Bluebonnet08

Hi Alystew- I am currently 39 weeks pregnant, but have had POTS for a long time. I've recently been reading more about post-partum POTS. I read that certain types of anesthesia given during the birth process can deplete B-12 significantly and lead to POTS for some people. The B-12 levels need to be above 500+, so don't just trust that you are "in range", make sure to take a look at your own bloodwork. Another major issue with POTS is low ferritin (it also needs to be between 50-80). Ferritin is a type of iron that can be depleted during birth so I would make sure to have both of those tests and see the results, not just trust that you are "in range". I think it's really commendable that you are breastfeeding with POTS. It was very difficult for me. Unfortunately, my cardiologist and OBs know next to nothing about POTS, so you really have to be your own advocate a lot of the time. Have you tried Saline IVs? There is a lot of research showing that they are effective for helping the condition and they are safe with breastfeeding. You could also check your Vitamin D levels as well.

What are the supplements that you are currently taking and did you re-test your ferritin?

I'm so glad you are feeling a little better! That is huge! I use a fitbit to manage my HR. If it goes above 115-120 while I'm doing something, I try to sit back down and rest until it's lowered. My autonomic specialist told me about this. We found that my anaerobic threshold was a HR of 125, so if I spend too much time with a HR elevated above that I will "crash". I make sure I stay hydrated and avoid triggers like extreme heat. Try to avoid stress at all costs and try to keep blood sugar balanced... I think we can have better periods, especially if we start treating some of the root causes like nutritional deficiencies, dehydration, and many other factors. I'm really happy for you! I hope that will be me after the delivery

A cardiologist is usually a good place to start - you could also check for autonomic centers in CA. It looks like there is a good one at Stanford, I'm not sure how far that is from you. The autonomic centers are usually more knowledgable than cardiologists from my experience. Have you had a FULL iron panel, including ferritin? I would definitely insist upon one if you are having these symptoms. Ferritin needs to be above 50 to see decreased improvement in POTS symptoms. Anemia and iron deficiency can cause women to pass out. You can be iron deficient without being anemic. That's not to say you might not have something else like POTS going on, but I would make sure this is addressed too. For some reason, many doctors miss this test. Total Iron, Iron Binding Capacity, %Saturation, Ferritin

Very interesting - thank you for sharing! It is interesting to me that there are research articles linking low Vitamin B-12, low ferritin, and low Vitamin D to POTs symptoms, yet not one cardiologist or autonomic specialist has mentioned it. And I have been to 3 autonomic centers.. It seems a lot of people with POTs are very deficient in those 3 vitamins/minerals. It truly seems like we have to be our own advocates! I hope the supplementation goes well. Before I got pregnant, I was getting saline IVs and B-12 shots. I went over a year without an attack which was the longest I had gone since I got the condition... so I do think there is something to this! I can't wait to start the shots again after I deliver. Keep us posted

Here's an article published in the peer-reviewed "Journal of Interventional Cardiac Electrophysiology" The main results from the study were: The mean change of the OHQ was 3.1 ± 0.3 (95% CI 2.6-3.7; P < 0.001), with significant improvement in all the composite scores. Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from POTS. Here is the link for your cardiologist, although I suggest he/she reads the entire study: https://www.ncbi.nlm.nih.gov/pubmed/28185102 There are actually several studies on it, the Mayo Clinic is currently doing some studies as well. I find it infuriating that doctor's are willing to withhold this very uncomplicated treatment that has a low rate of side-effects and has extremely beneficial effects for those suffering with POTS. I don't understand it at all! Where I live, we have Hydration Clinics and I can just walk in and get one whenever I need it. I'm sorry you are having difficulty obtaining a saline IV. They have helped me a lot with the condition. I hope your cardiologist will become more educated and helpful. If not, maybe you can find one who will work with you to treat this horrible condition.

Have you had your ferritin checked? It's supposed to be above 50. I am finding out that many with POTS are iron-deficient. It's linked to POTS and increased symptoms. Dizziness is one of them.

Sorry, I am not sure about a blood pressure app, but I love the "Kardia" heart monitor app. It should work on your smart phone... very easy to use & share with your doctor. Can interpret the EKG right on the spot.

I'm sorry you are going through this. I was already diagnosed with POTS, but symptoms were so much worse being pregnant. Like you, they started to really get worse around Week 20. I am actually 37 weeks right now and it's been very rough. I am just finding out about low ferritin and POTS.. it can make the symptoms a lot worse. Ferritin is your iron stores, which can often be depleted in pregnancy. I would ask your OB for this test and if it's low (below 50), discuss taking extra iron to get it up, which might help your symptoms. The research article on ferritin & POTS: http://n.neurology.org/content/82/10_Supplement/P1.034. Unfortunately, I just found out about this and my ferritin was 8. I am taking extra iron now.

@MomtoGiuliana- My prenatal only had 18mg in it! I am now supposed to be taking 125mg, prescribed by my OB. I really thought I was going to die the last few weeks, I started feeling so bad... I know you can relate. Since taking the iron, I've noticed a difference. I am not "better", but the symptoms are not in the crisis state that they were in the last few weeks, thank goodness!! The palpitations had gotten so frequent and severe and it seems they are backing off a bit. I HOPE it continues. I wish I had known about this sooner.

@Pistol- Wow, a 4, that is really low! Anything under 20 is deficient and the research study said anything below 50 contributes to POTS symptoms. You also said you had Hyper-Pots, which I think I might have as well, and they said that is more common the lower the ferritin gets. I am taking "Ferro Sequels". I am now supposed to be taking 125mg a day, but I am also pregnant at 37 weeks. My levels were 8 and while I have had POTS for 13 years, I am literally at the worst I've ever been with the symptoms of POTS (palpitations, fatigue, shortness of breath, anxiety etc). I honestly thought I might be losing it I started the iron and within a week the horrific palpitations have started to decrease a bit. It is by no means fixed, but I am at least not in the crisis mode I was in last week. I think it's already helping. I guess the pregnancy depleted my iron which was probably already low. You can get a full iron panel which has iron saturation levels, iron binding capacity, etc, to find out more. I think I have read that proton pump inhibitors block iron absorption. I am just learning about this too, but I also read that B vitamins help absorb the iron and it's good to get B-12 above 500 and also have a good probiotic. Please let me know how you start to feel as you increase your iron. I am very interested to see if it will help. @Always Hoping - How high did you get your ferritin levels? @RecipeForDisaster- The research article says that ferritin levels should be above 50 to see some improvements in POTS symptoms. @Shannoncr- The recommendation from The World Health Organization says anything below 15 is deficient... and I've also read under 20 is deficient. The research on POTS shows that ferritin should be 50+ to see improvements in symptoms. I'm very surprised that I have not heard more about this. My levels are so low and I already see some slight improvements taking a high dose of iron. I'm starting to read about the link between post-partum depression and low ferritin too. I think this has big implications for POTS and could potentially help abate some of our symptoms. I'm excited to see if it helps me more!

This quote was taken from another article on "ProHealth" website explaining one young man's 80% recovery from POTS by getting diagnosed at Mayo Clinic with very low ferritin. "Several hypotheses have been put forth to attempt to explain the correlation between lowered iron storage levels and orthostatic intolerance. They include altered blood viscosity, red blood cell deformation and hypoxia associated mitochondrial dysfunction (all of which have been suggested in ME/CFS). Another possibility is abnormal metabolism of the neurotransmitters (catecholamines) used in the autonomic nervous system. Some researchers believe POTS patients with greatly increased sympathetic nervous system activation (hyperadrenergic POTS) might have the biggest iron storage issues of all." Article: https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672

I just found out that my ferritin was very low (8). I've been doing some research on it and found that low ferritin has been linked with increased POTS symptoms. Those with ferritin levels of under 50 were more than 3x likely to exhibit POTS symptoms: http://n.neurology.org/content/82/10_Supplement/P1.034 Here is more information on it.. very interesting: https://www.bumc.bu.edu/busm/files/2016/01/enrichment-poster-wallman-daniel.pdf I am more and more convinced that this is a very often under-diagnosed problem for many women. Iron deficiency is the biggest nutritional deficiency in the world, yet this test of iron is often overlooked.

I'm so sorry that you are dealing with this at such a young age Have you tried doing Saline IVs regularly? They helped me over time. B-12 shots also helped. Are you on the birth control pill? That seemed to make my POTS so much worse. Have they tested your ferritin and Vitamin D? I am finding that low ferritin can contribute to palpitations and low Vitamin D can contribute to fatigue, so it will definitely help to have those in a normal range. I have a FitBit that helps me to monitor to my heart rate so I don't push too hard and sit down to rest when it gets to elevated. Is your blood pressure low? If so, you can add salt(usually 2tsps a day) to the water you are drinking. You would need to ask your doctor, but at one point I was told by my doctor to do leg strengthening exercises, like pool jogging to help improve blood flow to the legs. Have you been to an autonomic center? Some try to find "root cause" of POTS. I've had potential causes looked at, like neuropathy, Ehlers-Danlos, and autoimmune conditions, but so far I haven't found root cause. Sometimes it can help to treat the condition if you find your root cause. Again, I am really sorry you are dealing with this. It's a difficult condition, but some people do improve their levels of functioning once they find the right treatment.

I've been reading a lot about low ferritin and apparently it's implicated in a lot of problems! I wish I had gotten it checked sooner. It can even ben linked to palpitations and shortness of breath. Obviously not the full cause of my problems, but not helping the POTS either! I've also read a lot about Vitamin D. Low levels are linked to depression, immune system problems, muscle pain... lots of things! I'm definitely going to try to get these levels up. It can only help at this point.

@Hippopotsamus- That is very encouraging that you felt so much better after giving birth. I cannot wait. I have already started a countdown (29 days) but don't know if I can last that long! My cardiologist discussed early induction, but I am hoping to avoid that. I am trying my best to manage, but it's worse than it's ever been. I have also been having a really hard time eating, because it triggers attacks. I've lost about 5 pounds. The anxiety has been absolutely horrible for me, the worst it's ever been. My iron was really low, so I'm hoping that might be part of the anxiety. I just feel constantly on edge waiting for the next attack. My husband is going to work from home next week, because I'm having so much trouble. All I know to do is limit carbs/sugar, smaller meals, increase iron, don't move around a lot... it's so limiting. I know what you mean about how time passes... each day is an absolute eternity. I can't wait for time to seem normal again after this birth!

For me, there is definitely a hormonal component. The pill can change the way you metabolize carbohydrates, change the immune system.. so many things... so maybe that is part of it. The pill is also 4x the amount of steroid hormones that women have normally in their body and I did not react well to that. I also don't react well to the increase in pregnancy hormones in the 3rd trimester. Some pills are worse than others... Yaz/Yasmin is a birth control pill AND a potassium sparring-diuretic. That is the one I got very, very sick from. I would research them carefully.

I went to the doctor last week and had some basic bloodwork. My ferritin (iron) was really low, Vitamin D was low (19) and B-12 was right on the borderline. I started some supplements, the doctor especially recommended iron since I'm 36 weeks pregnant. My symptoms have been so much worse the past few weeks... do you think this could be a partial cause? I'm really hoping if my iron goes up I will feel a bit better... my husband said he read that the shaking could be related to low iron.

I personally felt a thousand times worse when I was on the pill. I feel like it's in part- what actually triggered this condition for me. For me I think there is a big hormonal component to the disorder, as I felt the worse on the pill and during pregnancy.

@MomtoGiuliana-Yes, my HR has been really bad when I stand up. I went from being able to do some things and participate a bit in my son's day to being almost bedbound right now. It is horrible. I am struggling with almost everything. The attacks are still there as well, worse some days, but getting massive amounts of "anxiety" which I did not have before. It must be the pregnancy hormones but it's terrible. I think it might be somewhat connected to blood sugar/eating, but I haven't figured out what's triggering everything yet. @hippoptsamus- It's interesting you say it happened at 21 weeks, because my first episode this pregnancy happened at 20 weeks!! Until then, they were controlled through IVs. Also around 27-28 weeks for me they became bad.... and then flaring again even worst at 32 weeks. It seems like we are following the exact same pattern. I hope I will get better at 38 weeks like you (maybe after baby drops?). Did improve after the baby was born? It has been really bad for me and I am getting massive anxiety as well. I think the anxiety must be physiological (pregnancy hormones) because I have never felt this badly. What did you do to cope with your symptoms? Did you find that anything helped? I feel so lost. I still have almost 4 weeks of this pregnancy and don't know how I will get through it. I am barely sleeping.

@bombsh3ll- I agree that alot depends on underlying pathology in terms of treatment and even potential "recovery". I had some features of HEDS as well, but was not diagnosed with it. Like you, I was fine for 22 years and then developed POTS suddenly. The EDS specialist that I saw said that people with EDS will have symptoms for their entire life. How did you develop POTS suddenly if you don't mind me asking? For me, it started after I started a birth control pill and got a horrible case of food poisoning. I wish it would stop just as suddenly, but it doesn't seem to be the case. Thanks for all the input.. so maybe some people can improve depending on etiology of the condition? It is my biggest hope that I will at least have improvements over time.

I'm sorry your son is going through this. I do think that POTS can have an affect on mood/anger. However, you could also look into the Florinef. It is a steroid hormone and I've heard other people say they've had some pretty severe mood swings on it. It doesn't agree with everyone.

Thank you all for sharing - It is exactly what is happening to me now. They have never been so frequent or severe in my entire life. I am now 35 weeks pregnant and it has just been the past few weeks that they have increased to this level and intensity. I've had POTS for 13 years and had some really bad times with it, but this is the worst. My episodes are lasting around 15 minutes now and palpitations are the worst part. I have a FitBit and my HR usually goes up to 150-155 for at least 7-8 minutes which is really hard. It's very painful. For me, it seems to be somewhat related to eating, so I am keeping smaller meals/low carb, but it's still not controlling it. I'm having them multiple times a week, sometimes every day and the aftermath is bad too, with the shaking and I just don't feel well for hours afterwards. I've been getting so discouraged. Does anyone else find it might be related to eating or any other trigger? I just don't know what to do to manage the attacks.. they've been so frequent they are all I"m thinking about, getting so scared of the next one. I don't know what to do to be able to calm my system down a bit. @Scout- how often do you get these episodes? What do you do to manage and stay calm? @Hippopotsamus- how soon after delivery did you see some improvements? Did it continue to get worse until you delivered? I was pregnant before, but did not have this with my first at all.

I'm not sure, it works with my smart phone and the app is free. You could check out the website online to see. It's really neat and the cardiologist said it's very accurate in determining HR.

Thanks for all of your replies! I had never heard of people "outgrowing" it, except in some cases where it developed in childhood. I wish it was the case, but sadly, I feel like it is dismissive of doctors to say that. I would like to see some research or proof of that. I guess it would depend on the "root cause" of the POTS. I know there are many. Maybe in some cases the root cause can be treated and "recovery" or "remission" can be achieved. I do think hormones play a role as well. Maybe one day we will unravel more about this disease. Thanks for your input.