Courtney812

Ocd here...start CBT Monday. It's separate from the pots. But my ocd is intrusive thoughts. 

My ocd isn't to bad if I'm not in a health flare.. then the what ifs start in..and omg ill be like this and this sick forever. 

I'm getting better at remaining positive.. understanding the thoughts are just a thought not a fact and that stress makes me worse so my best bet is to relax. 

For whatever reason postpartum is so hard on my body. I to was bedridden for a bit. 

At the moment I'm 5wks and 5 days and I feel awful. Can't eat solids...had to finally give that up yesterday so on boost and soup today. My digestion goes before anything else and it sucks. Um so afraid with each flare ill just get worse...and never get better..  but so far... I've came out of each flare.. usually lasting 3 days- 3 weeks.. so I'm hopeful and trying to remain positive.

Well the intrusive thoughts wont stop.. And i had a nice 2 day stay in a ward due to suicidal thoughts because of this flare... 

In which I was told I have OCD... which makes sense. 

Pregnancy makes my POTS 100x worse.. postpartum....forget about it. I'm mentally in a very rough place due to all kinds of issues lately... with depression and bad OCD and aniexty...  which is why im not continuing the pregnancy because it makes me very ill.. And mentally I decline steeply. I'm on Prozac and ativan and a few other things. 

I honestly had tons of testing between 2013-2014. 

As i got better..with less severe flares lasting shorter amounts of time, I stopped looking for my why. 

But in the past 1.5 years I've been thru so much 

Divorced, moved to a different state , had to leave my kids with their more financially stable dad, fell broke both feet and a wrist, car accident in Dec. 2017, pregnancy, 8 week cold/cough illness, grandma died, pregnant again..and sick again..and tons of stress mixed in there from finances or relationship to just pure depression. 

I start therapy soon, the cognitive behavior therapy. I started Prozac.. makes my head buzzy.  But only been on it a week. 

Before my POTS was never normal.. my heart rate was very low and very high, my blood pressure was very low, very high and narrow.. it was a mess. GI symptoms the worst part usually but also dizzy, fatigue, brain fog etc. Hormonal surges out the wazoo. 

I guess if my POTS is back..its at least well deserved considering all I've been thru..and fought thru and lack of distressing. 

Literally the biggest ball of constant worry/stress ever. I guess that's where the OCD comes into play. 

I also have aortic and pulmonary regurgitation

 But... I just of course (who doesn't?) Want to improve again..manage my stress... and move onto longterm health 

Did each pregnancy get worse for you symptom wise? 

After my first sick for a few weeks 

2nd.. this is when I got diagnosed and took awhile to get to a functioning level 

Over the last 6 years I've lead a pretty normal life having to remember to rest or take it easy at times. Now I'm pregnant and feel worse than ever

stress gives me bad symptoms too... I'm starting to suspect adrenal issues, as i get very bad adrenalin surges, hormones affect my POTS more than anything. And stress. 

I definitely suspected adrenal issues before. 

I've just had a rough life, full of stress and it seemed that each pregnancy made me pretty sick postpartum and hormones mess with me during ovulation.  

Any really stressful situation makes me physically sick and I think that's what went on here. The hormones of pregnancy with the pure terror stress of the what if I get worse never get better... I just overloaded my system 

I also got divorced 1.5 years ago, moved.. had to change how I see my kids since their dad has them full time... which is obviously a big stress. Also i had a bad car accident that reversed my neck curve so the amount of stress I been under is large to say the least 

So i got diagnosed with pots 6 years ago after the birth of my 2nd child. Hr during tilt was in 30s laying and 180s upright. Overtime I improved. And was bedridden for a few months but got better,  Had flares but regained a 90% normal life. With no major flare for years. 

TW: I'm pregnant...for the 2nd time in 1.5 years and I'm so afraid I've broken my nervous system again. I'm not real functional at all. I've elected to end this pregnancy because of the acute symptoms and stress and medicines I'm on. I'm very scared that I won't regain my health.. and I won't be able to enjoy my kids i have and function. I'm afraid pots is back and won't go away again 

My Pots usually is triggered by stress... Well my grandma died last month and this month im pregnant, I was trying to lose weight to get my tubes tied... so I wouldn't have to make this decision. 

Can pots go from coming and going to constant? I'm afraid it will.. yes i have some mental health problems.. OCD with aniexty regarding my health and depression. I've been under a huge amount of stress.. can stress just make pots come back and not go away?! 

One doctor said moderate but my second opinion (by a top doctor who alsp.works at one of the top hospital for heart surgery said its a mild leak.

Anyone else with valve problems?

I have mild aortic leak and trace on another.

Does this mean VEDS? I have attached ear lobe but don't meet anymore facial features.

Im only slightly hypermobile in my hands.

I just dont know what to do anymore.

Scared about the leak... and if I did have EDS could I survive surgery or would my leak just keep recurring.

Sigh

Thanks so much :-) I know ive sounded panicked... thanks for all your insight guys.

I am trying to take the approach IF anything was to happen ill cross that bridge then.

Until then there is no point in worrying about the what ifs. I need to focus on what makes me happy...

Family, friends... leveling up in games.

My daughter's and when im able cooking and making cute hats.

Thanks so much for taking the time to respond.

What if I have eds would my outlook still be good?

I highly suspect eds as my underlying cause.

I even have a leaky aortic valve

Also does eds get worse with age and would it make pots more progressive as the viens stretched with age?

Ive never dislocated anything.

However my feet hurt and my hip but I figured it's because im fat

So if I had EDS would my pots then never go away?

I suspect I have eds and this is why

I have those bubbles on my feet when I stand and on my wrist if I press in by my palm

I can bend my fingers and thumb.

If I wanted... I could bite my toenails lol

I can reach past my feet when sitting legs out in front.

Does this mean most likely EDS?

My 4yr old daughter dislocated her elbow 3x in one year when she was younger, but it hasnt dislocated in 2yrs, we where told nurses elbow was common....

Im really depressed now... just one more thing I may have passed to my poor kids... sigh.

Plus I have a aortic leak its mild.

Im 24.

I ended up taking the zoloft this morning.

I broke the 25mg pill in half so I took 12.5mg

However and TMI I have horrible diarrhea today..

I also had problems in gym, just couldn't run like the other kids my heart raced and I was soooo tired after. A few times in the gym I remember my heart being 180 on the recumbent bike!

But it never ever bothered me.

The times id say for sure thats when I had bad symptoms where after pregnancy. So I do feel ive had this somewhat my whole life but pregnancy js what really made it mad.

I will advise my children of this so maybe they can avoid this happening to them. If it is genetic.

Im looking into mcad and eds and here is why

Eds; I dont really think I have eds... my hands are flexible that's about it. I have no scarring problems and never had issues with anything joint/bone related.

However my oldest (4) has dislocated her elbow 3x. The hospital said its actually kinda normal its a partial dislocation. And it hasn't happened again in 2yrs. And she is in gymnastics. Doctors said as she got older the joint would get stronger and this was true for her.

She also has cvs which is a vomiting syndrome. Luckily it's extremely mild only twice a year. And its also something most kids grow out of.

Mcad; zyrtec zantac helped my symptoms during a flare.

Thanks so much ladies. I started 12.5mg zoloft today as my depression was honestly severe.

And anxiety.

I am praying that this flare is a hiccup in my recovery and I will have another remission. I know flares happen I just freake out with

What if

What if. Etc.

My mom died at 38yrs old while I was pregnant with my first child.

So when I get "sick" I throw myself into a panic of omg im going to die.

Idk about you ladies but as a teen I was in a few serious car accidents one included flipping 4x on the highway and another a drunk driver pulled out in front of me.

That was in 2006 and 2008.

As a kid I always had some issues running and stuff and fatigue. My sister also has pots. And other autoimmune problems.

So idk if that will make a difference in my "recovery"

However I feel my remission was a good sign of good health to come. And today the 12th day of my flare I feel my best. So I think im coming out of it. So with that said... maybe ill just flare once a year and omg ill take it! Lol

Maybe I had very mild dysautonomia and the first pregnancy brought it out...but by the second pregnancy my body said ***** For lack of better words.

If you have Facebook id be interested in talking further, feel free to pm me, I could give you my facebook page

Mike that's very interesting... I was in a rollover car accident in 2006 (fatigue started)

In 2008 a car pulled out in front of me and another bad accident.

I have a bulging disc in my lower spine and my neck the vertebrae are narrowing... im 24. Can these things be fixed?

So after my first daughter I got sick for 3wks with a heart rate over 180 standing and felt like death but I got fully better...

I didnt know what pots was then

We had another child.. in that pregnancy I noted low blood pressure. But felt alright. I was tired but I had a 2yr old and was pregnant.

After that pregnancy I was hospitalized for 3wks with a heart rate 30s. Shooting up to 160+ standing. I had the million dollar work up and they couldn't find anything really wrong.

So I wad sent home and I was bedridden for awhile however I slowly got better. By 4 or 5 months I was better... I went and lived life for a little over a year... had some fatigue around my period but felt good.

Now however im in a 12 day long flare. Felt better yesterday and today. Hr going low and high again, intense anxiety and stomach hurting. Even a slight fever feeling.

Anyone who had what seemed like pregnancy induced pots get better? Or more functional? Or did your health decline over time following a more progressive route?

My sister may have pots too, plus I have flushing a lot too. Will this just get worse as I age? Im 24. Im so terrified.

I really dont have anyone trying to figure out the cause.

After the baby I was told the major fluid shift and hormone dump caused it and with time it would get better... well that was logical and with time it got better, for no reason other than time.. I was so happy to regain my life...but now im 12 days into a flare that happen for no reason :-(

I dont understand... im devastated, confused and scared. Im terrified of the possibility of a progressive illness... I have a 2 and 4yr old and I cant watch them. My husband has taken less hours, my MIL is helping watch the kids.

Im scared :-( I.just want this to go away.

Tomorrow is my pcp appointment.

Requesting hormone panel

24hr urine

8am cortisol

Blood work for like everything.

Please let it be something easily cured. I want to be apart of my kids lifes... be there with my husband.

My cardiologist gave me 25mg zoloft... I really dont want to take it

Yea zyrtec and zantac are really helping..

For one clears my sinuses. And I have alil more energy, less brain fog.

Whats comorbid? Is mcad bad?

Why would I get better and back to normal for a year with no treatments then bam a flare for over a week now...

I dont have much wisdom for you OP because I am also a worried mom with little ones (2 and 4)

And I just got pots two days after the birth of my second daughter.

I just want to say everyone's words of wisdom was comforting.

I read the vertical ridges can be very normal

And the moons have to do with b12 or iodine.

Ill look into it further