lejones1

I just had an echocardiogram a couple of weeks ago. It was very simple and stress-free. Mine was scheduled for an hour but only took about 30 minutes (although I didn't have any of the extra stuff done that Zap mentioned.) You'll just be laying down in a dark room, so you should be pretty comfortable. You'll probably have to hold your breath at different points for images to be snapped, but nothing too bad.

Make sure you get a bag a saline after the TTT to help you recover! I don't know if you had that done after the first one, but it makes a world of difference and should help you feel better while you're waiting.

Good luck!

I went under full anesthesia about 8 months ago. I was still searching for a diagnosis but I definitely had POTS at the time and I'm pretty symptomatic (largely housebound).

Anyway, it went just fine for me! No complications and I felt normal (for post-anesthesia) afterwards.

Good luck!

Yes absolutely! It's hard not to be scared after reacting badly to so many different things. I ended up in the ER one night last week after taking a simple vitamin supplement.

I think the worst part is that my family and boyfriend don't understand it. They think it's just lack of will to get better and say "well it won't kill you!". But as bad as I feel right now, at least I know what to expect...it's hard to take something knowing how much worse it might get.

Sometimes I does pay off though. I took Imitrex for the first time last week - I figured migraines are so bad, it couldn't be much worse, and amazingly, it worked without side effects. I guess that gave me some hope but I'm still afraid of daily meds.

Good luck if/when you start midodrine!

I just want to add that tingling in the scalp can occur with migraines - i get it it every time I have one. I'm certainly not suggesting that you're having migraines, but they are a form of autonomic dysfunction. I'm not sure if it's the blood flow issues or nerve issues or both that causes it, but it sorta makes sense that it would occur with POTS too.

I had sudden onset POTS and my symptoms were extreme fatigue, sudden weight loss, night sweats and swollen lymph nodes, so among other things, I was looked at for lymphoma. I'm not sure why your doctor specifically suspected HL, maybe you have other suggestive symptoms, but your symptoms are also consistent with some viral infections, like mononucleosis. There are also a few autoimmune disorders that can cause a swollen spleen, fatigue, etc. Even if there are abnormalities on your blood test and they don't point to a virus, that's not a definitive diagnosis for lymphoma. From what I was told, It can only really be diagnosed through a bone marrow biopsy or lymph node biopsy.

Good luck this morning, I hope you get positive news! And if not, everyone above is right - HL is one of the most curable cancers, very high treatment rates. Will be praying for you!

A family friend saw Dr. Henderson and absolutely adored him and said he was very good about coordinating care with her doctors at home. He did a cervical fusion and also tethered cord surgery - I think she said it was about $80,000 but I believe that was for both. She had some complications in the year following surgery - her incision didn't heal properly and it turned out there was an infection. So she went back for another surgery, but all is well now! I know it made a huge difference in her quality of life - there were times pre-surgery when she was bedridden, housebound, and now she's living a pretty normal life - traveling, socializing, much different than before.

Katybug, do you know what causes that exactly? I've had some flushing episodes like what you describe - really red face and shivering all over. I was at the doctor once when it happened and the nurse thought I was having a seizure because it came on so suddenly and I was shaking so much. I also feel really out of it and exhausted when it's over. I don't think I have MCAS - never been tested but I don't think I have the symptoms and the flushing only occurs every few months during bad POTS flares. I've asked a couple of doctors and none of them had any ideas what would cause them, but I'm very curious!

Here's an article about people with POTS and MS: http://www.medsci.org/v07p0062.htm

I was nervous about this too and had a brain MRI to rule it out. When I talked to my neuro about it he said that MS can initially present as POTS but it's very rare in the absence of other more specific MS symptoms. He hadn't seen or heard of any such cases but since MS can cause autonomic dysfunction it is possible, and he still checks all his POTS patients for it.

I had a sleep study done less than a year ago because my sleep quality is horrible. It takes me a few hours to fall asleep some nights. During the sleep study, I woke up every 7 minutes in the night. That was with sedatives for the study! My NE levels are normal. I just flat out can't sleep well. My sleep doctor won't even let me drive anymore because of my poor sleep and fatigue + brain fog issues. I haven't driven in over a year now. :/

weathermandj, have you ever taken your HR during the night?, I just got a HR monitor and have been wearing it to bed and noticed that HR is getting up to 140-150 while I'm sleeping (I set it right before I fall sleep and stop right when I wake up, so I know it's not from moving around). So the last few nights, if I woke up, I looked at my wrist and sure enough my HR was well above 100. I don't even feel like I sleep that badly - I usually only wake up once or twice a night, although I am tired in the morning. It would be interesting to know if you're getting similar surges at night and maybe that's what's waking you up so frequently.

I watched this the other day: http://www.csfinfo.org/node/299, found it linked somewhere on here. That doctor seems to think people with POTS (or I guess just autonomic dysfunction) have a bunch of adrenaline surges at night which either wake them up or cause micro-awakenings (so they don't even realize they're awake) and are never able to get into deep sleep, which then causes fatigue. Pretty interesting.

I don't have a medical background, so I may not be correct, but this is what I think the article says: POTS patients perceive their sleep quality to be worse and there are two things going on. Part of it is just perception: patients think it takes them much longer to fall asleep (subjective SOL), but the amount of time is actually comparable to controls. But also, POTS patients really do have worse sleep efficiency, and there's a correlation between objectively measured sleep efficiency and how tired patients report they feel. There's also a correlation between standing NE levels and how long it takes patients to fall asleep - so some patients really do take longer to fall asleep. And there's also a correlation between standing heart rate and waking up in the middle of the night. So basically...POTS patients do have poorer sleep quality, for a few reasons, but it's also exacerbated by a misperception of how long it takes them to fall asleep.

Yep, I had this problem, although mine was a typical female yeast infection so I'm not sure how helpful my advice will be. After 9 months I finally got rid of it with boric acid, but that's poisonous to ingest so wouldn't be helpful for intestinal candida. Are you still on probiotics? Can you tolerate them? That was going to be my next attempted therapy. My doctor found some studies that showed probiotic treatment had ~80% success rate for vaginal candida, maybe it would be as effective for intestinal. I'm not sure what strains were used, but maybe you could research it/talk to your doctor about it?

I don't know much about deep breathing and the ANS. But I do know that deep breathing can be a seizure trigger - it's one of the things they have you do during an EEG. And your reaction sounds potentially seizure-y. Do you have any history of seizure activity?

I guess one other thing I can think of...deep breathing is supposed to lower your BP. Maybe you're having an exaggerated response and your BP is crashing?

My PCP looked at my nails at my first appointment and noted at I had lunulas (that's what the half-moons are called), among other things. He's a very mainstream doctor, so I suspect there is a genuine reason to pay attention to it, although I didn't ask why. Nails can tell a lot about your overall health.

Maybe look at your son's thumbs and see if they're there? I think they tend to be more noticeable on the thumbs (mine certainly are). If not, maybe ask your doctor? Or it may be nothing, maybe your son's have always been faint.

You said your family used to joke that you're allergic to the sun, but that's actually a real thing! I have a friend who gets hives if she spends too long in the sun and it's definitely a sun allergy, not heat. I'm not sure if it's even connected to skin tone, because she tans quite easily. I just Googled it (http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/25934.html) and it seems to be at least partially hereditary so that could explain why your daughter has it too. I've heard of this in other people as well and don't know that it's connected to POTS at all.

Sitting in normal chairs definitely makes me symptomatic. I had to quit a desk job because I just could not sit up all day. I don't get pain but by lunchtime I was always light-headed and exhausted and definitely got pooling in my legs and feet. Prolonged sitting also gives me headaches - I'm not really sure why but they've only happened after long days of sitting - kind of feels like I don't have any blood in my head

For me, I think maybe it just has to do with my legs being down? I can sit up on a couch or bed with my legs stretched out all day. One of the things I noticed even before my diagnosis was that I'd changed how I was sitting. I would always sit cross-legged or with my legs up to my chest in my chair at work (I know it sounds weird but I'm young and flexible) and I could only sit on our high kitchen stools for a couple minutes before feeling bad. I think this was probably my unconscious way of preventing pooling.

I haven't seen any change in this regardless of my behavior, it just waxes and wanes - but I'm a newbie to POTS and haven't found a good treatment, so maybe don't listen to me. Your son's PT sounds very promising - wonderful to hear that he's made so much improvement and I hope it continues! Also just wondering, where is his pain - in his legs or his core?

I know a few people who recently had some sort of cross between a cold/flu thing. I guess it was like a bad cold, but with low grade fever and body aches. It seemed to be viral and was self-limiting. I think their worst symptoms lasted for 5-7 days then turned into coughs for a couple of weeks afterwards.

It sounds like maybe a bad cold - colds can really be caused by hundreds of different viruses, so you might just have a particularly nasty one.

Take care of your symptoms and hope you feel better!

I have post-viral POTS and I know because..well it was pretty obvious! I'd always been really healthy and then one day I got sick but never really got better. I can actually pinpoint to the hour the first time I had POTS symptoms - I didn't know it at the time, but I suddenly went from having "normal" sick symptoms to thinking "omg what is happening in my body", which I now associate with bad POTS flares. I guess to further confirm this, I don't have any personal or family history of autonomic issues or any related disorders (although there some been some autoimmune things which I suspect may have predisposed me to it). I think this is probably the easiest cause to determine, but it sounds like if yours developed over a decade it's probably not the cause for you.

Unfortunately, I don't have advice on what to do if it keeps getting worse. I've only had it for 10 months and been diagnosed for 2. Maybe find a doctor to help you investigate the cause though? Maybe you can find an underlying cause that can be managed or treated! Have you had testing done to determine other things - like if you're hyperadrenic, low blood volume, have neuropathy, etc.? I haven't had any of that done but maybe it could be helpful in determining a cause.

Good luck finding a cause and I hope you reverse the trend of getting worse!

This happened to me a lot during my first few months with POTS - woke up almost every night sweaty with chills (but no fever) - and a few other times during bad spells. I'm sorry your son is going through this right now, I know it can be really uncomfortable and kind of scary because of the things night sweats can be associated with. I'm almost positive mine was from POTS - as far as I know, I don't have any other health issues that would've caused it.

I don't know why it happens, but I hope you can figure it out and get some relief for your son!

I was vegetarian, "almost" vegan for a year and half, actually right up until POTS, partially because of things I'd read in the China Study. I didn't read the whole book but read excerpts and it's really fascinating. I sometimes wonder why we've evolved to eat meat at all if it's really so bad for us, but I found the dairy portions of the book more convincing. Also can't help but wonder if there's something about our current factory farming system that exacerbates the negative effects of the animal products on us, or if we're just eating so much more than we used to.

I started eating animal products again soon after I got POTS (I had sudden viral onset) because I was rapidly losing weight and it became easier to just stop limiting my diet. 10 months later, I'm still underweight and still eating meat/dairy, but going vegetarian really changed the way I eat and cook - meat is more of a side now and I only eat it a few times a week. It's something I would like to try again in the future, but I'm kind of at a point where I think getting to a healthy weight will have a more immediate positive effect on my life and it's just easier to do with meat/dairy.

To be honest, I don't think I really saw any immediate effects from it. I didn't have any underlying health conditions, so maybe that's why. I'm more interested in the long-term repercussions of the diet, I guess. For those of you on it now, what changes have you seen in anything other than weight/cholesterol? Any POTS changes?

Two blogs I would HIGHLY recommend to anyone going vegetarian/vegan are Oh She Glows (http://ohsheglows.com/) and Peas and Thank You (http://peasandthankyou.com/). I think Angela on OSG has slowed down with posting because she's doing a book deal but some of her older stuff is great - try avocado cream pasta! I've tried some recipes on there thinking there's no way this can taste good (chocolate avocado torte?!) but everything has been amazing. Peas and Thank You is a mom with a two young kids, so all of her recipes are really family friendly - great ideas for getting hesitant husbands and picky kids on board! I think she's gone back and forth between vegan and vegetarian so there's some of both but she always gives options. And both of them, especially OSG, give lots of allergen-free options.

Yes, I just started getting this on and off a few weeks ago and it's kind of alarming. I had an EEG 2 weeks ago and the flashing light portion made me feel so sick I thought I was going to pass out, but it came back normal. Is yours just to screens or to other light as well?

Canadiangirl, can dry eyes cause really painful tears? I also noticed for the last few weeks that my eyes BURN whenever I tear up or cry. Kind of like getting sunscreen in my eyes, but there's nothing on my face. (Sorry to hijack this thread with my own question!)

I have to agree with some others than the hospital may not be your best bet. ER docs are not really meant to be diagnosticians, they're meant to save lives in urgent situations. And it's rare for them to know anything about POTS and autonomic issues. The one time I've been to the hospital with this, the ER doc treated me like I was magical unicorn or something - "Oh wow, I've read about POTS but never actually seen it!" That's not really who you want to be running tests on you. Even if POTS isn't your issue, it sounds like whatever is going on is rare. If you get admitted to the hospital, you'll be seen by whoever happens to be in rotation that day - not someone who specializes in your issues.

Have you considered just making a ton of doctors appointment? Try to get in with multiple cardiologists, GPs, maybe a neurologist since you do have a POTS diagnosis (even if you think that's not your issue, maybe they could help you rule it out), until you find ones that you trust and are willing to pursue your case. I saw over 15 doctors before I was diagnosed with POTS (I rarely get palpitations so I never thought to see a cardiologist). My gynecologist, of all people, was the one who finally helped me get a diagnosis - she made me appointments with other doctors in her system and told them that even though all my tests thus far had been normal, she was convinced I wasn't making it up. It sounds like you haven't found any doctors you really trust and I think that's so important. I know it can be expensive and time-consuming to doctor shop, but I think it's a much better alternative than trying to go through the ER and worth it once you find the right person. Look for autonomic specialists but also just ask around among your family and friends for names of doctors they trust, doctors who are willing to investigate unusual cases.

Also, this may sound strange, but try to understand things from the doctor's perspective. Some doctors are really unsympathetic jerks, but a lot of them are just unsure of how to help and following protocol. Autonomic disorders aren't very well understood even within the medical field. For a lot of us, we have tons of tests that come back normal. We have such weird symptoms that affect so many areas of the body that it's hard to put together. And doctors have to be careful of over-prescribing testing when it's not warranted - it's expensive, puts a burden on our healthcare system, and in some cases puts the patient at unnecessary risk. I'm not saying this justifies doctors giving up on patients or blowing off their symptoms or sending them away - but I do think if you go into appointments trying to understand where they're coming from, it can help a lot with rapport and getting them to trust you - and that can help a lot in getting the tests you want.

I'm sorry to hear your going through this right now, I know it can be miserable and frustrating and feel like the whole medical field is ignoring you. I've had days and weeks where I felt so sick I would think "there's no way I'm going to survive this", and I think a lot of people on here have had periods like that. But thankfully, it's always passed. I'm sure it can be even scarier for you since you fear you've been misdiagnosed but try to focus on the fact that there's a lot of tests you have had done and a lot of serious things that have been ruled out. And good luck finding good doctors and answers!

I get this too, just in my legs, and it sort of feels like I just went for a long run or something, except oh wait I never do that anymore!

And like boymommy, I've been told that it doesn't seem to be actual neurological muscle weakness, but I've never gotten an explanation.

I do and it's great! I think whether it's worth it really depends on your eating habits and what you want it for. It's really good for juicing, if you want to leave the fiber in. It's also great for chopping things really finely (nuts, etc) and making really smooth dips. For smoothies and soups (unless you want them SUPER smooth), you could get the same effect for a lot less money with a regular or hand blender.

And a few more things about wisdom teeth infection - they are often dependent on how careful you are after the surgery (yes, I'm admitting I probably didn't take the best of care!). And when you hear those crazy stories about tooth infections getting into the brain, it's almost always because the person doesn't take antibiotics in time. If they're caught early, the treatment is simple.