Ttt Today - Surprised At How Poorly I Did

[shan1212]

I was diagnosed with POTS two years ago when I was pregnant, but we didn't do a TTT because I didn't want to pass out while pregnant. Although, to be honest, I really didn't think a TTT would cause me to pass out because I never do . . .

But I did! They put me at 60 degrees, and it was immediately difficult. Mind you, I jogged for 40 minutes yesterday, so I'm not deconditioned. My HR shot up from 70 to 130, and I got queasy and woozy. Then I got super flushed, felt the adrenaline firing, and passed out at ten minutes in. I was just relieved that it was over.

Honestly, I really wasn't expecting to do so "poorly." I thought that after two years of learning how to manage, making lifestyle changes, etc., that I would probably have a HR increase of 40BPM or something, but that would be it. On one hand, I'm thinking, wow, I'm really sicker than I realized. This is me in an "improved" state. On the other hand, I'm thinking, well now I don't have to feel like I'm lazy when I scale back on activities because I don't have the energy. I'm doing pretty well considering.

The cardiologist gave me a prescription for Verapamil because I didn't like Metoprolol, and I'll continue my Florinef and Zoloft (had stopped Florinef this week in anticipation of the test).

[Guest Hanice]

Thats not good! So did you also get diagnosed with NCS too? You should be proud and see what a strong person you are to be able to do everything you have been able to do despite your illness! If I were you, ide be proud of me!

[shan1212]

Thank you Hanice! It's odd to feel proud of getting a bad result on a test but I am -- I need to look at it as "glass half full" and be thankful that I'm able to do most of the things that I want to (though not too much in one day, of course).

Yes, I was diagnosed with NCS based on this.

I see you got POTS after a second pregnancy . . . me too (well, during).

[Guest Hanice]

Thank you Hanice! It's odd to feel proud of getting a bad result on a test but I am -- I need to look at it as "glass half full" and be thankful that I'm able to do most of the things that I want to (though not too much in one day, of course).

Yes, I was diagnosed with NCS based on this.

I see you got POTS after a second pregnancy . . . me too (well, during).

How far apart your kids. Mine are a little less than a year apart. My dd was born February 2011 my ds was born January 2012

[shan1212]

Mine are two years and four months apart. I breastfed my first for a year, and when I weaned her I started having weird episodes of what I know now is POTS, but they were few and far between so I thought I kept getting the stomach flu or something. It was when I got pregnant with #2 that I was laid low by dizziness. Actually, my OB took one look at me unable to sit up on the exam table and said, "Oh, I know what this . . . what's it called again? . . . neurocardiogenic syncope." It turns out she was right. I'm very glad she was familiar with it, to say the least.

[Guest Hanice]

Mine are two years and four months apart. I breastfed my first for a year, and when I weaned her I started having weird episodes of what I know now is POTS, but they were few and far between so I thought I kept getting the stomach flu or something. It was when I got pregnant with #2 that I was laid low by dizziness. Actually, my OB took one look at me unable to sit up on the exam table and said, "Oh, I know what this . . . what's it called again? . . . neurocardiogenic syncope." It turns out she was right. I'm very glad she was familiar with it, to say the least.

Wow that doctor is a bad ***! Thats amazing that she knew! There are other people that got pots while pregnancy or after it that also think it was breast feeding. I didnt bf but I pumped for two months for each but I wish I could have bf my babies. I regret not trying more sometimes :-(

[shan1212]

My OB was very good from the medical standpoint, but I actually left her at 9 months pregnant with #2 because I began to suspect I didn't have much chance of avoiding a second c-section with her. But yeah, I know I'm lucky that she had seen it once before and put it together. The nurse who answered phone calls had been so patronizing to me ("Drink some gingerale." "I can't write you a note to get out of work." Um, thanks, I don't work! I'm just calling because I feel like death and I don't know why.) so I was like, "See!!!!!" when the doctor ordered me IV fluids right away.

Hanice, pumping for two months is hard work!!! You have to take the time to do it when your hands are baby-free, and then you still need to bottle feed the baby, plus store all the breastmilk and clean everything. It's exhausting. No matter how hard I tried I couldn't pump more than like 0.8oz per hour since I last pumped or breastfed. You should be proud that you were able to do that much with POTS and two kids to take care of.

Last summer my one-year-old was about 5 months old, so she was still exclusively breastfed, and my POTS got really bad. It was a really hard time because doctors kept saying they couldn't give me any medication because I was BFing, but I was felt so edgy and anxious and terrible all the time, and on top of that I had to be a milk machine every few hours. We actually got some donor milk so I could take Ativan a few times. Once I started Zoloft things got a lot bit better. Anyway, so I absolutely knew I wanted to wean her before this summer so that I wouldn't have to worry about what medications I take and all that. A few months ago she started only wanting to nurse once a day in the mornings, and that wasn't enough to keep up my supply, so that was that. With my first I weaned her on a schedule so it was nice to have it just "happen" and not have to feel sad about it. Well, not TOO sad. A little.

[misstraci]

First of all, It's good that you became very symptomatic (passed out), etc for the doctor. It's sometimes one of those things where, while at the dr office, nothing happens but the moment you get home, symptoms are spiking out of control. I hope the new medicine they gave you helps you more than the others did. I also developed POTS after my second child!!!

As I read your statements and you said you jogged 40 minutes the day prior, that is exactly what I wanted to post on here is that, why can I be ok (not really ok but not dying from) doing activity/chores/etc one moment but not be able to walk up the stairs or down the hall/street another time and feel like death. For example, I did some yard work last weekend and yes I feel really crappy doing it but it was doable. Other days, sitting on the train, riding home feels like I'm going to die... I don't understand.

anyways, hope that the answers you got were satisfying and that the new meds help!

[shan1212]

Misstraci, I know, it is such a mystery why you can be OK-ish sometimes, but totally wiped out by something small another time.

I do feel like two-years into living with this, I'm learning to anticipate when things will go bad with a higher success rate. It's such a fine line because sometimes what I need to do is push myself a little harder, and sometimes I need to go easy on myself. It feels like it's a full time job just trying to stay on top of it.

A few times recently I've thought I was doing OK and then carried my one year old upstairs to change her diaper, which brought on an attack. Now I've been more careful with easing into activity in the mornings and fluid loading, and that has seemed to help. So I think some of the "unexplained" episodes I had in the past were when I wasn't paying attention to my hydration like I should have been. Of course, as I told my doctor, it's annoying to have to do everything perfectly all the time. You let up on your vigilance for a minute and then pay the price for it.

And yeah, I'm glad I flunked the TTT. I think I always try to put on a brave face for my doctor; I don't know why. I guess I want her to know that I'm doing all I can on my end? But I think that maybe I have given her the impression that my case is mild by focusing on what I can do instead of what I can't, if that makes sense.

[Guest Hanice]

Did you and misstraci get straight to pots or did your symptoms start as cardiomyopathy? My symptoms started of as cardiomyopathy (self diagnosed) and then I went to my TMC doctor and he did lots of acupuncture until my cardiomyopathy symptoms changed to pots symptoms completely. I STARTD off with GI issues with the episodes (i no longer have GI ).

Now I went back to that TCM and he f'ed me up so bad. Now I almost constantly have a vibration in my chest that makes me feel like coughing and Im so pissed. He was worried about my insurance (his money) so he didnt even do the usual points he does. He missed some points too. I really really think he messed me up. I would never go back to him again. I would go to a different one though.

[Guest Alex]

Shan,

sorry to read about your TTT experience. It is unfortunate that we have to go through that to get the proper diagnosis, but now your dr has seen your reactions/symptoms so hopefully the treatment she prescribed will help you better manage your condition. Fingers crossed

I really admire you, misstracy and Hanice for being able to care for 2 little ones while having to deal with POTS as well, it must be quite challenging yet rewarding at the end of the day.

If you don't mind Hanice, what kind of symptoms did you have that made you self diagnose with cardiomyopathy? My understanding of that condition is that most people are asymptomatic and that it's chronic (it doesn't go away) but manageable with meds/surgery/lifestyle changes depending on the cause and the patient (someone in my family had that).

Alex

[shan1212]

Hanice, cardiomyopathy has never been on my radar before, but from reading the description, no, I don't think I have that.

I believe I've always had hypovolemia/POTS. I had periods of tachycardia in 9th grade and wore a heart monitor, but it was written off as "stress," of course. I have always had exercise intolerance that I was compensating for by avoiding sports. Always had trouble with my arms above my head. Couldn't run a block without gasping for air -- had to build up to slow jogging after six months of power walking. And this was all prior to pregnancy and diagnosis.

After I weaned my first (which coincided with the return of my period), I had weird bouts of dizziness and vomiting brought on by my period or air travel or dehydration. Of course, I didn't know what it was or what to look for, so I thought it was food poisoning or the stomach flu or something (though I should have questioned more because I have a stomach of steel and hadn't vomited in six years before that). So GI issues were one of my first clues though in hindsight I know that was just from the adrenaline overdrive I was in.

I believe that post-pregnancy my POTS got a lot worse because of the changes in blood volume from pregnancy and lactation.

I am eternally grateful that I have my two healthy children but let me tell you . . . pregnancy is not something I plan to do again! We will look into adoption if we decide our family isn't complete and I have the energy for another.

[Guest Hanice]

Alex

I think I had cardiomyopathy (the post natal kind does go away) I would get really strong palpitations like bad skipped or early beats. I would get many many strong skipped beats that came with instant diareah throught the day. I would sit in my house so panicked because I thought it was gonna kill me. When would bend over I would feel like my heart was gonna beat out of my chest. I was so scared. I started feeling better when I started walking and doing acupuncture, Thennnnnn the symptoms changed to Pots. I think it was because the tcm doctor had to switch up the treatment and he failed to do so.

Thank you for the compliments.. my husband had to switch his work schedule because of me he does almost everything at home for a month now. I feel so sorry for him. I am not a hero here. Not in the least bit. I ****.

[s-pot]

Hanice sounds not so nice, was not aware of pregnancy cardiomyopathy...lrarned something new today! Im a midwife so als interested in learning about new pregnancy related conditions!

Forgive my ignorance but whats a TCM doc? Never heard of this before....did he diagnose your POTS then?

Steoh

[Guest Alex]

Hanice,

yikes, that must have been scary for you. I remember when I started feeling my heart doing all sorts of funky things I thought it was the end of me so yes I can understand you were frightened...who wouldn't be?!

I've learned in time that skipped beats are a "normal" occurrence for a healthy heart and that worrying and obsessing over them was actually the wrong attitude as the more I worried the worse they would get. I've posted a link to a series of "articles" that do a pretty good job of explaining palpitations and skipped beats and the involvement of the vagus nerve in them - I will repost it here for you later on. They are written by a dr but they're not too heavy on medical terms, on the contrary, they're patient friendly and they helped me overcome my fears.

I've seen a naturopath, never been to an acupuncturist or a Traditional Chinese Medicine practitioner (I hate hate h a t e needles ) and she just tried pushing supplements and tried something called Bowen therapy with me. I stopped seeing her a long time ago as she wasn't really helpful.

Hang in there

Alex

[Guest Hanice]

Steph

A TCM means Traditional Chinese Medicine.

Alex

I would love to see those articles/article ♡

And yes.. having that cardiomyopathy was really really nasty scary. I wouldnt doubt anyone would be terrified!

I would try a TCM doctor that understands about dysautonomia because this guy that I went to didn't. Acupuncture is really powerful!

Shan

I also wont be having anymore babies! My husband got a vasectomy a couple months ago. But it does kinda make me sad that I cant have anymore babies. I want two more :-)

[shan1212]

It makes me sad too. I think without POTS we would definitely have a third. But I just think of most people in the world can't have as many babies as they want for whatever reason . . . finances, no partner, age, etc. My reason is POTS, but I still have to be thankful for what I do have.

I'm no hero either. I'm spending a fortune on a babysitter and a cleaning service so I can exercise and rest and save up my spoons for the stuff that has to get done. My husband wakes up with the girls every single day while I ease into being awake and fluid load. I stumble downstairs when he goes to work and we watch tv until I'm functional. Then I may or may not be up to doing housework during the day, cooking, taking the girls someplace, or doing anything when he comes home from work. I really wish I could carry more of my weight, but I try not to focus on that because it doesn't do me any good to focus on what I can't do. I have to focus on what I can do.

[s-pot]

This is one of my biggest worries if my pots continues this way....pregnancy and having children.

I have none yet but know only too well what it takes to get thru pregnancy birth a baby and meet their needs n ladies I do not know how ye get thru it with pots!

I worry bout my "spoons"... as you say Shan..i dont have enuf at the moment with no children I cannot imagine the pressure of having to balance it all n find the energy for children or then deal with the guilt of just not being able to do it all as I should either.

Its a tough one ladies well done for getting thru each day!

[Guest Hanice]

I cant imagine doing a pregnancy WITH pots omg. I dont know how you did it!

And spot sound dangerous to do that :-( I wouldn't dare

[s-pot]

Yea but when you have not had any children yet and would really love to its not as easy a decision as that either Hanice.

Cudnt imagine going thru life not having children but if my pots does not improve a **** of alot more over the Next couple of years I would feel almost irresponsible having babies I know Im not healthy enuf to look after. Its a toughie!!

[Guest Hanice]

I know I know.... I really hope you overcome it. Do you know your cause of pots?

[Guest Hanice]

Misstracie and Shan1212

Did you guys get epidurals?

[corina]

Hanice,

I had an epi recently when I had surgery on an herniated disc. I specificly chose the epi as Gen An really sets my dys off while I always was fine with an epidural. Unfortunately this time the epi set off my dys too. I really want to know what is in sedation like epi and gen an as they cause me so much trouble.

[Guest Hanice]

Corina

I had epidurals with both my kids vecause I was induced with both. The next little info that Im gonna give you might be a bit nasty so prepare! The man looked scary crazy but I gave him a chance anyways, because I was afraid that he might have been the only anesthsiologist on the floor that day, I didnt want to be on his bad side.

So.... he proceded to make really inappropriate scary jokes, and I told him how scared I was about getting this done. I was trying to feel comforted but to no avail. He never once tried to reassure me. The man started to take that needle/catheter and jam it in with a back and forth stabbing motion (and I remember my first epi was NOT like that).

Certain parts of my body felt horrible lightning strikes and jerked around like there was no tomorrow.. Then the epi didnt even work! He had done SUCH a bad job.

I really believe those people SHOULD be watched by another professional because they are behind you while the nurse is infront unable to see what they are doing to you. If they have the evil mind to want to hurt you, they CAN.

So the reason for my gory story is, for me it could have been the horrible epi that GAVE me dysautonomia.

And it's just anesthesia that has a bad effect on us.. Before I even had pots, I didnt know why I got so scred and freaked out after anesthesia. My bpm were probably causing major anxiety without me knowing it was the hr.

[s-pot]

Corina

They use a drug called fentanyl and bupivicaine in spinal epidurals. Fentanyl is a strong opoid and all opiods have an effect on supressing the nervous system.

One of the biggest effects immediately post epidural is a hypotensive episode and bradycardia...i have seen this many times in people without dysautonomia....i cant imagine what the efdect would be on us with dysautonomia already.

General anaes usues much stronger cocktail of opiod drugs to anaesthetise that most certainly wud effect the nervous system much more.

I am a midwife and I always wonder why in literature they recommend epidural for those with pots for this reason. I wud imagine that a drug free labour if at all possible wud be best. Althou the pushing/valsalva manoeveur at the end im sure wud cause us potsies problems too!