potsiebarbie

So I was at the ER (again!). I got a diagnosis of gitelman last week from nephrologist. I have my doubts, but I'm known for soaking in denial. Anyway, the ECG monitor I was hooked up to kept going off and I'd look at it and these are what I would see...

Cannot read ECG

Pacer nt pacing

Pause

Pair pvcs

Vtach

...During some I had noticeable symptoms- some not so much. The nurse and doc kept telling me it's no biggie, but I'm not convinced. Thoughts? Reassurance? Anything?

I've had a head ct, a sinus CT, two chest CTs, two abdominal/pelvic CTs, and a soft tissue neck CT. All in the past year! I keep thinking if there wasn't something wrong with me before- there sure is now! (With all the radiation exposion) lol 

Not really lol but I'm trying to make myself feel better. Haha

I'm kinda concerned about the number of CTs I have had in the past year. Thoughts? 

16 minutes ago, ScottS said:

Given concerns over both tolerance and the potential for addiction, I think that's a smart approach. There are other, non pharmaceutical approaches that have been proven to work well including yoga, meditation and EFT tapping.

For me, both exercise and my following a rather strict diet makes all the difference. With respect to exercise, I'm fortunate in that I enjoy what I do. (And yes, after a lifetime spent doing what I do, I'm good at it.) When it comes to my diet, both of my last two ER visits were a result of me NOT following that rather strict diet. A mistake (twice made) that I've promised myself I won't make again.

One of the buggers with POTS is it's not at all unusual for a person with it might not look sick at all. I guess it's easy for those on the outside to pass things off as simple character flaws or due to a person's inherent laziness or weak will. 

Hang in there. Stay strong. Fight for yourself. You're worth it.

Thank you! What kind of diet do you follow? And what exercise? I'm nosey. Lol

10 hours ago, songcanary said:

My story is similar to Pistol's.  I started Zoloft one year ago and it has changed my life.  I had to stop working because of increasing panic attacks and I really felt hopeless and helpless.  I am on a very small dose - 25 mg - but what a difference.  I have held a part time job since November with no panic attacks at all.  It has been such a relief.  Hang in there, it can get better.

If you don't mind me asking, was that your starting dose?

14 hours ago, Pistol said:

I am sorry @potsiebarbie that you feel so unwell. Yes - I know what it is like. When I was at my worst and had to stop working I was overwhelmed with the outlook of having to live with so many limitations yet still be so sick. I became depressed, partially due to the fatigue and exercise intolerance, the fact that I was housebound, the anxiety over taking seizures and syncope that I could not control and partially because - well, because I felt depressed. This was a downward spiral for me and I even became so bad that I considered suicide. This was a bad time and I immediately talked to my doctor and my closest friends about this and was evaluated ( my choice ) by a neuro-psychologist. She di a thorough, many hours long exam and told me that my depression was a result of the symptoms of my illness and gave me ideas as to what to do every day to get better. And my PCP started me on SSRI ( Lexapro ). I have been on that for many years and tolerate it well. … Today I am in much better place, I have accepted my limitations and found relief of many symptoms through medication and lifestyle changes but still am disabled. I guess what I am telling you is - don't be hard on yourself. What you are feeling is common and many of us feel - or have felt - that way. Yes - medication helps many but in my case it was talking about what was going on and allowing myself to be helpless and human and letting other people in on my misery. It is VERY important to have someone to talk - whether this is a doctor or friend or family or counselor. Sometimes when we get too wrapped up in our feelings we loose the ability to think straight and talking with others puts things into perspective. And it lets us see that we are not " crazy " or "unreasonable" - we are just human and there is only so much we can tolerate. But others can help us carry our loads. Be well!!!!!

Lexapro is the one I was on last. If you don't mind me asking, did you have to up the starting does?

20 hours ago, ScottS said:

Of all the challenges POTS presents, few are greater than continually having to overcome the lack of mental and physical energy (and optimism) our bodies and minds normally hold in reserve for those times when we are sickest or most injured.

Questions: 1. You say you've taken "all the benzos mankind has to offer". Did any of them work for you on any kind of a consistent basis? 2. Are you presently able to take good enough care of yourself with respect to your diet? 3. Are you presently able to exercise (at all)? 4. Do you have a support system (family, friends, helpers) in place that is willing and able to assist and help you? 5. Are you able to work (at all) or go to school? 6. Do you find yourself continually focusing your thoughts on your dysautonomia and the negative ways it affects and impacts you? I realize these are all personal, some very personal, questions so feel free to not answer one or all. 

I also realize this doesn't offer up a solution and, in all fairness, might be no help at all. Even so, just know that you're not alone in experiencing being overwhelmed by your dysautonomia. Fact is, POTS eats sh*t. (Pardon my language, but it really does.)

Hi. Thanks for responding! To answer your questions....

1. Yes. Benzos seem to be relatively helpful. However, I would need them multiple times a day and I build tolerance rather quickly. So it's hard to rely on it all the time. I usually try to save it for when I really really really need it. I guess. IDK. Lol 

2. I'm still working on finding a diet and exercise regimen that suits me. I'm one of those people who needs it all on paper laid out in front of me so I could follow it. So if someone was like do this exercise everyday, and here, follow this meal plan- I'd be golden. 

3. Usually, yes. I don't seem to have that exercise intolerance (knock on wood) that others have. However, I've been having issues with my leg going numb (from foot up to low back/abdomen) when walking for a bit. That has kind of put a damper on things. I've also got some nerve and muscle (I think) pain going on that's pretty debilitating. On the bright side I start physical therapy tomorrow so this is basically my last hope since my doc doesn't want to do any further testing.

4. My support system is nil. Nobody in my family takes the whole pots thing seriously. I'm just a lazy hypochondriac. 

5. I don't work. I take care of three tiny humans full time (two of which have special needs). I am thinking of going back to college (taking a few classes at the local community college). 

6. Yes! I'm consumed with them! I also feel like I'm just gonna drop dead and my kids will be the only ones home. I have awful thoughts like that. Not wanting to plan much into the future cuz I feel like whatever is wrong with me is gonna take me sooner rather than later. Horrible, I know. I just wish I had a kick-*** team of docs who actually give a d***. 

Okay so...

POTS:1

Carissa:0

I'm thinking with the way things are going I could use an antidepressant. Now I've trialed many. Ssris and snris, (all the benzos mankind has to offer) but now that I've been off for a while I'm looking for some ideas on what's working for others. I know everybody is different, but talking it over and hearing others' experiences might help. Basically I'm constantly feeling worse. Not just pots but I'm assuming whatever is causing it too. It's really wreaking havoc on my body and spirit. I'm depressed from my limitations amongst other things, and honestly extremely anxious. I always think worst case scenario. Every ache and pain must be a blood clot or aneurysm. I just can't shut that part of my brain up. And my doctors (or lack thereof) are no help. Any experiences with depression, anxiety, and/or meds for that would be greatly appreciated. 

Tubthumping by Chumbawamba 

"I get knocked down, but I get up again. You're never gonna keep me down". 

On 1/19/2019 at 10:10 AM, Derek1987 said:

Have you tried using rinse aid along with your dish washing liquid or pods? Makes all the difference for me. When I had a dishwasher that is.

 

https://ship.kroger.com/p/051700369300/finish-jet-dry-rinse-aid-80?&cid=shp_adw_0000.ship.Delta+Ship+-+Dishwashing&gclid=EAIaIQobChMI-ObWnrj63wIVHP7jBx1f3ApREAQYASABEgK-YfD_BwE&gclsrc=aw.ds

I actually may try that. Who knows? Maybe we'll get some use out of that dishwasher. 

Good question! I'm in that area too so I'd like to know as well.

On 1/22/2019 at 6:48 AM, Conyers said:

It's going to be a boring answer from me. I prefer regular coffee with milk and sugar. I do like all the different blends and types too, I just end up defaulting back to the good old regular. haha

I generally just do a little milk or half n half in mine. Sometimes I need a change, but eventually just back to a splash of milk. Lol

On 1/22/2019 at 7:54 AM, WinterSown said:

Coffee addict here! I love coffee, no sugar and a bit more light than regular. Eight O'Clock is my go to in the supermarket. I use the brew cup in the keurig, there's one dribbling out right now. I'm having the Colombian from AmazonFresh--it's quite good; I've added it my subscription deliveries. Nummy, nummy brew.

 

Eight o'clock is my go to too! My mother in law introduced me to it. 

On 1/19/2019 at 7:46 PM, MeganMN said:

Ooooh, we have become coffee snobs!  We built our own house and did not have electricity for a bit, so we had to have coffee kind of old-fashioned.  My husband got a hand-pump espresso maker so we started making 2-shot espresso with Cuban (Bustelo) coffee and then we would boil the milk with a tsp of vanilla and 5 tsps of local maple syrup (for 2 coffees).  Once the milk was boiling we would use a frother, pour it all in a mug and top it with a cinnamon and sugar sprinkle!  We just recently bought an electric espresso maker to use on sunny days (we have solar power) and it even steams/froths the milk!  I might have to try that syrup recipe though with the coconut sugar.  

Oh my goodness! I'm having coffee at your house. Lol That sounds amazing! 

I think this would be a cool feature. 

33 minutes ago, jklass44 said:

I have RUQ pain too, especially after I eat, and was also convinced my gallbladder hated me... Only ever had ultrasounds though and they were also normal. Have you found anything that helps relief it?

Not really. It comes and goes. Fun fact though: same spot on my back (right side under shoulder blade) had pain for months and now it's numb. IDK. Maybe connected somehow.

I saw my new cardiologist since losing my private health insurance. I waited over an hour past my appointment time for not even two minutes (no joke) of his time. He basically said I could live to 120 with pots, but it wreaks havoc on your life. And that he wouldn't prescribe a beta blocker because BP is already low and that treatments make pots patients worse so we just like to leave them alone since nothing can be done. Needless to say I cried the whole way home. I just feel really hopeless. I have three kids under five (two special needs) and I feel like I let them down. I'm not the mom I used to be since pots. And I feel like the doctors are missing something and I'm scared of dropping dead and my kids finding me. Sorry, I know it's morbid, but I feel pretty down and scared. I'm feeling really emotional and needed to vent so thank you. Lol

27 minutes ago, StayAtHomeMom said:

That sucks. I know chiropractic is not a cure all but it can help different things depending on the patient and Dr. 

Have they checked your gallbladder? I know my sister in law had issues with it and would cause a lot of pain. Also her gastroparesis can cause similar pain. 

I was convinced my RUQ pain was gallbladder, but I had a million ultrasounds, some cts, and a hida scan say otherwise. 

1 hour ago, StayAtHomeMom said:

Curious, have you tried a chiropractor for the hitial hernia?

Yes. Unfortunately not as helpful as I was hoping. 

If you have abdominal pain please describe it. Also do you have a hitial hernia? I've had a gastro work up, and fifty shades of abdominal pain that I don't know what it is or what causes it. I've trialed all kinds of meds. Just trying to get some insight. Also I do have a hitial hernia. 

43 minutes ago, Brokenlittleteapot said:

Has anyone else had bradycardia at night and tachy during the day? Ugh and my PVCs are so bad sometimes I can barely breathe! They will probably want to change my meds, but this is all just a pain in the ***.

Me! And I'm tachy even after bags of iv fluid and hours of laying in the ER. Constant palpitations and horrific sensation of abnormal breathing (can't even describe it). I always feel like doctors are missing something and I'm gonna die. It's scares me to death (no pun intended) especially because I have three small kids. So you are not alone in feeling the way you do. I see a new cardiologist tomorrow so I am hoping for some help. 

5 hours ago, FileTrekker said:

Honestly try it anyway. Blood mag levels aren’t even a good indicator. It does no harm to give it a try. I find it helps massively.

I for sure will. I definitely think it helps with at least some of my issues and that's better than nada! 

In breaking news! ...

The ER called me and said that they were having some lab errors on the machine that ran my Magnesium. So it might not be low after all. I'm honestly really bummed cuz I was hoping this was a big ah ha moment and so many of my symptoms seemed to fit. I just had blood drawn to re-check at my PCP but the results may not be in for a couple days. I'm feeling pretty hopeless. 

1 hour ago, andybonse said:

It's so spooky I came online to post this exact same thing.

Mine has been hanging around 0.68-0.79 mmol/L - I am on Omeprazole which can cause hypomagnesemia, so I lowered my dose to see what happens, I have increased the amount of magnesium I am eating also to 400+ per day plus a magnesium supplement. Can you find out what your levels were? Any symptoms?

I have also ordered a red blood cell magnesium test which is a more accurate test of the magnesium in cells!

 

Andy

.8

Tons of symptoms (hence the three ER visits), but idk which ones are directly related. 

Persistent tachycardia (even after iv fluids and hours of laying down)

Chest pain (way worse than usual)

S.O.B. (although this has been my most persistent and bothersome problem since pots)

Back pain 

Muscle twitches ( including a wiggling right below the sternum in the stomach that I find extremely disturbing, but doctors seem all too unamused with it)

Palpitations (of course)

Nerve pain (at least I think it is nerve) 

And for the grand finale (newest symptom and incredibly disabling and unsettling) every time I'm walking my entire leg goes numb (starting from foot and working it's way up leg to lower back and abdomen)

On 1/8/2019 at 8:13 AM, FileTrekker said:

All perfectly normal, believe it or not.

If you're getting a handful a day, honestly, take my advice and celebrate, rejoyce, be bloomin' chuffed, cause I currently get around 2,500 of these a day and it's an absaloute nightmare.

But yes, alcohol is a very well known trigger that's pretty much guaranteed to bring them on. Unfortunate I know, but, worth knowing. But if you're happy with knowing that you'll get a few PVC's for drinking, then, that's up to you, there's no harm in it. But yes they'll happen regardless, just maybe less frequently.

The reason why they make you want to cough afterwards is due to the compensatory pause. So what happens is that the PVC / PAC kicks in and the heart beats early, with not much blood. Now there's a compensatory pause while the heart refils, however, as this takes longer there's more blood than usual filling into the heart. Then, when the heart pushes all this extra blood out due to the extra refill time, that's often why you feel the harder beat. However, it's also possible as a result of this mechanism for a little bit of fluid to then leak back into the lungs and that's why you need to cough, to get rid of the tiny amount of fluid. Then you almost immediately feel better.

So again it's all perfectly normal and unless you're blacking out or feeling really really unwell I'd not pay any attention to them.

However, one other thing I know, try eating more potassium and magnesium rich foods if you can. That will help in a vast majority of cases of mild ectopics. Maybe speak to your doctor about magnesium supplements, too.

You called it with the Magnesium! I'm in the ER and my Magnesium is severely low. About to receive some via iv. 👍