to stop taking it. It was the first medication I ever took for POTS and I did notice it seemed to help with my energy.

I saw Dr Fealey and learned so much from my visit with him. He could explain so many of my symptoms that no other doctor ever could explain. If he couldn't, he made sure to refer me to someone who could possibly help me figure out the cause.

I just wanted to throw in that I had what my doctor called "the DHEA of an 80-year-old woman" at the age of 20. Its correction really didn't change any of my symptoms other than it helped a bit with hair loss. Symptoms Onset: Feb 2008 Low DHEA Identified: February 2010 DHEA back to normal: May 2010 DHEA back to normal for 3 months: August 2010 doctor said at 3 months we would likely know if DHEA was our culprit or not Start of downward spiral: October 2010 POTS Diagnosed: February 2012 I have my DHEA tested about once a year just to make sure it is in the normal range. I no longer take a supplement and it stays normal on its own.

Adderall has helped me a ton with focus and energy. Daily I take 10-15mg, but on a day where I need to with it, I can take up to 40mg. I only do this once every 6 weeks or so. It only helps in the moment. I had to be really careful to not overdo it. It makes me feel like I have energy, but in all reality, it is fake energy. If I take Adderall, I can get through doing a bunch, but eventually it catches up with me. The post-exertional mailaise is just as bad as it would be if I hadn't taken Adderall the prior day. I took it at full strength for the final year and a half of college and for 6 months of work. It (along with pain medication and caffeine pills) allowed me to override my body to the point that my body was so worn out, it seized to work. I literally couldn't move or think without pain, vommitting, the works... I think of it that I kept telling my body to quiet down by giving it more drugs to cover up its signals, it finally gave me some signals I couldn't ignore. So, it helps a lot, but can be dangerous so I don't want anyone to ever think of using it as a cure or way to do whatever they want. For me, it is an invaluable crutch and I don't know what I'd do without it!

I wonder if it has anything to do with them being really into doing POTS research. Maybe their research reports only include people under 50? That still doesn't make any sense as to why they would refuse to do autonomic testing for you... I would think they just would say you are not eligible for their research. I don't see why whether or not your results can be used in the research should have anything to do with the testing and care you recieve.

My sister had POTS but is doing better now. She still experiences exercise intolerance and fatigues easily, but she is leading a very normal life. She works full time and doesn't consider herself sick. My mom has EDS and has many dysautonomia type symptoms. My maternal grandma likely had dysautonomia, we will never know since she has died. My maternal aunt also has many autonomic symptoms.