Help! Pregnant With Pots Flare Up & Pes!

[Clairefmartin]

Hello all,

I have had POTS for 8 years now, and had my son 3 years ago with no complications - actually by the second trimester I felt better than I had in years and went off all meds. Had an epidural and vaginal birth, recovered quickly, and have not been back on my beta blocker or florinef since. Was taking 1 mg Klonopin (.5 2x daily) when I found out I was pregnant again, and immediately saw the OB and started coming off it.

While decreasing the dose, my POTS sympotoms went bonkers. Within 10 days of finding out I was pregnant, I went from almost med free and very active, to being completely bed ridden with extreme dizziness, fatigue and weakness, increased tachycardia, and a new extra fun symptom - vertigo.

I have now been in the hospital (been home a total of 6 days) since the first week of January, and am only 14 weeks pregnant, and am freaked out. In late January a PICC line was put in so I could go home with fluids, but instead of home they sent me to a "rehab" nursing center (I have been unable to sit up or stand for more than 2 minutes woithout feeling like passing out, and the vertigo kept causing me to fall). The nursing center failed to use heparin and flush the PICC line, and I developed 5 DVT's along the line, as well as a big fat clot in my jugular vein. I went home for a day and then was sent back to the ER where they finally discovered the clots. I was in the hospital for 8 days, all the while on fluids, and the pressure in my head, neck, and chest when standing kept getting worse. They decided to keep the PICC line in and sent me home again, barely able to get mysef to the bathroom - I could not breath when I stood up. Home for another two days, then the home health nurses sent me back beacuse my chest pain got worse. Turns out I had multiple pulonary embolisms in both lungs and a new clot on my heart. The Lovanox (long acting Heparin) was not working, they have since found I need a really high dose to keep my blood thinned.

So....now I'm still in the hospital recovering from the PEs, still having major issues when I stand or sit up, there is insane pressure in my chest, my neck, and in my head when I sit up to far. I'm also excreting more fluids than I'm taking in, so they are discontinuing salt pills, they think it may be making the fluid situation worse. The PICC line was removed, and I am running out of veins in my good arm, and they are going to try and ween me off fluids next week slowly and see how I do. They cut me down today to 75cc's/hour, and I feel horrible. I feel really dehydrated and my dizziness has gotten worse since they started decreasing the fluids from 150 cc's. My BP is lower and my heart rate higher, but they want to keep trying to get me off fluids.

I have a decent EP (cardiologist), but he's only had a few other pregnant POTS patients. My high risk OB docs are scratching their heads, but are willing to call Mayo to consult with the neurologists over there if I don't imrove. There are no local neurolgists that will even see me, they have been looking (and I have been looking for years) and they wont even talk to me. So if anyone has any ideas or suggestions, I'm feeling pretty overwhelmed and scared about everything. I may feel better and retain more fluids into the 2nd trimester, but no one knows of course. They are talking about trying florinef, but I'm freaked about how it will affect the baby. My blood pressure has been stable as long as I'm pumped full of fluids, but I'm really wondering why/what is cuasing my fluid retention issues.

Sorry this is so long....its been quite an ordeal! Thanks in advance for any input!

Claire

[iheartcats]

Sorry to hear this.

So your POTS (the first eight years)- was it moderate? Or debilitating? Mine is mild-to-moderate right now on medications depending on the day so I'm able mostly to function (like I can work a desk job, but am too worn out to do much after work so it's not a real normal life).

Then after your first child you were 'cured' mostly? What were your symptoms before the first child?

I wonder what would cause such a flare-up with a second pregnancy? I know pregnancy can trigger POTS, people have talked about that. But at this level? Can you contact Dr. Grubb in Ohio since everyone recommends him as the top specialist? I've not seen him myself but people really like him and maybe your Doctor can contact him for advice?

Good luck to you and let us know how things go. POTS is baffling.

[Noreen]

Welcome Claire-

To say it has been an ordeal is an understatement. How very hard to be away from your 3 year old and to be so ill.

Are they evaluating you for antiphosolipid syndrome (APS)?

Here is a link to an abstract on POTS and pregnancy - http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8159.2009.02430.x/full

by Blair Grubb.

I hope you are able to find some relief.

[icesktr189]

hi claire!

I know exactly how you feel. My POTS became unbearable after i gave birth a year ago. Its still an uphill battle everyday compared to how I was before I was pregnant. I used to be able to drive and work part time, and now I can barely sit up.

My blood work showed high levels of epstein barr virus AFTER birth. i dont think i had it before.

Also, my POTS was horrible during the first trimester, got a lot better during the second, and it was pretty bad again during the third. After birth, it was good for about a month, and slowly declined until i was bed ridden.

I hope you find answers and just know that it could change a lot during your pregnancy. Hope you feel better soon and good luck to you and your child :]

[MomtoGiuliana]

Hi Claire

So sorry for your frightening ordeal so far. I developed POTS with my first and only pregnancy. Actually, I had POTS prior but it was mild and never diagnosed. My first trimester was typical of a normal pregnancy with nausea and some light-headedness, then in the 3rd trimester I got progressively more ill until I was unable to stand and had to leave work, almost bedridden. Continued to be bad post partum until I got diagnosed and got treatment and since then have been pretty stable with mainly mild symptoms, my daughter is now 8.

I know typically my experience is the opposite of POTS patients--most seem to improve as the pregnancy progresses and they are able to retain more fluid. In the early weeks it can be hard to keep up with the ever increasing demands for more blood volume. So hopefully this will be your experience.

Definitely every pregnancy can be different so it can be hard to compare a previous pregnancy experience to the next one. I know some people on here have had one good pregnancy experience, only to have a far more difficult 2nd pregnancy, and vice versa.

The blood clots are not typical of POTS and I wonder if you have something going on along with POTS causing this to be so severe.

I can understand why the drs would be talking about florinef, it sounds like you do need some combination of meds to relieve your symptoms. Having a good high risk OB/gyn involved is a good thing.

Take care!

[HopeSprings]

Ugh, you poor thing. Pregnancy made me worse too. The one thing that stood out for me is that you are coming off Klonopin(or recently came off?). Have you thought about the possibility of benzo withdrawal? I went through it with Klonopin and it was extremely bad for me. I would think the fluid retention has to do with the pregnancy? I was verrrry POTSY my first trimester. Things settled a bit during the second, but really I was pretty sick the whole pregnancy. It's good at least that you are in the care of Doctors who can monitor you. I hope they can help you to feel better soon.

[lieze]

Hang in there-my heart goes out to you!!!!!

Keep talking to us Claire.

I'm going to pray for you today sweetie.

I was so scared my third and fourth pregnancy, not as sick as you are and not POTSY yet.

Had heart issues and daily contractions with my 3rd, and was sweverely anemic with my fourth.

I understand some of the pressure this puts on you, worrying not just about yourself but everyone involved.

[Clairefmartin]

Thank you all for the input and encouraging words!

Cat Lady - from 2003-2007 I took Toprol (beta blocker) and added Florinef in 2006 and it controlled my symptoms fairly well, I was able to exercise and work and lead a normal life. I did have to leave teaching in 2006 because of all the standing and stress, and that is when they added the Florinef. I went off meds with my first pregnancy, and then unfortunately miscarried at 8 weeks. I got pregnant again 2 months later, but had felt well enough to stay off meds. I threw up a lot with my son's pregnancy, but all my POTS symptoms were gone. I have been med free since, and just managed with the low dose of Klonopin. I have flare ups now and then of tachycardia and mild dizziness, but usually staying hydrated and eating smaller meals throughout the day helps, and I have been ok. I actually own two very active and stressful businesses, and have led a fairly normal life chasing my toddler around. I think that's why this is so hard, I have NEVER felt this bad, and my life has come to a screeching halt.

I was tested for all the genetic issues that cause clots, and only came back heterozygous for Factor 5 Leiden (increases clotting risks 4-8 times). The docs said that was the most common, and not a big deal, so that is good.

I had a scary night last night - after feeling totally dehydrated, weak, and very tachy all day, I woke up and could barely move. They took my BP and it was 86/40, which is really low for me. My heart was pounding every time I rolled over in bed, and I just felt so weak! They finally agreed to bump my fluids back up a bit to 100cc's/hour, and I drank a ton of gatorade, and I guess it helped a bit. My heart rate is still high when I'm laying down, but my BP has come up a bit.

I had a doctor tell me today that he knew his medical limits, and I was "over his head" and they are talking about trying to transfer me to either UVA or Hopkins (those are the only two close enough for medical transport). If anyone knows of any POTS docs within reasonable distance of Hampton Roads VA (Southeastern VA near NC) let me know. I feel like this is my chance to get some answers, I 'm in this terrible flare up and maybe I can get a more specific diagnosis. The only testing I've ever had done are tilt table and general orthostatic testing, I have lots of other weird issues that I suspect are sympotoms of other autonomic issues. My EP just does beta blockers and florinef, I've never even been tested further because I generally am ok.

Anyways, another long post - sorry to ramble. I do really appreciate everyone's feedback!!!

Claire

[Clairefmartin]

Thank you all for the input and encouraging words!

Cat Lady - from 2003-2007 I took Toprol (beta blocker) and added Florinef in 2006 and it controlled my symptoms fairly well, I was able to exercise and work and lead a normal life. I did have to leave teaching in 2006 because of all the standing and stress, and that is when they added the Florinef. I went off meds with my first pregnancy, and then unfortunately miscarried at 8 weeks. I got pregnant again 2 months later, but had felt well enough to stay off meds. I threw up a lot with my son's pregnancy, but all my POTS symptoms were gone. I have been med free since, and just managed with the low dose of Klonopin. I have flare ups now and then of tachycardia and mild dizziness, but usually staying hydrated and eating smaller meals throughout the day helps, and I have been ok. I actually own two very active and stressful businesses, and have led a fairly normal life chasing my toddler around. I think that's why this is so hard, I have NEVER felt this bad, and my life has come to a screeching halt.

I was tested for all the genetic issues that cause clots, and only came back heterozygous for Factor 5 Leiden (increases clotting risks 4-8 times). The docs said that was the most common, and not a big deal, so that is good.

I had a scary night last night - after feeling totally dehydrated, weak, and very tachy all day, I woke up and could barely move. They took my BP and it was 86/40, which is really low for me. My heart was pounding every time I rolled over in bed, and I just felt so weak! They finally agreed to bump my fluids back up a bit to 100cc's/hour, and I drank a ton of gatorade, and I guess it helped a bit. My heart rate is still high when I'm laying down, but my BP has come up a bit.

I had a doctor tell me today that he knew his medical limits, and I was "over his head" and they are talking about trying to transfer me to either UVA or Hopkins (those are the only two close enough for medical transport). If anyone knows of any POTS docs within reasonable distance of Hampton Roads VA (Southeastern VA near NC) let me know. I feel like this is my chance to get some answers, I 'm in this terrible flare up and maybe I can get a more specific diagnosis. The only testing I've ever had done are tilt table and general orthostatic testing, I have lots of other weird issues that I suspect are sympotoms of other autonomic issues. My EP just does beta blockers and florinef, I've never even been tested further because I generally am ok.

Anyways, another long post - sorry to ramble. I do really appreciate everyone's feedback!!!

Claire

[iheartcats]

Let us know how things go. How frustrating that things have been under control for you and then wham! everything is in chaos. Like others have said, hopefully once you move through the pregnancy things will improve but I know how important it is to keep you healthy and stable to that point!

At least the Doctor admitted you need further help - that's a good Doctor! Take care of yourself.

[lieze]

I am so glad they were willing to increase your IV for you.

I had an episode in the grocery and ended up in the hospital for observation and my heart did the same thing.

Every time I moved in the bed my heart rate sky rocketed.

To get up and walk the alarms went off my heart rate was so high.

It was strange.

I think just being in that state is exhausting.

It's like you've run a marathon.

[MomtoGiuliana]

Across the bridge to the eastern shore--there is a POTS doc in Salisbury, MD. Dr. Nsah. He used to be with Johns Hopkins. He is with Peninsula Regional Medical Center--the major hospital here on the shore with an excellent cardiac unit. I don't know if he could handle your case or not of course or if that would be your best option. He is a good dr however.

[MomtoGiuliana]

Hope you are doing ok!

[Clairefmartin]

Well, I am happy to report that I am at Hopkins, and have been meeting with lots of docs regarding my situation. They immediately came up with a fairly basic plan to get me off fluids and get my POTS managable, and I was really skeptical and a bit let down that they wont do any more testing because I am pregnant - but it is working! They outfitted me with thigh high compression stockings, calculated how much salt and fluid I needed to consume, and got rid of the IV fluids cold turkey. My POTS feels much better in terms of the dizziness and my blood pressure came up immediately after putting on the stockings. My heart rate has been running pretty high today, but is not too bad.

Now my clots are a whole other issue - it turns out I have a 2 cm clot inside my right atrium! This is not what I was originally told at the local hospital I came from, so its been a bit stressful. They say its attached to the wall of my heart and stable, so the blood thinners are all they recommend since the clot busting drugs are so dangerous. My lungs are not doing well either, when I stand up my o2 levels drop into the low 80's, and yesterday I had my first vasovagal event. luckily the doc was with me and recorded it and i laid down before passing out, but it was freaky.

They did get me a reclining wheelchair today, which I get to try out tomorrow, I am so excited to not be in a hospital room and hopefully get some mobility back (its been 10 weeks!).

And happily the baby is healthy and has a fast but healthy heart rate just like me Maybe its a girl (old wives tale). Thanks again for all the support!

[Noreen]

I am so very glad that you have had a measure of success at Hopkins. It is always good to hear some good news for a change. Let us know how the wheelchair goes and how you are feeling.

What blood thinner do they have you on?