lejones1

Infections are a potential complications but they're very rarely serious as they tend to be with common, easily treatable bacteria. One of mine became infected about week after surgery - it was uncomfortable for a day or two but I was put on antibiotics and it went right away. And wisdom teeth removal is usually done in office so you won't even be at risk for some crazy hospital acquired infection. Maybe you could ask about prophylactic antibiotics if that would make you feel better. And to add another positive experience...I had mine out pre-POTS and was only in pain for a day or two. I was 19 so they hadn't fully grown in but they were all impacted. I had another surgery under anesthesia with POTS, but pre-diagnosis. I'm extremely medication sensitive but tolerated the anesthesia and pain meds just fine. I'm pretty ill - home bound - but recovery wasn't bad at all. I know everyone is different, just letting you know that it doesn't have to be too scary!

A few weeks ago I started having some weird neurological symptoms, like hallucinating smells and light sensitivity, and my neurologist is concerned it may be indicative of a seizure disorder. I had an MRI and EEG, but since those aren't very reliable I basically just have to wait and see if I start getting seizures. In the meantime, he told me to try not to drive...indefinitely. It's very frustrating! I was only driving a couple of times a week anyway but now I've very hesitant. In my state you have to sign something when you renew your license saying that you're medically fit to drive. I think if you get in an accident due to medical condition that you already knew about, you can be liable. I feel like this illness takes so much away from us, I guess driving is just another one of those things. I'm sorry that you feel too bad to drive and I'm sure it's still frustrating for it to be forbidden!

I think the overlap is actually quite common. I also have both - on my TTT my BP didn't drop until 40 minutes in so it didn't contradict the POTS diagnosis. The way my cardiologist explained it, the NMH is kind of secondary to the POTS - the heart races to make up for the blood pressure is trying to drop, and then if I'm up long enough it just can't make up for it anymore. He said having both conditions is pretty common and from what I understand NMH is probably underdiagnosed for POTS patients - I wouldn't have known if I hadn't stayed up the full 45 minutes and I know lots of tests aren't that long. I'm not sure how much it matters for treatment though, especially if there's a big delay in the BP drop - I think they're treated pretty similarly.

I was only diagnosed with POTS a few months ago, so I don't have a lot of experience with this, but I have weak lungs and have had lots of bronchitis, so I do know a bit about respiratory infections! And I really don't think your son should be exercising if he's still sick. I stubbornly tried this a few times and it never went well - the closest I've ever come to passing out was not from POTS but from trying to jog while I had bronchitis. I agree with badhdt, cardio could suppress his immune system and slow his recovery. Even in a healthy person, it can take the lungs a few weeks to fully recover after the flu. I think the risk of making him worse is greater than the risk of him losing progress. It sounds like gentle strength training might be his best bet, if he can handle that right now.

Yes, Lel, I have that problem too! I wasn't a super-athlete or anything, but very active, loved travelling, exploring, etc. I'd moved to Australia for a year post-college and got sudden post-viral POTS while I was there. Now I'm excited if I can take a 10 minute walk to a lake near my house. I agree with CMReber - I hope we can all regain the ability to be our selves someday, at least partially, even if it requires some modifications! I watch a lot of TV and movies, but it's getting terribly boring. Reading, knitting, doing puzzles. On better days I like to cook. This is a great thread to get ideas for new hobbies!

I'm so sorry, this sounds awful. I don't really know how your healthcare system works over though, but it sounds like you don't have as many options and maybe less leeway in pushing for certain tests. I know how frustrating it can be to work with doctors here, and I can't imagine how much worse it much be to follow crazy referral rules. I would actually be hesitant to send those charts unless it's a last resort, just because the data isn't very clear cut. For the first few charts, where you taking those measurements under specific conditions or what? It's easy for doctors to attribute variations to time of day, sudden position changes, anxiety, etc. And in your TTT charts HR increase is right around 30 and not much above 100. I don't mean to say this to question your self-diagnosis at all - it sounds like you definitely have something going on - but I know doctors can be stubborn and if you give them borderline info it'll be easier for them to blow-off. Maybe you've already thought of this, but would your GP be open to doing a poor man's TTT in her office? It sounds like what you really need is a TTT, but I guess without getting to a cardiologist that's not an option. A cardiologist may be more open to getting data from another doctor rather than self-reported from a patient, and maybe you could even go off meds for a few days beforehand to amplify the results. Good luck, I hope you're able to find a way to get them to listen to you!

If you're really just looking for salt, then make homemade "gatorade". You can look up recipes online, but it's basically just salt, water, and some sort of juice/sweetener. I usually use 1/2 teaspoon salt per 6 cups - saltier than gatorade but not so salty that it tastes bad. And then add juice just until it tastes bearable to drink - I try not to add much since I drink it every day and don't want the sugar, so it's no where near as sweet as Gatorade. Pomegranate juice and prune juice have a lot of potassium, if you want balance that out. I've been using tart cherry juice concentrate lately and it tastes really good. Pedialyte is good if you need a lot of electrolytes, not just salt, maybe if you're sick or something. It's a oral rehydrating solution aimed at kids with diarrhea/vomiting. If you can't find that brand in Australia, you'd be able to find some version of it at the chemist, probably in the kid's medicine section. I've used it occasionally, especially if I'm sick and not eating much, and it works pretty well - much more sodium than Gatorade and other electrolytes too. But it's not really mean for every day use and it's about $6 a liter here. It tastes pretty nasty and has artificial flavoring, colors, and an artificial sweetener. If you were to try to it, I'd look for the unflavored kind to avoid all of that and add juice if you can't stand the taste.

Also, Batik, the reason these doses probably seem so high to you is because there seems to be a huge push right now in America to raise EVERYONE's vitamin D levels. I have a lot of very healthy friends and family who have been put on 50,000 IU doses for borderline low vitamin D levels (which most Americans have). I know that higher vitamin D levels are correlated with better health and lower disease rates for many different diseases, but I'm not sure that it's actually been proven that intense supplementation in healthy patients has any benefit. I think most doctors just think, hey it's a vitamin, it can't hurt.

misstraci, you might want to try taking 5,000 IU a day instead of the 50,000, if you're worried about it. I also have borderline low vitamin D, I think 24 or 26, and my doctor put me on 5,000 IU a day for 6 months, then we'll retest. He said that he didn't see any reason to give a megadose to people who are barely deficient (it's a very popular thing to do right now, but I'm not sure if it's actually been proven to be better than small, consistent doses) and has had a lot of success with patients on the 5,000 a day dose. I'm very medication sensitive and don't have any reaction to it. You can buy that dose over the counter.

One more thing - the only way I've found to deal with this is eat small amounts throughout the day. It usually takes me 2 hours to eat dinner, I just pick at it really slowly. I also try to eat a lot and put on a few pounds during my "good" periods, because I inevitably lose it when I'm feeling bad.

Yes yes yes! Exactly what you describe, although it sounds like yours was more severe. My symptoms came on quickly and I was extremely nauseous for my first 6 weeks of illness. It felt like I was going to throw up my internal organs. I picked at food when I felt okay, but was rapidly losing weight. Luckily this eased off and the nausea isn't usually an issue anymore, but like you describe, I have periods where I really just don't want to eat and it's not exactly nausea, I just don't get hungry and when I try to eat it repulses me. I really do think this is related to autonomic issues. I never had trouble eating before. I know they can really mess with your digestive system - I'm sure other people on here know more about that.

Pickles, beef broth, popcorn (homemade, not pre-packaged), pretzels, canned soup. I don't have any good recipes, but I'm interested to see other people's suggestions! I take buffered salt tablets, Thermotabs - you can order them online. I tried regular ones before and they made me really nauseous, but these are great. I'm supposed to be aiming for at least 4 grams of sodium a day but realistically probably get like 2.5. I just started salt-loading and I'm struggling! I don't eat much processed or junk food and I think that's where a lot of dietary salt comes from. I do add it to my food but ugh - it's gross.

For my first few months of POTS I used to get the exact same symptoms, every day, although mine usually happened around 4am. It would wake me up suddenly then ease off over a few hours. It was before I had a diagnosis and I wasn't on any medication. I have no idea what caused it (aside from the fact that most of us feel worse in the morning) or why it went away, so I can't be of much help other than to say you're not alone! I still feel much worse in the morning, but just tired and foggy, not ill. And I too used to be a morning person - it's so frustrating! I'm sorry you're going through this and I hope it passes or you find a way to minimize it.

These are all such good ideas! I'm 23, so none of my friends really understand the idea of chronic illness. They're always like "you're still sick?!", "do you feel better yet?!". It gets really frustrating. So I've started just saying I have chronic mono - mine was post viral and I do have elevated EBV levels, so it's sort of true although it's not the main problem, and it's something people my age can relate to. If they're willing to listen I give more details.

When you say level out, do you mean stop increasing or drop back to normal? If I start moving around instead of standing still, sometimes it'll drop a bit. My HR varies a lot based on time of day and so if I walk around at night it may drop below 100. (I'm not on meds, btw) I've never seen it drop back to a normal resting rate though as long as I'm upright. One other thing I can think of.... I also have mild NMH, which does't really come into play in my daily life but 40 minutes into my TTT, my blood pressure suddenly dropped to 50/30. The nurses didn't stop the test because I didn't faint and within a couple of minutes I rebounded, my BP went back up to something tolerable. When I asked how this happened and why my body responded, the cardiologist said that with milder forms of dysautonomia, our nervous systems don't fail completely, they're just dysfunctional, so sometimes they actually do the right thing. So maybe that's what happening with you...maybe sometimes your body figures out how to do the right thing. I'm not sure if any of that is actually helpful, I don't know what the required duration is either.

My POTS came on after getting sick. I was told basically the virus got into my nervous system/brain and messed up something up...I don't remember the scientific details! There's no history of dysautonomia or any POTS-related disorders in my family and I don't have a personal history of any symptoms that would've suggested POTS. Between that and the fact that my symptoms started suddenly during a viral infection, I think the cause was pretty straightforward. I've also been diagnosed with post-viral fatigue and still have swollen lymph nodes and elevated viral titres A couple of doctors contemplated diagnosing me with CFS but aside from the lymph nodes, all of my symptoms can be explained by POTS. They're really both just vague titles anyway. I was told I'm somewhat hyper-flexible but not enough to worry about EDS. Other than that...nothing. I was just diagnosed a few weeks ago though, so I don't have as much info as most people on here! I think it really varies for everyone. Did your symptoms come on slowly or quickly? Do you have a family or personal history of anything related to POTS? Do you have symptoms that can't be explained by POTS? Those are all things you should consider and discuss with your doctors.

Thanks y'all, at least I know I'm not alone with this. Have you ever tried taking small doses of medications your sensitive to or is it really an all or nothing thing?

I'm pretty new on here and was just recently diagnosed with POTS so I don't know a lot about the weird symptoms that can go with it. I think I've developed medication sensitivity though and I have some questions about it - I've read that some other people have the same thing but I was wondering why it happens and how to deal with it? Just no medications at all? Or small doses? It's not like an allergy and I don't even get any of the normal side effects of the medications. The reaction doesn't start right away - usually about 3-4 days after starting the medication and it stops within 24 hours of stopping the medication. I feel "wired but tired" - like I'm exhausted and out of it but also really panicky and tingling all over. Once I tried to push through it and it did not go well - I became basically catatonic and felt like I was being shocked with electricity or something. I know that this started with POTS because I never had trouble with medication before and I was actually on antibiotics just a couple of weeks before my POTS symptoms started (suddenly after getting sick) and had no reaction. And then a few months later I couldn't tolerate the same antibiotic. It's happened in response to 3 different classes of antibiotics and now Valtrex, which I'm taking to suppress EBV, so I seem to react to a wide variety of things. But only if I'm on them for long enough - I was under anesthesia a few months ago and on Vicodin for 2 days afterwards and tolerated both of those just fine. I'm going to see my GP about this tomorrow but I'm afraid he won't believe me. I'm wondering if I should ask him to look into anything specifically? The last time I talked to a doctor about it he told me I was just afraid of taking medication, which I know isn't true, I just hate it because it makes me miserable!

I'm not sure...it can definitely give you flu-like aches. Is that what you mean? It also depends on the virus that's causing your bronchitis. What are your other symptoms?

Yes, it definitely can, especially if you have chills. Sounds like your lungs are clear though, so that's a good sign! In my experience, the full body symptoms usually only last a couple of days and you're just left with a nasty cough. To stay warm: wrap up in blankets, use a heating pad, hot water bottle, microwavable neck pillow. Drink warm liquids - tea, broth, whatever you can stomach - you need a LOT of liquids when you have bronchitis, especially if you have a fever. Watch your temperature and make sure you don't get too hot while you're trying to stay warm. Did they give you an inhaler at the ER? I have mild asthma and use my inhaler during bronchitis - sometimes it can really help your breathing and relieve the fatigue. So sorry you're feeling so bad, hope it passes quickly!

I've flown 4 times since I've had POTS, although it was all before I was diagnosed. Once was a 24 hour trip from Australia, with the longest leg 15 hours and I was pretty bad at the time (I got POTS after getting sick there and had to get home). I actually felt better on the flight than I had in weeks! Probably because I obsessively drink water on long haul flights. Try to get an aisle seat so you can drink a lot without worrying about bothering people to use the restroom and you can try to stretch your legs and get your blood flowing if you need to. I think the worst part was the jet lag, it took me wayyy longer to recover than usual. I think our bodies just aren't as resilient as most. So I would be aware of that as you plan your first few days!

I live about 4 hours from Chapel Hill. Is Dr. Lapp worth that drive? I mean, in your opinion, does he know enough about POTS to make it worth my while? (although hubby probably wouldn't put up a fight at all about me seeking out a doc in Chapel Hill. We are HUGE Carolina fans! We were actually in Chapel Hill 2 years ago when my symptoms were so bad but we had no idea what was wrong with me yet. We were at a basketball game and I was shaking all over, then got so dizzy and faint that we had to get up and leave (That's when I knew I was REALLY loved! When my husband was willing to leave the Carolina game because I felt so bad. I had to sit in a chair out front for a few minutes and some EMT's attended to me. They really wanted to take me in but I declined. Looking back, I almost wish I would have because maybe I would have caught this earlier and would have been able to see someone who really knew what they were talking about. If they only see 2 patients a day, how long does it take to get in with them? I can't believe they spend 3-4 hours with you! (Although my GP has spend 1-2 hours with me more that once.) Have you considered seeing Dr. Daw? Keep me posted as well if you find anyone! It just goes to show you how few and far between these POTS specialists are because NC is no stranger to modern medicine and state of the art healthcare facilities. I hate that Dr. Kline is no longer in practice. Not that it matters or is any of my business but why did he/she go on leave? I'm not sure if it's worth the drive to see Dr. Lapp for POTS, I think it depends on what you think your underlying cause is. Mine is post-viral, which he knew a lot about because of CFS, so he was very helpful but if you suspect it may be something else or have no idea, I would try someone else. It took me about a month to get into see him. I think the cost can be prohibitive so that's why the wait isn't so long. His practice is actually based in Charlotte but I think he spends a couple of days a month in Raleigh. Haha that's funny about the Carolina game (although I'm sorry you had to go through that!), you're lucky to have such a devoted husband! I have considered seeing Dr. Daw, I'm actually trying to get an appointment with him now. I was told today that his earliest available appointments are in late March. Maybe Raleigh would be close enough to Chapel Hill to satisfy your husband?! And yes, JennaC is right, Dr. Kline is on medical leave and doesn't have an expected return date.

Are y'all SURE it's sinus pressure or just front of the face pressure? I get headaches like this too and for a while I thought they were sinus headaches (but without any congestion) until a doctor told me they were probably tension headaches. If you read about types of headaches, these two can be confused and lot of people just assume sinus. Back of head pain is also classic tension headache pain. I've also had a little tingling with really bad ones. I used to get these occasionally before POTS, if I was really tired or stressed, but now I get them way more often. The good news it that if they are tension headaches they might be annoying and occasionally pretty painful but they're not serious. If you get other symptoms with them as well (visual disturbances, nausea, etc.), it's probably something else.

I'm in NC as well and am also looking for a POTS specialist. I was diagnosed a few weeks ago by a cardiologist at Wake Forest but he said they don't have any POTS specialists. Dr. Black is actually a chronic fatigue specialist. I saw the other doctor in her practice, Dr. Lapp, and he was great and actually knew more about dysautonomia than the cardiologist. I have post-viral POTS and still seem to have an underlying infection and he did a great job of helping me piece everything together (rather than so many doctors who seem to look at one issue at a time). They'll do tilt table and exercise testing but don't specialize in it. They're expensive and don't take insurance (although they will help you file), but I thought it was worth it. Each doctor only sees 2 patients a day, so they can spend 3 or 4 hours with you. Dr. Kline is a neurologist at UNC who I've heard is wonderful, but unfortunately she's out on medical leave indefinitely. I've also heard good things about Dr. Daw, a cardiologist in Raleigh. If you find anyone else, I would love to know! I'm still searching.

Trice, I get tension headaches often as well although they're not always severe. Akgirl's sound like something different...tension headaches usually only come on later in the day. I try to avoid strong medication unless really necessary since I've become very sensitive. I may take ibuprofen as soon as I feel one coming and sometimes it will ward it off. Laying down completely flat also helps me - mine are only really bad on days where I'm sitting/standing most of the day. The two most helpful things I've found are a heated neck pillow (http://www.amazon.com/Microwaveable-Filled-Pillow-Relaxation-Bag/dp/B00016WOS4) and rubbing pressure points in my neck. I use this - http://www.amazon.com/Still-Point-Inducer-Original-Congestion/dp/B000P9BTCY/ref=pd_sbs_hpc_4 - but a tennis ball will work just as well. Lie on the floor and try to do it for 10-15 minutes. This will probably only work if your headaches really are tension headaches, but I've found it to be so so helpful. Good look to both of you in dealing with your headaches!