potsiebarbie

8 hours ago, Pistol said:

I used to have this happen to me. It was caused by blood pooling and the heart trying to pump with all its might to compensate until it finally starts pumping FASTER rather than HARDER. Often this was accompanied by PVC's which felt awful. Once I found the right medications this all stopped. It was caught on my implanted loop recorder, which recorded every heart beat for 3 years, and it was all harmless. I know that we feel our hearts beat more than others ( this is called cardiac awareness ) and that it can be quite unsettling but it is a common symptom of POTS. Since you had your heart checked out thoroughly and have been told by several doctors that nothing is of concern I think you should be OK. I had to get used to the feeling and once you know that it is not serious you might be less worried. However - medications like beta-blockers and calcium channel blockers have helped me to stop these symptoms. 

Thank you so much for replying! I had a doctor hear an irregularity with the stethoscope recently so cardio ordered 4 week monitor. I'm hoping it picks up what the doc heard. My ekgs have started showing irbbb the past few months too. Do you think a 4 week monitor is long enough? I had a 24 hr one last time. It was a good 24 hr right after iv mag so I'm not surprised it was okay. Thanks again for responding! 

I haven't been getting a ton of responses on my previous posts, but I'm hoping someone can relate to this, or might even have some comforting insight (because it is really unsettling). When I go from lying to sitting, or sitting to standing I get this weird feeling in my chest (maybe pressure?? Idk), and I'll feel my pulse and it's hard and slow. It eventually progresses into my ever so familiar tachycardia, but when I get that feeling in my chest and it's hard and slow like that it is uncomfortable and scary. It's like my heart can keep up. Once I'm walking around it goes away.  Thoughts? Experiences? Anything would be appreciated. 

4 hours ago, Heartbroken said:

I take Magnesium citrate (Prescription) 400 mg twice a day, still my Magnesium is below normal. I get strong heart beats with the slightest loud noises. 

What's your diagnosis? Does your doc know why your mag is low? How are your other electrolytes?

Yes! I saw a audiologist and I have significant hearing loss that is abnormal for my age so I had to have a brain MRI. They didnt find anything related to the hearing but they did fine a pituitary gland growth. I'm having a more detailed MRI today to get a better look at the growth. Do you have a kidney issue? I have renal magnesium wasting and the audiologist said the kidneys are directly related to the ears. 

On 4/7/2019 at 10:46 PM, jklass44 said:

Well it sounds like they took it seriously enough to order the tests. Also, they wouldn’t have discharged you unless they felt it was safe to do so - this is good news! Do you take any meds for the RBBB? Hopefully your palpitations ease up now... Good luck with the follow up and be well. 

No meds for it. My pop is trying to get me in your see a different cardiologist.

I normally feel mine in upper middle chest. Last night I feeling them pretty low in the sternum and that's never happened so it kinda spooked me a little. I remember people mentioning difference between Pvcs and pacs is upper and lower. So where do you guys feel yours and do you know what they are exactly?

1 hour ago, jklass44 said:

@potsiebarbie I’m sorry to hear you’re in the ER! Did you ask the doctor what exactly he thought was irregular about it? It’s good that they’re ordering some tests to be on the safe side... I’ve had similar experiences, both where the doctor said my rhythm sounded abnormal but the ECG didn’t pick up, and also where the ECG was abnormal but the doctor couldn’t hear anything. Usually palpitations are pretty benign, but they can definitely be scary if they happen often. I’ve found being on Ivabradine has helped lessen the frequency of my palpitations.

Keep us updated!! Best wishes and feel better soon. 

Thank you. They discharged me since all my tests came back okay. I do have a recent history of incomplete right bundle branch block on my ekgs. The doc felt like nothing was emergent, but that I need to follow up this week. I told him I need him to note the "irregularity" he heard so I have that to show my doc(s). Hopefully they take it seriously. Who knows! Lol

I have this EXACT same feeling! Did you ever find out anymore about it?

In the ER for some funky heart palpitation stuff and when doc listened to my heart he said it is irregular. So he listened some more and it seemed to fix itself, and returned to normal. He said the EKG didnt show it. They are doing blood work an chest x-ray. My cardiologist just saw me a couple weeks ago and scheduled a follow up for a year. The irregularity worries me especially since I'm symptomatic. Just wanted to see if anyone has some experience with something like this. 

I get the same way. I know it's hard, but in between the refferals and tests and appts I just try to forget about all it and try to pretend I'm normal. Lol Since there's not much I can do from one appt to the next I just set it all up and do my best to forget about it till it happens. Easier said than done, and I don't do a great job at it, but I try, and having three little ones keeps me busy. Hang in there!

15 hours ago, MeganMN said:

I could not find any relation, but hope you get some answers soon.  I am learning with my own journey that there are so many different roads, so many roller coasters, and when already feeling like poo, it is exhausting!  Good luck!!

Darn! I was hoping I didn't just have a bunch of different random stuff. 

1 hour ago, MeganMN said:

Have you had the 24 hour urine testing done for Endocrine stuff? I looked up the testing recommendations at work on UptoDate and this is what it says: 

"We  suggest measurements of serum prolactin (lactotroph adenomas), insulin-like growth factor-1 (IGF-1) (somatotroph adenomas), and 24-hour urinary free cortisol (corticotroph adenomas). 

We recommend MRI as the single best and usually only imaging procedure for most sellar masses. Certain MRI findings suggest a greater likelihood of some kinds of sellar masses than others. As an example, finding a mass that is separate from the pituitary gland generally indicates that the mass is not a pituitary adenoma.

●We recommend evaluation of hypothalamic-pituitary hormonal function whenever a sellar mass is encountered. Hormonal hypersecretion is caused only by pituitary adenomas. Consequently, the demonstration of hormonal hypersecretion identifies the sellar mass as a pituitary adenoma and also identifies the type of adenoma. (See 'Hormonal evaluation' above.)

●The extent of the evaluation in a patient with an incidentally discovered intrasellar MRI signal abnormality (pituitary incidentaloma) depends upon its size. If it is larger than 10 mm, we recommend the hormonal evaluation as described above (see 'Hormonal evaluation' above). If it is smaller than 10 mm and the patient has no clinical findings of pituitary dysfunction, we recommend measuring only the serum prolactin concentration. (See "Incidentally discovered sellar masses (pituitary incidentalomas)".)

 

This is from UptoDate Clinical manifestations and diagnosis of gonadotroph and other clinically nonfunctioning pituitary adenomas

No. Maybe the Endo will order it. I had 24 hr urine that showed I'm wasting magnesium. I wonder if they could be connected. 

13 hours ago, Pistol said:

@potsiebarbie - when I go to my neurologist I go to the radiology department of my hospital and ask for an actual copy of the MRI - just the report is usually not enough for a neurologist, they like to look at the actual imaging, which comes on a disk. 

The neuro office wants only the report- not the disc.  Should I be worried? Lol I'm gonna try to get both. 

20 hours ago, StayAtHomeMom said:

They may be. If you can get a physical copy of the test you had that showed the growth, make sure you bring that with to those doctors. That way they can look at it and not the report. 

I'm gonna try to get it before the appt but what is funny is that the neuro office only wants the report. 

2 hours ago, KiminOrlando said:

Did they call it a granuloma or something else?

The ENT called it a growth. He is gonna order a different MRI to get a better look. I have appointments with an endocrinologist and neurologist coming up this month and next for unrelated matters so maybe they will be of help?

My ENT just called with my brain MRI results and while they didn't find a reason for my hearing loss they did find a small growth on my pituitary gland. Anybody have this or know anything about it? I'm trying hard not to freak out about it. 

Since so many of us have it! Some of us are used to it, but some of us still aren't. I thought it might be comforting for everybody who has chest pain to describe it and give a little info on it. I get various kinds of chest pain, and no real answers so I thought this might be a good thread to start. Thanks! 

12 hours ago, Shepard1 said:

When I get SVT the chest pain I get is a crushing, heaviness mid sternum. I also get short of breath and light headed. 

Ugh! That sucks. How do they treat svt? 

On 3/26/2019 at 3:24 AM, Shepard1 said:

There are a couple of positives, the echo-cardiogram indicates that the  structure of your heart normal and your holter was normal.   Incomplete RBBB in a ECG is often a normal variant or a slight delay in conduction.  It is okay to feel they way you feel, it is a shame that your cardiologist couldn't explain more about the anomaly in your ECG - it would take away a lot of worry and concern.

I too have a normal echo (phew),  My own ECG shows a narrow QRS complex.   I also have IST.  I am prone to SVT's - HR have been up to 250 BPM - chest pain extra-ordinary BUT not dangerous. 😀 I have I I have also had whilst an inpatient  twice showing p wave pauses,  though the symptoms of this is the same as with the dysautonomia. 🤨

 

I totally agree! A better explanation could have left my mind at ease. What kind of chest pain do you get with that? 

On 3/26/2019 at 6:00 AM, Lily said:

I have Incomplete Right Bundle Branch Block, and I was told it was a normal variant and not any kind of problem at all.  Left BBB, now, that is more likely to be a problem.

Have you always had it? Do you have any other medical issues? If you don't mind me asking.

On 3/26/2019 at 7:04 AM, p8d said:

I am with Pistol on this one.  I see my cardiologist once a year and his NP 6 months after I see him.  I see my neurologist NP every 3 months.  If you don’t trust this one ask for a second opinion from another one.  Different eyes/experience are usually helpful and can give you peace of mind.

Thank you! I'm definitely going to try for a second opinion!

On 3/26/2019 at 12:17 AM, bunny said:

The big question is, "Does it matter?"  What are you hoping to gain with/without having an abnormality?  What are the consequences of treating it?  What are the consequences of ignoring it?  Even if you manage to get an official diagnosis of something, are you any further ahead?  Trust me, the number of disappointing Dr appointments way outnumbers the positive ones for me.  

My body was trashed 20+ years ago due to severe anorexia.  Nothing about it really works right.   Diagnoses and labels can be helpful, but they can also get in the way.  I stopped worrying about them many years ago.

Validation is nice, but I only bother with it when it's going to pose a threat to my health.  Case in point: Last week with an oral surgery consult. Bradycardia & hypotension are on the typed, multi-page medical history sheet I hand over to every new Dr I see.   I'm already apprehensive of doing surgery, have a long history of bad experiences with doctors, have a past history of abuse (and saw a dental chair with restraints on it as they sat me in the consult exam room).. you bet my BP and pulse were through the roof.  The nurse wasn't buying the bradycardia & hypotension until I show her my BP reading from that morning -- 83/39, p45.    Yep, that took general anesthesia & sedation right off the table.  Otherwise, I would have just brushed her off. 

I pass out (among other issues).  No big deal.  It happens.  It's part of "normal" life for me.  It's not too different from someone who has epilepsy, or someone who is an amputee.  To the world, their bodies aren't "normal", but that doesn't change their situation. They've been dealt the cards they have. It's up to them to make the most of it.  Sometimes problems are easily fixable.  Sometimes the treatments put you in worse shape and can cause permanent damage to your body.  Sometimes doing nothing really is the best approach.  

Thanks for your response! It does matter to me. It's a new finding (last 2 months) after being in and out of doctors offices, specialists offices, and ers for about a year. I wouldn't even know I had pots if I had accepted my doctors "anxiety" diagnosis when I knew something was wrong with my body. I am slowly accepting that I won't feel my old normal anymore. I agree sometimes the treatments are worse than the thing you are trying to treat. O cut out all my prescriptions. Many doctors blindly throw meds without digging any deeper. I guess I feel like in the meantime, I need to take the best care of myself physically and mentally so I get a better idea what's going on with my body. Easier said than done. Lol Andkeeping up with my other appts, docs, and tests. One thing I'd love to improve is not being a silent doormat in the doctors office. Lol I leave with more questions than I came in with. 

On 3/25/2019 at 3:25 PM, Pistol said:

@potsiebarbie - yes, I have an abnormal EKG - it shows inverted T-wave. This CAN be serious if it is a new finding but in my case it is always there, so it is no big deal. The abnormality you are mentioning - incomplete right bundle branch block - was that what the doctor told you or was it the interpretation from the EKG machine ( on the print out )? Often the print-out interpretation is incorrect. I already had EKG's that claimed I had an inferior MI ( heart attack ) but the actual wave-forms did not support that. So - if your cardiologist is not concerned I would not be either. And yes - if you have no serious abnormalities or complications a one year follow-up is pretty standard. I have a rare heart condition and see my cardiologist every 6 months. But my husband - who has a minor arrhythmia - sees him only once a year. Sounds standard practice to me. But if you are concerned you can always go for a second opinion. 

Thanks! I'm going to try to get a second opinion, and maybe even give my cardio a call and ask questions until I get a better understanding. 

On 3/26/2019 at 12:15 AM, blizzard2014 said:

Those EKG's are really finicky sometimes. I had a whole bunch of them saying "meets the voltage diagnostic criteria for left ventricular hypertrophy" and when they did the echo of my heart, it turns out I have right ventricular hypertrophy. It was not showing up in the EKG properly. I'd say, it's much better to have no heart issue than to have one. I'd take that as a win. 

Well there's no debate that I have the IRBBB. One of my concerns is that it is a new finding. Hopefully I can eventually locate some reassuring research or get a second opinion with someone who's willing to educate me on this. 

The machine sometimes picks it up. The machine didn't pick it up today, but doc did.