Strange Episode...thoughts?

[RobinB]

Hi All,

I was diagnosed with POTS 4 years ago, been sick for 9 years total. I have the usual rapid heart rate when upright and other fun stuff . Overall I consider myself lucky as I am able to push through and do most things aside from anything physically strenuous. For example I can clean the house in 10 minutes intervals with breaks in between etc.

Today I woke up feeling strange (what’s new) and suddenly felt very odd. My pulse was normal when standing 100ish (usual is 140). I took my blood pressure which was 154/98. Very high for me. I rested and couldn’t squash the feeling that this is not okay. Decided to take a shower and see how I felt after. I’m in the shower for probably less than a minute and my whole body was shaking uncontrollably. I felt like I was going to die. I was home alone with my son and was freaking out. I stopped my shower and got out and got dressed. I called 911. They came to my house and got a resting pulse of 130 and BP of 160/100. They said it wasn’t alarming but if I wanted to go they would take me. I should also note that my right side of my body felt tingly from head to toe. I couldn’t leave my son home alone or take him with so I let them leave. My sister came over and we decided to forgo the hospital. I’m feeling physically and mentally exhausted. Within 20 minutes of the paramedics leaving my BP had gone down to 111/72 and my pulse 80 resting. 
 

Does this sound like a panic attack? Or should I be more concerned. I’m already afraid this will happen again!

Thanks!!

[Guest KiminOrlando]

I think you should call your doctor in the morning so they can advise you. People with HyperPOTS can have that happen. I don't know if that is what happened with you. I have had a few episodes that sound like that. They can be scary, especially when there is a child and you are responsible for their care. 

That also happened when I was taking Northera and was why I was taken off of it. 

I seem to fluctuate between low BP and high BP. I used to only be low. It could be a new symptom for you.

Hope you get it figured out.

[RobinB]

Thanks! I am just really scared of it happening again or it being something other than POTS. I tend to blame everything on POTS and I worry that one day I’ll make the wrong call. I’m 33 if that matters at all. BP is fairly regular at 110-120/80 or so. I spend most days alone with my son and now I’m afraid to be alone.

[Guest KiminOrlando]

I know what you mean. I had a friend move in with me because it didn't seem smart to be alone. There is a home ekg device that pairs with your phone so you can get a quick medical grade ekg during these episodes and email them to your doctor. Maybe your doctor would think that is a good idea for you? I think they are typically about $100. I haven't done that, but I thought about it.

[Sushi]

1 minute ago, KiminOrlando said:

I know what you mean. I had a friend move in with me because it didn't seem smart to be alone. There is a home ekg device that pairs with your phone so you can get a quick medical grade ekg during these episodes and email them to your doctor. Maybe your doctor would think that is a good idea for you? I think they are typically about $100. I haven't done that, but I thought about it.

I have one--it is called Kardia or AliveCor. It is FDA approved and you can buy it on their site or on Amazon--no prescription needed. If I have something weird like that happen I take a quick EKG and email it to my electrophysiologist. It also does a computer readout that says "normal," "tachycardia," "bradycardia," "unclassified," or "possible Afib." You can also pay a small fee and get a doctor to read it. They usually get back to you within an hour. But my marvelous electrophysiologist gets back to me in minutes!

[MTRJ75]

The attack mentioned in the original post sounds so familiar. On occasion something very similar has sent me to the ER. It can be a very scary decision to have to make (I have a dog who would be alone if I were away for any length of time) and I've had entire weeks, maybe even months where I felt like this was a decision I had to make every single day.

If it helps though, yes, this is very consistent with what I have dealt with often over the last few years.

[Pistol]

@RobinB - yes, I have these episodes that you describe, I have hyperPOTS. I used to get them frequently, and in my case they usually lead to autonomic seizures. I would get shaky, heart racing ( 150's ), BP 160's/110's with left sided chest pain radiating into my neck, sometimes fingers numb. Hands and feet would get ice cold. If I did not - or could not - lie down I would either end up fainting or have what appears to be a grand-mal seizure, has been proven to be autonomic in nature though. These events have been often caught on monitors and even on EEG. In my case they are caused by a sudden and severe dumping of norepinephrine ( adrenaline ) into the blood stream, sort of like shock. 

I agree with what others have said - definitely check with your treating physician tomorrow and describe the event and Vital signs. When I started having these episodes they ordered all types of tests, which led to my diagnosis. It could be something else potentially, that is why they need to investigate. It is certainly not common, so they may initially look for other reasons - and they should. 

Hopefully this was an isolated incident and will not repeat itself. I know how scary it is, especially when you don't know what is happening. I taught my then 4 year old daughter to dial 911 if I "went to sleep on the floor and have funny dreams like the dog". 

[Nin]

I have pots but not sure yet if hpots. My blood pressure is generally on the low side, but it jumps up like you described. When this happens I start shaking and I also have a siezure like pistol described (don't worry siezures are really uncommon). When this first started happening I was really scared but I know I'm not in danger now, so it's just annoying for me now. Funny when this happened the other day I put my legs on the wall and my blood pressure went back down within a minute. 

[RobinB]

Thanks everyone! Unfortunately I don’t have a POTS doctor at the moment (switched insurance last year) but I will bring it up to my cardiologist on Tuesday. The shaking was the scariest thing for me. I felt I would surely not make it out alive. I have never experienced anything like that before. I hate this disease. I admire everyone’s strength. Nobody can possibly understand what we go through.

[Pistol]

@RobinB - although I have a very good autonomic specialist my PCP and local cardiologist do most of the footwork. We work together as a team and only refer to the specialist if we are stuck. What helped me mostly medication wise is Carvelidol ( beta blocker with alpha-blocking qualities as well ) and Diltiazem ( calcium channel blocker to keep blood vessels dilated to prevent the episodes ). When I get flares I used to get IV fluids - they stop the episode immediately and also prevent them. I used to have a prescription for 1 l NSS over 4 hours as needed and would get them at an infusion center. It works like a charm, and IV fluids are a known and quite common treatment for POTS flares. I personally have a port now and get them weekly to prevent seizures, and have only had 2 seizures since, and both of them in surgery. 

Here are a few articles and posts about this - known but often overlooked - treatment. 

https://pubmed.ncbi.nlm.nih.gov/28185102/

https://santamariamedicine.com/2016/06/01/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

https://www.change.org/p/medical-community-make-intravenous-fluids-a-standard-treatment-for-dysautonomia

 

[RobinB]

@Pistolthank you for the information! I’m not medicated at all. I kinda got my diagnosis, felt like I couldn’t be helped and carried on but lately it’s getting worse (or quarantine has me paranoid again). I’ll definitely discuss this with the cardiologist. I’m trying to get into Mayo as well.

[Pistol]

@RobinB - could itbe possible that you were dehydrated? This could cause an episode like that for someone with POTS. 

9 minutes ago, RobinB said:

I’m not medicated at all.I kinda got my diagnosis, felt like I couldn’t be helped and carried on but lately it’s getting worse

I find that odd - you simply run around with a HR of 140 and the usual symptoms, and no one ever suggested even a beta blocker to you??? How do you function like that??? No wonder it is getting worse!!!! There is a lot that can be done, but it takes a while to find out what works for you.  IV fluids are probably premature in your case, since you have not tried medications yet. Good that you are trying to get into mayo, I am sure they will try something. Do you increase salt and water intake ( highly recommended for most POTS types )or wear support stockings? These self-help treamtnets are proven to be effective in most cases and can helps bring down your HR. 

Here is a web site that lists the most common treatments for POTS.

https://www.dinet.org/info/pots/pots-what-helps-r100/

 

 

[RobinB]

@Pistol  it sounds crazy when someone points it out like that LOL.  But correct.  I tried a beta blocker and florinef? years ago and had a bad reaction to both.  I'm extremely sensitive to medication so I have a fear of using any.  I know I need to just get over it.  To be fair I had a period of about 2 years long where my POTS was 80% improved with no real reason that I could attribute it to.  It's only been the last year that it has come back with a vengeance and now I'm scrambling to figure out some way to function again. On top of it I believe I have an anxiety disorder.  So now when I'm really symptomatic it sends me into a spiral and I freak out which makes everything worse.

I drink about 8 ounce of water before I get out of bed and then sip water the remainder of the day.  I would estimate I drink about a gallon of water a day or more.  I do however pee a lot so not sure I'm retaining much of it.  I don't measure my salt intake, but I do liberally salt my food when I can.  I don't have much of an appetite ever so I have to force myself to eat anything most days.  I also drink one 8 ounce Gatorade in the late morning everyday.  I just ordered some LiquidIV that I found on Amazon and will give that a try. 

[Chuske]

Anxiety triggered my recent relapse too.  Fits with the research article @issie shared showing the brain can get stuck in inflamed state after high or prolonged stress.

Hope you feel better soon I'm going through similar horrible attacks at times. Very scary.

[RobinB]

Just now, Chuske said:

Anxiety triggered my recent relapse too.  Fits with the research article @issie shared showing the brain can get stuck in inflamed state after high or prolonged stress.

Hope you feel better soon I'm going through similar horrible attacks at times. Very scary.

It is horrible!  I can empathize with you.  I think with everything going on in the world currently my anxiety has been at an all time high.  I'm a naturally anxious person and I would love to think that what happened to me yesterday was a panic attack and nothing more.  Fingers crossed at least.

[Pistol]

1 hour ago, RobinB said:

I tried a beta blocker and florinef? years ago and had a bad reaction to both.  I'm extremely sensitive to medication so I have a fear of using any.

@RobinB - this is also normal for POTS. Medication sensitivity is a symptom, and most patients have reactions to some meds when they first try them. I had to stop several after starting them, and I too am very anxious about trying new one's. But I have learned that if I want to get better I have to try. Thankfully we found the right combo and today I am much improved. However if you got better without meds before it hopefully will happen again. 

[RobinB]

I sent my primary doctor a message regarding the episode I had yesterday.  Hopefully she can help point me in the right direction.  I am ready to try some meds if need be.  I can't function like this anymore.  My anxiety is through the roof, every little thing sets me off it seems.  A knock at the door, a bird flying by, an email from a co-worker.  I feel like I can get so easily overstimulated and will have a nervous breakdown.  That's why I'm thinking my episode was some kind of panic attack, although I haven't had one in probably 12 years.  I'm going to start a journal so I can keep track of my sleep, eating, BP and HR readings, etc and see if I can come up with some kind of plan.

[Sushi]

23 hours ago, RobinB said:

My pulse was normal when standing 100ish (usual is 140).

 

7 hours ago, RobinB said:

I’m not medicated at all.

I don't know how long your HR stays above 100, but I learned on an Afib forum (lots of really knowledgeable people there) that having a pulse over 100 for a protracted period can damage the heart. So, while I totally understand your response to medications, a good cardiologist or electrophysiologist should be able to find a way to keep your HR down. There are many ways to approach this, so sending best wishes to get to the bottom of this. 

[RobinB]

9 minutes ago, Sushi said:

 

I don't know how long your HR stays above 100, but I learned on an Afib forum (lots of really knowledgeable people there) that having a pulse over 100 for a protracted period can damage the heart. So, while I totally understand your response to medications, a good cardiologist or electrophysiologist should be able to find a way to keep your HR down. There are many ways to approach this, so sending best wishes to get to the bottom of this. 

Yikes that's scary.  Um it stays at whatever it's at for as long as I'm upright....It may go down to like 120 or so if I'm walking around but not below 100.  Meeting with my cardiologist tomorrow.

I do have a question though....forgive me I'm not very informed on most of this stuff.  If it's dangerous to be over 100 then why is it okay for people to exercise?  Or is it the fact that I'm not exercising that makes the elevated heart rate dangerous?

[Pistol]

2 hours ago, RobinB said:

I do have a question though....forgive me I'm not very informed on most of this stuff.  If it's dangerous to be over 100 then why is it okay for people to exercise?  Or is it the fact that I'm not exercising that makes the elevated heart rate dangerous?

It is OK - and even healthy - to get your HR up with exercise. It is good for maintaining proper circulation and a normal BP. However in POTS we run tachycardia by doing nothing, and it can stay elevated for as long as we are upright. In my case ( I had many heart monitors in my bad years ) I would run 120's all the way up to 150's FOR HOURS while at work, b/c I pushed through. I had high BP at the same time. That is why I ended up with POTS getting so bad that I take seizures. I did not develop any heart problems from that, neither did I end up with problems from the extreme high BP's, but I contribute that to the fact that I was otherwise very healthy. 

[Chuske]

On 6/8/2020 at 5:44 PM, RobinB said:

It is horrible!  I can empathize with you.  I think with everything going on in the world currently my anxiety has been at an all time high.  I'm a naturally anxious person and I would love to think that what happened to me yesterday was a panic attack and nothing more.  Fingers crossed at least.

I think anxiety can be both a cause and effect in this. Symptoms cause anxiety which worsen symptoms. Sometimes slow breathing exercises can really help me as helps both anxiety and ANS dysfunction. It is not a cure but can help.

Some research suggests panic attacks only occur if you are breathing incorrectly ie into the upper chest, shallow and or fast.  If instead you can practice breathing into the diaphragm, slower and reasonable depth (although some like the Oxygen Advantage guy suggest reducing breathing depth is good) then it may well prevent a full blown panic attack.

Worth a try.

[Sushi]

20 hours ago, RobinB said:

I do have a question though....forgive me I'm not very informed on most of this stuff.  If it's dangerous to be over 100 then why is it okay for people to exercise?  Or is it the fact that I'm not exercising that makes the elevated heart rate dangerous?

As Pistol said, it is fine while exercising because it is necessary to the physiology of exercise and it is not sustained--it returns to normal after exercise. Sustained rates over 100 that go on for protracted periods are what causes damage. I don't remember what the cut off for "protracted" is, but your cardiologist should be able to help get your upright HR down. Note: professional athletes or people who train intensely many times per week (and thus have a high HR for protracted periods) are much more at risk for Afib.

[RobinB]

4 minutes ago, Sushi said:

As Pistol said, it is fine while exercising because it is necessary to the physiology of exercise and it is not sustained--it returns to normal after exercise. Sustained rates over 100 that go on for protracted periods are what causes damage. I don't remember what the cut off for "protracted" is, but your cardiologist should be able to help get your upright HR down. Note: professional athletes or people who train intensely many times per week (and thus have a high HR for protracted periods) are much more at risk for Afib.

That's very interesting!  I had my video appointment with the cardiologist today.  She prescribed metoprolol?  I did explain to her that I have medication anxiety as I seem to be very sensitive to everything.  She prescribed 25 mg and told me to take half in the morning and half before bed.  Obviously I'm nervous to even try it, however if I want some quality of life I have to give it a shot.  She had no comment on my episode Sunday, just said mmm hmmm and carried on.  Who knows.  I plan to start the medication when I can have someone with me for a few days just in case I have a reaction to it.  My body hates everything.  I have reactions to food, medicine, chemicals you name it.  Any experience with metoprolol?

[RecipeForDisaster]

I’ve been helped quite a bit by metoprolol. I started with 12.5mg at bedtime and I sometimes take up to 50mg at bedtime now.

[RobinB]

49 minutes ago, RecipeForDisaster said:

I’ve been helped quite a bit by metoprolol. I started with 12.5mg at bedtime and I sometimes take up to 50mg at bedtime now.

Thanks for sharing your experience.  My concern is that my resting pulse is usually mid 50s to mid 60s.  I'm guessing this medication lowers your pulse consistently and not just when you're upright.  I think my dosage is the same as yours actually.  I just want to be able to cook dinner and grocery shop again .