New To The Forum

[tanner]

Hi I'm a 38 year old female, mother of four. I began experiencing symptoms shortly after the birth of my fourth child (via csection).my symptoms include lack of sweating (I used to sweat profusely), lightheadedness daily, taccycardia, fatigue, nausea, weight loss, brain fog, memory issues, chest discomfort, weakness... I've been to cardiologist (sinus tachycardia), neurologist (all normal), gastroenterologist (colonoscopy/gastroscopy)... It's frustrating when they all say it's all in your head or it's anxiety but I know it's not. Do these symptoms sound at all familiar to any of you?

Thank you

Laura

[Faintinggoat]

Welcome to the forum. Some of them sound familiar to me. I too have lightheadedness, tachycardia, fatigue, brain fog, memory issues, chest discomfort, weakness, as well as headaches, fainting, and spots in my vision. A lot of us have had very similar experiences. My cardiologist told me that I was just aware of my own heartbeat, and had a non-problematic increase pulse rate. He told me that I should talk to my therapist aboutit. So he didn't say directly it was all in my head, but that's exactly what he was saying. It does in fact get frustrating because you know these symptoms are real, you have to live with them daily, and yet no one wants to take you seriously, just because they can't see it. Have you talked to your primary physician about seeing a specialists? Or getting a tilt?

Sending good vibes your way!

Fainting Goat

[Becia]

Before I was diagnosed with POTS, I was diagnosed with PVC's, although I had some of the same symptoms to varying degrees mentioned above. Two ablations later because about three weeks after the first one, I was passing out at work and home, and really struggling, I was diagnosed with vasovagel syncope. Put on Celexa, had my second ablation to fix more PVC issues that had popped up, and 26 days after that, after my friends couldn't tell if I was having a seizure or just unconcious because I passed out yet AGAIN, I was given a tilt table test, and didn't make it 30 seconds without my heart hitting 170. It seems like no one wants to make the diagnosis of POTS, or thats how I view it at least, because it has the possiblility of being very debilitating. I know it was for me, but knowing I can put a name to the problems I'm having helps... It helps my research, it helps focus my questions on therapies and how I seem to be progressing.

Keep a journal. Get second, third, fourth, fifth opinions. Keep seeing doctors and questioning everything your body seems to be putting itself through until you get the answer you're okay with, your confident is, and trust. I honestly didn't think of POTS, although I know a girl in our praise band who has it. My symptoms were never like her symptoms. But in the TTT, when the doctor explained what had happened when I got a little more with the world, everything made sense. I had another set of eyes who verified what had happened the day before in the clinic when I passed out on them, and they couldn't get a blood pressure. Doctors sometimes think they can say its in our heads, until it happens right in front of them.

I hope you get your answers soon. Sending good vibes!

[tanner]

Thanks for the info. My doctors didnt come out and say "its all in your head" but tells me that it's anxiety, hypochondriac, or that I should see a counselor. It's very frustrating because I live in a small city so most doctors here have no clue. They see normal results and just disregard my concerns. The symptoms I expetience are scary and constantly think I'm going to have a heart attack or pass out in front of my kids. I used to be very energetic but now it's a struggle to get out of bed or even shower some days. What causes the brain fog? Any ideas? Oh I also suffer from headaches, and tons of floaters.

Thanks again Laura

Anyone on here expetience loss of sweating?

[tanner]

Thanks Becia,

On my holt monitor it said insignificant sinus tachycardia, PAC and PVC with aberrancy (not sure what that means). Doctor still said it was normal. Where you live do you need a referral to a specialist or can you just make an appointment? In Ontario where I live we always need a referral and when a doctor says it's anxiety, it makes it difficult to get a referral. I feel like I'm chasing my tail:)

Thanks again

[corina]

Hi tanner, welcome to the forum!

[Becia]

Thanks Becia,

On my holt monitor it said insignificant sinus tachycardia, PAC and PVC with aberrancy (not sure what that means). Doctor still said it was normal. Where you live do you need a referral to a specialist or can you just make an appointment? In Ontario where I live we always need a referral and when a doctor says it's anxiety, it makes it difficult to get a referral. I feel like I'm chasing my tail:)

Thanks again

I was actually referred to my cardiologists via my primary care at the time. I went in with strep, and in the course of her examination, she noticed she could hear a third beat in my heartbeat, and started asking me some questions. About six months prior that, I had been in two emergency rooms with symptoms, which were all shrugged off as PVCs, was told I shouldn't feel them (but i so did, hard enough that they would shake me physically), and that people live with them like that everyday. She sent me to a cardiologist, who in turn, after trying two medications which failed, sent me to the EP cardiologist who did my ablations, and is now treating my POTS. I've been hospitalized twice because of my POTs, and the last venture I was told that the ablations could have possibly sent me on the downward spiral I'm in.

I've heard that its possibly harder in Canada to get referred to the right people for certain things, this kinda being one of them. I have a friend up there who's been struggling with depression and anxiety, and she had a hard time getting to the right people, but once she did, it has made all the difference in the world for her conditions.

Keep trying to get to the people you need. Tell them you want a second opinion from a specialist, if they will allow you to do that. I know my friend did eventually, and got her correct diagnosis and therapies going because she told them she wasn't leaving the office until they had it set up.

[BeforeTheMorning]

Hi,

Welcome to the forum! Many of those symptoms sound very familiar to me and probably to most of the other people on this forum as well! I'm sorry you're having a hard time with your docs. If you suspect POTS have you or your doctor tried doing a poor mans tilt test?

Lyla

[Bigskyfam]

Hi.all those sx minus sweating. My tilt table made a difference in my diagnosis, but still unanswered questions for my subtype/ cause of pots. Glad you found us. You aren't in this alone.

[castronovo112587]

Every symptom I have sometimes the sweating. Welcome to the forum. This place is great it has helped me so much.

[JenniferInOhio]

I was told it was anxiety and that I needed to see a therapist - that's the standard diagnosis for a young woman coming in with those complaints.

Anxiety can be a symptom of POTS, but it is NOT the reason for your symptoms. A regular cardio is not as good as an electrophysiologist for POTS.

My symptoms are tachycardia, exercise intolerance, heat intolerance, occasional lightheadedness, lots of pvc's and arrhythmias.

[SpinnyC]

Welcome to the forum. Those symptoms all sound familiar to me. It took me about a year and a half to get the pots diagnosis. I saw two neurologists who all said I was normal before my cardiologist got me an appointment with a pots specialist. It can be frustrating when doctors don't get it- I had one flat out tell me it was in my head and another suggest it as a possibility. I think doctors forget that feeling this sick and having no answers can itself be anxiety producing. It's not the cause of the symptoms but rather the result.

[Chaos]

http://circ.ahajournals.org/content/127/23/2336.full

Hi! Welcome to the forum, but sorry you have reason to be here. Yes, your symptoms sound very familiar. The above link is to a recent article that might be helpful for you to take to your physician. It specifically addresses the whole "anxiety" aspect of POTS. It also notes how many people develop it after childbirth and surgery. (Lucky you, you had both triggers at once!) If you have a helpful physician, sometimes bringing in articles like this from reputable medical journals will give them a starting point from which to begin diagnosis or at least referring you to the appropriate site to get a diagnosis.

One thing that you might hear is "that is a rare diagnosis so why do you think you have it?". Not so true. What is true is that it is rarely diagnosed...largely because docs don't know about it. So don't let them intimidate you if they try that tactic.

No one knows your body as well as you do. You've lived with it for 38 years. You know how it has felt and behaved in the past, and you know how it's working (or not) now. Be persistent in your search for answers. Unfortunately a lot of docs, when they don't have the answer, will try various tactics to make you feel like it's your "fault" i.e. it's something you're making up, or you're attention seeking, or you're depressed etc etc. I have a brother who is a doc and has told me that this was how he was trained in med school many years ago. The doc "is not allowed to not have an answer, so if you don't know, blame the patient." One would hope that this mentality would be out of medical schools by now, but unfortunately, I don't think it is yet.

It's hard not to get discouraged when you've seen a lot of docs and not gotten any answers. The trick is finding the RIGHT doc who can give you the answers you need. All the wrong docs don't count- other than for ruling out the things you don't have. After seeing many, many docs and being told very similar things to what you've heard, I was totally amazed when I finally saw the one who said, "well you sound pretty average for what I see in my practice". That's when I knew I was in the right place.

Good luck! Hopefully you will find help and encouragement here as well.

[tanner]

Thank you very much to everyone for the useful information. It's funny how doctors just disregard our complaints when they see a young person enter with such symptoms. My 24 hour holt monitor showed my heart rate up to 150bpm and said well I could get my heart rate up that high if I wanted to too. I told him I was just walking around. He reluctantly sent me for a stress test and even after the stress test told him I felt lightheaded he told me I did great. Strange. I used to play every sport in high school, work out and played women's soccer and never felt lightheaded. So walking/slight jog on a treadmill for 10 minutes should not make one feel that way. Anyway, maybe I will bring that article to my doctor but I'm sure he'll just tell me to stay off the internet because he told me he wasn't sending me for any tests. What type of doctor should I request to see? I notice many of you do not have weight loss or lack of sweating as a symptom. Are they infrequent?

Thanks again for all the great info. I just need a next step and find out how to get there with the GP I have.

Laura

[SpinnyC]

I had unexplained weightloss and I know I can sweat, it's just diminished. And if I do I just feel miserable because it takes so much effort to get there.

Have you had a tilt table test? That's one of the main tests they use for Pots. I see both a cardiologist and a neurologist. The neuro specializes in Pots.

[tanner]

No haven't done the tilt test yet as I'm having a hard time with my doctor referring me. I will try and get a referral from a different doctor. I do notice when I'm sitting or laying down my pulse is 60ish but when I stand up it jumps to the high 90's. Does that sound normal? Feeling frustrated with these doctors:(

Thanks again,

Laura

[JenniferInOhio]

No haven't done the tilt test yet as I'm having a hard time with my doctor referring me. I will try and get a referral from a different doctor. I do notice when I'm sitting or laying down my pulse is 60ish but when I stand up it jumps to the high 90's. Does that sound normal? Feeling frustrated with these doctors:(

Thanks again,

Laura

Yes. Those rates sound like mine. Climbing up stairs (13 steps in my house) can take it up into the 120's.

[Becia]

Standing up sends mine to 170 and up, sitting up I average 120-140. It feels like I'm constantly running a marathon.

[Chaos]

When I first became ill, I lost about 20 lbs without trying (and I wasn't overweight to begin with). I remember looking at my legs and thinking they looked like some of my cancer patients' with the muscle wasting that was going on. As far as sweating, I have patchy reduction in sweating, so some places I sweat less (as demonstrated with my Qsart test) but others I actually seem to sweat more than I ever did before.

Have you done the poorman's TTT yourself at home on several occasions and recorded the results? Lie down for at least 30 minutes (or better yet, do it first thing in the morning when you awaken). Take your HR/BP. Then stand at the edge of your bed for 10 minutes without moving. Try to minimize all the extraneous movements we tend to do naturally to compensate like wiggling toes, shifting your weight around, etc. Take your HR/BP at 1 min, 3 min, 5 minute, 8 min, 10 minute marks. Record these on several different days and see what you find.

Since a lot of us tend to be most symptomatic in the morning, that's a good time to do the test. If you find you tend to be more symptomatic at other times, then test during those times. Just make sure you have at least 15-30 minutes of lying down before you do the standing up part.

If you take this record in with the article it may help when you try to convince a doc that you have this condition. At least it may give them enough evidence to order a formal TTT if for no other reason than to prove you wrong. I've had that experience myself. Imagine the doc's surprise when I failed the TTT spectacularly. He came in after the test looking totally shocked and actually referred me out to a specialty center for further autonomic testing after that.

If your GP just won't work with you, you may have to find another doc who will. Either another GP or another specialist who is willing to be more open minded. Most of us have had to go thru multiple docs to find one that will work with us. It's the old "you have to kiss a lot of frogs to find a prince" kind of thing. If they aren't willing to help you, then don't waste your time and money with them. Move on to others who will. It's hard when you live in a smaller area. Even in a larger town where I live, I've had no success finding anyone who will really work with me so I travel out of state to see the 2 docs that are helping me now. It was terrifying to contemplate initially but I am so grateful now that I did it.

Your HR numbers are pretty similar to mine on my better days. On my worse days (without meds) my HR would be up in the 140-150 range.

[AllAboutPeace]

Welcome to the forum Laura!

I have had all of the symptoms you mentioned, including the weight loss and lack of sweating. The weight loss was leading up to and upon sudden onset of Pots. I didn't sweat for the first 10 months (until I started Florinef) despite the fact that I always had several layers of clothing on. I'm not sure if simply increasing low blood volume was what helped me to sweat again or if it worked indirectly - by allowing me to exercise more than 6-7 minutes at a very slow pace which then led to sweating. I have been more affected by the cold, than the heat and tended to have lower body temps when checked.

To echo what others have said - finding the right doc is soo important. I'm from a small city (in Canada) too, so the docs have no experience with Pots. It's unbelievable how different it feels to come out of my EP's office as compared to my local (and former) Pots doc. I would come out from my local appt feeling like 1) I was annoying him. 2) I looked like a crazy person because the more dismissive I felt he was, the more I tried to explain and of course Pots symptoms DO sound crazy to people who don't experience it. I've recently come across the term 'heartsink' patient and I feel like that's how he saw me - not because I demanded a lot of his time, but because he didn't know what to do with me.

The first time I travelled to meet my EP, she acknowledged how real and debilitating Pots can be. I didn't realize how much I needed someone to say that to me until I heard it. She has only ever had a few Pots patients, so she's not an expert, but she is willing to learn about it and do what she can to help. I would not hesitate to do some research (rateyourMD, etc) to find someone with good reviews that is close enough for you to get to. I travel four hrs to see mine and it requires planning, but it's worth it. Good doctors are out there so don't give up

I agree with Chaos, the poor mans tilt is a good place to start, if you haven't done it already.

[tanner]

Thanks for the great advice. I will try the self tilt test. Ya my 60-90 was today which is a good day. Some days I can reach 140 and up. That was just laying to standing within like 10 seconds. I initially thought it was cancer because of the weight then a heart attack because of the heart thing but nothing shows up. Ii even had a colonoscopy and gastroscopy for cancer and many other tests. I will ask my gastro tomorrow if he can refer to someone. Hope he feels bad for me and helps me out. Thanks everyone. How long does your weakness, lightheadedness and tachy last during the day?

[tanner]

Allaboutpeace, I agree with the doctors thinking we are crazy. When I walk into my GP's office I feel uncomfortable because they're not overly friendly to me and almost seem short. Yes my GP is very dismissive and says well you've got to give up at some point since no one is finding anything. Its very upsetting since I feel terrible and he doesn't acknwledge it. Thanks for all the advice:)

[tanner]

Allabouppeace, sorry one more thing how did you increase your blood volume because I am freezing all the time too. Very uncomfortable with all the other symptoms.

[tanner]

Were you guys able to gain back any weight? If so, how did you do it? Sorry about all the questions. You guys have been a huge help:)

[AllAboutPeace]

I understand your frustration with your doc for making a comment like that. I always think - would they give up that easily if it was their mother/daughter/significant other, etc. ?? I think not! Or if they, themselves, felt what we feel for even an hour they'd certainly be motivated to action then.

Here is an article from 2012 - a brief overview of Pots. It talks about volume expansion. For me, extra salt and water was helpful and IV saline was helpful (on the occasions that I had it); so, it was assumed that I had issues with low blood volume. Florinef helped me to hold onto those fluids and I had improvements in many of my more extreme symptoms. It's very individual though and while it works for many patients, it doesn't for others. There are some patients in which salt may not be recommended, so it's best to check with your doctor for approval based on your individual situation.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/

I did gain the weight back over the next several months. I think the salt/water was helpful to get my body somewhat stabilized and back to my baseline weight. I went through a lot of Boost (meal replacement) for awhile.

Feel free to PM me if there is ever anything I can be helpful with