Bad Day. HyperPOTS..... or something else????

[BuffRockChick]

Hiya!  I have preliminary POTS diagnosis, waiting for neurology consult and further testing.  I suspect I have HyperPOTS after reading forum members with HyperPOTS describe their symptoms, and because informal short stand test at doctor's office showed increased blood pressure.  I regret not asking how much it went up.  I had systolic pressures 80 through 120 during the appointment and standing up was higher than that.  My normal, calm, sitting in doctor or dentist office eblood pressure is usually 90 - 115 / 50 - 80.  I ordered a wrist cuff to play with at home.

Today I experienced something other than my normal POTS symptoms, but it wasn't the first time I've experienced it.

It was kinda like flight-or-fight response, minus the sweating.  (I do sweat, it wasn't the same as my adrenaline reaction.) I had some sorta-tachycardia lying down, nothing extreme, but enough my fitbit automatically recorded aerobic workouts while I was lying or reclining in bed!  I collapsed twice -- without tachycardia -- but with my normal POTS symptoms, plus an awful pounding headache.  The most distressing symptom today was extreme irritability, even aggressiveness.  It felt like I'd overdosed on caffeine, but many times worse.  Usually I get snappish and somewhat irritable when standing too long - and usually I'm aware of it, it correlates closely to tachycardia and is resolved immediately upon lying down.  Today I was physically reactive, nearly raging, in reaction to every little stressor and it wasn't resolved with rest - except for rest plus silence.  When me kids were napping, the physical symptoms and irritability dissipated after about 30 minutes, only to return full force when they were getting into stuff again. I also noticed my hands were *not* purple mottled today, they were flesh colored to pink.

The episode ended the way my POTS episodes end, with gradual tolerance of activity.  It's over now.

I wonder if this was some kind of adrenal storm or hypertensive crisis?  It was insane-feeling.  

Yesterday I felt unwell, but kept to my scheduled day of volunteering (with 45 mile commute) and visiting a friend and her 3 kids.  I was out of spoons before visiting a friend and my baby fell asleep in the car so I went in to say hi/bye as she wasn't feeling well early.  But my oldest disobeyed and brought my little one inside and there was no way to get out of that without 5 boys tantrumming at the same time.  I had difficulty driving home due to fatigue.  I can get run-ragged by sensory stimulation, maybe I overdid it worse than I thought and paid for it today?

Does this sound familiar to anyone?  Any suggestions what might have happened?  What I can do for self-care if it happens again? How to describe to a doctor?  What to test for at home or with upcoming diagnostic testing?

[BuffRockChick]

If you have HyperPOTS and this does *not* sound like anything you experience, that would also be helpful information for me.

[haugr]

I have had somewhat similar episodes.  With me, it seems like anything that triggers norepinephrine can end up triggering a lot more than it should.  So activity is one trigger, but anxiety can trigger an attack as well.  When I am feeling hyperadrenergic, I keep a close eye on my blood pressure and if it gets too high I take some clonidine to get it back down.

[SarahA33]

I'm sorry BuffRockchick that you experienced this.  As much as my POTS symptoms have improved over the last few years I still cannot stand. It triggers an adrenaline rush for me, probably due to the blood pooling. I wear compression socks 30-40 rather than 20-30. I also started using an abdominal binder which helps. Like Haugr mentioned I also have episodes triggered by anxiety. My doctor is pretty sure that I have generalized anxiety, but it's not for sure since my adrenaline (norepinephrine) levels come back so high. He did say it could be a secondary anxiety caused by primary symptoms also. I didn't have anxiety before I got sick, but I was always rather "jumpy" or easily startled.

This is a perplexing and difficult condition, especially because symptoms change frequently with no rhyme or reason. I hope you get some answers with a diagnosis. Most of us begin to improve then. I was re-diagnosed with POTS (hyper) at Cleveland Clinic and also Inappropriate Sinus Tachycardia. The symptoms can overlap so it made obtaining a diagnosis challenging. The good news is that after I was diagnosed with IST, I was started on Ivabradine and it regulated my heart rate. Take care, Sarah

[Finnmin]

My husband's POTS subtype is still uncertain, but my hunch is that he's got a postviral partial dysautonomic POTS on top of a pre-existing problem with adrenaline and norepinephrine, which makes him "hyper". Before sudden onset POTS he was hypersensitive to sounds and stress, his pulse and blood pressure shot up from littlest setbacks in life, so now his normal personality combined with POTS makes a disaster! 

Whatever your diagnose will be, I think it's good if you're at least most of the time aware of the physical reasons behind your emotional experiences: you can make a rational decision to lie down and wait for a better mood, you can plan ahead and stick to the plan rationally. My hubby doesn't have such self awareness... I have to ask him to lie down when he's raging in his worse sickest feeling, or when he's hyperactive due to adrenaline (payback time later, not good).  He comes back to his senses in 10-30 minutes, exhausted, and if he continues to rest, he becomes sleepy. He says that he realizes what happenes afterwards, but he can't learn from the experience, because he can't think straight during an episode! He talks clearly and never loses his words, he can come up with brilliant metaphores but he can't think what's best for him. It's scary.

He gets POTS attacks with or without tahycardia and with or without visible pooling, I believe it's the norepinephrine, and some other factor combined that does this to him. 

 

[BuffRockChick]

I used to have terrible anxiety (or "anxiety"?), but after 3 years of cognitive behavioral therapy, I'm fin on anxiety and only feeling the physical symptoms.  I used to have these episodes much more frequently when I was working in jobs that were primarily standing up and when I was in a bad marriage - back when my anxiety was bad and before we moved to a quieter location.  No neighbors, no street noise, no TV.....  :bliss:

What do you do for self-care?  How do you take the edge off?

I saw some people mention Benadryl?  I'm willing to try it, unfortunately didn't have any yesterday.  I seem to NEED absolute quiet, but that's hard with kids!  
 

[Finnmin]

I give you my respect for being able to take care of your family despite of your symptoms. My husband has his own isolated room, he wears earmuffs around our kid, he covers his eyes when he rests and we too have moved to a quiet place, these are the "tricks" that we have learned to make it a bit easier for him. He refuses any medication, except for the blood pressure ones for now.

I take care of everything, so he gets his absolute quiet time and life without any obligations, but this hasn't improved his condition at all. I'm wondering if we're making his sensitivity even worse...

[BuffRockChick]

When reading about chronic illnesses and chronic pain, I've seen quite a bit about reducing secondary gains.  In other words, we can become conditioned to experiencing symptoms in order to gain...  time off, sympathy, etc.  It's a bad trend for several reasons, but one is experiencing more symptoms than necessary.

My husband works hard and provides our financial needs.  He does most of the cooking too, but that wears on him.  When I've worked outside the home, I've been so nonfunctional at home that he thinks it's not worth the extra paycheck.  I've minimized my obligations as much as possible.  I had one thing I volunteer for, but the meetings are virtual so I really can "attend" from bed if necessary.  I've been purging hobbies, possessions, anything I need to make decisions on.  I got 3 months of normal half-day functioning after that, until I had a miscarriage about 2 months ago.

I can... request library books and DVDs for my kids.  I can lay upstairs and watch a documentary with kids (can't watch anything depressing, dramatic, suspenseful, or with advertisements).  I can lay on the floor and my toddler climbs on me, or do floor exercises while he mimics.  I can crawl around the house.  I can do food prep on a cutting board on the floor.  

And then other days, I can fake normal activity pretty well.  This morning has been fabulous!  My 10 year old is pushing buttons and I'm about to lose it and that will ruin my day .... the whole rest of the day, I'll be useless.  I'm seriously considering putting him in boarding school.  He is not a nice person to live with.

[cmreber]

For a long time I was able to mostly get my symptoms under control, at least enough to go about life in a fairly functional manner lol!  However, the one thing that I could never quite get a handle on was my anxiety and all of the mental and physical stress that came from that.  When it would be its worst, I would either have many panic attacks, or I would be incredibly short-tempered, and I would spend a lot of time removed from people, noise, etc.  Unfortunately, my husband and I own a business and our office person was out due to medical issues, so I had to muddle through most days.  I eventually talked with my doctor and we decided to give Zoloft a try.  Everyone is completely different, and I don't think everyone should just jump on another medication (I mean, most of us are on enough as it is!), but it seriously changed my life.  I have read a lot about SSRI's helping HyperPOTS people, and I honestly think this was the missing piece for me all these years.  I have probably only had one major panic attack in the year I've been taking it, and my husband has mentioned that he feels like I am truly back to my old self again.  I agree, because I FEEL so much more like my old self again!  I do know that there are lots of dietary supplements that are helpful for anxiety as well, to keep away from the medication route.  

[kalamazoo]

I have severe panic attacks, have for years, not as much now as I've learned to control them. But when I get nervous, say if I'm coming to a stop light and don't notice how close people are and have to slam on my breaks or something or if i have to present in front of people i get a little bit nervous but then it's like a rush, a flood of a panic attack. I can feel it, it just releases and my body feels weird and it's hard to breath and my heart starts pounding out of my hearts and i get shaky etc.

[Janesays]

I just found this thread from a couple years back in my search. Wondering how you all are now. I was Dxed in 2018 with POTS (likely Post-viral, elevated Epstein Barr) but suspected EDS as soon as I started reading about it. That was confirmed by PT and it was explained to me that people with underlying joint hypermobility were more vulnerable to post viral POTS for whatever reason.

Since about September or October last year, I have been very gradually improving from what felt like death back up to neutral. By February I was having some great days each month. Most of my symptoms have concentrated around the 3 weeks of the month that I'm involved with my period. Before, during, after.

I think I am experiencing the regression of summertime. Yesterday I had a sensory storm, and I was so frightened. I have not experienced one like that in several months. I had a very busy morning, with a lot of driving, and being in the heat. I just got a wild idea that it would be fine for me to go out garage saling on a summertime Saturday. I waited way too long to have lunch and then overate, too. I know not to do that, but I just didn't plan ahead for once. I usually have my arsenal if helping supplies, ice and water and so on. I began having tachycardia and congestion in my chest on my drive back to the house long after having eaten. I knew it was building up and it did crescendo. Racing thoughts, irritability somewhat, but more weakness and confusion, and a mild headache. Blood pressure was very low. My episodes are a little bit like a seizure. I've had some mild reforms through these past months managing but this was kind of bad one. I had much more deep and horrible extremes of this in 2018, when I was first getting diagnosed (12 ER trips in 2018), but I am not totally textbook. I have a pre-syncopies and syncopes rather than true fainting. But I'm at a point where that mostly just comes up in luteal phase and throughout my period. And it starts with a tachycardia that goes up... Then comes down and goes up a little higher and then comes down and goes up a little higher even still until it sort of crescendos and then gradually resolves in an hour or two but I feel wrecked and exhausted afterwards, rapid thoughts and so on. The highlight here is that I begin with agitation and overstimulation, overheating or stress (arguing kids, loud noise, TV)....But again 80% of the time I'm really well managed. I have built up some resilience it seems. But if several negatives happen at the same time.... This episode seems to have a starting stop so I did wonder if it was something allergic. I wondered that way back when as well. When any of you have episodes Are they somewhat explainable or entirely random? What happened yesterday just seems to be the way my body defaults. Another words the forest of my body has been well plowed and tachycardia storms, but maybe it's something else?? It's been a loooong time since I had a total storm like that. But it was really scary. My husband and kids went to an event that I had planned to attend, and I went ahead and had one of my neighbors come over and sit with me who is one who took me to one of my many ER trips so she knows my story. We had a good visit and I had several tachy waves coupled with hot flashes while she was here and it was coming down. I just quietly kept on a conversation and rested and we wrote it down. I see my specialist on Tuesday.

I haven't been on here in a long time, but I did this search for tachy storms and I knew it would make me feel better by possibly connecting me with people who may relate. Anyway, I stumbled across this and just totally  wanted you all to know even after all this time that you are not alone either. I'm so happy that I'm doing better overall. And I'm here to encourage anyone who is sure that these symptoms will never go away, that's for sure. But sometimes I get so exhausted. POTS management and self treatment is a bit like trying to live life while simultaneously holding a huge beach ball under water. I'm seeking some ideas on how to make that beach ball... Maybe let a little air out of it somehow! ☺️ It's like the very work of managing my illness makes me sick at times! Can anyone relate to this? 

[Pistol]

11 minutes ago, Janesays said:

I have a pre-syncopies and syncopes rather than true fainting.

Hello @Janesays - I am so sorry you are dealing with this again! First of all - syncope IS true fainting. I sympathize on several issues you brought up in your post. First of all: whenever I overdo something I will pay by  hving a relapse, sometimes full-blown. You mentioned you did not eat and then ate too much - Diddo! Although I rarely faint anymore I just had that happen to me. I had not been eating a lot and then had Pasta and Pizza in one meal and after 30 minutes passed out. --- I am suspecting that by being out all day and enduring heat, possibly not drinking enough, you my have gotten a bit dehydrated. That alone will cause tachycardia as well as low BP ( which will make you feel like fainting ). --- My experience with this is that REST and HYDRATION are the only way to get over this. Both of those will improve the tachycardia. And then - once you feel better - slow reconditioning. It may take a while but it works. Be well! --- And thank you for pointing out that we CAN improve!!!! Best wishes for  speedy recovery!