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AngieP

Pots Flare Up - How To Get It Under Control?

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Hi there,


I’m reaching out as my POTS symptoms are flaring up at the moment and I feel like I’ve lost control of my body.


I was wondering if anyone else finds that bad POTS episodes occur in clusters?


I’ve had three major attacks within the last 5 days. Tachycardia, chest pain, flushing, sweating, shaking, extreme nausea, dizziness, sense of doom...


On Monday night I begged my husband to take me to hospital. I felt like I was having a heart attack. Even though I’ve lived with chest pain for years and had my heart checked out, when it’s flaring up it’s difficult to believe something is not seriously wrong.


My husband managed to calm me down, and I increased my beta-blocker and took a valium which I don’t usually do.


In between the episodes I feel extremely nauseas, shaky and weak. It seems my digestive system has decided to stop working and I’m wondering if this could be contributing to the chest discomfort? It sounds strange, but I feel like there could be a correlation…


This bad cluster of POTS attacks come after a few months of pretty decent health – maybe that’s why I feel so shaken up.


I realise many of you deal with these horrific symptoms on a daily basis and my heart goes out to you.


If anyone has any tips on how to get your body back into balance after a flare up, I’d so appreciate it.


Thank you,

Angie


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Hi Angie,

I am really sorry to hear, what you have to go through at the moment...

I don´t have a "full recipe" to cope with flare ups - but I would what you need now ist rest, rest and again rest!!

If possible, avoid ANY stress triggering things (physical and emotional). This will definitely help to start a recovery from your flare!!

I send you much energy, but in first place confidence and a calm mind!!

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My GI tract stops as well and makes it very difficult to get in enough water and salt. Of all the symptoms, doom is the one I really hate and don't understand.

When I get like this (many times a week) I recline at a 45 degree angle and put my feet up. I do everything to stay cool and watch funny things to get my mind off of it. Ice water with salt in it is my go to. I just sip it. If your husband can massage your legs starting from the bottom and moving towards your heart, that might help. Life just has to stop until you feel better. Shoulds and should nots have to go out of your mind or you will "should" yourself into not getting better. If that makes sense.

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I have the exact attacks that you describe, so I feel for you! My attacks are triggered by most vitamins, supplements, and meds (seriously - I react to EVERYTHING, even antihistamines, multi-vitamins, artificial sweeteners, etc - even beta blockers started causing these episodes for me after I'd been on them about 2-4 weeks). I also get them from hydration issues, overstimulation / overexertion, viruses or illnesses, too much heat, or sometimes just a random overabundance of adrenaline that doctors can't really explain. I do get them in clusters, but very often the clusters mean I've taken some med, eaten something, or done something (or my hydration/blood volume has dropped too much) that's causing them.

When the episodes are severe or are due to hydration issues, I actually do have to go to the hospital, otherwise my heart rate will just keep going up and/or the episodes will just keep coming back. I am fortunate to live near a hospital that treats a lot of POTS patients, and when I go in and tell them I'm having a "POTS episode", they give me a couple liters of IV fluids and put me on oxygen for about an hour or two, which stops the attack completely.

If I'm treating the attacks at home, the first thing I do is drink boluses of fluids, instead of sipping (a trick taught to me by my POTS doc). I drink 16 ounces all at once about every hour, alternating between 16 oz water with salt + electrolytes added, and 16 oz plain water. I try to get 86 oz in 24 hours at least. Once the attack is over, I stop drinking boluses and go back to sipping. I also cut out all sugar, artificial sweetener, and simple carbs because those make me much worse - I eat pretty much protein and veggies during an attack.

I also increase my dose of benzo's (valium or klonopin) during these episodes, because my adrenaline levels are elevated pretty much all of the time anyway, and are super high during episodes. Sometimes I'll need anti-anxiety meds in my system continuously for three full days during and after an attack to kind of correct everything and get me feeling better. But obviously, you should probably check w/your doc before doing that if you don't usually take them that way.

I also need to rest lying down with my feet up in a quiet, dark environment. Heat makes it worse, so I actually have lower the temp in the house quite a lot - to the point where I actually feel a bit too cold. I avoid bright lights, activity, stimulation of any kind (too much talking, laughing, etc). I can tolerate watching TV (something that isn't action or horror, lol), or I'll read or do some other quiet activity to distract myself. I'll usually make sure to keep everything dark, quiet, and low key for a few days after the attack resolves as well. Often I'll stay in bed completely for a few days or until the cluster of attacks is gone.

I also do a lot of supine-only restorative yoga (yoga that is designed to balance the parasympathetic/sympathetic nervous system), and guided meditation/hypnosis every day to try and get things back in balance. Massage can also be super helpful (especially if it's concentrated on the feet) as that activates the parasympathetic system also, although if you have mast cell or lyme disease, massage can make it worse in some cases, so keep that in mind.

Well, there's my flare-up coping strategy. Hopefully there's something in there that will help you! Hope you feel better soon.

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Hi there,

Sorry you've been feeling so poorly.

It's possible that you're really exhausted and that "impending doom" feeling, if related to POTS, could be the adrenaline coursing through from too much standing/too many trips up and down (unless you have a heart condition, in which case you should have that checked out).

Sometimes it's good to rest while having an episode, but then get up and do aerobic exercise for 20-30 minutes (or whatever you can tolerate) a day (recumbent bike, walking, etc.), as long as it's allowed by your dr. Continuous movement, like 20 minutes of exercise, is much better than lots of little trips up and down (like doing laundry, dishes, crossing the room and sitting down many times, etc.). Obviously there's no way to avoid these things but it helps to know what brings it on.

Oftentimes when we have POTS episodes, we don't want to get up again, but if we don't, the orthostatic intolerance worsens. So as long as it's done safely (you sound like you have a supportive husband nearby), getting up and stretching one's legs can be good. Safely!

I know what you mean when you say GI is related to tachycardia...I always have digestive episodes with my POTS episodes. Lots of dietary sensitivities and such. And sometimes it's just random. Have you been tested for allergies/food intolerances? HAve you eaten anything different the past few days? Sometimes people keep a log of what they eat and see if they notice any triggers/patterns. For me, gluten, processed meat, raw vegetables, too much liquid dairy, and some artificial foods can set off my POTS. It can take a while to figure out, but it can be worth it in the long run. I take immodium a few times a month and find that it agrees/doesn't set off a POTS flare. It's nice to know there's something to prevent me from getting too dehydrated, so I don't pass out in the bathroom (not fun!). If you find yourself losing too much fluid, the people in the ER can give you an IV which may help.

By the way, I hear Sea Bands often work well for nausea. For some I think it even prevents vomiting (as long as you're not sick with the flu or something that needs to get out of your system...though even so, it may help the nausea).

Best of luck to you.

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My pots is also a waxing and waning type presentation.

Rest is important when acute. Hiting the salty liquids can help.

when i flare i find eating lots of healthy foods can help.

in the past licorice and now midodrine also help (talk to your doc)

Impending doom feeling is sympathetic overdrive being detected by beta receptors and the overdrive is usually an attempt to deal with reduced stroke volume and cerebral perfusion

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Hi there,

Many thanks for taking the time to share your advice. I really appreciate it. Just knowing that there are people out there who understand what it feels like to be in the midst of a POTS flare up helps. I'm not alone!

ks42 - it is funny you should mention vitamins/supplements as a possible trigger. I recently started taking prenatal vitamins and they did not agree with me at all. After a few days of stomach cramps I went off them, but continued to go down hill - perhaps they set off this episode. I'm also highly allergic to gluten and might of accidentally ingested it through cross contamination at a restaurant.

It sounds like our attacks are very similar. Like you I occasionally end up in hospital on an IV when my heart is going particularly bonkers.

Once again thank you everyone for the helpful advice and kind words. I was a sobbing mess when I wrote my post yesterday and your replies have really lifted me. I'll be giving many of your suggestions a go!

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Not sure where you live, but has the weather got a lot warmer? I definitely get so much more PoTsie when the weather starts warming up. If that's the case (this sounds obvious) but try to stay cool. If I let myself get overheated, that's it, I'm out!

Electrolyte drinks can really be a good help, some people use Nuun tabs, I like the GU Brew tabs as they have less artificial stuff in them, but anyway there's a big choice of different ones you can try. It's probably best to sip them slowly if you're having GI upset.

It's really hard going through a flare, just know we're thinking of you and hope you get through this soon.

Best Wishes,

Lyla

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In my case, Prednisone actually triggered POTS extremely.... Before I got Prednisone infusions in hospital, my POTS was almost not existing - after that, I never came close to how I was before...

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Yeah that does happen

And are there any theories, why Prednisone can do this? Can it probably even tell something about the underlying cause of our POTS?

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Google search 'coronary artery spasms', & 'prinzmetal's angina'.. They r the same condition with 2 names. Check the symptoms. Your episodes sound a lot like mine and I am pretty sure I have this condition.
Let me know what you think. U can PM me.

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Hi Emmyjewel,

My cardiologist has told me that it could be coronary spasms but is not 100% certain.

He prescribed me nitrolingual spray and I carry it around everywhere but I haven't actually used it. The side effects sound awful (severe headache and a drop in blood pressure), although I guess living with chest pain is just as bad.

At my last appointment, he said that he doesn't think the chest pain is anything to worry about. He said it could be the small veins constricting in my chest like they do in my hands.

I get worried about the pain because it signals the start of a cascade of symptoms for me - nausea, dizziness, weakness etc. I feel so ill when it comes on, but perhaps this could be adrenaline dumping into my system because I'm freaking out about my heart?

It's the vague response that I get from doctors, which is the hardest part to deal with. What I wouldn't give for a clear explanation of what is happening to my body when the chest pain occurs. I'm always wondering when I should go to hospital. I'd cope so much better if I felt safe.

The only comfort I get is that a lot of people on this forum live with similar chest pain and nobody is dropping dead. Well at least I hope not!

Thanks for getting in touch Emmyjewel. Wishing you good health.

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Angie, the connection between GI and your attacks is real. The Diaphragm muscle under lungs is like a hammock with 3 holes in it. 3 important systems run through these holes all close together neighbors; the Aorta, the vagal nerve and the Esophagus. And really throughout the body the vagal nerve runs close to the whole digestive tract. So at any time motility could back up causing blood to pool or just cause it to enlarge and press on the vagal nerve. This in-turn can suppress the vagal nerve and the chemical it releases AcHR. That chemical is what holds adrenaline in check. So it's like the brake line has been cut and then the your system is speeding up from all the NE (noradrenaline) building up. At those time you either need a med that reduces adrenaline like Clonodine or you need a med that stimulates the release of AcHR. It's important to take accurate laying BP at those times. Also chugging tons of water may help to release the blocked food. I would also see a Gastroparesis doc to get tested via emptying tests and Manometry. If you message me I will send to a GP list. Take care

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Angie, wondering how you are doing now? Still flaring up or are you better? Hopefully it's subsided!

I'm flaring real bad myself right now, for the past whole week. Never had one last this long. Freaked out.

Coming on here and reading others' stories helps. As Red Green says, "I'm pullin' for ya, we're all in this together."

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Hello Little Blue Jay,

I'm so sorry that you're going through a flare up too. It's really scary. You've just got to keep telling yourself that it will eventually pass. Staying positive is important, but also incredibly difficult when you feel so sick. I freak out too!

Like you my POTS symptoms wax and wane. I can usually tell from the moment I wake up if I'm going to have a good or bad day. I know I'm in trouble when my limbs feel very heavy and sore or I wake with chest discomfort.

I had a couple of okay days at the end of last week but ended up in emergency on Monday night which wasn't so fun. I usually ride out the bad episodes at home but I couldn't handle this one.

Today, I feel okay. Hooray! I'm still restricting my activities. For the last few days I've been lying on the couch working on my laptop or sleeping, and resting has done me wonders. I'm also living off lots of leafy greens and veggies and drinking heaps of water. No sugar, meat, complex carbs and I'm limiting dairy.

This flare up has made me realise I need to get stronger. So, I'm getting a recumbent exercise bike for home and will start pedalling as soon as I can, even if it's only for 10 minutes a day to start off with. I'm also going to try and stick to Ella Woodward's way of eating. Ella was diagnosed with POTS and changing her diet helped get her condition under control. I figure it's worth a shot :)

Be kind to yourself Little Blue Jay. Keep reminding yourself that your flare will end and feel free to PM me any time. Thanks so much for your support. You're right - we are all in this together.

Angie

Edited by SarahA33

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So glad you're doing better Angie!

I'm like you, I can tell from when I wake up each day whether I'll have a good day or a bad day. The last few days when I wake up, just the act of turning over in bed in preparation for getting up makes my heart speed up too much :o

Although it's occurring to me that this might be my anemia coming back instead of POTS. I'll try to go to the clinic Saturday morning and get this checked out. Eating liver in the meantime in case I'm on the right track finally.

I investigated used recumbent bikes on kijiji for my hometown and there was nothing under $200! So that idea went out the window (I'm only on welfare) Plus I'm moving soon and it'll just be a room so wouldn't likely have space for one anyway :(

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