Bluebonnet08

Mom to Giuliana- what were your main symptoms that caused you to leave work? Elevated heart rate? Did it improve a lot after 35 weeks?

I am sorry that you are going through this! Yes, it can and does get better for many... there are doctors who will help and there is more than one autonomic center in the US that will diagnose and treat POTS. There are many treatments and some doctors will be able to find your root cause. I am continuing to look for mine (may be low vasopressin). As for short-term treatments to help you improve, I would HIGHLY suggest IV fluids. I get lactated ringers at a hydration clinic. The fluids typically help to calm an initial flare and have helped me greatly in the past with coming out of flares. Increasing water/salt, compression hose, elevating feet... do you have a FitBit or a way to monitor your HR? That might be a good starting place too. I know it can seem really dark, but remember it's temporary. Things can and likely will improve. You will find lots of support and resources here.

Causes of tachycardia for me: PREGNANCY... heat, dehydration, walking up stairs, exhaustion, extreme stress, being upright for too long, certain times of day (afternoon) seem worse, humidity, not getting my IVs on time, hunger, most medications, BIRTH CONTROL PILLS, hormonal fluctuations, certain vitamins Those are just a few I can think of. Sometimes they still come out of the blue. Before I was pregnant and up until about 27 weeks, I was managing them more with IVs. Now, late in the pregnancy they are becoming unmanageable.

Thanks everyone. Mom to Giuliana- I am almost 31 weeks now and my symptoms are at their worst. A few weeks ago I was doing much better. Now, I can barely walk into a store without setting off an attack. It's getting a little scary how quickly my HR is increasing and how high it has been for simple things. It was much, much better before this period in my pregnancy. It encourages me a little that your worst symptoms were 32-35 weeks. I'm hoping that mine will get better again and not stay this way until I deliver. It's so scary. After I deliver I hope I can get an appointment at Vanderbilt. I am currently getting 2 IVs a week which were helping, but now aren't helping very much. Baby still seems to be healthy, which is good.

Sonya - how did they arrive at the diagnosis of hyperadrenic POTS if you don't mind me asking? I really want to get in to Vanderbilt after my pregnancy. What are your attacks/episodes like? Do you feel a sense of impending doom or like you will die? What do you do to manage the attacks? Mine have gotten so bad with the pregnancy, especially at the end. I am getting 2 IVs a week, but it's not enough to keep them fully at bay.

Is there a fast way to calm it down or get through it? It's getting so bad and I feel like I'm going to die every time, although I've been through it so many times and logically I know I won't

Hi Everyone, I have been reading about Hyperadrenic POTS and wondering if that is what I have. If you were diagnosed- what was the criteria that they used? What are your symptoms like and how do they differ from normal POTS? When I have "attacks" or "episodes", they come on suddenly, sitting or standing..... my heart rate elevates to approx. 150bpm, I feel like I can't breathe, feel like I am dying every time with a horrible sense of impending doom. Usually my heart rate goes down after about 10, sometimes 15 minutes. Does this sound like hyperadrenic POTS or just regular POTS? Sorry for all of the questions... my symptoms have always been bad, but getting so much worse with this pregnancy (almost 31 weeks). I had a terrible episode yesterday that lasted a long time. I get so much anxiety from them and don't understand why they are so bad. Thanks for any help.

Yes, I have random flares. For me, they seem to follow a hormonal pattern. You could keep records and see if they are occurring around a certain time in your cycle. When I am in a flare, I get IVs now at a Hydration Clinic. It seems to push back my epsidoes and my symptoms go down, at least for a little while. I have been much more symptomatic now that I am pregnant (third trimester).. I am getting some shaking/chills episodes that my OB said were hormonal....I think hormones do play a part in POTS.

Interesting - I was just reading about this on one of the CFS forums. The poster said she had the MTHFR mutation and that is why her doctor thought she was deficient. She now takes L-Methyfolate and B-12 shots and she said it has helped a lot with her symptoms. I would be interested to hear if it helps you as well. PPIs can definitely effect stomach acid and your ability to absorb nutrients. They are linked to a lot of things including kidney disease, cognitive decline.. I used to take them for awhile, but stopped. My heartburn was being caused by a birth control pill, so it eventually subsided. Maybe probiotics could help?

Thanks everyone for your replies! Peter- that is so cool about the personal ECG. I am going to look into that! Might be helpful.

Has anyone worn a heart halter? I wore one about 5 years ago, before I first got my diagnosis. Because my epsiodes have been increasing, my cardiologist wanted me to wear one for a month to make sure that everything is still okay. He thinks it's just because of the pregnancy (I am almost 30 weeks) but wants to make sure. It's kind of frustrating to deal with it, but I guess it's good that it rules out anything more serious with the heart. The episodes feel serious and scary, but the cardiologist says that my heart is still beating in a normal rhythm, which is good.

HI Caro- is she taking any type of birth control pill? It seemed to be a huge trigger for my POTS. I just wanted to let you know that it can effect some people very badly

I get IVs once a week. It reduces the frequency of the attacks and decreases the HR if I do have one. However, it hasn't taken them away completely and it seems to have gotten worse in the 3rd trimester of my pregnancy. I was told by a doctor to chug water as soon as you feel an attack coming on (1-2 cups), lie down and ELEVATE the feet. This means getting them fairly high. These techniques have decreased the length of my attacks. I also use a fitbit to monitor my HR and I set a timer on my phone because the episodes usually only last 10 minutes, so I focus on getting through it. But, it's absolutely horrible. I really suffer with them and my pregnancy has made it worse. Before I got pregnant, a test found that I had undetectable levels of vasopressin. I wonder if this is a factor in my POTS and attacks. I am going to look into more treatments after I give birth.

I was evaluated by Dr. Alan Spanos (https://alanspanosmd.com/). He was very thorough. Although I have some symptoms, it was found that I do not have EDS. I am still looking for the "root cause" of my POTS. I think it's good to have an evaluation by a trained specialist, that way you can confirm (or not) your condition. There are some treatments that can be helpful for certain types of EDS and it may be helpful going forward in the future.

I get saline IVs to help manage the tachycardia. I have cut down a lot on sugar and a lower carb diet seems better for me. I try to stay hydrated... I wear a FitBit so I can see if my HR is getting too high and I sit down. During an "episode" I try to chug water and put my feet up. I actually set a timer because my episodes usually last about 10 minutes... it helps me stay focused on the fact that, although horrible, they will end. I also have an at home pulse/ox meter and blood pressure cuff so I can monitor my symptoms if I"m feeling badly.

Yaz is a potassium spurring diuretic..... the progesterone used (drospirenone) has a much higher risk of blood clots than birth control pills that use a different progesterone. I think Yaz triggered my POTS.

Birth control pills made my stomach problems horrific with POTS. After I stopped the pill, my stomach issues improved greatly. I also had to stop all types of dairy for a few months, but I eat it now. The pill has lactose in it, so I am not sure if that was contributing. Lots of medications are lined with lactose and for some reason that seemed to trigger my stomach issues with POTS.

I'm sorry your daughter is having to deal with this, especially at such a young age. It can be very frustrating trying to treat and manage symptoms. A few suggestions I could offer... 1. If she is taking a birth control pill, I would consider stopping the pill. There is a lot of research on it and I believe it is what initially caused my POTS and also made me so much worse. I can send you a lot of research articles if you would like to review them. 2. I get lactated ringer IVs to help manage my symptoms. I am not sure if your primary care would be willing to write a prescription. If not, there are hydration clinics in bigger cities where you can just walk in and get one. It has helped me a lot. You could start slowly (half a bag) and see how she is feeling afterwards. It has been the only thing to help manage my tachycardia. 3. I am not sure if she's had a full iron panel, but I would get that along with a ferritin test. If anything is low she could take some extra iron. Increasing my iron helped immensely with my dizziness. 4. Vitamin D test is another good one to look into, as it is often low with POTS and can be easily treated. 5. If you can get your daughter a FitBit or something that helps to monitor her heart rate so she can see when she is over-doing it and rest, that might be helpful. You could also get an at-home blood pressure cuff from a drug store and check her BP when symptomatic. If if the BP is low, have her lie down immediately with feet elevated and chug a glass of water or two... should help to get it back up. This has also been helpful with my tachycardia. 6. Avoid heat and overheating.. things like hot showers or baths. A shower chair can be very helpful for managing a shower. Finally, it's a very difficult condition that I feel is not well understood by the medical community, even specialists. You have to be your own advocate and my advice is to research everything they tell you and make the best decision for yourself. Please be very cautious of antidepressants as they can cause serious problems and haven't been shown in any research to treat this condition, from what I understand (but are sometimes prescribed by doctors who don't know better...) I hope your daughter feels better soon.

Tachycardia is my worst symptom I think. How high does your heart rate go when you get an episode? The highest I've seen mine is between 150-157bpm. How long does it last? It's such a scary thing for me. Even though I've gone through it for years it doesn't get less scary

I'm really sorry that you are going through this. It sounds really scary. The only thing I can say is that you have to be your own advocate. I think it is really unacceptable that they dismissed you when you BP was so high. Medications can have all kinds of effects, even opposite effects sometimes. Your cardiologist is responsible for the medication he/she prescribes, especially if it caused your BP to get this high. They have to work with you until you are feeling more stable! I am just sorry you are dealing with this. Hope you are starting to feel a bit better now.

Thanks! I have an appointment with my cardiologist in March to discuss some of these things. My OBs seem relatively unconcerned with the labor. They just say I will get an IV. I've done a natural, unmedicated birth once before so they feel like it will be fine again. I am still concerned about having tachycardia while in labor. My symptoms were relatively stable but have been much worse in the 2nd trimester. I've had a couple more episodes where my heart races to 150bpm out of nowhere. It's so scary. I hope the 3rd trimester is easier.

Thanks for these responses! They are really helpful. I wish there was more research being done with this condition. kpflma, I do think there is a hormonal component and that birth control pills can trigger the condition for some women. I think it did for me. I did some testing back in August and it was found that I had extremely low levels of vasopressin. I am not sure if that is a contributing factor to my POTS. I was going to look into it further, but now I'm pregnant, so I'll have to wait. Pregnancy has been quite a roller-coaster ride with my symptoms, so it does lead some more support to a hormonal contribution in some cases. Thanks again for all your help.

I feel like the shower is one of the hardest parts of my day. This morning my HR was 150bpm when I got out. I'm sorry, I wish I could be more helpful. I think the morning is harder than the evenings. Do you get IVs? It's usually easier for me to shower for a few days after the IVs.

Hi - I currently get 2 IVs a week at a Hydration Clinic as ordered by my OB. It does seem to help me a lot. Before I was pregnant, I was getting IVs once a week for the past 2 years. The IVs have helped significantly with my blood pressure and HR. They also decreased the POTS "attacks" and helped my energy by about 5-10% overall. I was tested and found that I have very low vasopressin, so that may be in part why the IVs are helpful. Now that I am 22 weeks pregnant, I seem to need the IVs more and the effects don't last as long. There is definitely a hormonal component to the illness. I am sorry about the lupus, I don't know much on the topic. I will say, however, that I think IVs are a great treatment for POTs and CFS. There is a lot of evidence based research in support of the IVs for our condition. I'm happy to send you some articles if you would like.

Hi Everyone, I am currently 22 weeks pregnant. Before this pregnancy (which is my second), my condition had stabilized a bit. I was managing the symptoms with IV fluids and while I was still having a lot of problems, I felt better. During the past two weeks, I feel like my condition has worsened again. My blood pressure has been falling quite low (78/46 one day) and my HR has been up (150bpm this morning). I am getting 2 IVs a week now. Did anyone else get worse with their pregnancy? Did anything help? Did it improve during the 3rd trimester? Finally, should I try to have a natural birth again? If my HR is 150bpm just walking around what would it do during actual birth?? Thanks!