Pregnancy & Pots/dysautonomia

[HopefulLady]

I am just wondering how many of you started to develop autonomic dysfunction after having a child. For me I had never been sick until after the birth of my second child. I was 21 when I gave birth to my daughter and from that point on I started having problems with dizziness and tachycardia among some other disturbing symptoms.

I have read that woman who develop pots during childbirth or after childbirth their prognosis to get better is not very good

But I am also wondering why woman can develop pots after childbirth what happens to our bodies that we are left with such an awful illness. Especially when your young and healthy before hand and never had any issues during pregnancy?

I fear that I will be required to take this Effexor for the rest of my life. I don't want to be dependent upon it for that long. But I also know that without it I am doomed. Has anyone who developed pots during or after childbirth been able to go off all their medications and lead a normal life with little or no symptoms? It's been 10 years since the birth of my daughter and 3 times I have gotten off the Effexor only to have to go back on it because my symptoms return and are life altering to the point I cannot function.

[MomtoGiuliana]

I developed POTS during pregnancy. My symptoms were severe for about 6 months. After that they greatly improved. I have flare ups, but generally I have been able to live a normal life without meds most of the time.

[njfainter42]

I developed POTS and NCS about 3 years after pregnancy...I take cymbalta (low dose) and will probably need it forever but I have greatly improved with the med even though I do have some fainting episodes with stress/exhaustion. I did become hypothyroid right after pregnancy which may have led to my POTS which came on with the stress of an unrelated surgery and accident.

Edited August 27, 2011 by thankful
Removed quote - use Add Reply button at bottom of page

[mvdula]

Hi Hopefullady,

I am not certain about the cause of my POTS; I have PSVT, an ablation, then my 4th pregnancy in that order over a few years. Then, I was Dx w/ POTS after I weaned the baby when he was about 1 year - that was a really awful time symptom-wise - kept having unexplained sudden terrifying symptoms. So, I think maybe the SVT heralded it or the ablation may have brought it on, but the hormone changes during weaning certainly brought it ON. Sorry I can't offer more insight than that, but you are not alone.

I don't take any regular meds....there may be some that help me, just haven't found them and am scared of meds, so not willing to try much unless I thought it would really help. I'd be thrilled to find something that made a big difference. My symptoms wax & wane, have had a nice remission period for many months....not sure why.

I do take Klonopin occassionally as needed - probably maybe 1-2x per month - and only .25mg. Also, take Fiorinal (a barbituate) for migraines 1x per month - that's all in my sig line.

[mvdula]

also, where did you read about the prognosis for women who developed POTS after childbirth/pregnancy? I have never been able to find any prognosis info for this type of onset.....doesn't seem like there are THAT many of us compared to some other types of onset.

[nooniegirl]

I developed symptoms around 6 months after the birth of my second child and finally got diagnosed a year later. I have good and bad days and I am not on medication yet, my consultant wants me to try lifestyle changes for the next few months (water, salt, stockings etc). I am fainting on average 4-6 times a month but I have it alot more under control since I got diagnosed. I am also having my iron levels monitored as they think my body can't retain iron and this may be making things worse.

I have been told the POTs may well disappear as quickly as it came on so here's hoping!

[HopefulLady]

also, where did you read about the prognosis for women who developed POTS after childbirth/pregnancy? I have never been able to find any prognosis info for this type of onset.....doesn't seem like there are THAT many of us compared to some other types of onset.

I actually read something on wikipedia about it here it is

Causes

The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.

In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.[8]

So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;

Alpha-receptor dysfunction may be occurring in some POTS patients[9]. Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients[10].

Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS[11].

Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels[12]. Free plasma norepinephrine also tends to be higher in these patients.

Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.

Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance[13], such as pure autonomic failure.

[mvdula]

Well, that is very depressing. I can't find any info (maybe there isn't any) out of Mayo or Dr Grubb, etc. on this subject - would like to know if they have any data on this....anyone?

And it's not clear to me exactly what the preceding incident is either. "During" OR "after" pregnancy? Childbirth? Those are all different things.

Unfortunately, I also had PSVT, and an ablation that preceded mine, so I have a hard time figuring out exactly what preceded the POTS. I KNOW that the real, awful, obvious symptoms hit me (hard, since I felt great and normal during the first 9 months or so of nursing) around 9 months postpartum, when the nursing was dropping off. So, whatever that hormone shift is was the immediate preceding factor. Can't figure out if I had some level of/was susceptible prior to that - during pregnancy and around time of SVTs/ablation, as I had a few complaints of PVCs and various types of chest pain then, but none of the other super-nasty terrifying symptoms til the 9mos or so postpartum.

[MomtoGiuliana]

I am a little skeptical of info in Wikipedia. I am not aware of any studies that have made any definitive findings about prognosis for any "type" of POTS. If this is the case, I am definitely not the norm. At least so far!

[firewatcher]

That part (post pregnancy) on Wiki has a [citation needed] flag. There is no footnote or article for it.

[Annaliese]

I am just wondering how many of you started to develop autonomic dysfunction after having a child. For me I had never been sick until after the birth of my second child. I was 21 when I gave birth to my daughter and from that point on I started having problems with dizziness and tachycardia among some other disturbing symptoms.

I have read that woman who develop pots during childbirth or after childbirth their prognosis to get better is not very good

But I am also wondering why woman can develop pots after childbirth what happens to our bodies that we are left with such an awful illness. Especially when your young and healthy before hand and never had any issues during pregnancy?

I fear that I will be required to take this Effexor for the rest of my life. I don't want to be dependent upon it for that long. But I also know that without it I am doomed. Has anyone who developed pots during or after childbirth been able to go off all their medications and lead a normal life with little or no symptoms? It's been 10 years since the birth of my daughter and 3 times I have gotten off the Effexor only to have to go back on it because my symptoms return and are life altering to the point I cannot function.

I developed hyperadrenergic POTS in my third trimester. At the time it was thought to be preeclampsia but then after my C section, I had severe anxiety and a standing hr of over 150 (plus high standing BP). About 2 weeks post c section I was hospitalized. I was very I'll for about 6 months but now at the 13 month stage I have been well enough to leave the house. I need help with looking after my children but I am gradually improving. When I first read that quote from Wikipedia I cried for about three hours straight thinking I wouldn't get better. I am new on this site and would love to hear more about others who have gotten POTS through pregnancy as I haven't a clue what my progosis is or how I should be treated. I live in Oz and am too I'll to travel to the US for diagnosis and treatment.

[Annaliese]

I developed POTS during pregnancy. My symptoms were severe for about 6 months. After that they greatly improved. I have flare ups, but generally I have been able to live a normal life without meds most of the time.

The same thing happened to me. I am one year post onset and I can only look after one of my kids twice a week for about 5 hours. In addition to that all I do is a bit of housework. How does this compare to your recovery timeline? How long was it until you were mostly recovered? Do you mind me asking what meds you take? What symptoms were the worst or you? Mine are the perpetual anxiety and chest pain(OI I am getting used to).

[MomtoGiuliana]

Annaliese--wow, I have rarely met anyone with my experience. I was also hospitalized--but this was after being severely ill for 3 months and being told I was anxious and depressed. It was finally at the hospital that I was diagnosed correctly. At that time I was really unable to do much of anything. Fortunately my mother moved in with us to take care of my daughter and me, so my husband could work.

My worst symptoms were weakness and extreme fatigue, I would say. I also remember going days at time feeling dizzy.

I was able to go back to work part-time when my daughter was 10 months old. I still would have flare ups frequently for another couple of years afterwards, but was mostly pretty functional after my daughter was about a year old. I took an SSRI (low-dose, Prozac) and a beta blocker (pindolol) for about a year. I believe the SSRI helped a lot, not sure of course. I eventually stopped the bb bc my blood pressure normalized and it was too low on the bb. I take a beta blocker as needed (I still get flare ups from time to time, but short duration) and no longer take Prozac.

[Annaliese]

Thank you for replying! Fortunately I was diagnosed a few weeks after symptom onset but only because my sister did some research for me and brought the articles into the hospital for the dr to read. Even though I was diagnosed with dys, the psychiatrist wanted to put me on antipsychotic drugs to ward off extreme anxiety (and admit me to a psych ward). I stopped seeing her for obvious reasons. At that point I started to self medicate (dangerous I know) and realized that increasing my beta blocker removed a lot of my anxiety. From then on my so called psych problems (ha ha ha) rapidly improved. In the beginning they put me on avanza (mirtazipine) even though I asked for an SSRI and it's taken me a year to get off it. I have been given a script for an SSRI and am VERY scared to take it because of the warnings about possible increases in anxiety. Did you have climb the wall anxiety? Did you notice your anxiety increased when you took the SSRI? When you say you were dizzy, did you have low BP when standing? I have high BP when I stand. I do get vertigo where the world seems bob up and down a bit but this is a vestibular problem rather than low oxygen to the brain problem. I world be very grateful if you could tell me more about your story.

[MomtoGiuliana]

Yes, anxiety increased along w other symptoms with the SSRI initially--esp first couple of weeks as I recall. My doctor told me to try to ride it out since it can take weeks for the SSRI to work and the side effects to diminish. So I did that and am glad I did b/c I do believe it helped in the long run.

[Annaliese]

That's really useful info, thanks! I might wait a few more months until I'm slightly better before I swap to SSRIs then (still have huge anxiety). Would any SSRI be ok or are some better than others? Did you ever try clonidine?