lejones1

I get these sometimes too. I've always thought it was sort of like...when I'm upright my body releases lots of adrenaline to keep me going and sometimes it may cover the fact that I'm getting worn out. And then when I lay down and the adrenaline subsides, I feel all the fatigue, lightheadedness, etc that was building while I was up. I'm not sure if this is true but it makes sense to me, especially since it usually happens when I know I've been upright a bit too long.

I think you'll get back to baseline! I've had that fear before too - I was pretty stable for a while and tried to go back to work full-time - big crash for 2 months. Once I got back to "normal", I tried to go back to work part-time and start exercising - again, big crash. I was mostly bedbound for 4 months and thought I'd broken myself forever. But nope, that ended too! That was almost a year ago and I've since learned to challenge myself in smaller ways. I'm working 30 hours a week again, I just built up to it slowly. Also, I know this is controversial, but you may considering cutting back on your exercise until you get back to normal, if you feel it's become much more difficult. I think I got out of my last crash basically by...aggressive rest. I didn't even try to exercise again I was mostly back to normal. Good luck - it will be ok!

If your question is whether you might just have a panic disorder, that seems very unlikely! Positive tilt table test, mast cell issues, fainting...you're not imagining those things or imposing them on yourself. It's not all in your head! I definitely understand what you're describing though and have had all the same thoughts myself. I'm a pretty rational person and sometimes I have these moments where it's like my body and part of my brain are freaking out and the other part of my brain is like "what is going on? This is ridiculous." I'd had a few panic attacks a while before getting POTS, but I knew how I talk myself out of them. Then when I suddenly got POTS (but didn't know it at the time) I started getting "panic attacks" all the time, out of the blue, and I couldn't talk myself out of them. It was incredibly frustrating and I didn't tell a doctor about it for months because I thought it was just me being crazy. When I found out it was actually because of POTS and my body freaking out, it helped me manage them a lot. I've found my triggers - dehydration, low blood sugar, upright too long, overstimulation - and try to avoid them. And pay attention to how you feel leading up to these attacks. If you can learn your warning signs, you can nip them in the bud. So, for example, the other night once you felt your symptoms building you could have excused yourself and lay down in a dark room for 10 minutes, deep breathe, drink some water, etc. Some people will think it's weird or rude but that's their issue - you have to take care of yourself. This is not just panic - these are physical symptoms that you're not just going to be able to talk yourself out of. I was reading something about POTS that other day that said that said the autonomic nervous system is at the intersection of mind and body, and I think that's so true. This is definitely a physical illness. But there are aspects of it that blur the lines with our emotional state as well - a fight or flight response is going to feel like a panic attack, regardless of whether you are actually worried about anything; neurotransmitters may just be chemical responses, but they can seriously affect your mood and behavior. Sometimes we get brain fog and we may seem really spacey, but there's a physical reason for that, it's not because we're boring or rude. And it goes the other way too - I think we're much more sensitive to stress, good or bad, than most people, because our nervous systems are overactive. Try to learn to calm your sympathetic nervous system. As I mentioned before, pay attention to triggers. Try deep breathing and meditation. I started taking magnesium (natural calm) and it's been incredibly helpful. I usually just drink it at night, but if I feel really antsy and drink a glass, I can feel myself relax within a few minutes. (Warning - in some people it lowers their blood pressure.). Also, so glad you said your husband came around! I know this stuff can be really hard on partners as well, so try to help him understand how much of this is because of POTS so you can figure out how to manage it together. Good luck!

Andybonse, I get that too, the shortness of breath from being upright. I've always thought it felt like I had a bunch of weight on my chest or something, like it takes a huge amount of effort to breathe. It's very different from the shortness of breath that can come on at any time. I got it during my last tilt table test and mentioned it to the lab tech, who knew quite a bit about POTS. And he said a lot of people reported it and, like the article you found mentions, that it has to do with lack of blood flow to the chest. Nice research!

Take it easy. Mono can be incredibly taxing on the body, with effects lingering well beyond the obvious time frame. I had it over a winter break during college. My parents withdrew me from school that spring and although I was furious with them at the time, I think it was definitely the right decision. I thought I'd be back to normal in a couple of weeks but the fatigue actually took a while to dissipate. It sounds obvious but really pay attention to your body - if you're still fatigued and you know it's not just from POTS, don't jump back into your routine. Like Jackie mentions above, it's not a challenge, it's a sign you need to rest. I don't know what your current exercise routine is but can you start back gently? Yoga, short walks, etc?

I had the exact same result as you - 2 on Quest - a few months ago. I was told it's just a part of POTS - look up what Lulusoccer mentioned about the renin angiotensin aldosterone system, there's a fair amount of research in that area. I think in comparison to patients with adrenal failure, POTS patients seem to be perfectly capable of making aldosterone but don't and one of the suggestions is that there's nerve damage around the kidneys that distorts the signals from our brains telling the kidneys when to produce. This is basically why Florinef works for many POTS patients - it's synthetic aldosterone. If you are worried about adrenal issues, definitely get some hormone testing done. I had a cortisol stim and something else, can't remember.

I've had a similar issue with HSV1 (obviously another herpesvirus). I've had elevated IgM levels since I've had POTS - which can occur in healthy adults during cold sore outbreaks but I'm not getting cold sores and it seems to be constant. I've tried taking Valtrex a few times to see if it will help, but haven't been able to tolerate it. I think the meaning of these levels is hard to intrepret and Robin gives a good overview of that. To slightly correct what she said...the EBV early antigen IgG level that you mention is different than just plain IgG. It is generally not elevated in healthy adults and usually means the virus is actively replicating in your body. http://www.cdc.gov/epstein-barr/laboratory-testing.html You could definitely consider trying antivirals. So what's the connection? Well the herpesviruses all live in the nerves, so there's a possible connection there. And there's growing evidence that herpesviruses play some sort of role in triggering autoimmune disorders, like MS and Hashimoto's, so with the research suggesting POTS may be autoimmune there's another connection. I had a bad case of mono 18 months before getting POTS and my doctors seem convinced that was a triggering factor for me, so I've asked a lot about it it and the general consensus seems to be that for some people, there is definitely a connection between herpesviruses and POTS, but it's not entirely clear how it works. Molecular mimicry is one theory you could read about - basically the idea that some viruses can imitate certain cells in our bodies and trigger the immune system to attack itself rather than the virus. Hopefully something good, like a new treatment idea, comes from this!

I have asthma too, but was diagnosed long before POTS. I don't know if there's a connection...maybe a bit of an immune dysfunction/autoimmune connection if anything. Mine isn't very bad so I don't use preventative drugs, just a rescue inhaler. I think lot of the asthma drugs can be problematic for POTS - I know albuterol can cause tachycardia. But it's not too much of a bother for me. If you want to limit medication use, focus on your breathing when you're having an attack. There's kind of a circular connection between hyperventilation and asthma. Not being able to catch your breath is scary, so people hyperventilate...but hyperventilation exacerbates asthma. Good luck!

Wonderful idea, Mamawithpots, I love this! Like Macca mentioned, when I first became sick I had an adjustment period where I struggled to accept the changes and was honestly pretty negative. But once I learned to stop mourning my old life and accept that POTS wasn't going anywhere, there are so many things I've learned. Physical limitations aside, I'm a much happier person and probably better friend, daughter, etc now than I was before getting sick. So some of my positives: Much closer relationships with my parents (and some extended family too). I moved home at 22, when I became sick, after living a flight away for 5 years. Never thought I'd live at home again but it's been really nice to reconnect and strengthen relationships. They were never bad before but we're the types that always swept the uncomfortable stuff under the rug, and that ceased to be an option in dealing with all my health stuff. It definitely wasn't an easy change at first, but I'm so grateful for the outcome, and absolutely so thankful for the support of my family! A stronger faith. A closer relationship with God. The realization that sometimes I just have to let go of my need for control and trust that his plan is right for me, even if it may not be what I thought I wanted. I've learned to judge my self worth less on what I could do or accomplish and more on just being me. And also learn that my accomplishments may not be what I expected before I got sick, but I can still do things to be productive and make a difference. Being more empathetic. I wasn't cold-hearted before but I was definitely uncomfortable with negative emotions so sometimes had trouble relating to and comforting others during their struggles. Having to learn to face my own fear, sadness, weakness, etc. made me more comfortable dealing with and relating to others' problems as well. Instead of making me uncomfortable, I actually really enjoy listening. Less stress is mentioned above - yes absolutely! I've talked to other women with female-dominated illnesses (autoimmune), and it seems like so many of us have a history of being particularly hard on ourselves, perfectionist, internalizing stress, etc. Having a limited amount of energy definitely forces you to prioritize and say "ok what's the worst that will happen if I can't do that today?" I think I've become more self-aware. Recently I was talking to a friend who'd broken her back about how much being bedridden, because of all the time spent alone and without many distractions, really forces you to come to terms with who you are - maybe finding things you really like but also things that need improvement. I'll always be a work in progress but I think this has made me confront and pay attention to my weaknesses and things I need to work on. Appreciation for the small things. This was even more pronounced after I came out of being bedridden (but that's probably a good thing to not get ecstatic about taking a shower everyday!). But still definitely - things like a conversation with a friend or a good meal or a funny movie can make my day - and I'm glad! I've realized that, in most circumstances, happiness is a choice - you just have to pay attention to the little things (and people!) that make you happy. Also definitely, appreciation for the importance of good relationships. Ok well I obviously have a lot! I think one of the ways I've learned to cope is to focus on the positives that have come from POTS, so I don't just think of it as this horrible disease. And actually I think that's an important message to anyone who's newly diagnosed (Mamawithpots, it sounds like you're already doing this!) - it can be very hard to adapt to the changes that come with POTS and I think it's pretty normal to have a period of struggle, but once you come to terms with it, there's definitely a silver lining and there are so many things that can be learned and plenty of good that can come from it.

A whole conversation I had with a rheumatologist. Before I saw a specialist, I had a 4 month period where I was mostly bed bound. To get to this doctor my dad had carried me to the car and wheeled me in in a wheelchair. I was wearing 2 pairs of sunglasses for light sensitivity. So first the doctor said "don't you think that's a bit rude?" and asked me to remove them. Next up...he suggested I would feel better if I went back to work and went out with friends (apparently having visitors was insufficient). I was like "umm...some days I have to crawl to the bathroom?!" And finally he decided I was depressed and told me that I had to accept that my symtpoms weren't actually physical in nature and I would feel much better. He KNEW I had POTS - he'd been the referring doctor for the tilt table test! The whole interaction was the most bizarre, frustrating experience I've ever had with a doctor. He just walked out of the room after a while, it was clear there would be no follow up.

I've had episodes like this too and I don't think they're really panic attacks, I think of them as "POTS attacks". The specialist I see said that what may seem like panic symptoms are actually physical symptoms for us, although we may get nervous because they can feel scary. I agree with Freaked...I think for me they're usually triggered by hypoperfusion and adrenaline. I usually try to lay down, or at least put my feet up, lean back, whatever I can do. Try to drink water and have a salty snack - carry these with you at all times if you need to. And do try the deep breathing thing, as well as telling yourself that even though you feel bad in the moment, it will pass. That won't prevent them but I think helps stop exacerbating them.

Do you think your daughter might be embarrassed and scared? I had a flare at work today and had to come home early and even though I know it's not actually a character flaw, there's still some part of me that feels ashamed telling my coworkers I can't function because I'm tired/lightheaded/etc. On some level I sort of feel like a failure and a bit of a weirdo. And I can imagine that as a teenager, that sense of being "different" would be a hundred times worse. It's also possible she may be scared of what happens outside of the safety of home. Before I got better at reading my symptoms, I had a number of instances where I started crashing in public and it was pretty terrifying. Sort of like what blue mentions above..if she has a routine for how to make herself feel better when she's home, and she can't do that at school, and may have to face having a crash in the middle of class, that's pretty scary. You've mentioned that your daughter is seeing a therapist, which is wonderful, but does she also feel like she has anyone "safe" she can talk to at school if she starts feeling bad, like a teacher or anything? If she tries to go for a partial day and starts feeling bad, is she able to come home? Just some things to think about!

I think probably salt is the main reason we need electrolyte drinks. I make homemade versions. Just water down juice and add salt. Or I've actually been using low calorie lemonade from trader joes recently - it's sweetened mostly with stevia and the only other "addictive" is carrot juice coloring, and it has much less sugar than juice. My current recipe is: 5 teaspoons of salt in 64 ounces lemonade. I mix 8 ounces of that with 12 ounces of water and that's the first thing I drink every morning. If you start drinking this stuff every day you'll get used to the salt and can add more and more. If you wanted potassium as well, you can buy Morton salt substitute at the grocery store - it has a lot of potassium chloride in it.

I don't get this but my mom does and a doctor told her it's cause of disk compression in her neck or something like that. Like the spine is compressing nerves that go into her arms i think? She sleeps with a special pillow under her neck and says it helps a lot

I've heard that POTS patients are often thin, but I've never read anything about being too thin causing POTS and I can't really imagine how that would work. I think your daughter's doctor is confusing correlation and causation. Has he considered the possibility that she has gained a few pounds BECAUSE she feels better? I've always been thin and when I got POTS I lost 10-15 pounds and became underweight. I also felt terrible. In the last 6 months I've returned to my normal weight and have been feeling better. But I don't feel better because I gained weight - I gained weight because as I started feeling better, my appetite returned. It's wonderful that your daughter is feeling better, but that seems pretty...lazy as a doctor to say "if you gain some weight, your nervous system disorder will go away". No, I don't think so.

Not just you!! I've noticed this so much recently, particularly getting neck pain from it. I used to have pretty good posture, not perfect but it was definitely never an issue. But since POTS...it's honestly terrible. I look like a rag doll. My coworkers laugh because they walk in on me and I'm leaned forward, completely sprawled across my desk, with my neck craned to look up at my computer. Or leaning way back with my feet up. And I drive like a little old lady - slouched forward and hunched over the wheel. It's not something I consciously do - I suspect it's just our bodies attempts to get out brain closer to heart-level.

I saw him last July and had a very good experience, but was disappointed with the follow-up. Although I'd been diagnosed before I went, he's the only POTS specialist I've seen and it was amazing to be somewhere where they really understood what was going on. I also loved the support staff - the nurse I had was wonderful, and his autonomic lab tech was great and has been doing it for years. They kept me supplied with huge cups of water (and food too during my full day of testing!). Even the phlebotomists, who work for a bunch of different doctors at the hospital, knew all about Dr. Chemali's patients and POTS and were so friendly. Like Marigold said, Dr. Chemali is very knowledgeable and no-nonsense. He listened to my whole history and was pretty helpful in putting the "big picture" together - I got POTS at 22 but he asked me some things about my childhood and suggested I may have had some predisposing signs for a while. I had an appointment with him on the first day, then the next day I had a ton of testing done - I think 25 vials of blood drawn, glucose fasting test, nerve biopsies, QSART, a repeat tilt table test, and a couple of other autonomic tests. It was an exhausting day - I traveled there (also from NC!) so they pushed all my testing into one day but they'll spread it out if you want to stay longer or live in the area. I think he may have a sort of standard panel of tests he does on everyone, then adds certain things based on your specific history/symptoms. I was told to do water&salt, compression stockings, etc, then we'd talk medication later. (Also for the people that live in the area, they've partnered with a local Y to develop an aquatic exercise program - pretty cool.) Unfortunately I didn't end up really finding a cause, but I have post-viral POTS so that's not too surprising. I did find out I have small fiber neuropathy & he suggested I see a geneticist about EDS since I'm hypermobile. Like Marigold I had a negative experience with the follow-up with his PA. His practice is, understandably, insanely busy and he brought her on to help him manage some of his load. As I mentioned before, the other staff in the office were great. During the autonomic testing, the lab tech kept asking me to report my symptoms and as I described lightheadedness, shortness of breath, etc, my mom, who was in the room, interrupted and told him it was probably my "anxiety" and he turned to her and said "Nope, your daughter's not anxious, this is what pretty much all of our patients report." And that was probably one of the best doctor's office experiences I've had since this all started! Overall, it was a good experience and I would definitely recommend him, particularly if you're in NC. Good luck with your daughter and I hope you get some answers!

First of all, I'm so sorry for what your daughter and family are going through. This has been incredibly difficult to deal with in my 20s, and I can't imagine the strength it takes to get through it as a child. You're a wonderful mother for seeking out ways to help and support her. I guess the first thing I'd say is...try not to be too hard on her about her reaction to this. It doesn't sound like you are at all, but I guess I mean..I think from the outside it's easy to say "Statistically you're likely to get better! You'll feel better if you're optimistic!", but when you're going through it it's not quite that simple. I was pretty positive when I first got sick, but after I got a diagnosis and it became clear that I'd probably always have POTS, and got sicker to the point I was mostly bedridden, I had 4 months where I was just really scared and down. My family and boyfriend kept telling me I was depressed and needed to be positive, and while I know they meant well, I actually just ended up being really upset with myself for not coping well. As I got well enough to leave the house, I started seeing a therapist who specializes in clients with health issues. When I explained to her what I'd been feeling, she told me "I'm not really sure that you're depressed - you've been having a pretty normal, reasonable reaction to a horrible situation" and I realized that she was probably right. Which certainly isn't to say that your daughter should feel like her life is over, because it's absolutely not. But coming to terms with all of this takes time. We all have assumptions about what our futures will be, and getting diagnosed with a chronic illness...you suddenly have to face that your future may not be at all what you expected. The loss of your old life and, even more so, the possibility of your expected future are very difficult to cope with, and I would imagine that's even harder for someone who's so young. I'm not sure how long your daughter has been ill, but if she's still in the relatively early stages of diagnosis, still searching for a cause and treatments that help, then I would say probably just give her time. If you're gotten professional help involved, it sounds like you're doing everything right. Additionally, make sure she feels she can talk openly with you about what upsets her and scares her. Do you know any else with POTS who she could talk to, or if you could find any other young patients through a doctor? Or do you have any family friends who have dealt with chronic illness? There certain aspects of this experience that can be imagined by someone who hasn't been through it that can but I'm not sure if they can fully understood. For me, it was really helpful to talk to other people who had been through similar things - to know that I wasn't alone and realize that what I was feeling was normal. I think that's probably why so many of us come on here! Try to be strong and positive and resilient to set an example to your daughter. Seek out the support you need as a caretaker - from family, friends, or even a therapist for yourself - so you can be there for her as fully as possible. A few people above mention trying to find smaller things that make her happy and I definitely agree with that - chocolate, sunlight, a visit from a friend, a funny movie. Depending on how sick she is your options may be more limited but you can always find something - when I couldn't watch movies I listened to books on tape. Actually one of the best things I've learned since being sick is learning to find joy in the smaller things - a beautiful day, a laugh with a friend, a delicious meal, etc. Help her learn to appreciate the things in her life that do make her happy (without being like "You have so much to be thankful for - you could be starving in a 3rd world country!" - I've heard that one and it's not all that comforting) Have you ever heard of gratitude journals - writing down a few things you're thankful for at the end of each day? Or you could just talk through them with her. Probably the thing that has helped me most is trying to reframe the whole situation as a positive opportunity rather than a loss. Sometimes this requires a bit of creative thinking, and it's not something that can be forced, I think she'll have to get to the point where she's ready - but it's definitely a perspective you could help introduce her to. What has she learned from this? Has it strengthened any of her relationships? Maybe she'll end up in with an interest in the medical field, or research, or social work. For me, this has been an opportunity to spend lots of time with my family, learn the importance of health and taking care of my body, become much more appreciate of small things, and also less bothered by little things. More than anything, I'm probably a more mature person from it - more in touch with my emotions and more empathetic and understanding of others. And I definitely see that in others I know who have struggled with chronic illness. Although my life is objectively worse than it was before I got sick as far as the "things" I have, I'm actually a happier person. This doesn't mean that I'm glad I have POTS, and there are definitely days when I get really angry at my body, or jealous when I see my friends' normal 24-year-old lives. But if I focus on what good has come from this rather than what's been taken away, even 50% of the time, it makes it much more bearable. It might be some form of denial....but it works!

I have trouble with this too! It's like my body can't handle "extreme" emotions and it's so frustrating. I understand that stress is bad on the body but like you mention, it's not just bad stress for me, it's also excitement. If I get really engaged in a conversation with someone or really look forward to something or whatever, it's like my body goes on overdrive and can't chill out and then I crash. I don't have hyperpots and don't have the exact same symptoms you describe, but I guess our nervous systems are just bad at regulation? One thing you could try that I think has helped me a bit is meditation and deep breathing. Also, Natural Calm magnesium - if I drink it when I'm feeling edgy, it can help calm me down.

I rarely have this problem anymore but for a while it was so hard to eat anything - was always either nauseated or no appetite. So let's see... - I would eat lying down a lot...which probably came with its own drawbacks but I do think it really helped me with nausea/not getting so tired. -Let yourself eat really slowly instead of on a normal schedule. It would honestly take me 2-3 hours to eat dinner every night because I'd eat a few bites, stop, continue. Also always have food around - this is good for those moments when you do suddenly have an appetite. Plus can be good for those days when there's just no way you can make it to the kitchen. -And to echo what Becia said...drink your food! Smoothies and milkshakes and soup. They always seemed to be slightly easier for me to get down + we can always use the extra liquid. If I wanted a change from fruit smoothies, sometimes I made them with frozen bananas, milk, carnation good start or cocoa powder, and peanut butter. -If you're really not eating much, try to make a lot of what you do eat calorie dense food. If you eat dairy, don't be afraid of full fat. Nuts. Throw butter or coconut oil on whatever you can.

I think that's probably pretty normal? When I was much sicker but still stubbornly trying to work, I got to a point where sitting up for a few hours could leave me bedridden for a few days. I decided it was time to quit when I spent more time on the floor of my office than in my chair. Now I'm much better and working again, but sitting up for a while still makes me symptomatic, although not how you're describing. I get bad headaches from sitting up too long. I think of them as POTS headaches because they're different than anything I'd felt before - they're a bit like tension headaches but I think maybe from lack of blood flow to the brain or something. When I first started back to work I did 3 hours a day and had headaches every day. They slowly improved, I increased hours, etc and now I'm up to 6 a day. So maybe it is possible to train ourselves to be upright more? Have you tried lots of salt and water at work? Compression stockings? Propping your legs up? Or probably the best thing I've heard...I have multiple computer screens so it's not an option, but I know a guy with POTS whose company bought him a laptop so he can work laying on the floor if he needs to. Probably worth a shot if it would work for you!

I got sudden-onset POTS a year after graduating from college and was living halfway across the world at the time. I had limited job security on my visa so I was let go after missing a few days of work. I stayed with my boyfriend at time and his family for about a month, hoping to get back on my feet, but after it became clear I was not improving and needed to see specialists, I moved back home with my family. It wasn't exactly a choice and at the time I certainly didn't think I'd still be here 18 months later, but I couldn't work to support myself and needed my American health insurance. I wouldn't have done anything differently - I was bedridden or housebound for most of my first year sick, so I don't know how I'd be here without my family's support. The negatives - watching my parents feel helpess as they watched my condition deteriorate. And feeling like a burden on them. As I've gotten healthier, the standard "adult child living at home" issues of boundaries, responsibilities, etc., but that wasn't really an issue while I was sicker because I think I was too weak too argue. Also, I went far away to college and even farther afterward, and most of my childhood friends have moved away as well, so I don't have many friends at home, and that's been quite lonely. Mostly I just miss the independence of living alone and living near friends. But every time I feel down about that, I realize how thankful I am to have a family that's supported me, emotionally and financially, through so much. So that really outweighs any negatives. I really haven't had to worry about anything except getting a diagnosis and getting healthier, and I realize how lucky I am to be in that position. I wouldn't have done anything differently.

I didn't react well to the flashing lights either - they made me feel really sick (clammy, weak, naseauted) and kind of like my brain was shutting down. My EEG was completely normal though and I've never had a seizure. I also had olofactory hallucinations a couple of times, smelling smoke, but not prompted by flashing lights. Apparently they can also be caused by migraines. I also don't get migraines although at the time I had a number of migraneous symptoms that didn't seem to follow a normal pattern. This all happened about a year ago and lasted for 3-4 months and then suddenly went away. Occasionally flashing lights (jumpy movies, driving on the highway at night, etc) still make my head feel funny, but only for a moment. At the time my neurologist basically said "yep you have some weird neurological symptoms with no clear cause and they're probably related to POTS but couldn't tell you how." Definitely definitely talk to your neurologist about what happened and try to get as many answers as you can.

I work part time (about 25 hours a week) and take one class at a local university. Right now it's the perfect balance for me - I love getting out of the house and actually doing something, but I still have to lay down for a few hours every afternoon to be stable and functional. I also use weekends to rest up. I've had POTS for 18 months - it came on suddenly after an illness and I had to quit my job and move home with my parents. I tried twice to work full-time - unsuccessfully - and both times ended up mostly bedridden for weeks or months. Both times I wasn't ready - I was just being stubborn and felt like I had to. This time I was "stable" for a couple of months before I started working - leaving the house several times a week, etc. The first few weeks working were difficult - like my body was adjusting to spending more time upright. But I'm lucky to have a flexible boss who lets me take a day off if things get bad. I'm not on medication - I just use compression stockings and lots of water and salt. Also, stay positive about your possibilities for the future! This spring I was housebound/largely bed bound for 4 months. I struggled to walk to kitchen, so the idea of working again seemed so far off I didn't even consider it as a possibility. Then suddenly, with no change in treatment, I got a lot better. I know I could always relapse again, but I'm trying to focus on the possibility of working full time once I find a medication that works. My advice would be...assess how much you can reasonably do and stay stable, and then try to do like 10% more. If you have to spend most days on the couch, jumping straight into full-time work is probably not a good idea. On the other hand, getting out of the house and doing something, if it's physically possible for you, is so good for morale. Also, I think for me it's helped train my body to get back to a normal routine and movements. Try to find a flexible situation - whether it's taking a class or working for yourself or finding an understanding employer. And tips for getting through - well as I said I wear compression stockings to work. I drink 20 oz of salt water with a splash of juice first thing in the morning. I work in the mornings, so I try to shower at night to avoid getting really dizzy right before work. I've been open with the people I work with about my condition, so if I sit down on the floor in the middle of a conversation they're not surprised. I don't do this, but I know a guy with POTS whose employer got him a laptop instead of desktop, so he can work laying on the floor if he has to. There are plenty of little things you can do!

Joann, I know that's so frustrating to fight with an insurance company over coverage - it really does seem like they just try to wear you down til you stop pursuing it. I know this won't help you on this test, but it's a tip for the future to make things easier with insurance - during every appointment/test/etc. doctors have to assign an ICD code for your diagnosis. Since there's no specific code for POTS, they have to choose how to code it. Mine usually pick a couple, but one I've seen consistently is "Syncope/collapse". I've never fainted either but I guess technically we all could! I asked a doctor about it once and he specifically said he did it for insurance purposes - insurance looks at these codes to decide what sort of testing is justified. The next time your doctor orders a big test or something, check with them on how your diagnosis is coded. Most doctors are really helpful about trying to get insurance to cover to whatever testing they think you need.