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Hi @racingheart77 I have had some of the 'burning' chest pain that you mentioned, it was often present with chest pressure or sometimes a feel like there was a weight on my chest as well. It was distinct from heart burn, sometimes it would almost feel sunburn-like when it started. I don't know what it was or what caused it but my doctor thought it was somehow related to the fact that I have POTS. Aspirin and verapamil are the two meds that seemed to make it better for me, which makes me think it did have to do with my heart not acid reflux or heart burn, because meds to treat those did not help me.

Hi @zmumu1, although we cannot diagnose you, one of the characteristics of POTS is an increase in heart rate when going from lying down to standing. Looking at the first test that you did, it appears that you had a +33 - 57 increase in your heart rate, which is characteristic of POTS. Autonomic specialists will typically prescribe a tilt table test so that they can accurately measure your vitals in a control lying to standing environment, but they also look at symptoms and patient history, ruling out other potentail causes before making a diagnosis.

Hey Mistri, I have not gone over 30mgs, I tend to be pretty careful with meds just because my body seems to not tolerate higher doses. But its more based around if it helps or not; I notice on 30mg a different feeling in my head almost like you can feel a sense of pressure, not necessarily in a bad way, but I'm still careful with it.

Hi vjester, I have not had the same myriad of symptoms hat you mentioned, though I used to get really bad chest pressure/ tightness/ pain/ weight feeling/ discomfort that could last for days or weeks, the severity of which could be pretty extreme though all my heart tests would come back normal. I was finally able to find a medication that fixed it. Typically when it happened I would have less lightheadedness, and did not have the shortness of breath or chills and sweating you mentioned.

Yes I am still on mestinon, same dose 15mg; though I will double up on it if I have to go any major walking throughout a day. I found that after about 4-6 weeks my body got used to the mestinon and I felt the same as if I wasn't on it at all. If I double up on my meds I can tell that even after 4-5 days of doubling up it starts to be less effective. I think it has to do with the short halflife of mestinon, so I for my body at least, I don't know how well it will work as long term solution, that being said I'm still continuing to take it.

@Mistri_The_Squirrel Sorry just saw your post. So yes at the time, and still currently, I was on Verapamil and Amitriptyline. I actually think the 'drug-like' side effects were just the Mestinon, and again I only started with 15mg so I'm sure if I started with 30 or 60 I would feel even more of the drug-like feeling. Now even if I increase to 30mg a day I no longer feel that. With my POTS brain it seems like the first week on any medication makes me feel weird; its like my brain is adjusting, and so I typically have to wait until the second week to see how the medication actually makes me feel.

I had to do the 30 day holter. Its not too bad; you get used to wearing wires and having to stick the leads back onto you after showering, but it feels good to not have to do it once it's over with.

Hi Misti, I can completely related to your symptoms, when I began mestinon (I was only doing 15mg's) for the first week maybe week and a half I definitely felt that 'illicit drug' feeling your talking about. It was kind of weird, in some ways I was more 'motivated' both about doing mundane tasks as well as feeling this 'wanting to be around people' feeling, and that weird 'high' feeling. So yea definitely felt like I was on uppers or something, it did go away after a week or so and even when I take more of a dose that feeling didn't come back so I'm thinking it was just my brain adjusting to the medication.

Hey redpeach, to answer your topic question I did go to Mayo in MN for POTS though I do not have MCAS. They did do some thorough testing, though I was a neurology patient at Mayo since 2009 before my POTS got worse so I've had lots of tests done there over the years. I did think that their autonomic specialists were the best ones I've been to but it was more for diagnosis only, not for continued care. And for me since I seem to almost be suffering more from a complication of orthostatic hypotension than just POTS itself, they weren't able to help me get any better. I've never been to a place with better medical treatment with Mayo.

The TTT has more to do with what happens to your heart rate when it goes supine. Did you have the increase in heart rate of over 30 when it went from laying to standing? Because that would be indicative of POTS, of course the doctor should take the results along with your history of symptoms when diagnosing. I have POTS and I've never fainted, nor do my vitals always dictate how bad my symptoms are.

Thanks Missy and Lily. Missy - do you have any trouble lifting heavy stuff? Like is that a problem for you to lift the mobility scooter you got? And how long does it go for on a charge? Would you be able to use it all day in an office or work setting or going to a museum or anything like that? Thanks.

Hey Dakota, with POTS they look at the heart rate change of +35 points when going from sitting/ laying down to standing which it sounds like you have. POTS specialists usually use the tilt table test to test this so they have a controlled and recorded sample of what is going on with our vitals. Though we cannot diagnose each other with POTS, you experiences you write of sound similar to many of those on this board and you certainly have the heart rate change characteristic of POTS.

Hey Anya, a little while back I had a cardiologist take me through a lot of testing (treadmill stress test, 30 day holter monitor, bubble study). Outside of POTS I do have a bicuspid aortic valve which is genetic and I've had my whole life, they also found I have a PFO - neither of these would explain the symptoms I get from POTS though and my cardiologist had treated other patients who had POTS so for me it didn't change the diagnosis or treatment in their eyes.

Hey everyone, I've been thinking more and more about seeing if I would be able to get an electric wheelchair/ scooter if insurance would be able to cover any of it and if my doctors are on board. For me with my POTS there is still my reaction to walking/ physical exercise that has yet to be explained; it's weird I can bike 5-10 miles sometimes on a stationary bike (as long as I keep my hr up and just go the whole time) but I can only walk like 12-15 feet without stopping or my brain starts to feel bad and all my symptoms come on and it takes days to recover. Needless to say this really limits my life. Things like going to a museum, getting to a doctor's appointment, getting groceries, taking my dog for a walk, even working (thankfully I work remotely and only go into the office some days) and getting from the parking lot to the office - these things are either impossible or I have to take it 12 steps at a time and double up on my meds for those days. At this point I really just like the idea of having that sense of freedom, that I'm sure all of us is felt, that is lost when suddenly your body looks the exact same and you can walk but only extremely short distances, you can lift stuff but only small amounts of weight. Just wanted to see if anyone has experiences in getting one of these things and if it has impacted your life for the better or allows you to do more sociall, and also if it was difficult to get insurance to cover any of it?

Hey Peter I have depersonalization disorder as well as POTS. For me the DPD was the beginning of my problems and the POTS didn't seem related to it at all. However now that my POTS symptoms have been worse over the last few years I do have 'depersonalization'-like symptoms if I start walking too far; I'll feel my vision getting hazy, brainfogged, and feel really disconnected from everything. My depersonalization episodes from DPD can happen anytime and typically last a lot longer (like all day) and since the first few months of the DPD starting I've basically just been in it all the time rather than it being episodic, so for me if its specifically related to what I'm doing physically I know its because of something with my POTS.

There is the physician's database on this site that you can look at POTS knowledgable physicians near you. It may be worth a look or looking up their specific experties's and see if any of them look like a possible fit: https://www.dinet.org/physicians/

Early in my POTS I would find that a shot of alcohol would make me feel more 'normal' and less exhausted from sleep the following morning, but now I find I really can't tolerate it at all, I'm guessing just changes with my condition over time.

Not an electrolyte solution per-se but because my body seems sensitive to any drinks with a lot of potassium or extra ingredients in it, I would often just drink salt water and add honey or sugar into it, or squeeze some orange into it that way I could control what was put into it. I have heard some good things on banana bag which is almost like an iv solution type drink. I think each of our bodies reacts to things differently so what might work for some might not work well with others.

Hey FSKhan, I may have this. I had many different heart related tests done but none showed up anything that was related to my chest pressure/ pain symptoms. My doctor believed my symptoms had something to do with POTS, and said its possible that I have microvascular angina but he didn't seem concerned about it as my tests were all normal. I've since been taking a cc blocker and it has made the chest pressure go away, except for here and there every once in a while.

Hey Bruno if as was said the tilt table test seems to tell doctors if we fit into the diagnostic criteria for POTS. It may be helpful to bring POTS related literature to the doctors you are currently seeing, or seek out a specialist in another country if you are able to fly. It looks like there are a couple of POTS/Dysautonomia knowledgeable doctors in Argentina, according to info I found on DI website: Dr. Daniela SaadiaBuenos AiresDr. Raul Norberto GarilloBuenos Aires

Hi Vepa, not sure if this financially works for you or what your insurance is like, but there is the physicians list with POTS/dysautonomia knowledgable doctors who would know how to diagnose these disorders. There may be one in your area: https://www.dinet.org/physicians/

Hi jschult17, I do have depersonalization disorder as well as POTS. For my the depersonalization is constant and was more of a problem prior to the POTS, though I do find that my POTS can cause a 'depersonalization/ dissociated' feeling as well when I over push myself but it tends to be more situational rather than constant. Depersonalization disorder itself can be found in people with migraine, anxiety disorders, and I believe SSRI's can trigger it as well, though for me its more extreme than the brain fog and disconnected feeling that I get from my POTS - not sure which one you are experiencing. Depersonalization disorder for me makes me feel extremely disconnected from my own self and the world around me, like I'm constantly walking around in a brain fogged daydream like state even though I'm experiencing everything normally, and everything visually looks almost alice in wonderland like. POTS dissociative symptoms and brain fog just make me feel like fully conscious like I haven't had any sleep for 2 days straight, or like I have a weird hazy tunnel vision type feeling. - not sure if this helps.

Hi Clichy I went to one of the cardiologists at Rush, I believe it was doctor Krishnen (not sure how you spell that), they ran all the tests including month long holter monitor, echo, ekg, and stress test. They believed my chest pain/ pressure was somehow related to my POTS, said it could possibly be microvascular angina though its hard to test for. I had started on verapamil with my general practitioner and found that it controlled my chest pain except for increases here or there, but it does nothing for my POTS symptoms.

Hi StayAtHomeMom, I'm currently on a cc blocker though it is not the same one you have been prescribed. I found that as far as my heart rate and blood pressure goes it doesn't really affect either of them, but it does help with chest pain and pressure so that's why I continue to stay on it. I haven't noticed any negative effects from being on the medication either.

Hi pink I notice for myself that my symptoms and my hr don't typically correlate, though I always feel the rush of blood to the head feeling when just standing up. One of my doctors did mention the idea of the excessive hr as being the compensation mechanism, though I'm not sure how bringing that down would affect things overall; maybe others have more to add to that.