I am going to see my cardiologist this coming Friday, and I worry that I don't know enough to know what to say when they seemingly dismiss my concerns. I know that something is wrong, but I don't know exactly what.
My current symptoms are that I have a very high pulse if I am in any position except a lying position. By high, I mean that standing my pulse is often in the 150s. It can easily be as low as the high 50s lying down at night, but more generally is in the 70s or 80s. I have spells where it's higher overall, such as 100 lying down, and then 160 or so standing. Other times it seems better, where it's in the 130s standing.
The other thing is that my blood pressure is acceptable in a lying position (varies but highest would be 138/86, can be much lower at times), but standing, the systolic decreases and the diastolic increases (up to 105 after walking around the house).
I've tested myself many times in lying, sitting, and standing positions, and at the very least, I think I have POTS. Although, I also seem to have a blood pressure issue, where my diastolic goes up and systolic goes down when standing and moving around.
I have had severe and fairly refractory anxiety issues, but those have gotten better over time. When I experience feeling incredibly out of breath or a racing heart, it is obviously not anxiety related anymore because I can respond more calmly to it than I believe most people would be able to. I cannot do many things. I shower infrequently because I reach a cardio max from it.
My history may be relevant: I had different types of anxiety from a very young age, most predominantly OCD. Was never treated, but was severe. But it never interrupted my life in a major way until high school. Starting around 14/15, I developed what I called panic disorder, because I assumed it was. I didn't have a doctor, so it wasn't as if it was checked--my dad self-diagnosed it. I had a really hard time sitting in classes. I would feel like I couldn't breathe and that I had to escape. I couldn't sit and listen. I had to get out. That started turned into feeling terror in a lot of places, feeling like I couldn't breathe and had a racing heart. I remember in gym class that first year never being able to catch my breath, but my dad had told me it was panic. I would have to jog in class and felt like I was dying. I started eating Altoids nonstop to feel like I could breathe, and I started making grunting sounds to feel like I could breathe, which were self-diagnosed again as Tourette's. I would put my shirt over my face to feel like I could breathe better, and was teased about this by teachers and students. In gym, I would raise my shirt over my face--it was just something to try in vain. I believed this was all panic, but looking back on it I'm not sure. I had been able to do 4-hour tennis matches, and quickly went to having to drop out of both tennis and track. I went from being a star-student, no ADHD symptoms at all, GPA-obsessed, to not being able to sit through classes. The teaches ignored my problems, and I would sit in the hallway trying to listen in or spend a lot of the day in the nurse's office.
I begged my parents to take me to a doctor, and they finally after a year of this took me to a psychiatrist. I never saw a medical doctor. The psychiatrist was foreign, didn't speak English well, and prescribed me Ativan. This was when I was 15 I think. I am 31 and still take 4 mg Ativan a day, along with 30 mg Paxil, and 37.5 mg Seroquel (supposedly for Tourette's--I never had problems with sleep as most people think I do since I take Seroquel--now I do have problems with sleep though!). I am overweight, extremely sedentary (do almost all my activities from a lying down position in bed), and I am addicted to the drugs and terrified to stop them, but I have only ever taken what is prescribed in the amounts that are prescribed. I did not realize how addictive they were until many years of being on them.
The difficulty with my heart has always been there. I had to drop out of college because of my anxiety, but looking back I can see it was there. I would get so out of breath walking to classes (this was 10 years ago), and I would end up vomiting on the way to class from being out of breath. Stairs were a huge challenge and I had to rest at the top of each set of stairs, in spite of being a normal-weight young person.
I have had holter monitors at least 3 times I think. Each time the holter monitor shows tachycardia, usually around 170 or so. But my cardiologist wasn't concerned because it was sinus rhythm tachycardia. The last time I saw him I mentioned POTS, and he said that the problem with POTS is that there is no treatment, so he didn't seem concerned. 3 years ago, I got him to do an echocardiogram, which showed a large left ventricular something. He said that it could be a normal variation and was sometimes seen in body builders and wasn't concerned.
My problems were getting worse so I went back last summer. He said he would set up another echocardiogram and for the first time a treadmill test. From what I have read I will reach the maximum they want you to on the treadmill test just by standing up. Unfortunately, they have canceled on me 4 separate times since then. But this Friday I am finally schedule to go in.
I still live with my parents, and I get tired of them telling me when I can't catch my breath or when I am super tachycardic (like 160s-170s) that it is just my anxiety. I actually think I am very patient and tolerant with the symptoms. To be clear, I am never that tachycardic when lying down. I don't know which happened first--this problem or lying down, but I spend almost all of my time lying down--seriously. I have trouble when I go to a class I take now just sitting up for two hours because my heart rate goes to at least 100 but often over from that. The more I can lean back, the lower my heart rate. It's very predictable.
I feel like I have a serious problem that no one has ever recognized. I am concerned that once someone finally realizes I have a problem, they will tell me that it is incredibly serious and dangerous. People tell me I should exercise, but I am terrified of exercising given how just moving around the house leaves me breathless. The problem is worse at some times than others. It's always there, but as I said, there seem to be spells where the base heart rate is higher, which makes it then even higher standing or sitting.
I am 31 years old and I have had a chair in my shower for 8 years because of this. I feel like I really need answers and to treat it. Also in case it's relevant, I found out 3 years ago that my testosterone level is consistently 130-170. Further blood testing pointed to a pituitary issue, meaning secondary hypogonadism. I thought this could be relevant to my heart issues and mentioned it to my cardiologist last summer, and he said "not my area, bud."
I feel like it could be relevant, though. I am not sure why I have low testosterone either. They want to treat it without knowing why and gave me a testosterone prescription, but I don't want to take it until I know what is wrong. They refuse to do a head MRI to look at my pituitary gland, which I think I should have before treating.
I used to feel like I was so incredibly limited by my anxiety. But as my anxiety has gotten much better, I feel like I am often stuck by my heart, which seems to be a very weak part of an otherwise fairly healthy body. I struggle just to put my sheets on my bed. I often live in squalor just because it's so hard to bend over and pick something up. It takes me up to 20 minutes to catch my breath sometimes. But I know I'm not panicked. In fact my GP told me I seem so much more relaxed, and I told him I don't feel physically healthy enough to have a panic attack anymore.
So--what should I be asking my cardiologist? Should I be asking for any other type of testing, insisting on anything?
**EDIT:** Thought I would add a theory I have. I lie in bed pretty much 24 hours a day. I eat in bed. Do school work from bed. Use my computer in bed. Watch TV in bed. And I have very little I have to do, so I can do this. When I get up, it's to get food, to use the bathroom, and sometimes to leave the house and to go to a class, for example. Last semester I took one class twice a week. I also see a therapist once a week. But I started thinking how for me, maybe my body is used to this. It's very equilibrated to lying in bed. And then the times I move--it's like a very sharp peak. I walk downstairs to get food, and then throw myself back in bed. Maybe my body is equilibrated to being in a lying position. I honestly feel like it would be exercise for me just to sit upright in a chair some of the day when I am not required to. But I wonder what the best exercise is, given that I have been this way for so long. There are times when I get up and move around that I seem to actually have an easier time after having been up for a while. I'm not sure if that's normal for most people. Maybe it takes my body longer to adjust to being up because I lie down so much? I don't know.
**EDIT 2:** To expand a bit on how I have "spells," where it's worse: Basically, I have had periods where my resting pulse lying down has been 100-110 or so. Then when I stand it's even higher than normal. In fact, I was that way for several days until just a couple of days ago. That's when I was really, really out of breath recently. Stress could have been a contributing factor, as I was away from home on vacation in a winter cabin. But I have had the spells out of blue at home, as well.
Today was really weird, though, and was kind of the opposite of one of those spells. It's something I've also had before, although somewhat rarely so I don't have great memory of how it usually plays out. But today I was sitting upright and standing a lot, and noticed I felt more faint than usual. When I was sitting, I checked my pulse by hand and it was barely 60, which is very unusual for me. Usually sitting will get it to at least 100. I took my BP and pulse both sitting and standing, and the pulse never got over 86! I was flabbergasted. The blood pressure was actually normal for a change. The highest the diastolic got was 90 standing, but usually below that. I have not seen my pulse that low sitting or standing in a long time. I was very, very stressed this last week and it was either causing the BP and pulse to be higher or the BP and pulse being higher were causing the stress. But I feel physically deflated now. I have a hard time putting this feeling into words. I described it once as being on an airplane and suddenly all the humming, engine sounds disappeared. It would kind of freak you out a bit. It's like all the pressure in my body disappears. I call it my "no-humming" or "dead fish" feeling. Sort of a bloodless, lack of pressure feeling. It's not that I feel tired or weak. Just that I feel like a balloon that is completely deflated in a very physical sense. And I'm very good at telling that my pulse and BP will be low in that state. Right now lying in bed my pulse is between 54-56, which is obviously quite low compared to it being 100 plus lying in bed just a day ago. I've gotten freaked out by this feeling before and call it an "anti-panic attack," becoming freaked out by parasympathetic nervous symptoms. Anyway, I don't suppose it's dangerous; although this evening, I started wondering if it could be something electrical and that both the up and down are related to each other through an electrical problem in the heart. It's interesting how it seems to get "set" at certain baselines. Like most of the time lying down, it's in the 70-80s, but then it will get a spell where it's "stuck" at 100, or now it seems "stuck" at 55-60. I read something about an SA nodal block that sounded like it could be related to that. I really wish I had been wearing a holter monitor over the last few days, would have been interesting. One thing that scares me is that cognitively I've felt a bit impaired since feeling this "no humming" feeling, especially this evening. Hard to focus on higher-level thinking. Although, I wrote out this diatribe. I'm writing here adding this in case it prompts any other replies, but also because this has turned out to be a good repository for my info that I would otherwise probably not have coalesced for my doctor.
**TL;DR:** I'm sorry this was so long. The short is that I've had anxiety issues for a long time, but maybe they were heart issues first. I don't know. I'm on a lot of bad drugs, I have low testosterone, and I spend most of my time lying in bed. Doing simple things makes me really, really out of breath. And my blood pressure (specifically diastolic) and pulse are way too high unless I am lying in bed.
Okay, so I started typing out an answer to you, but my tab froze so I'm attaching a screen shot of what I had typed [here](http://imgur.com/2eYZeI3) and I'm going to continue the rest of what I typed/summarise what I already said.
First and foremost I think that you need a new cardiologist, and secondly I think you need to ask your (hopefully new!) cardiologist about the condition [Inappropriate sinus tachycardia](http://en.wikipedia.org/wiki/Inappropriate_sinus_tachycardia), because it certainly sounds to me that that is what is going on here. There is a decent amount of comorbidity between IST and POTS, which it also sounds like you have.
The good news is that if you do have IST it is not going to shorten your lifespan and does not make you more at risk of heart attacks/strokes/etc BUT the negatives are that it is notoriously difficult to treat/manage pharmacologically, and many doctors and other healthcare professionals simply do not know about this condition.
IST patients usually take years to get a diagnosis, and most patients are females in their 20s and 30s (which you yourself are).
Do a bit of research and see if that sounds like what you're currently experiencing. Print of the research you find and take it with you to the doctor, because as I said many don't even know that it is a thing! Clearly what you are experiencing is abnormal, and the doctor should do everything in their power to help you get back some normality.
Please let me the outcome/if this sounds like what you have!
Also feel free to ask me any questions, I'll do my best to answer them!
just describe your symptoms to your doc, he will figure out what condition you have. tachy of 150 bpm while standing is way too high. he will probably put a 24/48h EKG on you and 24h BP, afterwards you discuss the findings and will come up with some answers.
also out of curiosity if he does a 12-lead EKG could you post it? and maybe excerpts of your 24h EKG if there are interesting parts.
> I have had holter monitors at least 3 times I think. Each time the holter monitor shows tachycardia, usually around 170 or so. But my cardiologist wasn't concerned because it was sinus rhythm tachycardia. The last time I saw him I mentioned POTS, and he said that **the problem with POTS is that there is no treatment**, so he didn't seem concerned.
OPs doctor doesn't seem very helpful, and has given her wrong info (or info that has been misinterpreted by the patient) about POTS.
You're welcome. I'm very lucky that my GP knows his limits and referred me on to a cardiologist as soon as it was clear that my symptoms were ongoing and not caused by any other condition. Within 5 mins of seeing the cardio I had a diagnosis and came out of there with a treatment plan that has improved my life immensely. I sincerely hope that you get a diagnosis for your condition(s) soon!
P.S. have you considered using some light weights while lying down, since you mention that you don't get as tachy when lying.
You and I have the same exact thing! It seems I just read my own story. I am 31 too. I went nuts over my heart rate at times it would go into the 200's. I went to so many doctors, ER's, electrophysiologist.... I noticed my heart has been much better now that I keep my potassium in check (it is often low) and once I had a blood transfusion I felt sooo much better my blood count was a 6, I take iron pills when I have my heavy periods now (sorry tmi). But, check everything that could cause a fast heart rate and don't ignore if you are anemic or have low potassium. Also I take metoprolol which helps too. Now my heart even walking over a mile home at a decent pace feels perfect. I started with my heart issues in 2009, nothing circular all just rhythm.
While I was looking on this new My Chart system one of my doctor's offices has, I found the results from a 12-lead EKG I had in June 2010. I've had other tests since then, but the results on this site only show up for a particular group of doctors. I can't remember the context of why I had the test done. I may have gone to urgent care or the ER feeling short of breath. Not sure. The results are:
T Wave Axis
- NORMAL ECG -
Thank you for the link to DINET. I will take a look at that.
I saw my cardiologist today, and he was reassuring after my echocardiogram and stress test. My pulse standing was 120 and got to 184 during what I was able to do on the treadmill, but he said everything was in sinus rhythm. He recommended light exercise and what he called a homeopathic dose of a beta blocker (I have the script somewhere, but forget off the top of my head which one, but not Inderal. He said this one is more selective.).
I asked him point-blank whether I had POTS and he said I had features suggestive of it, but he didn't want to commit to a diagnosis for some reason. He said that I am definitely out of shape, but gave me the go-ahead for exercise.
It's interesting you mentioned a recumbent bike because that was my first thought too: why not exercise in a way where I can strengthen my overall cardiovascular system without getting myself out of breath feeling before I even start exercising by having to be in a standing position? I feel like I'll be able to sort of sneakily improve my cardio-system from a position which doesn't overly tax me, which will then make those taxing positions easier to handle, perhaps.
I think I am going to buy a recumbent exercise bike. I have a thread here asking about a particular model I was looking at from Costco. It's much more expensive than other models on Amazon, and I'm not sure if that's much better, but Costco is also really good with returns and support:
As far as water, this is something I do already. I have found that drinking large amounts of water helps. I don't have a problem with low BP, so you're right, salt would not be good for me. As far as testosterone, I'm still taking a wait-and-see approach. Maybe getting more physically active and in shape will help somewhat with those numbers. I also still would like an MRI of my pituitary gland before committing myself to long-term testosterone therapy.
For your curious questions: I am not unusually flexible as far as I know; I am extremely pale (but I also live in a dark cave of a room and rarely go in the sun) and it's not translucent; I don't believe I am unusually sensitive to medications (except for epinephrine when it's part of an anesthetic--it makes my heart race like crazy and drives me crazy); I definitely get enough calories (I am overweight-237 lbs, 6'3", largely because of my diet in which I binge eat after taking Seroquel). I'm curious which syndrome those symptoms fit with?
I have been tested for XXY, which I am not. Just regular XY, which actually surprised me, lol.
Thanks for writing! And let me know if you have any recumbent bike suggestions.
EDIT: The drug he prescribed is metoprolol succinate, at 12.5 mg, which is apparently a small dose. To be honest, given how nervous I am about trying new drugs, I probably won't take it. Or, if I do, I would take even half of that.
Thank you very much! I hadn't heard of IST, and this will be very helpful to bring up with the doctor. I know you said I should see a new cardiologist, and I will if this isn't a productive visit. A lot of what you wrote out fits with me. I remember when I had the holter monitor my average heart rate was about 95 over 24 hours, but that was taking into consideration that I spend most of my time lying down. Thank you again. This was exactly the type of info I was looking for before my appointment.
I had the 24 hour EKG not too long ago--last summer. They may do it again. I've never had a 24 hour blood pressure monitor. Didn't even know there was such a thing. I will ask about it.
I'm not sure if I've had a 12-lead EKG before, but I can ask about it. I know they've done a regular EKG (the non-holter type, where they wheel in a machine and print something out), and from what they've told me it's been normal (apart from being fast), but I know that is just for 10 seconds or so.
Thanks for the help. I'll post anything I'm able to.
Well, he said that I could do what I already do which is to drink a lot of water (I read that as a home remedy) or that I could take Inderal, which I tried tiny doses of before, at 5 mg. He doesn't like Inderal for some reason.
Also, I'm male. I must have said something to give another impression at some point, not sure how.