Bluebonnet08

Can you describe a POTS "attack" or "episode"

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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.  

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I don't have an actual dx as of yet, other than my EP said that I have BP dysregulation. But my high heart rate episodes would only occur at night and wake me from sleep. I'd wake up and could tell my pulse was rising - started in the upper 70s/lower 80s. Within about 10-20 seconds, it would be in the 150s/160s. With vagal maneuvers, cold compress on face and deep breathing, I can get the episodes to pass in 15-20 minutes. Currently wearing a 30-day heart monitor and the episodes they have caught so far have shown sinus tachycardia. 

I'm a bit jittery during and for a bit after, but nowhere near as bad as when I have to call 911 and go through all of that. I stay jittery for hours afterward in those cases. 

So, sounds similar to your episodes. But again, EP said I don't fit the POTS dx, but have some type of dysautonomia going on. 

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I've had the same symptoms.  For me I think an SSRI helped a lot but it took time to adjust and the symptoms were even worse for awhile.  A beta blocker also helped to blunt the hr increases.  I know it feels terrible.

It is possible it has a connection to slight changes in blood glucose--like the autonomic system over-reacts.  I think that could have been the case for me.  Eating more salt, fats and proteins and small meals (more frequently) and less carbs seemed to help me.  However you definitely want to talk to a dr about diet especially during pregnancy.

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@Bluebonnet08 - I so much know what you are going through!! I had these episodes frequently years ago when I was just diagnosed. It is so scary - yet the only way to get it under control is to stay calm, despite the fact that every fiber in your body wants you to FREAK OUT! So much more scary when you have a baby-on-board!! What helped me was beta-blockers, especially Carvelidol. I am not sure if you should take that while pregnant but maybe you could consider it after the baby gets here? Until then you might have to just do the old calming-down routine: sit or lie down, take even and deep breaths, remind yourself that you are present in the moment ( hold the baby in your belly and tell the baby to be calm - it will help you too ). There really is nothing else you could do - it is not your fault that you feel like this and trying to stay calm through it is the very best you could do. I feel for you but I know you will be OK! 

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I get similar attacks.  Methyldopa, an alpha blocker for my hyperadregenic POTS really helps.  My PCP said it is safe in pregnancy.  Have you had your catecholamines checked for hyper-POTS?

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@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.  

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@Bluebonnet08 I have hyper-POTS. I was diagnosed by TTT and norepinephrine levels which were elevated both resting and upright. My flares look like this: tremors, freezing cold, shivering, yawning, cold hands and feet, heart racing, chestpain, high BP and eventually syncope and seizues ( due to extreme vasoconstriction in the brain from the high Norepinephrine ). I was to Vanderbilt twice when my symptoms first started in 2009 but they failed to diagnose me. I then went to UTMC in Toledo where they have a worldrenowmned autonomic specialist and he did the blood test and diagnosed me on the first visit. Since then I have tried many meds but finally found a combination that works, at least my flares are not that often any longer and - although I am fully disabled - my symptoms are for the most part bareable. I hope this info helps - good luck! 

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@Bluebonnet08 my neurologist tested my catecholamines by urine and blood test.  As Pistol says the blood test involved laying in a quiet, dark room for a half hour, blood draw, then standing 10 minutes, blood draw.  I was first given clonidine which tanked my BP too much then switched to methyldopa.  It helps a lot.  Not perfect but what is? My attacks are similar to Pistol’s.  The other thing that helps is to fluid load, 1 liter or so before I know I am going to go somewhere or be upright for any length of time so I don’t get the BP drop which seems to set everything off.  Then my BP goes high but my cardiologist tells me that’s ok temporarily.  I don’t know where you are located but I have awesome, awesome Drs and staff in Milwaukee.  PM me if you want their contact info.

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@Bluebonnet08 Mine are very similar to yours when I feel an attack coming on.  I actually got diagnosed about a year ago after having symptoms for 2 years prior when I started nursing school (I'm 26).  I had initially thought my symptoms were occurring from maybe anxiety or a vagal response from blood or fear of surgical procedures because they were most severe when I was doing rotations at the hospital, but after many consultations with my PCP and a referral to a neurologist we discovered it was POTS. Typically when I have flare ups, my heart starts racing, I feel my legs going weak & I get VERY lightheaded and see floaters. If i can control it, i sit down or do deep breathing and it usually subsides after a few minutes, but I have had 5 instances over the past 2 years (not hospital related, only one was) where it ended up with me passing out. My neurologist has had me on fludricortisone 0.1mg for about 9 months now and just about 3 months ago we added a salt supplement (i use thermotabs) and I have had amazing results with it so that i can do my job! I also use compression stockings if im going to be standing for a long time. I still have instances where it gets pretty bad, usually in the mornings and especially if Im in a patient's room that is warm and dimly lit...still unsure why that triggers it.  I hope you find a therapy that works for you!

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I started having these attacks during my third trimester of pregnancy (the EXACT same symptoms), and that's when my orthostatic intolerance began as well. I really feel for you, I know how awful and scary they can be. After I delivered, I was put on metoprolol ER and although I still get these episodes, they are less frequent and less severe, HR doesn't get as high. I now only get 1 or 2 every few months (but it seems to throw my whole system out of whack for a week or 2 after). I have also been trying some visualization exercises to shift my attention when I get an episode and I think the distraction has helped to calm the fight/flight response faster. The normal EKG is good reassurance. 

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My attacks are just like yours. 

I feel this odd sensation that it is starting (usually I noticed my breathing changing) and then my heart is already racing by then. I feel dizzy, nauseated, very shaky, with sharp chest pains. Sometimes my hearing goes funny, or my ears ring. Mine seem to last anywhere from a few minutes, up to 20 minutes or so (occasionally longer). And then there is the aftermath of having the shivers. My body seems to convulse uncontrollably (but I am fully conscious and aware of it). My teeth often chatter. 

Truly is a bizarre, terrifying experience, but I get slightly more used to it each time. Still find them incredibly hard, however, and am still seeking medication that actually works. Metoprolol seemed to make things worse after a while - and I suspect it is because my BP was dropping low, so my automatic nervous system malfunctioned and falsely tries to "raise" my BP - thus triggering an attack. 

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10 hours ago, Scout said:

My attacks are just like yours. 

I feel this odd sensation that it is starting (usually I noticed my breathing changing) and then my heart is already racing by then. I feel dizzy, nauseated, very shaky, with sharp chest pains. Sometimes my hearing goes funny, or my ears ring. Mine seem to last anywhere from a few minutes, up to 20 minutes or so (occasionally longer). And then there is the aftermath of having the shivers. My body seems to convulse uncontrollably (but I am fully conscious and aware of it). My teeth often chatter. 

-YES, exactly @Scout the shaking & teeth chattering. 

 

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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.  

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Symptoms were definitely connected to eating/digestion for me.  My heart would pound and speed up about 15-30 min after eating, sometimes going on for 30 min or more (not nec up to 150 bpm as long as I was sitting or lying down).  It was always worse in the AM and more tolerable by evening.  I still get this symptom but it is less severe.  I was so hungry all the time with my pregnancy that it was hard to eat more frequent small meals but smaller meals and more fats and proteins and fluids definitely helped somewhat.  In addition to this however, I would also have episodes that felt like panic attacks where my hr would go up to 130+ and I would feel dizzy/anxious/weak, which may be more like what you are describing, these episodes may have been related to changes in blood glucose.  My endocrinologist thought it possible.

Does your HR generally rise when you stand?  That was the other severe symptom I had at your point in pregnancy.  It was hard to walk around a lot, I would feel weak and tired easily.

For me I only started to feel better once on an SSRI, and beta blocker--4 months post partum.  I am guessing I would have gotten better even without that treatment bc what I had was pregnancy induced.

Hang in there.

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@Bluebonnet08 My first attack ever happened at 21 weeks with my second pregnancy. Then around 28 weeks they began to happen weekly, then daily with presyncope and orthostatic intolerance by 32 weeks. From 32 weeks until 38 weeks was the worst for me, I think compounded by anxiety because I had no idea what was happening, no previous history of POTS. I think I remember them slowing down near the end. I could not figure out what triggered them because sometimes they were after eating and other times in the middle of the night or early am. 

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@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.  

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@Bluebonnet08 I did improve in some aspects pretty quickly after delivery, I remember being surprised 7 days postpartum that I was able to walk around a hospital cafeteria and take a shower standing up. Previously I was only able to walk very short distances and pretty much avoided showering because i got too dizzy. In the few weeks after delivery I forced myself to go for walks around the block, and it was sooo hard and uncomfortable (breathing felt so strange, constant headaches) but I knew I was really deconditioned by that point and it was the only way I was going to see improvement. Then I started the beta blocker and was able to do even more. By 6 weeks post partum I was driving again and taking my older daughter to summer camp. I felt exhausted and was still short of breath but I could function enough to take care of myself and kids for the most part as long as I paced my activity. 

I still have the sudden attacks but they became much more infrequent and less severe after delivery. (Only every couple months). I started taking Claritin and Zantac during my pregnancy because I had allergies & heartburn and have had some of my more severe attacks when I was not on those meds. But I have had them while on meds too. So not sure if there is a mast cell issue. Caffeine is the only definite trigger I have identified. 

The only things that I found to help those last few weeks of pregnancy were moving as little as possible, laying only on my left side, drinking an ensure and a glass of water before getting out of bed in the morning. And wearing knee high support stockings from the time I got up till I went to bed. I had totally lost my appetite (and was worried I was reacting to some foods, I still struggle with this, allergy tests negative but if you get an attack after eating something you get scared to eat it again). But when I forced myself to get more nutrition, tried to get enough daily protein for my baby, it helped me to feel a little better too. The anxiety was so bad, I had to try really hard to distract myself from all of the totally abnormal sensations I was experiencing. The more I focused on them the worse I felt. 

I can remember how bad it was. How a month felt like an impossible eternity. I would watch the clock and be glad that just a couple hours had gone by. But it definitely didn't stay that bad. And new babies are a lot of work but they are a wonderful distraction. I was too focused on my daughter to think about my symptoms. I kept the changing pad on the floor and slept on the couch so I didn't have to do stairs until I got stronger.

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