Bluebonnet08

My cardiologist recommended "Alive Core" a little EKG monitor that you can carry with you, it actually fits on the back of your smart phone if you have one. I just got it and it's really neat! It was $99 and then you download a free app on your phone and whenever you feel like it, you can record your heart rate and it tells you if your EKG is normal. If you had a really bad episode or concerns, you can pay $9 for a board certified cardiologist to analyze it within 24 hours, all you have to do is send it in via your phone. It's so easy to use and I'm not tech savvy at all! I just wanted to let you know... I am someone who finds peace of mind by monitoring my condition (blood pressure cuff, pulse-ox, fitbit...). I love this new tool! You can also save certain sessions and send them in to your cardiologist or doctor.

Before I got my diagnosis, I thought I had some kind of hypoglycemia, turns out, this is part of POTS. I cannot eat high carb or high sugar meals. I also can't eat large meals or I will get terrible episodes. It's gotten worse towards the end of pregnancy, but the symptoms are improved but cutting meals in half, which you could try as well.

I'm sorry you are having these issues. I always find it interesting when attacks are occurring at certain times like you describe. Mine are very similar. Are you eating a heavy meal before bedtime or anything like that? I've read that heavy meals or high carb meals can trigger POTS episodes by decreasing blood pressure. I've had to cut my meals in half. I had a cardiologist tell me that chest pain doesn't always mean heart pain... it could be the stomach or even a diaphragm that is having spasms. It sounds really encouraging that your events have improved for one month and even four years! Could it possibly be a severe allergy to something (food, medication, otherwise)? I would keep a careful journal of what you are eating and when the events are occurring.. maybe you are having a bad reaction? Just a thought.

@p8d-I really want to test for Hyper-Pots. I haven't had my catecholamines checked. What kind of testing did you have done? I've been to two different autonomic centers, but one focused more on looking for autoimmune causes (which they didn't find) and nerve problems. They said they found "root cause" in 50% of cases, but they weren't able to for me. There is definitely some type of "surge" that goes on which feels like "fight or flight". I plan to go to Vanderbilt after I give birth to get more testing. They have been really against putting me on beta blockers right now since my blood pressure has been going very low. If I had a bad reaction to the meds and it went too low, it could possibly hurt the baby. They said I might be able to try something after the birth. @Pistol-Thanks for your support, it means alot!! I like your idea of trying to comfort the baby I should be reassured by the cardiologist... I had a month's worth of attacks looked at and everything was "normal rhythm".... they also did an ultrasound of my heart in which everything looked okay. It's still scary though when I get the surges. I try to stay calm, but one woke me out of sleep last night around 4am and I was just shaking for about 10 mins.

I saw a cardiologist today who said that I might 'outgrow' Pots. I haven't heard this before. I am currently 34 & have had it for 12 years. She said she rarely saw it in people over 40 or that it typically improved a lot by then? Has anyone else found this to be true?

I haven't heard anything about this or seen any research studies on this in regard to the condition. I do know that many medications have been shown to contribute to dementia/decreased cognitive function over time... so that would have to be teased out of the study. As far as I understand the condition, the body is trying to self-correct, the HR increases so that the blood pressure doesn't stay low. That is just my understanding though. Obviously much more research needs to be done. As for your personal experience, I've also found that medications can have many and unexpected side-effects. They effect each person differently too. If you feel like you are having weird side-effects, it's definitely something to look into further.

My "attacks" are as follows: Start to feel a "jitteriness" or "anxiety" like feeling. If I look at my FitBit, my HR is usually starting to elevate. My HR will then elevate up to around 125bpm for around 5 minutes... I feel shortness of breath, really uncomfortable, extremely anxious. Sometimes it goes down and I call this a "mini attack". However, sometimes it continues to elevate... my shortness of breath will get worse and I will start feeling horrible palpitations that makes me feel like I will die. My HR will get up to around 150bpm. It feels like "fight or flight" kicks in and I feel like I am going to die at this point. I try to stay calm, but it's so hard. I have extreme chest pain and shortness of breath. Gradually my HR will decrease and after 12-15 mins, the attack is completely over. I will then usually start shaking for around 5 mins. After the attacks I feel a bit disoriented, more "anxious" or alert and worried about another attack happening, a lot of times I get so frustrated with it that I just cry. I had a cardiologist monitor these events for over a month on a heart halter. He noted my HR going up quickly but said it was a 'normal sinus rhythm'. It's gotten worse towards the end of my pregnancy. I just wish I could stay more calm, but it's really hard when my HR goes above 140-150 with bad palpitations.

Interesting! I'll have to look into this, thanks!

Lately I've heard a few tips from nurses for reducing a fast heart rate/tachycardia which I am getting quite often now. The usual advice is to elevate feet and chug water. I've also heard the following: 1. Blow out your breath through a straw 2. Cough 3. Splash Ice water on your face (haven't tried this one)... Have you heard of anything else to quickly reduce a high heart rate?

Personally I would spend the extra money and get one with a back to make it more comfortable

My autonomic specialist said that showering was usually the hardest part of a person's day (when you have POTS). I use a shower chair now, run the water on cool, and lean forward a bit to wash my hair. It has helped a lot. Before I was diagnosed, I thought I would pass out in the shower. Part of the problem is also standing very still and letting the blood pool.. Now that I can manage, it's much easier. I am only 34, so "giving in" and getting a shower chair was tough at first, but I bought a comfortable one and it's so worth it to save energy and reduce symptoms.

They are doing awesome work! I started to see them before my pregnancy and they were running tests to look for the root cause of my CFS and possibility even my POTS (found low vassopressin). I am going to see them again once I have my baby. I think they are definitely a beacon of hope for all of those with CFS (often goes hand in hand with POTS). It shows that medical research is being done and things can change all the time. This center and especially Dr. Davis is giving me hope for the future.

Thank so much! I've had a rough few weeks. My POTS had actually been fairly stabilized for a little over a year. The past 3 weeks I feel like it has destabilized and it's been so much harder to control- very frustrating. Before the pregnancy, it had been a year since I had an attack and now I'm having around 2 a day. My HR is also up from doing something really simple. I'm currently at 33 weeks pregnant. I can't wait to have this baby. The OB-Gyns don't "get" it at all.... it's very difficult. Fortunately my husband has been very supportive and I am just trying to take it day by day.

One more thing... if you were shaky... you could ask them to warm the bag. Sometimes the cold from the fluid causes shaking. I would try to experiment with it a bit to see what helps you. It may have some side-effects like any other treatment, but it may also help to bring some of your symptoms down over time. You could keep a record to see how different rates or amounts are effecting you.

It's been variable with me. Before I was pregnant, I feel that I had stabilized my attacks/episodes with the lactated ringers. I was getting episodes where my HR would go up to 150 out of the blue-very scary. My standing HR was also high and I experienced extreme fatigue. I had to "tweak" my IVs and figure out what worked for me. At first it was a full bag every week to two weeks. Then, that became too much and I started to only get a half bag every 2 weeks. That kept me very stable for almost a year and I hadn't had an attack in over a year, which was like a miracle for me. My fatigue improved about 10% as well. Sometimes I would feel very badly the day of and the day after the IV. I could get signs of an attack or extreme fatigue... even emotionality like crying. However, it stabilized me so much over time that the side-effects were worth it. You could try running the bag at different rates or even trying different amounts like a half bag or 700ml to see how that effects you. I am now 33 weeks pregnant and while the IVs kept me stable until week 29, they are now having weird effects again... so, I definitely think things like hormones can effect it, but overall, before I was pregnant it was a lifesaver for me.

Thank you so much for your support. I did not realize it would get this bad, but I should have known that POTS is unpredictable! It was fairly well-managed until the last couple of weeks. Fortunately my husband has been able to work from home a little bit to help me through this rough period. I am really hoping it will improve towards the end like yours did! I was pregnant 5 years ago before I had a diagnosis, but didn't have these side-effects until the last two weeks. I'm not sure why they are occurring early now. I also had increased symptoms post-partum, but they weren't as severe as during the pregnancy.

I think the only "official" way to be diagnosed is via a tilt table at an autonomic center. They require that you come off all meds a few days prior to testing because it won't be an accurate reading otherwise. My personal opinion is that it is good to get the official test because then you will at least have the right information going forward. There are other types of dysautonomia other than POTS as well.

I have been on a heart halter for a little over a month with my cardiologist. He wanted to record my episodes since they have gotten so much worse in the last trimester of my pregnancy (I'm now 33 weeks). Today his nurse called and said there was nothing he could do for me..... she said and I quote "POTS is too complicated"....... so, he is referring me to an electrophysiologist, which may take a month to get in with. It's so frustrating because my symptoms are only getting worse and worse. I think my POTS was managed quite a bit, but the last few weeks, I feel like it's been going haywire. The episodes are more frequent (every day, sometimes twice a day), my HR will just randomly go up to 150-160 and I will feel a feeling of impending doom. I've also been getting some anxiety associated with the episodes. I don't know how much are hormones, but it's been quite scary. Has anyone had any luck with an electrophysiologist? Also, no one can advise me on my IV schedule anymore... I was getting 2 a week, but it seemed to be making things worse. I am just at such a loss right now.

I am not sure about the dextrose, I think I get lactated ringers without them, but I've had similar experiences to what you describe after an IV. Sometimes they almost seems like they trigger an attack 1-2 hours after I get one. It's very frustrating.

Peter- where did you buy that ECG waveform? How do you interpret it?

Does anyone else experience pain on both sides of the chest? When I get shortness of breath, it seems like I feel a pain or squeezing on both sides of my chest. It can last a few minutes or even hours.

I don't take florinef, but for me, it was a very fine balance with the salt, too much and I would feel worse. I get part of my salt now through saline IVs which seems to help. Also, a few years ago I had a complete iron panel and my ferritin was very low. I worked for a year to get it up and it has helped a lot with the lightheadedness.

Thanks Pistol... glad I could help a little. I understand exactely how you feel though and definitely have my days of discouragement as well. However, my HOPE is that research will improve our situation. Lainy - The supplement is actually called "Deep Sleep". I found it at a Health Food store. Nothing has ever helped my sleep and I am super sensitive, but this did! I can't take it while I'm pregnant and I can't wait to deliver this baby to take it again and get some restful sleep! haha I am not sure if I can post a link to a product on here, but it's on amazon. https://www.amazon.com/Deep-Sleep-Supplement-California-Passionflower/dp/B001ECXEKG/ref=pd_sim_121_2?_encoding=UTF8&pd_rd_i=B001ECXEKG&pd_rd_r=JV541A4FKZ6SYGVY587M&pd_rd_w=GHEe3&pd_rd_wg=nV4ya&psc=1&refRID=JV541A4FKZ6SYGVY587M

I know what it's like to feel this way. However, I have reminded myself that as hard as it seems, no one can predict the future. There is research going on in the field of dysautonomia and some people do find their root cause, which can sometimes be treated directly. I know it's easier said than lived, but that is what I keep striving for. I have not found my "root cause" yet. I have been ill for 13 years, since I was 22 years old. It's been a battle, a long road, but I am still going to fight. It is frustrating to see other healthy moms so easily doing what I cannot, it's hard. Yet, we never know what others are going through either. I truly, truly understand where you are coming from. I try to keep my focus on "the next steps"... for me that is seeing two new specialists after I finish my pregnancy. I've decided at this point, I will only see those in the top of the field, regardless of what that takes. I try to write down my symptoms and address them one at a time. One of the most important I've found in managing the emotional aspect is sleep. Before I was pregnant I took a "deep sleep" herbal supplement that helped. It was the only thing that helped me so far (along with magnesium at night). I honestly think it's okay to feel resentful sometimes.. it's okay to embrace what you feel... this illness is HARD. However, I don't think age or anything else is nessacarily a barrier to getting well in the future. You never know what will happen that could create improvements or even full wellness for you. As my husband says... nothing is possible until it is! I think about a disease like B-12 deficient anemia in the early 1900s... people used to die from it, but they discovered the root cause and now people can just take a vitamin and survive. Things change all the time in medicine and treatment. Sorry if this is a little all over the place. I have the same thoughts and feelings as you, but just remember that you don't know what the future will hold

Now that I'm in my 3rd trimester of pregnancy.... Resting - 70-80 Sitting - 95-105 (sometimes as high as 115) Standing/doing something basic while upright- 110-130 "Attack" - 135-150 Before pregnancy it was all slightly lower. As for how long it takes to slow down... when I have an "attack", which comes on randomly, it lasts for about 15 minutes. It goes up VERY quickly and falls back down very quickly again. Very scary though because it occurs out of the blue. Wanted to say... I"m not on any medication, but do IVs twice a week. Before pregnancy they pushed the HR down a bit.