lejones1

Katybug, I'm not sure about Group B strep without tonsils. I had mine taken out then and haven't had any form of strep since, but I would assume that if you can get regular strep without tonsils you could also get group B. Another thought: could it be something viral? Have you ever had mono? I know it can cause really nasty sore throats, even without a secondary infection.

And also I agree with looneymom that you should get a full culture. The type of strep that usually causes strep throat is Group A and that's all that the rapid test checks for. But in rare cases, Group B cause cause tonsillitis as well. I had Strep Group B tonsillitis a few years ago, 6 months after having mono and regular strep, and they said it was cause I had "bad tonsils" or something. If you had a history of strep maybe you'd be prone to it too.

This is a bit different but maybe related - when my POTS was really bad last year there was 4 month period where I got horrible migraines that would last a few days at a time. And I also started getting flu like symptoms with them - fevers, body aches, sore glands. I was convinced there was something really weird going on and my neurologist admitted he'd never seen migraines cause those symptoms. They suddenly went away so I never pursued any further testing but I wonder it there's some migraine-immune system connection in some of us?

It might be from the heat. I wasn't particularly heat sensitive last summer, but this summer it's exactly like what you describe...within minutes I feel like passing out. I don't know how to manage it except avoiding being outdoors at all during the day. I've had to start turning my car on 5 minutes before I leave because I can't bear the few minutes before my AC fully kicks in, almost passed out driving one day. So...no, you're not alone!

Showers are the WORST. I have a shower stool so that helps but still. I took them every other day when I was doing better and would feel back to normal after about 30 min. But I've bad a downturn the last couple of months and it's tough. Embarrassing confession: I haven't showered in 5 days. I wash my hair in the sink every other day and sponge bath every day but they just knock me out!

Does your employer know about your POTS? I know it can be a bit risky to bring up, but it may make you more comfortable with the situation. I think a lot of employers would be happy to make little adjustments in order to keep an employee whose work they value. My boss has been incredibly accommodating - I work from home a bit sometimes, lay down in empty conference rooms when I'm feeling lightheaded, etc. Some days fluorescent lights really bother my eyes too so we rounded up spare lamps so I wouldn't have to use the overhead light. I know someone else with POTS whose company bought him a laptop instead of the standard desktop so he can work lying on the floor. I was nervous being so open about my health problems when I first started back, but I don't think I would be able to work if I hadn't been honest about them asked for some help. Don't give up yet! Good luck!

I started having weird reactions to alcohol after getting mono, which was 18 months before I got full-blown POTS. In addition to decreased tolerance, I actually had symptoms really similar to what you describe - I would basically feel like I was having a horrible panic attack and on the verge of passing out. It didn't happen every single time though, as long as I didn't drink much, and it started wearing off...but then I got POTS! And now I really can't drink. Last time I tried I had maybe half of a gin and tonic and I was hungover for 2 days. I can't really take medication either so I'm pretty sure my body just can't detox anything. It's no fun being 24 and incapable of drinking, but relative to everything else, it doesn't bother me too much.

I was mostly housebound for my first year with POTS, aside from 2 very short-lived attempts to go back to work. Following the second attempt I ended up bed bound for 4 months. And then boom, one day I started getting better. And better and better. After a few months I went back to work and until 6 weeks ago, when I got a nasty sinus infection that knocked me out, I was working almost full-time (this was about 8 months after being bedbound). I'm really medication intolerant so this was without any drugs. I honestly just...started getting better (I'm 24 and have what is probably post-viral POTS, for reference). Above some people mention the controversy over exercise vs not overdoing it, and I think it's a hard balance to find. I definitely overdid it early on and probably hurt myself trying to do more and exercise more than I was capable of. I finally made a guideline for myself, to find a baseline - I wanted to feel the same when I woke up each morning. Fatigue, lightheadness etc immediately after an activity were fine, but if my activity level meant I woke up the next day feeling worse, it was too much and I had to cut back. On the other hand, I also made sure that I when I was feeling pretty good, I was always testing my limits - walking a little longer, working a little later, and seeing how much I could take. I guess this is pacing, and I think it's probably helped my recovery more than anything else. And don't give up!!! I'm about your age and this time last year I was so depressed - I didn't see how I would possibly improve, especially without medication, and was terrified that I was doomed to a home bound life. But I did - A LOT. Keep in mind that the majority of POTS patients do improve over time - maybe not as quickly or as easily as we would like, but it usually happens. In the mean time, try to stay patient and positive (easier said than done, I know). Good luck

I have an Omron 7 series and I really like it. They have a good customer service and a good warranty policy too - I started getting a lot of error messages at one point and they sent me a new one for free.

50/30 for at least 5 min on a tilt table test. Then it actually started to rebound. My doctor was surprised I didn't pass out. Luckily if I take in enough salt and water I don't have blood pressure problems in "real life".

I think this is pretty common - something about bluish light setting off migraines. I haven't had a migraine in months but when I was getting a lot I couldn't really use the computer either. It was unbearable during migraines and if I looked for more than a few minutes it would set one off. Light is actually my biggest migraine trigger and I can always tell when a migraine is trying to come on because I start getting light sensitive. So here's my suggestion: Download an program called f.lux. https://justgetflux.com You can set the light on your computer and make it warmer or cooler - warm light is usually better tolerated by migraine sufferers but the light from electronics is "cool"! It will change the color tones a bit on your screen but as long as your not doing like...color sensitive photo work, you should be fine. It's helped me SO much! I doesn't make looking at a screen during a migraine bearable, but it has definitely helped prevent them. Also a kind of bizarre suggestion but if you have trouble with screens - you can change the color balance your on TV and make it more red. I do this when I can tell I'm getting light-sensitive and it really helps (although I'm not sure my family appreciates it!)

Hey blue, I'm an American who has lived in Australia too, so I have ER comparisons! The longest I've waited at the ER is about 4 hours - actually also for a migraine. I live in a small city though and our ER is rarely that busy. I went to college in a large city and the ER was always packed but I never experienced much of a wait (nor did friends). Not sure how to put this nicely...we were near an area with a lot of patients with lifestyle or self-inflicted wounds/illnesses, and I'm fairly sure they favored people who had "normal" bad-luck issues. A nurse actually admitted that to me once. I was actually living in Syndey when I got POTS (although didn't get the diagnosis til I moved back) so had some experiences in the ER there too! One thing I noticed there that I liked was that they started treatment in the waiting room - once I got a saline IV and the other time I had a piece of oyster shell in my foot and I got a antibacterial soak. I waited for a few hours each time but thought it was cool they started treatment so early. I don't know if that was a hospital-specific thing or if it's standard in Australian but I've never seen or heard of it here. A few other differences between the systems: American doctors seem to rely much more heavily on nurses just in standard everyday appointments. Vitals are taken at every single American appointment, even when irrelevant to the issue. I almost never saw that in Australia - when I had bronchitis one doctor actually forgot to take my temp til I was walking out! Appointments here are longer - though we definitely pay for it! Very interesting to compare.

I second what Galatea said - since you mentioned headaches as well, maybe look into migraines. They're quite common in people with POTS. I never had one until I had POTS, then went through a period of getting them almost daily. Sometimes there would be minimal pain and my only symptoms would be weird visual stuff, sensitivities, and I couldn't think straight. Definitely book an appointment with a neurologist!

I've had this happen before a few times. Sometimes I used to get really nauseated and thirsty at the same time, and water would taste sickly sweet to me. So strange! It always seemed to pass. Really no idea what would cause it though.

My sensitivities to things are always neurological as well, and it's been explained to me that my nervous system is probably hypersensitive to pretty much everything, including a lot of medications that really shouldn't cause reactions. I would assume that can apply to probiotics as well - I've had reactions to some pretty simple supplements. Also, a huge amount of your neurotransmitters are produced in your intestines. Usually probiotics should help (improve mood, etc) but maybe they have some sort of opposite effect on you.

Thanks, Jackie, great info! I will have to call next week and ask him about it. I think he was fairly comfortable with the diagnosis based on my history and because I had a very dramatic response to 10 minutes on a nebulizer - my lung capacity jumped to almost 90%. From what I understand, that usually only happens with asthma. So I'm hoping he's right! But definitely worth a confirmation.

Thanks, Jackie! No, he didn't order a chest X-ray...what else should he be looking for?

I went to a new allergist yesterday to try to figure out my weird reactions to medications but while I was there he said he wanted to check my lung function as well, since I have a history of mild asthma. Well, turns out I actually have moderate to severe uncontrolled asthma and my lungs are only functioning at 60%! I'm 24 and have the lung capacity of a 69 year old. I'm sharing this because it's honestly something I never would've thought of. I don't wheeze and I haven't had any acute attacks or used my rescue inhaler in over a year. But apparently a lot of symptoms I was attributing to POTS - periodic shortness of breath, waking up with tachycardia in the night - are probably actually from asthma. I responded well to a nebulizer so it shouldn't be too hard to manage, but I'm so glad I found out. The doctor told me he thinks it's unfortunately pretty common among patients with complicated illnesses to miss the simple stuff - because we see so many specialists that attribute our symptoms to their speciality, and miss looking at the big picture. So this is just a reminder - make sure you get your symptoms thoroughly evaluated! Particularly shortness of breath, which I know is so common among us - if you had a history of any allergies, get checked for asthma, just in case.

Haha, Chaos, excellent point! Benign meaning not life-threatening, I suppose. I love it when people point out that at least I'm not dying. I AM very thankful for that...but kind of prefer my quality of life standard to be higher than "not dead". Enid, thanks for sharing, exciting coverage!

1. As everyone above mentions, passing out is definitely not a requirement for POTS. I've had so many times when I've thought "how am I possibly still conscious" but have never passed out. My body just won't give up If your doctor thinks that passing out is a requirement for a POTS diagnosis, you may want to consider getting a second opinion from someone who's a bit more familiar with it. A drop in blood pressure is also not required, in fact some definitions of POTS explicitly state that there should not be a drop in BP. 2. I think in some rare cases POTS can precede a diagnosis of MS, but I would not worry too much about it unless you're having other MS-specific symptoms. A lot of neurologists are very familiar with POTS, and in fact the top specialists are neurologists, so you may want to get your second opinion from one of them. They can also help you rule out MS. I had an MRI to rule it out when I was first diagnosed - very simple, and probably good to get anyway to make sure there's no other brain-related cause of your symptoms. 3. Yes, do ask about fibromyalgia, and also Ehlers-Danlos, which docradmd mentions above. If you're not familiar with it, it's a connective tissue disorder that's pretty common among POTS patients. A rheumatologist could probably help determine if you're hypermobile (one of the most common signs), but for a complete workup you'd probably need to see a specialist (usually a geneticist). Look it up online and see if the signs and symptoms fit with what you've experienced. 4. You may want to try to find a cause. Was this sudden onset or have you had lifelong symptoms? Was this preceded by pregnancy, an illness, a surgery, etc? Do you have other symptoms that don't clearly fit with POTS? Sorting through possible causes can take quite a while, and if you have a mild, easily manageable case, it may not be worth it to you, but it's at least something to think about.

6 + magnesium powder but just supplements...I would happily take more if it meant I wasn't having bizarre reactions to every medication ever!

I have hereditary hemochromatosis - which means my body stores too much iron. So prior to getting POTS my iron was borderline high, even when I was vegetarian. Now it's low normal...which might be like a version of low iron for me?? One of my doctors was pleased with my lower iron level and I was like uh...I've done nothing at all except get a chronic illness so I'm not sure how this is a good accomplishment! How is iron related to catecholamines?

Sometimes my pulse is quite strong and other times pretty weak. There seems to be no rhyme or reason to it, aside from when I'm having a serious POTSy heart-beating-out-of-my-chest moment. I used to obsess about it and now I just try to ignore it - as long as I have a pulse, I'm happy!

I'm having a similar problem right now! Sinus infection + bronchitis, with reactions to all the drugs they've tried me on. So frustrating. For cough, maybe try breathing in steam a lot, not just during showers. I got a little steam inhaler from the pharmacy that I can put menthol pads on, but you can also just put boiling water in a bowl and breathe it in for 10 mins - I think you can add Vicks to it too, it feels so good to breathe in. Also try menthol cough drops. Or spoonfuls of honey, not just in tea - some studies have shown is actually more effective than cough syrup. Sleep propped up as much as you can. And if it gets really bad, a final idea...ask your doctor for a rescue inhaler. They can cause tachycardia but if you can tolerate it, it'll have way less side effects than a systemic medicine. I have mild asthma and tend to get bronchitis a lot after colds, and using my inhaler ways seems to stop it from getting too bad.

I've wondered the same thing about finding a physician to help determine the root cause. I have a bunch of doctors and it seems like they all just know a piece of what's wrong with me. I've occasionally had inquisitive doctors that helped me to the next step, but I do think we have to do a lot of it own our own, and your best bet may just be finding a doctor that's open-minded to your ideas. I don't know much about Cortef and whether it can damage the nervous system, but I do think having a single trigger that turns mild symptoms more severe isn't uncommon. For me, I think I maybe had a genetic predisposition based on some childhood stuff + hypermobility, then got mono and never fully recovered, so more POTS symptoms. Then another virus just took me over the edge into full blown POTS. So I don't really consider the last virus the cause - it was an accumulation of things. BYou may be better off looking at your full history rather than just the Cortef trigger. I think neuropathy suggests some of sort immune issue, whether viral or autoimmune.