Causes of POTS

[Rachel]

For those of you who have POTS, I was wondering if you know the cause of your POTS. I realize that many people either can't or don't get to the point of having to discover the cause of their POTS, but if you do know I'd like to hear what the doctors discovered.

The main reason I am interested is I am trying to see if I can find a connection between my POTS and the miscarriages I have had. I realize that miscarriages are very common, many occuring before a woman even knows she is pregnant. And I know that there isn't any evidence that POTS actually causes miscarriages and that there are many women who have POTS and also have successful pregnancies. But I am wondering if there is a connection for some of us.

My POTS has a autoimmune cause. My body makes antibodies for M2 muscarinic acetylcholine receptors. These receptors are found in the heart, throughout the brain, the uterus, and many other places in the body as well. Because my M2 receptors don't work right, the messages from my brain to my body get blocked and this causes my POTS. I am wondering if this same root problem of my POTS also causes my miscarriages.

Do any of you know the cause of your POTS? And if you don't mind sharing, have you had any difficulty getting pregnant, or maintaining a pregnancy? If you have had a miscarriage, was a cause ever determined?

I have been working on researching this online, but unfortunately there isn't much information. Most of the studies have been done on rat uteruses. Which, although it can shed some light, it can't be translated directly to people.

P.S. My heart goes out to those of you who have gone through the painful loss of a child in a miscarriage.

[calypso]

Hi Rachel,

Just wanted to tell you I sent you a personal message in response to this post. It was too long to post here!

I am so, so sorry you have had to deal with multiple miscarriages. I certainly would want to know why/if this is at all related to POTS too. In my case, I tend to think my problems with my first pregnancy are totally linked to my developing POTS (or vice versa ... although I never really had a POTS symptom until after the pregnancy). Of course, I have no medical expertise and can't prove it. But I don't think it's a coincidence.

Anyway, feel free to e-mail back if you have more questions.

Amy

[Guest Julia59]

Hi Rachel,

I would be interested to find out more about this also.

I am diagnosed with POTS, but have no idea what caused it. I sometimes think it was chemical exposure. I have a chiari malformation in which the lower portion of my skull is too small for my brain and problems in cervical spine, and now other parts of my spine. That was also a thought that maybe my POTS originated from that.

I tried to get pregnant for years and could not. I do have a son 23 years old, but that was from my first marrige. In my thirties my second husband and I tried to have our own baby. The Doc told me my progesterone levels were real low, and that I could have had early miscarriages. He told my I would never know really----but maybe my period would be a little longer then usual.

WE gave up trying when I turned 40. I'm sorry you had to go though this---I know it can be heartbreaking.

Julie :0)

[Merrill]

Can you tell us how you were diagnosed with "antibodies for M2 muscarinic acetylcholine receptors"?

Also, have you consulted with a high-risk OB yet? There may be someone within your cardiologist's practice that you can talk to -- s/he may have worked with other pots patients in the past.

I too am sorry for your losses; I've suffered them too, but I do not believe POTS was the cause. I may, of course, be wrong...and I will never know.

[Dawg Tired]

I had 1 still birth (22 weeks) then 2 miscarriages - 16 weeks then 12 weeks. Then I had my miracle child. He was a 36 week baby but quite healthy. I knew I had some sort of heart related problem but no one ever figured it out. I also had endrometriosos and my mom had taken DES while she was pregnant with me and my sisters. We all developed endometrial cancer and had hysterectomies.

[MomtoGiuliana]

I am also interested in how you got your diagnosis of the autoimmune condition. I also wonder if mine has an autoimmune basis, since I also have Hashimoto's. I am very sorry for your losses. I have many friends who have experienced miscarriages. I know how devastating a loss it is.

I don't think there is generally considered to be a link between fertility/miscarriage/premature labor and POTS. However, there does seem to be a link between some forms of POTS to preeclampsia or pregnancy-induced high blood pressure.

I have POTS and have one daughter. I am fortunate not to have had any miscarriages. Following a difficult pregnancy I have chosen not to attempt further pregnancies.

Katherine

[Rachel]

Thank you all for your responses and for sharing your experiences, painful though they may be.

I wish I had more answers for you! I'm not exactly sure how I was diagnosed with the antibodies for M2 receptors. It was back in 1996. I had been going to a cardiac electrophysiologist for a while, but there were never any medications that worked for me. 10 years ago there weren't as many treatments as there are now, so we quickly ran out of options. After a year I was sent to Johns Hopkins to be seen by a neurologist there. At that time they were doing some sort of study and they used my blood in that study. That was when they found an antibody that the neurologist said was causing my POTS.

I have been trying since October to get my medical records from Johns Hopkins so that I can get more information on the antibody, but they still have not sent me the detailed information on that blood work. The only written evidence I have of an antibody to M2 at this point is the report from my cardiac electrophysiologist after she spoke on the phone with the neurologist at Johns Hopkins. When I get the comments on the blood work from Johns Hopkins I will let you know if I find any helpful information in there.

I'm not sure how common it is to check for antibodies. I think the only reason I was checked is because I had failed all medication and a study happened to be going on at Johns Hopkins that related to POTS.

No, I haven't been to a high-risk OB yet. I hope to go someday. But we don't have the best insurance, so I can't afford it at this point.

Hopefully I'll be able to share some more information with you in a few weeks on the M2 receptors.

Rachel

[Guest Mary from OH]

Rachel,

I'm sorry for your losses. I truly understand your pain. I am glad that you were blessed, as I was, with a child on earth to treasure as well. I would be very interested to know if you ever find out a connection to your POTS and your miscarriages.

I had 3 miscarriages prior to the birth of my daughter, Marissa. I did see a high-risk OB/GYN as well as an infertility specialist. The infertility specialist was useless and actually very unkind. Since I could GET pregnant and just had problems sustaining a preganancy, he wasn't really personally involved with me, IMHO. I wasn't a big money bringer inner like the in vitro, etc. I started progesterone shots (only had one), even though my levels checked out "ok". I had the most excruciating migraine in my ENTIRE life, ended up in ER.... Then, I got pregnant again before my next appt. (we were monitoring weekly HcG levels), found out I had already lost the baby (my levels were already going down). Was told by the tech, why was I bothering coming in again, I had already lost the baby! I (of course) started bawling and asked if there was someone there whom I could talk to. She said the dr was busy. I asked if I could talk to a RN. She told me to go wait in the lobby (mind you I was still bawling). I then asked the receptionist if I could borrow the phone to call my husband. She handed me the phone right there in the middle of the waiting room so I could call my husband and tell him we had lost yet another baby!! I turned my back so I didn't have to see everyone, but I could feel everyone's eyes on me. I was never so humiliated in my life. I then had to sit there in the waiting room for about 45 minutes for a RN to call me back. She basically had nothijng to say. I never went back to that office again!! Thank GOD, I was blessed with my daughter. I told my husband I was willing to try one more time. And if it didn't work, we would have to adopt. I couldn't go through this again.

Please, if you find anything out, I would LOVE to know. They also suspected I had an autoimmune disorder, but were unable to diagnose it. I was dx with autoimmune disorder unspecified. I was high risk when I carried my daughter because I had a fever (which I now know is from my POTS). I had level 2 ultra sounds frequently. My daughter is "ok" except for a severly damaged GI system, migraine and probably POTS. I thank GOD every day for her.

I wish you the best!!

[blackwolf]

2 miscariages, 1 son-now 11, 5 misses, daughter- now 7. that was enogh for me, my sis never did have kids, 11 misses.

blackwolf

[ethansmom]

This is a very interesting topic. My POTS definitely has an autoimmune base- I had always suspected it but never knew how to go about finding out for sure- until recently. I found a doc who specializes in CFS & autoimmune disorders a few months ago. He did some very extensive tests, and we found out that I have a mild mono infection that has been present for quite some time, as well as Lyme disease- which he believes to be the sole cause of my autonomic nervous system failing. Since I was pregnant at time of the tests, he could not get a 100% accurate reading and will be repeating them as needed after this baby is born- and hopefully doing some treatments for the Lyme which will stop progression of the illness. Interestingly, I had a normal & healthy pregnancy with my son (now 2 years old) and so far this pregnancy is very healthy as well (I am 19 weeks along). I have had the awesome fortune of getting pregnant without any trouble...and also haven't had any miscarriages. I wish that more was known about POTS and it's effect on fertility and the ability to carry healthy full-term babies, because it seems that lots of women who frequent these boards are having a wide array of problems in that vicinity. Maybe someday we will have more information...in the meantime, I hope for your sake that you all who want babies will have the experience of motherhood one day- and may we ALL have the fortune of experiencing POTS free days someday

[Rachel]

Just wanted to say thank you to everyone who replied. I appreciate you sharing your stories and your thoughts on the subject. Though POTS doesn't seem to cause miscarriages, I am still holding to my theory that the two can be related in some cases. So until I can find proof otherwise, I'm going to keep doing my research. You should see my stack of papers and information at home!

Thanks again,

Rachel