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Hey Emma, I remember having some of the similar type of chest pains as what you have posted about in the past. I had many heart test done (30 day holter, tilt table, treadmill stress test, echo to check for PFO) and all they found was that I have a PFO and a bicuspid aortic valve (which I had known about for years) but no real explanation for my chest pain/ pressure other than somehow it being related to POTS or a type of microvascular angina. I found that a calcium channel blocker has helped me a lot, but I still have days that are randomly worse, or rather a series of days that are worse, where it is almost like my POTS hr variability seems to set things off. So I'm always having to notice the days where my chest pressure seems to come up again and be vigilant about getting it under control, so for me this means taking an extra dose of the cc blocker throughout the day, taking an aspirin, and wearing compression stockings (all okayed by my doctor). If don't take some of these measures then my chest pressure tends to last for days at a time, and seems to have more of an ability to worsen more often. And I too have a strong migraine history but was not told if this would had any relation or not.

If I am particularly symptomatic or have weird migraine stuff happening then I will notice one of my eyelids seems to droop a bit throughout the day. I would also say that sometimes my eye muscles (not eyelids) will feel strained easily some days. Not sure if any of this is similar.

I do not have experience with chiropractors but I would say to give it a couple of weeks. I have had many strange symptoms, sometimes symptoms cause specifically from me doing something physically that I knew I shouldn't have been and I get the thoughts of "did I just mess something up that will keep me forever feeling like this" and usually after 2-3 weeks things tend to normalize to just my usual level of dysfunction. It might be good to just give it a bit of time and see how your body continues to respond, and obviously you know your body better than anyone so if something really feels off/ wrong you will know that best.

Hey Draven one other thing to consider in the mean time, if you haven't tried them already, is wearing compression stockings and see if they help you to be more mentally functional when you are upright. They are an attempt to combat the blood pooling caused by POTS.

Same here, sleeping in always makes me feel more hungover throughout the day, even if it is just that one extra hour of sleep.

Hi Draven, welcome to the forum, I'll just share my personal experience; I was put on a beta blocker after my POTS diagnosis and it did lower my bp and I believe made my hr spikes when going from sitting/ laying down to standing a bit less of an increase than it typically would be. However the beta blocker made me feel like I was constantly in a cloud and it made it so I could only focus on one thing at a time so I ended up getting off the medication. Typically though not everytime I stand up will I get the +30 hr increase, many times it will be closer to 20-25 point increase. My hr overall is just very reactive, so if I am anxious or stressed it just stays high for a while or can pretty immediate increases in those situations.

Yea word dropping is a 'normal' problem for me, but I really noticed it when I would be in class answering a question and kind of feeling like I wasn't sure where my thought stream was going, or I would forget a word and just have a quick blank out moment and have to try and talk around it.

I had a similar reaction to beta blockers (atenolol) I constantly felt like I was in a fog, and it was impossible for me to focus on two things at once. It was like always being in a cloud throughout the day.

I forgot to add the shower thing you mentioned I notice that a shower is the one thing that almost always helps me a bit, I have no clue what is physiological happening that makes me feel better from them, but it almost seems to revitalize my brain a bit.

Yea they do use it to treat vasospasms and microvascular vasoconstriction, and I think prinzmetals angina (definately spelled that wrong), it is not targeted specifically just to your heart though; in the past I've had it prescribed for migraines. And yea I don't notice any difference in blood pooling either.

I didn't find anything in particular that made it go away other than avoidance and not pushing my body too far physically during any given day. Typically if I lay down and my head is below my body at all, even just like an inch I can get that vertigo feeling so typically if I'm laying down I sort of prop myself up, I also have migraine associated vertigo which just comes and goes on its own accord; it can be quite strange, sometimes it feels like the floor is moving under my feet or sudden "drop" feelings when standing, but haven't found anything that helps those episodes.

I would sometimes get vertigo when I layed down flat, not exactly sure why, but it was similiar to the boat rocking sensation, or just the sensation of this off balanced "motion" in my head.

Hey Josh, definately can relate to how you feel, I remember when I first got sick going back to college the following year being completely changed internally, and not being able to go drink, stay out late, be with friends as much as I was before, it was very much an uprooting of what my life used to be and a very distinct change in my identity. I've found I really have to pick and choose who I spend time with and what the occasion is, just because there are so many things I cannot do. I was asked to go snowboarding yesterday by a friend, definately had no ability to keep up with that physically, have also had to turn down going to concerts, golfing, even just going out a second night in a row. I began just spending time with fewer friends who gave my life more value.

I'm on verapamil which I believe relaxes the muscles of your arteries and causes some vasodilation, but much less so than something like nitro that people take with heart conditions. It doesn't help any of my POTS symptoms other than chest pain/ pressure.

Hey ashyea, I've personally had some experience with Mayo clinic; my migraine specialist is there and I went through autonomic testing there as well, and had an appointment with one of the autonomic specialists. They diagnosed me with POTS based on their tilt table test and my patient history. I would say my experience with Mayo is overall good; they are the best doctors I've been to, and over the years I've had tons of tests done up there, which is good because they many times schedule a lot of the testing in the same week you have appointments. With the autonomic specialist I had to wait 6 months to get an appointment, he was the most knowledgable Autonomic specialist I've been to, but it was more for diagnosis purposes than treatment, however he said whichever doctor that I had back home that would oversee my continued treatment, he would be willing to communicate with them about my case and diagnosis. I don't think I'll ever find a "cause" for my POTS, and I'm still struggling to find a medication and exercise-like regiment that works and is sustainable, but many of my tests at Mayo ruled out other possible conditions and causes.

Hey Josh, I don't think that your story is very different from many of us; it took my doctors 4 years till they even considered autonomic problems as a diagnostic option, and my parents only believed that my symptoms weren't "just in my head" after a formal diagnosis was made. It is a difficult path because many doctors don't know about POTS, and since POTS mimics other more common conditions it is easy for them to diagnose you as having those. I found I really have to explain how i feel on my worst days when i go in for appointments, or my doctors won't always understand the full picture. I think tilt table tests are the only good way for diagnosis, when they do the lay down stand up thing at appointments it's not really accurate enough to show my hr increase. The most important thing I've had to ask myself is how are my symptoms affecting my quality of life? And usually that helps me to focus on why I find it important for myself to keep going to doctors, even after many less than helpful appointments. Also like you I struggle with depression and panic disorder, which POTS tends to make worse, but I find it has almost become a completely different task to work on those two areas. Mindfulness and meditation has improved those areas for me, it won't help my POTS symptoms at all, but it does improve my quality of life.

I just wanted to share this podcast with everyone, it is called The Mind Palace, and it is free on itunes. It is a really interesting podcast and it focuses on "living a well curated life", but they touch on so many topics from health to work life balance, to food, friendships etc. I found their most recent one title "Health and Body" to be very interesting because they look at exercise and fitness in a different light than most people typically do; they kind of see health and fitness as something that should be ingrained in your day to day routine and very balanced, rather than something you set aside an hour at a gym every day to do. I thought it was interesting because prior to my POTS I was doing exercise all the time and always pushing my body either running or lifting, but now that I can really do very little, I find that my "exercise" has become my daily chores, and routines, like taking out garbage or 15 minutes of yoga. It is not really something I can go very far with on any given day, but it is something I can do a bit little of each day to help myself. And their podcast really touched on having that balance of doing what your body needs and living healthy as a sustainable thing.

Hey Sarah, I've had both tests done, each one a few years apart. With the endoscopy they found I had delayed gastric emptying which means food say in my stomach longer than usual, and the colonoscopy was normal. I was diagnosed with ibs but I see ibs more as a blanket diagnosis of you have digestive problems but we can't tell you what is causing it. The diet changes I made really did nothing for any of my symptoms, and have still not yet found anything that helps, my symptoms tend to come and go on their own accord.

Hi dm866, it sounds like your feeling that your "pseudo seizure" diagnosis is not being attributed by your doctors to the right cause? Did they tell you your pseudo seizures are a manifestation of stress/ anxiety? I know that some people here have gotten seizures since having POTS symptoms sometimes as a part of their presyncope. Have these episodes of your occurred under simialir circumstances that you have noticed?

I think that people who have hyper pots may also suffer from anxiety disorders, I would venture to say that anxiety disorders do not cause orthostatic hypotension, digestive issues, temperature regulation problems, or any of the physical problems more closely associated with the autonomic nervous system. That being said I have both POTS and generalized anxiety/ panic disorder, and notice that with the POTS whenever I'm anxious now its not just that I feel that way emotionally; my hr takes a long time to calm down even as I begin to feel more relaxed. I think if you have an anxiety disorder POTS just makes it worse, and can also mimic many of the symptoms, like hr increase, nausea, sweaty palms but it seems like POTS brings things to a higher level of dysfunction. Sometimes when I feel really anxious with POTS it's like my brain has a hard time relaxing and talking, and i almost feel jittery in a way, which I never felt prior to my POTS getting worse.

Hey Sassyred, I've had some similiar eye issues as you, but always attributed them to some sort of weird migraine state; sometimes I will feel as though my eyes are going to cross but they never do, it's like the eye muscles feel strained on their left and right sides, and sometimes just get a simialir strained eye pain but it almost always makes my vision feel a bit "off". Also for me, I don't fly anymore, but it would take me a few days to feel "normal" again after flying, within a minute or two of getting off a plane I would feel sort of out of it/ brainfogged, and visually things would look weird like people looked like they were photoshopped on to the background (if you've ever seen that type of effect in pictures), but I also have depersonalization disorder so I thing some of the visual part is more related to that. My doctors thought maybe the flying in a pressurized cabin was messing with my migraines, though this was before they were aware of my POTS.

Yea I feel like whenever I get random nausea it kind perks up my anxiety, I think just because for me my nausea can sometimes come out of the blue so it's like my brain suddenly feels like there's something else going on.

You may just be very sensative to benzodiazepines, I have Xanax but it's the extended release so it really doesn't work very well or days where I'm have random panic episodes, so I just use it when my mind and body just seem too overwhelmed by visual stimulation, and noises, etc. I would say that mindfulness and meditation have helped me a lot as far as the anxiety goes, that being said its not a quick fix, it's something you kind of have to do each day and work it into your life.

If they diagnosed you with autonomic dysfunction I would assume they have reasons for it, either in your medical history or from your tests results over the years. What did you tilt table test show? You mentioned that you had orthostatic hypotension, but did they diagnose you with POTS? Even POTS as a diagnosis is vague; usually if your tilt table test shows your hr increase 35 points, and you have a history of symptoms consistent with autonomic dysfunction you can be diagnosed with POTS. That doesn't mean, however, that they can ever tell you where exactly the problem is, what caused it, or why you feel horrible when your vitals look fine. Each POTs Doctor I've been to seems to look at symptoms differently, one told me digestive problems and any symptoms that last longer than a day, or don't resolve after laying down are not the result of POTS, but in practice we all attribute these symptoms to either POTS/ dysautonomia, or believe they are the end result of our dysfunctional bodies.

I think that many doctors find POTS/ dysautonomia to be a difficult thing to treat since it is so varied from one person to the next. I know that my POTS I went to three different doctors before they wanted to prescribe anything (prior to that my migraine specialist tried me on a beta blocker which was not a good fit for me). I think a lot of it has to do with symptoms, for example I don't pass out or have low bp so things like midodrine haven't come up, and my hr isn't on the high high end and with the beta blocker not helping that sort of took out that option. So I think you do have to work with your doctor and explain that maybe the current medication protocol isn't working well, and if they think there should be adjustments made? I know some of my doctors were very hesitant to try meds just because they felt like they didn't really know what was actually going on in my body, so it's like dropping medications into the unknown.