How To Treat Major Pots Flares?

[weathermandj]

Every once in awhile, I'll get a major POTS flare where my HR gets to 200 bpm and above. It's hard to stand up and walk. This HR occurs while sitting or lying down and only gets worse when I stand up. Totally out of breath, etc. Is there a special pill my doctor could prescribe me to take when this happen to get my HR under control? Or should I dial 911 when this happens? My family doesn't want me to dial 911 when this happens and I don't know the course of action I should take and if any treatments for this exist. Plus, I wanted to get answers for this because summer is coming up and my POTS gets worse in the summer. Thanks.

[badhbt]

Have you ever tried a beta blocker?

[Guest Alex]

Daniel,

ever considered any alternatives to pills? From what I'm reading you're already taking some pretty heavy duty stuff.

Also, I'm a bit confused. You stated that: ' this HR occurs while sitting or laying down and only gets worse when I stand up' Am I interpreting this correctly? Your HR is 200 bpm lying down and you are taking 200 mg Metoprolol, 0.1 mg Florinef, and 7.5 mg Midodrine a day? Have your drs confirmed that this is normal synus rhythm? How's your BP when this happens?

I don't want to scare you but if I were you I'd call 911.

What's your POTS'dr take on this?

I don't honestly know what to suggest here, but here are some things worth exploring.

Extra hydration, saline IV, deep breathing, meditation, yoga, aromatherapy, cognitive behavioral therapy I know it may sound silly, but at times the non-traditional approaches may work better. I remember being on 12.5 mg metoprolol (1/16 of what you're taking) and feeling like I couldn't lift my head off the pillow.

Best of luck,

Alex

[Guest Alex]

me again...

random question: ever checked interactions between the meds you are taking? Www.drugs.com is a good site for that as well as for possible side effects - worth looking into...that's a lot of meds you're on and while i'm sure they help you, it may be worth spending some time looking for more 'natural' alternatives.

Can you tell I don't'like pills?

Alex

[weathermandj]

@badhbt Yeah, I'm on Metoprolol Succinate 200 mg PO QD. Was taking Propranolol ER 160 mg PO QD before the Metoprolol. I like Metoprolol best.

@alex74alex Yeah, I can tell you hate pills. lol

Usually my BP shoots really high when this happens. Paramedics have been called in the past. SVT came up before on the monitors, however they never have told me anything abnormal is going on with my heart rhythm. Yes, 200 bpm laying down. Last summer the paramedics even recorded 170 bpm laying down on the stretcher. My family is just so tired of me dialing 911 when this happens. I get yelled at for calling it when this happens. And I'll even wait an hour before calling 911. I don't understand why they're so against me calling, but this happens 3-4 times a year to me. My chest will get tight, BP shoots up, and fast HR. It's nearly impossible to walk when this happens. I'm too weak to stand up and my HR then starts going higher than 200 bpm when I stand up. I'm honestly scared about it because I don't know when the next time it's going to strike and I don't know if there is a treatment I could take when it happens so I don't have to use 911. I take the Florinef and Midodrine too and this still happens a few times a year. I am always skeptical with natural stuff because most of the time it's not strong enough. I've tried natural supplements for anxiety and I'm currently in CBT therapy and exposure therapy for my anxiety and OCD. I just don't notice a big difference with it. When I get these attacks, deep breathing hasn't helped. That is one natural therapy I've tried. Up to now, I would give it an hour to go away, and it usually doesn't go away and after an hour I dial 911. It's to the point I'm so weak that I have to crawl on the floor.

Anyone else get these "attacks"? I thought it was just POTS. Am I alone with this?

[weathermandj]

I do want to add that IV saline helps me. That's natural from what you said.

[spinner]

Youre in a difficult situation but do you have any options? Financially?

Living in a much cooler environment might help, and especially the ability to live in a cold room.

Also, rather than ambulance trips, an apartment eventually close to a major trauma center? Something within 10 minutes where you could avoid what i call the being carted off syndrome.

Surely a POTS center like mayo can prescribe something to control this event when you feel a flare coming on.

My prayers are with you.

[Kellysavedbygrace]

Occasionally I get HRs between 180- 200 (hit 200 twice and have had 6 experiences like this the past year.) All have been associated with either an adrenaline surge/stressful situation or a hot shower. Like you described at that point I'm hyperventilating and have difficulty standing. In my case the extremely high HR is reduced by lying down. I might still be tachying after lying down and might still feel awful a while but wont stay in that high range.

In POTS, lying down should improve your cardiac symptoms. (may not make them immediately all go away as your body needs time to recover) if, however, you have no improvement in symptoms while lying down I'd question whether POTS is the correct diagnosis.

An unlikely, but possible situation you might want to have your cardiologist rule out is an accessory pathway in the heart. In rare occaisions this can be going on as well causing the high HRs. It can be ruled out with a heart monitor.

I ditto Alex's suggestion to check with your pharmacist about possible reactions to the many meds. I imagine, like you, I have many different docs prescribing different things so I've developed a good relation ship w my pharmacist and ask his opinion before starting a new med. Docs don't tend to be strong in this area but pharmacists are trained to recognize possible interactions or possible overdosing in drugs of a similar class.

As far as calling 911- This is a judgement call. It's hard because what I often experience during a POTS crash FEELS like I'm dying so I want to get help. The reality is, if I go to the ER what are they really going to do? Run a few really expensive tests, give me a bag or two of saline and tell me they can't find anything wrong? And the reality is, I'm not dying, it's just the Dysautonomia.

So that's what I do. I lie in bed, sometimes crying in misery, and tell myself- "I've felt like this before. I have Dysautonomia. I'm not dying even though it feels like it.". Now if I were to experience a different symptom- new- like throat closing up, severe chest pain (beyond what I've experienced before) or other new symptom I probably would call 911. But chances are, you are not dying- it's just Dysautonomia.

When I'm crashing- I give into it. Often will spend two days in a quiet dark room flat on my back pushing salt and fluids and watching Netflix. If I'm not better in 2 days I go into my docs clinic for 2 liters of saline. (I do that about 1 a month.). So I crash a lot. (my BP and HR are erratic- sometimes high and sometimes low.). I try my best to relax and not worry. God bless. -K

[Guest Alex]

I do want to add that IV saline helps me. That's natural from what you said.

ha ha, not natural, but not exactly like a pill with potential side effects either.

Maybe you should convince your dr to give you a rx for regular saline infusions if you find that to be beneficial for you?!

The reason I mentioned the drug interactions is because I was started on may meds at the same time, then changed some (like so many others here) and it wasn't until I weaned myself off some of them that I realized that some of my problems were due to meds and/or meds interactions. It's probably worth having a conversation with your dr or pharmacist over this.

The BP spikes along with the chest tightness - if they happen when lying down, they could be from the midodrine - they were in my case ...something to keep an eye on maybe?!

Best of luck, and keep us posted

Alex

[weathermandj]

Thanks @kellysavedbygrace and @alex74alex. I appreciate the added info and suggestions. I did wear a heart monitor and I've had two doctors, including one that Cincinnati Children's Hospital Genetics Dept. recommended, tell me that I have POTS by the looks of what was happening on the Holter Monitor test and the TTT I had was positive for POTS. My HR usually goes down when I lay down (and did on the TTT), but shot up when they tilted me up. That's what usually happens. However, 3-4 times a year or so, I get incidents of this high rate while laying down as well as standing. Keep in mind my HR does go down to 200 bpm laying down and goes up past that if I stand up, which is difficult. So that's still POTS I would think if it's going up when I stand up. Unless I have POTS AND another thing going on that hasn't been caught yet. Structurally, my heart looks fine. Echo was fine. Maybe it's just autonomic dysfunction causing all of this; making my body do whatever it wants to my HR.

I'll keep my eye on the Midodrine thing you're talking about alex74alex. Normally, my BP is normal (taking heart meds), but I do get spikes here and there, including lying down, on isolated incidents. I'll ask my Pharmacist about interactions and see what he says. The only problem is that I need a beta-blocker for my high blood pressure (I have hypertensive POTS) and high HR, the Florinef for the POTS, and the Midodrine, all of which I believe helps me quite a bit, even though I get these attacks still. The others help me with sleep and POTS. Tramadol is helping POTS quite a bit. Stopping that causes me to get POTS flares all the time. IDK, I shall talk to the Pharmacist. They know more about meds than doctors in terms of interactions and side-effects.

[Guest Alex]

Daniel,

check out www.drugs.com - they have a drug interaction checker.

I made a list of all meds you're on - out of curiosity - quite eye opening as the interactions between tramadol, trazodone and mirtazapine look EXTREMELY similar to the sx you're describing (and that's just the tip of the iceberg). I got a similar reaction -shooting HR and BP - when I was given tramadol for headaches - it was horrible.

Do look it up, then talk to your dr or pharmacist, or better yet both of them!

Alex

[Tobiano]

Weathermandj, if you figure out how to stop these episodes once they have started please let me know. I'm at a loss right now of what to do. During a major episode, my HR is usually 170-180 lying down with a host of other symptoms. I'm having a bad week right now and I have crashed like this several times since Monday. Things that seem to help right now are elevating my legs and trying to cool down with ice, however I don't have any medical interventions in place yet that get my HR down.

[weathermandj]

I looked up some of the interactions. My doctor said that Serotonin Syndrome is rare, plus I started getting these "POTS attacks" or whatever I should call them lol, before I started those meds. Tramadol actually helps my tachycardia. If I miss doses of Tramadol, I am in big trouble with my POTS to the point I'm almost bedridden. That's how much Tramadol is helping me. Issie is another who is helped by Tramadol. Then the Trazodone and Mirtazapine help me sleep. So it's difficult to stop those meds. I can talk to my doctor but he has a hard time finding sleep meds that work and we got it down to what I'm on now. I get an attack and it lasts only a few hours and is gone afterwards for maybe 3-4 months before it happens again. I kind of doubt it's Serotonin Syndrome because why would it go away in about 4-5 hours after it starts and not come back again for a few months? Serotonin Syndrome, from what I've read on it, escalates to more severe symptoms if the meds causing it are not discontinued immediately. My body temp is normal as well. I'm concerned about the heart rhythm interactions listed below.

ondansetron ↔ alfuzosin

"Using alfuzosin together with ondansetron can increase the risk of an irregular heart rhythm that may be serious"

That is actually something I need to look into. I can see stopping the ondansetron/Zofran. I just started Zofran in the past month and have not had an episode since starting it, so I know this can't be causing it. But, I think I'll stop the Zofran because this could become a problem in the future.

trazodone ↔ alfuzosin This is one that may be a problem, even now. I dunno for sure. But it says irregular heart rhythm with this combo. I will talk to doctor about this. Trazodone seems like it may not be a good fit for me. metoprolol ↔ midodrine Using metoprolol together with midodrine can affect the rhythm of your heart. Need to talk to doctor about this one too.

Thanks for suggesting looking this up on Drugs.com. It has helped me. Thank you.

[weathermandj]

Weathermandj, if you figure out how to stop these episodes once they have started please let me know. I'm at a loss right now of what to do. During a major episode, my HR is usually 170-180 lying down with a host of other symptoms. I'm having a bad week right now and I have crashed like this several times since Monday. Things that seem to help right now are elevating my legs and trying to cool down with ice, however I don't have any medical interventions in place yet that get my HR down.

I'm so sorry to hear you're having the same issues as well. I know how scary it is. I will for sure let you know if I figure something out. In the mean time, have you done a med interactions check on drugs.com? Just curious what interactions you might have. I listed some of mine in my previous post. Just curious, have you asked your doctor about these episodes?

[Tobiano]

I'm still under investigation. I'm waiting for the results from a holter monitor that caught one of the major episodes. I will also be seen for full autonomic testing at a specialty clinic within the next few months... I'm so hoping that I will have more informaion after that. Have you had full autonomic testing?

[ramakentesh]

If you get large tachycardic surges while lying down as high as 200BPM that is a little unusual. Do you feel shaky and have adrenalin when this happens? if so this MIGHT be an autonomic storm. Treatment is usually suggested as clonidine although someone claimed that a NO patch helped them a lot with this. I get adrenalin surges only when im very bad and very dizzy.

it could also just be inappropriate sinus tachycardia which is different from POTS.

[weathermandj]

I have not had autonomic testing @Tobiano. Let me know how your testing goes!

@ramakentesh I do feel shakey, however I feel extremely weak. I think there's adrenaline, but so much weakness and fatigue at the same time. Question...Can someone have POTS AND Inappropriate Sinus Tach?

[weathermandj]

This sounds EXACTLY what is happening to me:

"Sensory Storms"
Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFIDS epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a "sensory storm." These storms affect the autonomic nervous system (regulated by the hypothalamus). A person experiencing a storm may first see an aura or sense that something very bad is about to happen. Storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These autonomic storms are terrifying, but the effects generally pass within an hour. After such an experience a person may feel lingering tiredness or malaise...

People who have warnings of impending seizures or seizure-like episodes, either in the form of a rapidly escalating sense of urgency, surges of strange sensations, intense fear or rage, "spaciness", or any kind of sudden perceptual disturbances can sometimes prevent their full manifestations by immediately withdrawing from all sources of stimulation and entering into a relaxed state through meditation, relaxation exercises, or self hypnosis techniques. This has the effect of changing the brain wave frequency to alpha waves.

[angelloz]

I just ran across this when checking on something elae and must say the sensory storm sounds exactly like what I go through...and it is absolutely terrifying.

If I have one..I am more prone to have it happen with some frequency. If I can break the cycle I can go for a period of time without this happening.