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Julyrose

never felt worse. :(

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I have POTS and EDS and other things. I'm 28. I have been dealing with this for many many years, but I have never felt so bad. I am not dehydrated. I am having lots of salt and hydration fluids. I am not anemic. I have been doing physical therapy to help tone and improve my myscle pump for two months. I simply cannot get a hold of my heartrate. I am fainting multiple times a week. I feel as though I have run a marathon to try and brush my teeth, or put on pants. I went to the ER Friday after fainting in the bathroom, falling on the side of the tub, badly bruising my ribs, and dislocating my right shoulder. My heart rate was 130 laying down, 180 sitting up. It calmed down with IV fluids, though my labs did not indicate any dehydration. Since then, I have recorded my heart rate as high as 217, and low as 42. It still seems very orthostatic, just far more eratic than its ever been. Please help! Is this just a flare? My GP is out of ideas. I am seeing a new cardiologist mid march, but have been evaluated by them repetedly in the past. My heart seems fine, and the heart beat is normal, just too fast or too slow.

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It sounds like you could be in a flare right now for sure - especially when the usual treatments aren’t helping you out :(. I wonder if having more IV fluids would be more beneficial to you? I’m sorry you are going through this right now. I hope you can take things easy so as to not injure yourself again. *hugs*

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Thank you for replying so swiftly and kindly. I have a 3 year old to look after, and my husband is out of town for work this week. This is terrible timing. 

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It makes it so much worse when you have to care for others as well as yourself when you are feeling so unwell. Having a child and being a mom is hard enough - let alone having POTS symptoms / flare. Having the fluids and salt will help you from getting worse I hope. If you aren’t able to be upright much just make sure to keep moving your legs / wiggle toes to keep the circulation goes. Just baby steps and little things you can do when you aren’t able to do much. Do you have a close friend or family member that could help you out while your hubby is away? 

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All close family are out of town, and two best friends are sick and have littles of their own. Its just bad timing. I guess if worst comes to worst, I'll just have to bring my daughter with me back to the ER. I really really hope it calms down or I can gimp along till hubby is home.

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Oh goodness that is bad timing for sure :(. At least you have a contingency plan if things don’t go well. I really hope you get some relief from your flare symptoms soon. I hope it helps to know you aren’t alone and there is a community of people here to chat / vent to :). POTS is an awful disease that has no rhyme or reasoning. Hopefully your little one will be well behaved for you (as well behaved as a 3 year old can be haha). *hugs*

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Have you ever had a heart holter monitor to check for SVT or other heart arrhythmias? 

They say to find the fastest your heart should go is to Subtract your age from 220 to get your maximum heart rate.

So if your measuring your heart going 217 that sounds like SVT or something similar to me. I had SVT and my heart would go up to 250. I could be wrong but I would definitely talk to your doctor about it! 

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10 hours ago, Julyrose said:

It calmed down with IV fluids, though my labs did not indicate any dehydration.

Dear @Julyrose - yes, most people that are in a POTS flare are not dehydrated but the IV fluids help for other reasons, one of them being that the extra volume "fills up" the blood vessels and that creates a more stable circulatory system. I t also helps to improve electrolytes and fluid balance in the body. Are you on any medications? Please do consider being seen - I also have been alone with my then 4 year old in a bad flare and it was scary. I ended up asking a friend for a ride and took my daughter to the ER with me to get IV fluids. After that I was well enough to make it. Best of luck!!!! 

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Do you have any Pedialyte at home?  I found that salting my food and drinking lots of water does not help much, but having some of that salt and water as Pedialyte (or a DIY recipe) makes a huge difference for me.  Plus I'm on Florinef, which helps to bulk out the blood volume.  I'm sure that's part of it, too.

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My word! Thank you all so much for the responses! This is clearly a wonderful community. 

I have had a few holter moniters actually. Heartrate averaged 111 with max at 153 I believe for the only one I remember the results of.  I am not on medicine for the POTS. I have idiopathic intracranial hypertension, so the meds that boost blood volume are contraindicated, and moderate asthma so no beta blockers. I am scheduled to see a cardiologist in a few weeks and am willing to try something new. I have been drinking salted, diluted gatorade all day and felt a little better, also I was able to rest while my daughter was in preschool. This evening, my throat is becoming increasingly sore and I feel like I'm coming down with something. Maybe my body was trying to fight off whatever bug this is?  Or, I'm so overdone from the heartrate stupidness that I'm run down and niw sick. Either way, my husband will be home saturday and I feel much more prepared to get through till then. I'll update tomorrow. Really and truly, thank you all. I was feeling so isolated and afraid. Your understanding gives me strength.

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4 minutes ago, Julyrose said:

I have idiopathic intracranial hypertension, so the meds that boost blood volume are contraindicated, and moderate asthma so no beta blockers. 

It might be beneficial to ask about Ivabradine to control your tachycardia. I also cannot take beta blockers so my cardiologist suggested Ivabradine, and although it took a few months to find a good dose, I feel much more regulated (HR wise anyway) with zero side effects from it! On top of that, I take Clonidine to control my blood pressure. 

Best wishes. 

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7 hours ago, Julyrose said:

This evening, my throat is becoming increasingly sore and I feel like I'm coming down with something. Maybe my body was trying to fight off whatever bug this is?

Hi - this is exactly what happens to me: the POTS gets worse a few days before I get sick. I do believe that in the 2 days or so before a cold or viral infection the immune system is acting up, this causes the body stress and we get symptomatic ( my own theory ). --- I am glad to hear that you are doing a bit better - be well!!!!!

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I have the same pattern: I'm relieved when I finally do get the cold or other infection because it explains my worsening and tells me that I could go back to my baseline once that's over.

 

Also, I have pretty bad asthma, and do well in metoprolol. Some beta blockers are very specific and don't affect the lungs as much.

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I feel off today, like I'm fighting off a bug, but nothing definitive. I was so POTSy today though that after I ate some soup for lunch, I had to crawl from place to place in the house. Horrible postprandial hypotension. I just can't risk fainting again and getting more hurt. Hubby home in an hour or so. Counting down the minutes...

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it is unusual that you have high blood pressure in your brain but keep fainting at the same time.  Usually people faint when there isn’t enough blood getting to the brain.  Have you had your blood volume tested?

if meds that boost blood volume aren’t allowed you may want to ask your doctor if you should be increasing your salt intake.  The purpose of the salt is to increase  blood pressure and blood volume.

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12 hours ago, Julyrose said:

, I had to crawl from place to place in the house.

I know that feeling Julyrose! I would have to crawl to go to the bathroom or else I would faint!!! For me it was never possible to wait it out - once I got that sick my PCP put me in the hospital for IV fluids. All was well after the first bag!!!! Today - thanks to weekly IV's - I no longer get that bad. Thank god your husband will be home soon! Take care - and seek treatment!!!!

 

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10 hours ago, yogini said:

it is unusual that you have high blood pressure in your brain but keep fainting at the same time.  Usually people faint when there isn’t enough blood getting to the brain.

I have hypertension whenever I faint/ take seizures. In my case excessive sympathetic activity constricts all the blood vessels ( hence hypertension ) but there is no blood flow to the brain due to the vasoconstriction. 

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That sounds horrible Pistol! I'm so sorry! 

I notice a huge change in my orthostatic symptoms depending on how my shunt is functioning (it is supposed to divert CSF to my abdomen if the pressure in my head exceeds a set point). When my shunt is over draining, I get WAY more POTSy, i theorize because of the excess plazma volume needed to keep up with increased CSF production, makes me more dehydrated. When it is under draining and my pressure is too high, my numbers are better, but I feel worse in general because the high pressure gives me terrible extra fatigue and nausea. I am going to see my eye specialist who manages my care for that this week to see if a shunt problem is causing this flare up (though I desperately hope not, as that would mean another brain surgery, minor though it is, still a set back for recovery). 

On top of this, I was diagnosed with Lupus early this year. All of my conditions can cause/exasserbate the POTS. It is increadibly hard to ballance. Of all my issues though, POTS is by far the most debilitating and has the highest negative impact on my life. The fact that it is so common, and yet so few people know about it, let alone understand the devistation it can cause, is outrageous. You are all amazingly strong. Thank you for your kindness. Most doctors are overwhelmed by me. But isolation can cause even more suffering than this disorder in and of itself. You help me feel community.

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6 hours ago, Pistol said:

I have hypertension whenever I faint/ take seizures. In my case excessive sympathetic activity constricts all the blood vessels ( hence hypertension ) but there is no blood flow to the brain due to the vasoconstriction. 

Julyrose said meds that expand blood volume are contraindicated for her and that she adds salt and drinks gatorade.  Those have the effect of expanding blood volume.  That's why I suggested that she coordinate with her doctor. 

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So I saw my rhumatologist today for follow up. My Lupus is clearly flaring, so I got 125mg steroids by IV. My bp is already up from it. My resting heartrate is higher, but I feel better. When you have POTS in addition to other chronic illnesses, It can be very hard to suss out what is flaring what. If I feel radically better in a few days, then this time, we can assume the Lupus was flaring the POTS. I loathe steroids, and have some complications with the intracranial hypertension when my BP is elevated from them, but as it is short term, my doctors just moniter it closely.

Thank you all again.

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On 2/7/2019 at 10:53 PM, Julyrose said:

My word! Thank you all so much for the responses! This is clearly a wonderful community. 

I have had a few holter moniters actually. Heartrate averaged 111 with max at 153 I believe for the only one I remember the results of.  I am not on medicine for the POTS. I have idiopathic intracranial hypertension, so the meds that boost blood volume are contraindicated, and moderate asthma so no beta blockers. I am scheduled to see a cardiologist in a few weeks and am willing to try something new. I have been drinking salted, diluted gatorade all day and felt a little better, also I was able to rest while my daughter was in preschool. This evening, my throat is becoming increasingly sore and I feel like I'm coming down with something. Maybe my body was trying to fight off whatever bug this is?  Or, I'm so overdone from the heartrate stupidness that I'm run down and niw sick. Either way, my husband will be home saturday and I feel much more prepared to get through till then. I'll update tomorrow. Really and truly, thank you all. I was feeling so isolated and afraid. Your understanding gives me strength.

I take metoprolol which is a cardiac specific beta blocker. Talk to your pulmonologist and see if they can suggest something. My pulmonologist is who recommended the metoprolol. I don't have asthma but my main symptom is breathing issues and the propranolol they started me on made it worse. 

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thanks! I have a running note going of things to ask/see if i can try. I feel so much more hopeful when I am in a state of action. It may work out, and it may not, but it feels good to fight!

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